Liking helps my self-esteem!

BoogeymanJolted out of my slumber. Sitting straight up I look around. I start to panic. There is a man there watching me sleep. I yell at him and try to make myself feel big. I clumsily clamor for the knife I know I have hidden under my mattress somewhere. Somewhere… Where is it? I feel like I’m going to hyperventilate. What is he doing in my room? Why is he just sitting there? Why doesn’t he say anything? Questions…

I start to wake up more. I slow my breathing. I ground myself. I concentrate on the sound of my heartbeat that is pounding in my chest. It is so loud, I wonder if he can hear it. I take a deep breath. I stand up. I walk past the man, watching him as I walk past. He doesn’t watch me go. I ritualistically flip on the light as I leave the room and head for the bathroom. I come back and he is gone. I sit on my bed, clutching my knees to my chest. Rocking myself calm. Blurry eyes, moistened from tears of fear. Rocking.

“It was just a night terror. It wasn’t real.” I repeat to myself over and over. I climb back into my covers and eventually calm myself enough to sleep.

My whole life, I woke in the middle of the night and saw things as clear as awake that were not there. It is common for children to be scared of the “boogeyman” that hides in the closet or under the bed so it was not uncommon that I too jumped over my bed to avoid what was under it, that my closet doors had to be closed for me to fall asleep or that I slept with the blankets over my head so that I couldn’t see them—the monsters. The difference was that I actually saw them—my imaginary fears looked as real as my parents. But to everyone else, I was a normal child with normal fears.

As an adult, for a couple years I even became used to seeing “people” in my room—sort-of. I would wake with the normal jolt of panic, watch the person for a minute and then lazily fall back asleep. I slept with a knife and a flashlight, sometimes under the mattress, sometimes under my pillow and sometimes clutched in my hand because of these almost nightly encounters and my fear that someday it would be a real person that I would mistake for a “night terror”.

Had I ever been taken to a psychiatrist, I would have been labeled borderline schizophrenic, maybe hospitalized and definitely drugged. I never was taken to a doctor for it and as I had grown up with this condition I called “night terrors” I had grown somewhat accustomed to it and had learned to hide this “condition” from family, friends and lovers.

These “night terrors” persisted through grad school, through clinical herbalism school, through natural foods culinary school and into the beginning of holistic nutrition school. They were just a part of who I was—I didn’t consider them a health concern. Through all of my training and education I adopted a healthier lifestyle, was physically active and ate healthier. I found it fun and challenging to cook gluten and dairy free after culinary school, so I only actively consumed gluten when eating out. Even though my “night terrors” persisted, they were shorter in duration and what I saw would dissolve usually within a minute or so of shining my flashlight on it. I didn’t even have them every night anymore.

As part of the nutrition program I was in, I succumbed to doing a gluten elimination diet. I thought nothing of it, that it would have no effect, because I had no digestion problems and I consumed very little gluten. After a couple months of the elimination diet, I thought nothing had really changed. I very strongly remember that it was my favorite month of the year… February (in 2007) meant it was Stout Month at the Mountain Sun (a local brewery in Boulder). And so, happy that I had “passed” my elimination diet, I ordered a chocolate cherry stout and a grilled cheese, avocado and tomato sandwich on rye bread. I had no idea that, that meal would be my last drink of a good stout beer or that I would never taste rye again.

That night I had night terror after night terror after night terror. They persisted all night and even included tactile sensations. I’ve never been so scared in my life and have never had such a horrific experience as that night—too horrific of a memory for me to even share here.

It was gluten. Night terrors (aka schizophrenic hallucinations) were my symptom, not diarrhea, constipation, stomach cramps or bloating. For me, it was purely neurological. Well, that and later I discovered that I had developed Hashimoto’s thyroid antibodies (which are a result of your immune system being up-regulated and your system being inflamed, almost always as a result of the body attacking the thyroid, mistaking it for gluten). I also now notice brain fog when I experience gluten cross-contamination. Although recognizing gluten sensitivity as the cause of my neurological symptoms was a strange realization, it was a happy one. Finally, I would have ongoing peaceful sleep lasting the entire night. Finally my adrenals would be given a break.

I never tested for celiac disease; I was unwilling to add gluten back into my diet for an extensive amount of time to test when the tests are so prone to false-negatives. Knowing whether I have celiac disease or not is not important to me. I am gluten sensitive. That’s all I need to know. I’ve been gluten sensitive my entire life…not schizophrenic and not able to see ghosts. I can’t have any amount of gluten, none. I was lucky because I had already learned to cook gluten free through culinary school and can order my own blood tests to confirm nutrient levels, antibody levels and such.  Now, my goal is to spread that support to those that don’t have those options.

As a Nutrition Therapist and Clinical Herbalist, I test almost every client for celiac disease and non-celiac gluten sensitivity (and often for other food intolerances too). I don’t have the blindfolds on that many in the medical profession do that pigeon hole their patients into an expectation of specific symptoms for a specific condition or that non-celiac gluten sensitivity isn’t as dangerous as celiac disease. Through my personal experiences and those of my clients, I help educate people that celiac disease is just another symptom of gluten sensitivity and that not having celiac disease is not a free pass to eat gluten if you are symptomatic. Whether ingesting gluten causes the body to attack the digestive system (as in celiac disease), the joints (as in autoimmune arthritis), the thyroid (as in Hashimoto’s and in Grave’s), the brain (as in autoimmune Alzheimer’s) or whether gluten is creating an inflammatory state with an upregulated immune system that taxes the adrenals and risks the development of an autoimmune disease or distracts the body from killing mutated cells in the body (as in cancer), causes anemia, osteoporosis or one of the other 200 or so different symptoms associated with BOTH celiac disease and non-celiac gluten intolerance, it doesn’t matter. Celiac disease is a symptom of gluten sensitivity and it is awful, but people with non-celiac gluten sensitivity can have to be just as gluten vigilant. We are all in this together.

As a healing foods chef, I only teach gluten free cooking classes (and usually grain free classes), because whether someone is gluten sensitive or not, we can all thrive more if we eat less grains and more nutrient-dense non-processed foods. The reason gluten sensitivity is so prevalent is because gluten is not digestible, but is in everything and in this modern age when leaky gut syndrome is so prevalent, it is no surprise that gluten sensitivity is so widespread. Those that are not gluten sensitive would do well to not “push their luck” and be mindful of their consumption of grains.

When I have any amount of cross-contamination, my sleep becomes disrupted, I have a very hard time falling asleep and the night terrors return. The intensity of the night terror corresponds with the level of cross-contamination I receive. Three nights ago I had a “night terror,” I saw a man watching me from the bathroom in my room. I sat up and watched him and as I watched him, strangely calmly, I thought through about what I had eaten that day, wracking my mind for where the cross-contamination in my day could have come from. He backed away. I went back to sleep. The next morning, I was in the bathroom and noticed that the screen was completely off the window. Possibly, a few nights ago, my fear came true and someone broke into my house but I thought it was only a night terror. I’ll never know. Vigilance.

Liking helps my self-esteem!


77 Comments

Joyce · May 31, 2012 at 7:52 pm

Wow Katie, extremly well written article. I love the suspense and the mystery at the beginning.  I am gluten intolerant too.  It affects me differently, I get a rash or itchy.  I’m not always sure if  it is that  I ate too much fruit to get too much sugar or if is the gluten I got from some food or both.  I am pretty careful with the amount of fruit I eat,  and Idon’t really like wine that much anyway 🙂     Thanks for sharing.

    Katie Bauer · June 1, 2012 at 9:15 am

    Thanks Joyce! I love hearing what everyone’s symptoms are because they can be anything. I also have an issue with fruit. Lately I’ve been wondering if I’ve developed fructose malabsorption or if I have parasites, but haven’t tested myself for either yet. If I have a small amount of fruit I’ll get a rash but with a larger amount or with corn I sometimes get cramping. I try to avoid fruit anyway to avoid the blood sugar spikes so I’m not too concerned with the outcome of the test, but need to know so I can deal with the parasites if that’s the problem. Though, unlike you, I do occasionally like a glass of wine! I’m glad that all I’ve my food intolerance reactions are different so at least I can differentiate when its gluten cross-contamination and when it is some other ingredient. It must be frustrating to not know whether you are reacting to gluten or fruit. Thanks again for sharing your symptoms–much appreciated.

      Cookie · October 10, 2015 at 11:10 am

      The title of this piece is misleading. You did not have and do not have schizophrenia, unless you’ve been diagnosed by a competent professional. I know of no research establishing a connection between gluten consumption and schizophrenia, or night terrors for that matter.
      My mother has celiac disease (ie, the real thing) and gets very sick if she eats gluten. She does not, however, see things that aren’t there. I think the only thing you suffer from is an overactive imagination.

        Ursula · April 8, 2017 at 7:10 pm

        There are literally THOUSANDS of scientific studies, dating back as far as the 1950, that show that gluten causes schizophrenia in some people. In fact, most schizophrenics recover on a gluten free diet.
        And yes, I also had the same kind of night terrors all my life, until I figured out I have Celiac disease at the age of 52. I was attacked by demons in my dreams, and would wake up as they would kill me, up to ten times a night. I was afraid to go to bed.
        I also get the horrific stomach and bowel symptoms of typical Celiac disease from the slightest amount of cross contamination. Plus, the nightmares return.
        You might want to do some research on this. Try googling ‘schizophrenia gluten intolerance’ and you’ll find that over 96.000 articles will come up.

        Maymee · May 20, 2017 at 7:43 am

        You have not done much research at all. One size does not fit all when it comes to which part of our bodies will be affected by gluten. Be kinder and more tolerant until you are better educated.

Lynn · June 3, 2012 at 7:18 pm

Good  grief Katie! I can’t even imagine a life of night terrors. No wonder you are so careful and committed to not eating gluten. This is a very good article on the problem and it’s not something I will forget if I  hear of anyone having night terrors. Thanks for sharing your knowledge. 

    Katie Bauer · June 4, 2012 at 8:47 am

    Hi Lynn. Yes, I am so glad to know what my night terrors were caused by. Unfortunately, the night terrors are only an external manifestation of the inflammation that is happening inside. Regardless of the intensity of the external symptoms, if anyone is symptomatic, no matter how minor, they need to be careful and committed to not eating gluten. The real health concern is the internal effects from gluten, even more so than the external symptoms. Often we don’t strongly notice the autoimmune effects with the body attacking itself, thinking its fighting gluten. I know that I’m not very aware of my immune system being upregulated and attacking/destroying my thyroid every time I get just a little cross-contamination. And that attack can last up to 5 months!!!! So scary. There are a lot of other scary internal effects that may be happening that elicit no obvious external symptoms such as the body not fighting mutated cells (e.g. cancer) because it’s too busy fighting gluten; osteoporosis, anemia and more. I wish that night terrors were it, but they are only the tip of the iceberg. But I’m luckier than some that have no obvious external manifestations of the intolerance. At least I know when I’ve received gluten cross-contamination and my body is under attack, my immune system is up-regluated and I am inflamed. Most gluten intolerance is asymptomatic!

Caitriona Reed · June 4, 2012 at 12:53 am

Yes, I just stopped eating gluten (on a recommendation from Angela Minelli – Thank you Angela! – and I am definitely the better for it. It’s amazing how may people are sensitive to what passes for wheat in this age of industrial farming.

    Katie Bauer · June 4, 2012 at 8:31 am

    So true. How has it improved your life Caitriona?

Hladams · October 3, 2012 at 4:29 pm

I, like you have suffered from Adult Night Terrors for 10 years. Ghosts, spiders, people, you name it, I ran from it. I’ve also woken up at the front door, about to head out, and then waking up wondering why am I standing here?
6 doctors later, G.P, sleep specialist, psychologist, psychiatrist, acupuncturist, and finally neurologist….still nothing.
After 2 MRI’s looking for night seizures and epilepsy, I was at my wits end! I decided to just live with them.
3 weeks ago, I decided to go wheat free. I suffer horribly from several seasonal allergies, eggs and seafood allergies and avoid dairy. I figured perhaps it might help. I feel terrific! I haven’t had any night terrors during the wheat free weeks, and overall I feel great!
I came across your posting and was interested to see that others have suffered like I have.
I’m going to continue to go wheat free, and see how my other allergies improve, but also know to see that perhaps I may finally have control over my night terrors.
I applaud you for talking about this horrible affliction, that many dismiss as being crazy!
I may finally have a peaceful night sleep.
Thanks again

    Katie Bauer · October 3, 2012 at 5:18 pm

    Oh your posting just fills me with delight! Thanks so much for sharing and congratulations!!!! I am so very, very pleased for you. How frustrating that you have been to so many specialists and none of them suggested to you to be tested for gluten intolerance!

    The first time I opened up about my “night terrors” was when I presented a workshop on new research about gluten at the Public Health in the Rockies conference last year and I expected to not get the best reception with including my personal story in a professional health conference. Instead it resulted in an abundance of folks feeling comfortable to tell me their uncomfortable gluten story after my presentation and two of them had night terrors like us but had not realized the connection. Again last weekend when I told my story during a presentation, I woman came up during a break and told me that she used to have night terrors too, so bad that she had her husband board up the windows because she didn’t want to mistake the night terrors for real and since going off gluten she hadn’t had them and didn’t even realize the connection! At this point, with the same neurological symptoms showing up over and over again with myself, clients and people I meet, I realize that everyone who has any type of psychological symptom or sleep issue should be tested for gluten–no ifs, ands or buts about it. Now if we could only get the specialists to see our reasoning!

    Thanks again for sharing and please keep me updated on how things go for you with your wheat-free diet!

      Christian · November 30, 2016 at 1:53 am

      I’ve just come across this article late at night while I trying to recover from a night terror. Having spent this semester taking an abnormal psychology course I find myself identifying with many symptoms associated with schizophrenia and it’s been worrisome. I may very well have some psychological disorder but this is an interesting perspective on gluten intolerance. My body is very visibly sensitive to processed grains, sugar and dairy. After a particularly poorly chosen meal I find myself with a puffy face, bloated abdomen, acne, rashes, red patches. I also have chronically irregular bowel movements. Being a college student and working full time, I only have so much time to prepare meals and I’m also just a lazy person… but after tonight’s night terror I really need to stick to a cleaner diet. Less than an hour before bed I used three Hawaiian rolls to make mini ham sandwiches. Usually a bready mean will keep me up with gas and bloating but I think the sugar rush made me pass out quickly. And if your theory is correct, the gluten, or my brain chemistry as a result of the gluten, through my sleeping brain into some panicked frenzy. Thank you for this article. It gives me some hope that maybe I can alter my diet to reduce my anxiety/nightly hallucinations as opposed to seeking psychiatric help.

Kim · November 13, 2012 at 5:11 pm

Thanks for sharing your gluten experiences with sleeping.  Growing up I constantly slept walked, into my early 20s I begin having night terrors, which progressed back to sleep walking and even worse sleep eating.  I also jerked in my sleep.  I was very fatigued and miserable.  Some new symptoms encouraged me to go to the doctor whom suggested trying a gluten and dairy free diet.  It was really hard, but then I felt great.  Sleeping through the night and no more neurological issues.  I then developed gastro issues (even on gluten free) so I gave up other things like diary and fructose and the new cramps went away.  Thinking that maybe I was wrong the first time I went back on a gluten diet (it was really hard staying away from all three).  Well guess what- waking up at night started again, migraines,  night sweats, and uncontrollable hunger started up again.  So I am convinced gluten played a role.

    Katie Bauer · November 14, 2012 at 12:50 pm

    Kim, congratulations on discovering the cause of all of your symptoms! And congratulations on taking your health into your own hands.It is amazing how many folks I meet that have neurological symptoms from gluten but especially sleep symptoms. Thanks for sharing your story!

Megumi · December 28, 2012 at 9:59 pm

So true. I think all this talk about being a true celiac is rlaely silly. It’s not like the celiac tests are foolproof. Nor is much known about non-celiac gluten sensitivity. Plus, if an intestinal biopsy does not show damage, does this mean the person isn’t having an autoimmune response caused by gluten?! Not necessarily. Although I’ve never been tested for celiac (and won’t be, since the test would necessitate a gluten challenge), I was diagnosed with alopecia areata in my teens and autoimmune thyroid disease in the last few months. I suspect that gluten was a contributor to both autoimmune conditions but of course I have no proof. Does it rlaely matter that I don’t have the official piece of paper telling me that I have celiac disease? I can’t figure out why it would. I realize I might not get the validation of mainstream celiac organizations or official celiacs, but as long as I’m on the road to recovery, I don’t care. Cheers to you for discovering what works best for you!

    Katie Bauer · December 29, 2012 at 11:17 am

    Thanks so much for sharing Megumi! I’ve been chastised by some celiacs and some in the medical community for not testing myself for celiac disease and choosing to go off gluten without testing! Just like you, I refuse to test for celiac disease because I refuse to do a gluten challenge. For the sake of a celiac diagnosis, I refuse to do the gluten challenge and purposefully upregulate my immune system, cause inflammation and potentially other damage when, like you said, there are so many false negatives and who cares? I know I can’t consume gluten. I know I am gluten intolerant so the form of gluten intolerance doesn’t matter as the solution is the same… Don’t eat gluten ever–at all!

    I really appreciate that you have commented–it is so nice to know others are equally fed up with this us vs them: celiac vs non-celiac gluten intolerant. We really should be working together. I also get so frustrated at restaurants when I am confirming all details to make sure there will be no cross-contamination and the waiter says… “Oh because you are celiac not just sensitive.” I used to try to educate the waiter about how it doesn’t matter, both need to be equally careful, but sadly have given up on that fight these days and usually just say “yes.”

    Have you read the book, “Why do I still have thyroid symptoms?” by Dr. Datis Kharrazian? He goes through all of the research indicating that almost always gluten is connected to autoimmune thyroid cases and that almost all thyroid problems are autoimmune. I don’t have Hashimoto’s, but I do have antibodies to my own thyroid, which means if I were to go back on gluten, most likely my body would start the attack on my thyroid again as the thyroid is strangely a very similar protein to gluten and easily mistaken for it.

    Thanks again for commenting and sharing Megumi and cheers to you too for being on the road to recovery!
    Katie Bauer recently posted..Avoiding Being “Glutened” During the Holidays: Common Cross-Contamination Culprits

David · January 4, 2013 at 4:55 pm

Is hypothyroid related to gluten ? Are negative “schizophrenia” symptoms, as opposed to positive symptoms, also related to gluten? Yang or positive symptoms are those like hallucinations. Yin or negative symptoms would very flat affect.

    Katie Bauer · January 16, 2013 at 3:43 pm

    David, Actually, I have yet to have a hypothyroid client (let alone a Hashimotos client) that doesn’t also have gluten intolerance. Many studies have found gluten intolerance and Hashimotos are connected (http://www.eje-online.org/content/130/2/137.abstract, http://www.ncbi.nlm.nih.gov/pubmed/15244201, http://www.ncbi.nlm.nih.gov/pubmed/9872614, http://www.ncbi.nlm.nih.gov/pubmed/12919165, http://www.ncbi.nlm.nih.gov/pubmed/11768252, http://www.ncbi.nlm.nih.gov/pubmed/9872614). This research shows the connection to be so common and strong that I believe that all patients that have antibodies to their own thyroid should be gluten free and everyone that is gluten intolerant would do well to test for thyroid antibodies. The reason that Hashimotos and gluten intolerance are connected is silly really! Gliadin (part of gluten) is molecularly very similar to the thyroid. This means that when someone who is gluten intolerant (thereby producing antibodies to gluten) consumes gluten (or gets cross-contamination), their immune system becomes upregulated and starts attacking not only gluten, but also those things the body confuses as gluten which for some people includes their thyroid. What’s really scary is that studies have shown that this attack on the thyroid can last for up to 6 months (http://www.ncbi.nlm.nih.gov/pubmed/9872614) and someone who is gluten intolerant activates antibodies from consuming 1 gluten containing bite or significantly less (varies by person ) . This is what frustrates me so much in my practice…. Someone who “only cheats every once in a while with a bite here or there of a cookie or pizza” has just reactivated an immune attack on not only gluten but potentially body tissues as well (the digestive system with Celiacs, joints with rheumatoid arthritis and the thyroid with Hashimotos). Dr. Kenneth Fine’s research indicates that 80% of Americans are likely to have or develop gluten intolerance (https://www.enterolab.com/StaticPages/EarlyDiagnosis.aspx) and other research indicates that 90% of hypothyroid cases are autoimmune (http://www.sciencedirect.com/science/article/pii/S0950351X88800557). This, I believe, is strong enough evidence to indicate that nobody with hypothyroidism should consume gluten and is why (to the sometimes extreme frustration of my clients), I suggest they eliminate gluten from their diet if hypothyroid (and without question if Hashimotos).

    In regards to the type of schizophrenia, I am unsure how the different symptoms of schizophrenia are affected by gluten. One thing to note is that I am not saying gluten causes schizophrenia but in some cases, gluten is the cause of the neurological symptom, but definitely not in all cases. Here is a decent review of some of the research surrounding the connection between gluten intolerance and schizophrenia: http://celiacdisease.about.com/od/glutenintolerance/a/Gluten-And-Schizophrenia.htm
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      Maymee · May 20, 2017 at 7:58 am

      The article about celiac disease and gluten intolerance and schizophrenia is a very poor article to direct readers to. There are better article that are more up to date and not so slanted towards mainstream hogwash.

Andrea Risi · January 7, 2013 at 12:09 pm

Thank you Katie for sharing your personal story! I was fascinated to read about the link between gluten and psychological/neurological problems. Have you found any scientific/medical writings about the correlation between gluten and night terrors (or other psychological challenges)? I’d love to read more about this…

Adam · January 12, 2013 at 7:09 pm

Hi Katie, My name is Adam, I know what it is to live with night terrors. Here’s a new avenue you can try, it has cured my night terrors as long as I keep it in my diet. Its hard to believe it but it help me amazingly A candy bar, Hershey’s special dark chocolate. Which I stumble across it in aiding me Thank God! I know my night terrors differs from yours. This was my night terrors with in 30 minutes to an hour after falling asleep and I could scent it in my sleep coming on, my mind and body would wake me in a panic alert with an awful feeling as I was loosing my life slipping away from my body and then my heart would race to 200mpr! Many times I felt I wouldn’t pull through that’s how scary it was for me. All I can is try it, if it helps Thank God. And if not at least you try. My story is very true Katie, some may chastise me that a candy bar has stop my night terrors but I will tell you this their something special about Hershey’s dark chocolate in the ingredients or compounds. Which aided me. No longer live with night terrors anymore! I plan on making a video on youtube hoping to help others with the same type of night terrors I had at one time. Can you believe it Hershey special dark. Chocolate wow! If it helps others , they will have to do medical study on this!!!!! God bless Katie.

    Katie Bauer · January 16, 2013 at 5:23 pm

    Wow Adam! I’ve never heard of Hersheys helping with night terrors–very interesting. I’m curious is it all chocolate or just Hershey’s dark chocolate that works for you? My initial thought is that it is the magnesium that is so high in dark chocolate that is causing your muscles to relax, your heart beat to slow down and restfulness to ensue. I’m glad that you also found something that works for your night terrors. It sure is nice to have restful sleep! Thanks for sharing what works for you!
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      Adam · January 24, 2013 at 9:16 pm

      Hi Katie, it Hershey’s special dark chocolate. Nice that you read my posting. I have been free of night terrors for 4yrs now! All I can tell you is for some reason the ingredients suppresses anxiety, and panic attacks. Or the body receptacles being trigger. I urge all to try it who suffer from anxiety, and panic attacks. And it must be a daily regiment. Beats living on nasty harmful meds! In the long run causing more problems. I don’t know if other type of dark chocolate works? Reason is why would I need to if I already found my cure. Right!, with Hershey’s special dark chocolate. I”m already being ridicule on another web site, by others saying its placebo effect! I lit in to them, asking them to try it! But sad to say some people would rather live on meds for life!!!!!! and be ill. I guess the meds have gotten the best of them. They aren’t thinking correctly. I need other testimonials that this works for others than just myself. Hope things get better for you Katie. Sign Adam.

        Katie Bauer · January 28, 2013 at 11:02 am

        Thanks Adam for the update. I hear you about not wanting to try other chocolate bars or just magnesium to see if they have the same effect for you… I’m the same way. I won’t try your chocolate solution, because I know mine are caused by gluten (and I avoid sugars and am not a fan of the quality or sourcing of Hershey’s chocolate) and will never consume gluten again so that I can stay night terror free. What matters, is that we have found a solution and who cares what others think–we have to do what works! All that matters is that we have peaceful sleep now! Congrats on finding your solution!
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    Allison · February 2, 2015 at 2:50 pm

    Adam,

    What time of day do you eat the Hershey’s Special Dark Bar? And is it the regular size candy bar?

Lyn · February 3, 2013 at 6:51 pm

Thanks so much for that great post Katie.

The thought of the real person in your room was pretty scary. I sleep like a baby but I have had memory problems for a few years that got so bad that I had to leave my old job because I was making so many mistakes. I was tested for and treated for sleep apnea which has made a big difference but you have me wondering if gluten could be a contributing factor.
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    Katie Bauer · February 5, 2013 at 10:10 am

    It wouldn’t hurt to find out. I think anyone with neurological symptoms should uncover whether they have an issue with gluten as it is so common. I would suggest doing a blood test for celiac disease and if that is negative, doing a test for non-celiac gluten intolerance and if that is negative, to do an elimination diet or just go straight to an elimination diet if you don’t need the testing reassurance.

    Other avenues you might look into beyond gluten intolerance is 1) memory issues and brain fog are very common symptoms with intestinal candida overgrowth (I suggest the Microbial Ecology test through Metametrix lab for this) 2) Other food intolerances besides gluten (I prefer the ALCAT 200 food panel test for this). 3)neurotransmitter imbalance (several labs offer testing for this and I’m not sure yet which one I prefer). Common symptoms for acetyl choline (a neurotransmitter that can be supported naturally through diet and supplements) deficiency are:
    • visual memory (shapes & images) is decreased
    • verbal memory is decreased
    • occurrences of memory lapses
    • creativity decreased
    • comprehension diminished
    • difficulty calculating numbers
    • difficulty recognizing objects & faces
    • opinion about yourself has changed
    • excessive urination
    • experiencing slower mental response
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    Katie Bauer · February 5, 2013 at 10:19 am

    Hi Lyn, sorry I didn’t realize when I responded that you aren’t in the US and all of the labs I just listed are US labs! That said, I’m sure there are labs in Australia that would work or you could wait until you make your move to the states! I’d be glad to look into lab testing in Australia to see if there are comparable tests to what I suggested. Let me know if you have any questions.
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bongaan · February 26, 2013 at 6:41 am

Thank you for your story! I’ve found that night terrors occurs if histamine levels are high. In your case the inflammation/histamine was caused by gluten and thus the night terrors. I’m glad you are better now!

I am histamine intolerant and my eyes widened when I read what you ordered when you celebrated the fact that you “passed” your elimination diet: chocolate cherry stout and a grilled cheese, avocado and tomato sandwich on rye bread! The night of absolute horror that followed after your celebration came to me as NO surprise. You see EVERYTHING you ordered was either very high in dietary histamine or they are known to be histamine liberators (in other words, causing your body to respond by releasing histamine). I think your histamine levels skyrocketed due to these foods and you had that very unpleasant night. I believe you could have night terrors again if you over consume foods high in dietary histamine even though you may be gluten free, it all just depends on your bodies ability to break down the histamine.

    Katie Bauer · February 26, 2013 at 9:07 am

    Thanks so much for sharing this information bongaan! I have never heard of histamine intolerance and am excited to learn more! I found this information on the histamine restricted diet: http://www.urticaria.thunderworksinc.com/pages/lowhistamine.htm Is this in line with what you are explaining to me?

    I do question whether that is my issue, because I only have night terrors now occasionally when I’ve eaten out and likely received some cross-contamination or if I’ve eaten anything from bulk foods (which again I assume is from gluten cross-contamination). Also, looking through the foods listed on that website, I regularly eat several of them with no night terrors, such as the spices they list, eggplant, tomatoes, spinach, sauerkraut (I am making some right now actually, just waiting for it to finish fermenting and have some done fermenting in the fridge), all the fruits listed, and fish. I suppose I could do an elimination diet with those foods and then add them back in and see if I get a histamine-induced night terror. Fascinating stuff! Thanks again for sharing!
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bongaan · February 26, 2013 at 6:55 am

Hi Katie, after posting my initial comment I read more of the other comments and it really sounds to me as if you may be histamine intolerant. I’m gluten free for a year now and improved a lot, but I still battled from time to time with various seemingly non-related symptoms until I realised that I was histamine intolerant. All the dots connected. You are more than welcome to contact me if you wish to discuss this.

    Katie Bauer · February 26, 2013 at 9:14 am

    Thanks bongaan! I looked back through the comments and see that I used to think I had an issue with fructose which is listed as something to avoid on the histamine-restricted diet (or rather fruit is), but now I’m not so sure. I do get the rash on my neck if I eat onions, but don’t seem to have a problem with fruit anymore. But I also still need to order the parasite/candida/bacterial overgrowth test. I will try an elimination diet of the histamine foods and continue to leave out gluten which isn’t listed on the foods to avoid and see what happens. I always love a good experiment on my body!!! Also, are you familiar with any tests I can order to check about histamine intolerance? Thanks again and I might reach out to you as I learn more.
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CMGirl · March 3, 2013 at 6:12 pm

Hi Katie,
Wow! I am constantly amazed by how differently gluten intolerance presents in people!

After the birth of my third baby 16 years ago, I was diagnosed with Hashimoto’s Disease and have been on Synthroid ever since. Until now, I had never considered gluten to be a problem for me; however, the evidence appears overwhelming that I must have an issue. Starting now I will be meticulous about gluten and cross-contamination. Do you have any idea what I can expect in regards to my Hashimoto’s? I mean, after all these years, can I be “cured”? Can I expect my necessary dosage of Synthroid to decrease? Who (what kind of medical professional) would you recommend I follow up with? (I live in CA)

Thank you so much for any assistance and suggestions you can offer, and thank you for sharing your story and knowledge!

    Katie Bauer · May 23, 2013 at 9:31 am

    Hi CMGirl, gluten is fascinating isn’t it! I strongly believe that anybody that has Hashimoto’s or antibodies to their thyroid should avoid gluten strictly. It is not worth the risk. I definitely suggest getting tested both for celiac disease (antibodies to tissue transglutaminase) and gluten intolerance (antibodies to gliadin) and even if the tests are negative, I still suggest removing gluten.

    I mentioned this in a previous comment… I have yet to have a hypothyroid client (let alone a Hashimotos client) that doesn’t also have gluten intolerance. Many studies have found gluten intolerance and Hashimotos are connected (http://www.eje-online.org/content/130/2/137.abstract, http://www.ncbi.nlm.nih.gov/pubmed/15244201, http://www.ncbi.nlm.nih.gov/pubmed/9872614, http://www.ncbi.nlm.nih.gov/pubmed/12919165, http://www.ncbi.nlm.nih.gov/pubmed/11768252, http://www.ncbi.nlm.nih.gov/pubmed/9872614). This research shows the connection to be so common and strong that I believe that all patients that have antibodies to their own thyroid should be gluten free and everyone that is gluten intolerant would do well to test for thyroid antibodies. The reason that Hashimotos and gluten intolerance are connected is silly really! Gliadin (part of gluten) is molecularly very similar to the thyroid. This means that when someone who is gluten intolerant (thereby producing antibodies to gluten) consumes gluten (or gets cross-contamination), their immune system becomes upregulated and starts attacking not only gluten, but also those things the body confuses as gluten which for some people includes their thyroid. What’s really scary is that studies have shown that this attack on the thyroid can last for up to 6 months (http://www.ncbi.nlm.nih.gov/pubmed/9872614) and someone who is gluten intolerant activates antibodies from consuming 1 gluten containing bite or significantly less (varies by person ) . This is what frustrates me so much in my practice…. Someone who “only cheats every once in a while with a bite here or there of a cookie or pizza” has just reactivated an immune attack on not only gluten but potentially body tissues as well (the digestive system with Celiacs, joints with rheumatoid arthritis and the thyroid with Hashimotos). Dr. Kenneth Fine’s research indicates that 80% of Americans are likely to have or develop gluten intolerance (https://www.enterolab.com/StaticPages/EarlyDiagnosis.aspx) and other research indicates that 90% of hypothyroid cases are autoimmune (http://www.sciencedirect.com/science/article/pii/S0950351X88800557). This, I believe, is strong enough evidence to indicate that nobody with hypothyroidism should consume gluten and is why (to the sometimes extreme frustration of my clients), I suggest they eliminate gluten from their diet if hypothyroid (and without question if Hashimotos).

    Your dosage of Synthroid and how much your body can recover depends on how much tissue damage there was to your thyroid and how far progressed the Hashimotos is. There is no “cure” for an autoimmune condition. You can uncover what your triggers are to your immune system being upregulated and control for those triggers but the autoimmune condition itself never goes away. A person with Celiac Disease knows that their trigger is gluten (and may be other foods too if they cross-react to other foods) and can stop eating gluten but if they ever get cross-contaminated the attack on the digestive system returns. Same with Hashimoto’s. You can manage an autoimmune disease but not “control” it. You can uncover the triggers for immune upregulation with Hashimoto’s and avoid those triggers but down the road something else may result in inflammation that triggers the attack again. It is a constant learning process. Most common triggers for Hashimoto’s are gluten, iodine and insulin surges. Though for some people, dairy is a trigger and for some estrogen surges (definitely sounds like this is for you since you were diagnosed after a pregnancy), mercury and other environmental toxins are the culprit. You need to uncover what reinstates the attack for you. I suggest ordering the book, “Why Do I Still Have Thyroid Symptoms? When My Lab Tests are Normal. A revolutionary breakthrough in understanding Hashimoto’s Disease and hypothyroidism” by Datis Kharrazian. This book will help you understand the condition better and learn about possible triggers. So all of this is to say, I don’t know… It depends how much tissue damage you’ve had with whether you could get off Synthroid or decrease your dosage.

    Another piece of the puzzle is that you need to have strong, good working digestion so that you can get the most out of your medication. If you are not absorbing foods well, then you also aren’t absorbing nutrient cofactors needed for your thyroid and you also aren’t absorbing your medication well which means you have to do more. Also proper digestion is needed to make thyroid hormones. Having good gut bacteria and a balanced gut ecology will help you produce thyroid hormones and support your immune system. 70% of our immune system is in our gut so digestion is critical to supporting an autoimmune condition. Gut inflammation often results in thyroid inflammation, which you need to especially avoid when autoimmune.

    As for a practitioner. You are looking for someone with some experience with autoimmune conditions. It is possible to find natural or integrative endocrinologists that could cooperate with a nutritionist, chiropractor or naturopath to provide you the best support. If you are looking for someone local, the best thing to do would be to screen them by asking questions about what they would do for your condition, what they believe common triggers for Hashimoto’s are and what sort of dietary recommendations they have. If they just want to keep you on thyroid medication and not deal with the autoimmune component then pass. You need somebody willing to calm down the inflammation in your body and stop immune over-reactivity or else you could just develop a new autoimmune condition. Thyroid medication does not deal with the immune system so you need someone willing to support that. Ask questions. Don’t be afraid to grill your doctor!

    If you have questions or want to chat about this, you are welcome to schedule a complimentary health strategy session with me and we can talk about options for you: http://www.nourishedhealth.com/strategy-session/

    Good luck with everything!
    Katie Bauer recently posted..The 10 Second Secret to Igniting Your Digestive Fire

      Alcon · June 29, 2013 at 10:08 pm

      Ok, Europe is a hard destination to tvearl to with the goal of healthy living when you are use to the abundance of produce that CA offers. You enjoyed yourself and a once in a lifetime experience with family. You avoided gluten. You walked often. Success.Those 5 pounds will come off, and then some more. Why? Because you care about your health and when not tvearling you have all the tools you need to get where you want to be.No one should ever shame you. You are losing the weight for yourself, no one else.Finally, you have this in you. Don’t stop believing in yourself because you truly have made huge strides in the one year since we last saw each other. Seriously! Your entire life has changed since going gluten free and that was huge. Now you are tackling this next process, creating an eating regimen that works for you. You will get there, believe in the process and the end result will come.Sorry to go all Oprah on you, but you are too awesome to think anything different.

        Katie Bauer · August 2, 2013 at 12:16 am

        Alcon, I think you have me confused with someone else! You said we saw each other a year ago, but I’m not sure who you are?

        Weight loss has never been my goal with going gluten free and it has not effected my weight one way or another. But going gluten free definitely does help some people lose weight and helps other people gain weight. It is a great equalizer to remove those foods our body doesn’t process correctly!

        Well, whether I know you or not, thanks for your support!
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Priscila A · March 30, 2013 at 10:51 pm

Great story , thank you for being a voice to gluten intolerant people and hope this article can educate people. I have gluten induced arthritis and it took me years of suffering to realize i was gluten intol since i tested negative for celiac. I also had chronic hives and had to take steroids. Aafter just one week gluten free ,i saw significant improvement on my hives and joint pain. I see a lot of criticism of people that choose to adapt a gluten free diet without being celiac in articles, as if we are fad following brainless people, so thank you for your article.

    Katie Bauer · May 23, 2013 at 9:40 am

    Priscila, Thanks so much for sharing your symptoms with gluten and I am in sooo much agreement with you! It is so frustrating to me that the gluten intolerant community doesn’t stand together and instead there is so much fighting between people with “no, my issue is more important than yours.” It absolutely drives me nuts and all of this discussion that only celiac disease matters is dangerous and is sending the wrong message to not only folks that are gluten intolerant but to those that support us. It drives me nuts when I am grilling a server at a restaurant about how something is prepared to make sure there is no cross-contamination when at some point they say “oh you are really sensitive… you must have celiac disease.” I feel like yelling at them, “no instead my body merely attacks my thyroid and possibly my brain if I get any amount of cross-contamination. It doesn’t attack my gut though, so I guess that’s okay, right!” But I don’t. I occasionally try to educate someone about how non-celiac gluten intolerance can be just as dangerous but other times I just give in and say “yes, I have celiac disease.” It frustrates me. Yes, celiac disease is awful but inflammation is awful too… Okay, I just got on my soap box with someone that already agrees with me… Not very useful! 🙂 It just drives me absolutely crazy and makes me so sad. We could be such a more powerful group if we stood together.

    Anyway, thank you sooo much for sharing your symptoms of gluten intolerance and speaking up for those of us that don’t or may not have celiac disease. We will keep spreading the word and eventually folks will recognize that celiac disease is not the only problematic symptom of gluten intolerance.
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CoryS · April 25, 2013 at 2:51 am

I believe I have something similar, but I don’t hallucinate, I just feel extremely disorganized thinking and stress. Your body converts gluten to glutamate, which is similar to MonoSodiumGlutamate, MSG. It causes inflammation in the brain and offsets multiple other neurotransmitters like dopamine. I’ve been feeling tired and haven’t been able to focus my thoughts for many years now. I’ve stopped eating gluten for a few days and have been taking b vitamins, taurine, and magnesium to help lower glutamate levels in my brain. I feel better after just a few days. Thanks for the post!

http://www.sciencedaily.com/releases/2013/04/130418124641.htm

    Katie Bauer · May 23, 2013 at 10:24 am

    Fantastic! Thanks so much Cory for passing on the article. Very interesting! And I love that it is so recent. I’m really excited to look more into glutamate’s connection to neurological conditions. I luckily am on a low glutamate diet since I don’t consume grains or dairy. I can occasionally go to big on nuts and seeds, which are higher in glutamic acid, but lately have been minimally consuming them. I do consume a lot of coconut, but it seems as though that actually is protective against glutamine.

    Interesting about the dopamine. I read a recent article in psychology today about night terrors, sleep walking and other sleep disorders that indicated “Nearly 45 percent of patients diagnosed with REM sleep behavior disorder go on to develop Parkinson’s disease and other conditions caused by a lack of dopamine in the brain, according to a study reported in The Lancet Neurology.” This really freaked me out! Here is the whole article: http://www.psychologytoday.com/articles/201212/dangerous-dreamers

    So a few weeks ago I started taking a supplement that naturally supports an increase of dopamine in the brain with amino acids (DL-Phenylalanine, Beta-Phenylethylamine, N Acetyl L-Tyrosine, N Acetyl L-Cysteine) and nutrient cofactors. It has increased my motivation and concentration during the day which had decreased just in the last month, but has drastically upset my sleep and seems to be almost inducing night terror-like symptoms. Not the same as with gluten, but still disconcerting. These ones happen exactly 30 minutes after I fall asleep and are more like how the Pychology Today article defines night terrors than me hallucinating. I’ve waited some to see if it would go away, but not so much. Also problematic is the Dopamine Hypothesis of Schizophrenia that posits that the problem is an increased number of dopamine receptors and therefore some researchers indicate that dopamine receptor blockers are the best treatment for schizophrenia and increasing dopamine would worsen the situation. http://psychcentral.com/lib/2010/the-dopamine-connection-between-schizophrenia-and-creativity/

    Hmm… You’ve given me more food for thought. Thank you. I still have so much to learn!
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Renata · May 30, 2013 at 1:53 pm

This story is nothing less than ASTONISHING to me! I am a successful wife, mother and PhD in my early 60s and I had VERY similar symptoms all my life. The night hallucinations gradually faded (or perhaps I just got used to telling myself, “There’s nothing in the dark that wasn’t there when the light was on,”) but when my husband travels I STILL sleep with a night light on!!!
And the “brain fog” — tell me about it! Day after day after day….many days were like slogging through molasses. Since childhood I have had days that were so bad (I called them “buzzing head days”) that I could do nothing but lie down with my eyes closed.
I suppose they COULD have been symptoms of something else, but one day, literally out of the clear blue sky, I woke up and decided to stop eating gluten (and processed food, and sodas, and artificial sweeteners). I pretty much went 95% Paleo without having heard of Paleo (I have chickpeas etc. very occasionally – legumes are gluten free but not Paleo).
Anyway, every lifelong symptom is GONE (also muscle and joint aches, overall fatigue that the doc thought was fibromyalgia, etc).
Thank heavens you discovered this at your age and did not have to go through a long life with it.
Now, if only I could convince people that even though I do not have celiac disease, I am not “faking” or jumping on a GF bandwagon! I confess that I once thought other people WERE just “making it up” – that is, it was a psychological problem due to boredom or watching too much Oprah or something! Boy, is my face red!

    Katie Bauer · May 30, 2013 at 9:23 pm

    Renata, thanks so much for sharing your experience with gluten and all of your symptoms. My night terrors are just from gluten but I am also now paleo though sometimes when I eat out or with friends I might end up eating gluten free grains or beans. Your story is so incredibly encouraging. I will definitely be sharing it with others, especially those with muscle and joint aches or that have been “diagnosed” with fibromyalgia. You so cracked me up about thinking people were faking it or jumping on the bandwagon until it healed you too! I’ve heard that from many people. And yes, like you it absolutely drives me nuts when people don’t take my dietary choices serious or think that if it isn’t celiac it isn’t serious. Ugh!!! Thanks again. I really, really appreciate your story, your inspiration and your support!
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      Renata · May 31, 2013 at 7:01 am

      I am actually AGREEING that the night terrors were from gluten – the only thing I meant about “there’s nothing there that wasn’t there when the light was on” is that I told myself that if I thought I “saw” something! So they “faded” in the sense of not bothering me any more than anything else did…but since stopping gluten they have stopped entirely!
      Thanks again for your story – it was a huge help! I thought I was the only one with these weird night visions!

        Katie Bauer · May 31, 2013 at 8:43 am

        Renata, I understood that you were agreeing about gluten being the cause. It was bed time when I responded and so I may have come across as confused (but just sleepy)! 🙂 When I was a regular gluten eater and was getting night terrors nightly, I still had them, but I got used to them. I would wake-up, see someone, watch him or her for a minute and go back to sleep knowing that it wasn’t real. That I think is a little scary because it’s hard to know what is real and what isn’t. I wonder if I had never figured out it was gluten if they would have gone away for me eventually too.

        Yesterday I had a meeting at a restaurant and didn’t eat any of the food as I don’t trust the restaurant, but I did get limes in my water and I did start biting my nails from feeling stress for a bunch of stuff I need to get done. And I did get glutened! I can’t believe that I still make mistakes like that but I do! I woke up last night to a man in my room spraying something (yeah weird!). I watched him, wondering if he knew I was there or not and wishing I hadn’t slept without my sweats knowing that I was going to have to fight him without pants. Scared and shaking, wondering how to begin. And then he dissolved. So frustrating.
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        Rahime · June 30, 2013 at 2:14 pm

        You know this sounds like a great idea even tguohh I’m not gluten-free. I’m going to throw a gluten free party. After all, I’ve heard good things about eliminating gluten even for those who aren’t allergic or sensitive to it.

          Katie Bauer · July 4, 2013 at 2:58 pm

          That’s awesome Rahime!!! Yes, I’m under the belief that everyone could benefit from decreasing, if not eliminating all grains, but especially gluten from their diet. You will be well-loved by the gluten intolerant community if you start throwing gluten free parties!!!
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Ken Bauer · September 4, 2013 at 10:08 am

Katie, thanks for sharing this. One of my children has suffered from night terrors since very young and had episodes the last couple of evenings. I’ve pretty much gone grain-free/paleo/primal/ancestral (I struggle to put a label on it besides just saying “eating well”) for over a year now for other reasons.

I am pretty much convinced that doing the same would have enormous benefits for my family and look forward to digging deeper. Keep up the great work.

And great last name by-the-way. 🙂
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    Katie Bauer · September 4, 2013 at 1:58 pm

    Hey Ken of the fantastic last name! Thanks so much for writing. I more and more often meet folks that had night terrors related to gluten. I am bothered that I was gluten intolerant as a child but nobody was there to question that it was coming from what I was eating/being fed. Your children are really lucky to have you to model healthy eating (aka paleo) for them. I stopped eating all grains a couple of years ago and although my night terrors are only connected to gluten, my blood sugar balance is vastly improved by being entirely grain and bean-free!

    I look to spread awareness of just how many symptoms can be connected to gluten especially but any inflammatory food. I think my consuming gluten for so long vastly increased my intestinal permeability resulting in developing all sorts of other food intolerances and I also think being in “fight or flight” nightly with the night terrors wreaked havoc on my adrenals and my body’s ability to respond to food stressors and other stressors.

    I would love to hear how dietary changes end up affecting your child’s night terrors and what changes end up doing what. Thanks!
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Kenny · October 7, 2013 at 8:13 am

Wow! Firstly, well written article. Secondly,this is my life story. I suffered from night terrors all my life, very similar situations as yourself. It’s such an socially isolating condition, had to give up my military career because of them. Had lost my health in the last few years, adrenal fatigue, candida, food sensitivities, etc. Tested positive (the York test) for cows milk, eggs and of course gluten. Suspect I’m sensitive to coconut oil now as well. Adopted a Body Ecology/Paleo type lifestyle (I’m a blood group O positive), and now starting to regain my health. Have one question Katie. When you say ‘grain free’, does that mean you have eliminated seeds such as millet and quinoa as well? Great job again.

    Katie Bauer · January 21, 2014 at 10:19 am

    Hey Kenny, I apologize for the late response to this. I had somehow missed your comment. Congratulations on taking your health back into your own hands! And thanks so much for sharing that you also suffered from night terrors. Did you find that changing your diet got rid of your night terrors?

    Yes, in my own life, I also eliminate the grains and the pseudo-grains (e.g. quinoa, millet and buckwheat), although they have no effect on my night terrors. I just feel healthier without the gluten-free grains or pseudo-grains. The pseudo-grains that are actually seeds, like you mentioned, still contain phytates and enzyme inhibitors that affect our digestion. Also, they are still high-glycemic, meaning that they still spike my blood sugar and I notice that if I am eating a lot of pseudo-grains, my sugar cravings will return as my blood sugar becomes disregulated again. That said, I am only excessively vigilant about gluten. If I eat out or at a friend’s house, I on occasion may have gluten-free grains, but it is a rare occurrence for me.
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Tristan · October 12, 2013 at 10:24 pm

Thanks for writing – it can be very hard to find information on conditions like this. For me the effect of gluten is very specific and almost entirely mental. At first its extreme fatigue and fog – to the point where i can’t wash dishes without risking break them. Then becomes something I describe as “imagine having every dream at the same time”. It could be frightening for some people certainly but I know from experience it will be mostly over within 3-5 hours and that I will be able to sleep through some of it.

I have been formally diagnosed with sleep apnea and idiopathic hypersomnia and have CPAP therapy and provigil and I diagnosed my gluten intolerance and another condition that was contributing to chronic 8-10 hr headaches myself and am working on my sinus problems right now. I believe that gluten or more likely anti gluten antibodies are crossing the blood brain barrier, and that my overdeveloped immune system that is causing me difficulties may have been the result of exposure to an actual pathogen at some point in my life. I don’t have the medical knowledge to support those beliefs yet but am advancing quickly. If you want any more info just ask. And always take control of your own medical condition and never give up or stop learning.

    Katie Bauer · January 21, 2014 at 10:32 am

    Hi Tristan, I apologize for the late response to this. I had somehow missed your comment. Thanks so much for sharing your neurological symptoms. I find it fascinating what a wide-range of symptoms there are. The idea of “having every dream at the same time” for 3-5 hours sounds incredibly intense and scary. Congratulations on taking your health back into your own hands and discovering the cause of your neurological symptoms! Your theories about what is happening with your immune system and your brain make a lot of sense to me–sounds like you are on the right track.

    I also was concerned that gliadin antibodies were crossing my blood-brain barrier, which is so scary! It is possible to determine for yourself whether you have healed your “leaky brain” by doing a GABA challenge. Gamma-aminobutyric acid should not cross the blood-brain barrier. If a person takes GABA and their sleep is massively improved or if they feel really anxious or ramped-up than GABA has crossed the blood-brain barrier and the person’s brain barrier integrity is compromised. At that point I suggest specific nutrients to restore the brain integrity and calm down brain inflammation. You may want to do this challenge and see if your brain barrier integrity is still compromised.
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Vanessa · December 11, 2013 at 2:21 pm

Thanks for this article.
I too have suffered night terrors for the past 15 years.
My youngest daughter suffers from night terrors and sleep walking. I have just discovered the horrific side effects of gluten, and have decided to remove it from our diet. This evening I was making a snack for myself and my children and I decided on making spaghetti. I did not check the ingredients until it was too late that the spaghetti was made from wheat flour, and I was horrified. My daughter fell asleep and not long after she got out of bed to sleep walk. I wondered if this was not a symptom of Celiac disease. I googled and came across your story. Thank-you very much.

    Katie Bauer · January 21, 2014 at 10:42 am

    Vanessa, I apologize for the late response to this. I had somehow missed your comment. Thanks for sharing about your night terrors and your daughter’s night terrors and sleep walking. So fascinating all of the effects gluten can have! I sleep walked as a child too and possibly as an adult on occasion. Congratulations on taking your health back into your own hands and removing gluten!

    Night terrors, sleep issues and other neurological complaints are all symptoms of gluten sensitivity (what I used to refer to as gluten intolerance). Celiac Disease is also a symptom of gluten sensitivity. A person with Celiac Disease may also have neurological symptoms. A person that is gluten sensitive but does not have Celiac Disease (e.g. the body is not attacking their gut through an autoimmune response) may still have digestive symptoms. I only mention this to make sure that if you do test for Celiac Disease (you would have to add gluten back in for a couple months) and it is negative, you do not assume that you don’t have a problem with gluten. Celiac Disease is just one form that gluten sensitivity can take. A person without Celiac Disease can still have an autoimmune reaction to gluten and can still have neurological or digestive symptoms from inflammation.

    I would love to hear if the night terrors and sleep walking completely go away for you and your daughter once gluten is completely and vigilantly removed. Thanks again for sharing and for posting a comment!
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Aaron · July 24, 2014 at 11:07 am

The start of your post describes, nearly perfectly, what I go through multiple times a week. I’ve suffered with night terrors since I was a child and now that I am 22 I still haven’t grown out of them. Instead now they are getting increasingly dangerous as I am finding myself not in my room when I wake up and it takes me a long time to pick apart fact from fiction.
I came across your blog post as I’ve been looking into gluten intolerance/coeliac since I also have a few other symptoms such as irritable bowel and bloating as well as fatigue and light headedness. I had never linked night terrors with diet and I think it is something I need to explore. I’ve recently had a blood test for coeliac but it came back negative so perhaps I need to push my doctor to consider the night terrors as a symptom instead of a separate problem (albeit one he has no experience of in adults unfortunately).
I have no problems changing my diet but wonder if it might be prudent to seek advice from my doctor first? Do you have any advice for someone in my situation?

    Katie Bauer · August 1, 2014 at 10:13 am

    Hi Aaron, thanks for sharing your experience. I am so surprised by how many experience what we do.

    First, what test did your doctor run for celiac disease? Research of Kenneth Fine has found that 45% of negative results for celiac disease are actually false negatives and the person just does not have enough microvilli break-down to show a positive or the test was flawed for other reasons! And you have to be actively consuming gluten to have a positive test result.

    Second, celiac disease is only one form of gluten sensitivity. It is an autoimmune form that causes the body to attack the gut (or more specifically tissue transglutaminase), but that is just one form. A person could have another autoimmune condition triggered by gluten such as gluten ataxia (attack of the brain), hashimoto’s (attack of the thyroid), rheumatoid arthritis (attack of the joints) and many, many others. Or a person may have non-celiac gluten sensitivity and not have it be autoimmune (yet), but still have the immune system upregulated and experience inflammation resulting in the same symptoms as celiac disease or other symptoms such as ours. Neurological symptoms are more common than digestive symptoms for gluten sensitivity (even for celiac disease)!

    So all of this is to say that your doctor needs to be testing for both celiac and non-celiac gluten sensitivity. And just because a test result is negative, that does not rule out that you are not gluten sensitive. Most tests do not test for all forms of gluten sensitivity–you may not be reacting to gliadin which is what most non-celiac gluten sensitivity tests are looking for, you may be reacting to a different protein that is in gluten-containing grains. Another issue is you may not naturally produce many IgA antibodies which would cause the test to be negative even if it was positive. So always a person needs to be tested for IgA antibody deficiency if their celiac test is negative and it seems like it shouldn’t be. The best test out there, I think, is Cyrex labs Array 3: http://www.cyrexlabs.com/CyrexTestsArrays/tabid/136/Default.aspx . If you need positive test results to verify that what you are doing is right, I suggest that you get your doctor to order that Cyrex panel and if s/he won’t, I suggest you get a new doctor.

    If you go the test result route and your results are negative (for both celiac and non-celiac gluten sensitivity and preferably via the Cyrex lab), you should do an elimination diet and strictly eliminate gluten for a month at least (preferably 3 months) with no cheating and add it back in and see if you get symptoms. I never ended up testing for celiac or non-celiac gluten sensitivity because my elimination diet results were so clear and I refuse to add gluten back in for a couple months just to have test results tell me or fail to tell me what I already know.

    Legally, I could never tell you to do anything, make ANY changes to your diet or your lifestyle without the support of your doctor. So I can’t answer your question. I can say, if your doctor does not give you the support you are seeking, get a new doctor.

    I would love to hear how it goes, with whether you test again or try an elimination diet, and if it ends up effecting your night terrors. I am so thankful to no longer have them. Though if I get just the smallest amount of gluten cross-contamination, they return (but with less intensity and lasting a much shorter duration).
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      Aaron Parker · October 12, 2014 at 9:50 am

      Hi Katie,

      Thanks for replying! In the end the results of the IgA test were negative (0.94 – seemed very low even for a negative result) and the doctor said it was just IBS and to get on with it and the usual stuff. After a while I couldn’t get the idea of at least trying out of my head and upon seeing a different doctor (I’ in the UK so they are NHS doctors and you just see who is available on the day at my GP Surgery) I discussed trying to go Gluten Free for a while and see the effect.

      I initially decided on a 1 month elimination of Gluten to see how I went and then evaluate at the end of that month. Under a week in and my stomach problems were basically gone and I was sleeping amazingly well! The night terrors were nearly completely gone and without the adrenaline every night I kept sleeping through my alarms in the mornings as I could actually get decent sleep! (I basically kicked my adrenaline addiction that I didn’t want to have but the night terrors forced on me).

      At the end of the month I had planned to purposefully introduce Gluten into my diet to see if it brought the symptoms back, but I couldn’t bring myself to do it on purpose. In the 2 and a half months I’ve now been Gluten Free I’ve had 3 night terrors, compared to the 4-5 a week I used to have.

      Now I’m wondering if my very low IgA result is actually a false negative as the usual range is 1-4 and I am below that which could mean that I am IgA deficient? I’ve discovered Coeliac UK who are setup to help people in my situation so I am going to give them a call this week to find out what they suggest. I don’t want to have to go back on Gluten for 6 weeks for a test, but if they did a test for IgA deficiency and it were positive then I might consider it so that I can get the proper tests done and then possibly see a dietitian (through the NHS as I can’t afford one privately) and get the help I need with taking this forward…

      Thank you so much for your help, I’ll keep you updated on my progress too!

      Aaron

MrsOgg · September 30, 2014 at 8:46 pm

I feel so emotional writing this. For so many years I’ve dealt with something like night terrors and I just didn’t realize other adults experience the same thing. I usually wake up suddenly in the night hearing an audible voice (but no vision) or seeing something in the dark room and believing it to be something dangerous–for example I’ve yelled at or even punched my husband believing he was an intruder. Sometimes I wake up from a bad dream and it takes me a minute to realize it’s not still happening. It seems that whatever stress I’m having at the moment in my life is manifested in my dreams. So, I’m planning an upcoming meeting for my church and I wake up suddenly believing 100% that I just heard the doorbell ring and everyone is there for the meeting but, I am totally unprepared. Or if my husband is out of town I will wake to a voice warning me there is an intruder in the house. I had forgotten until reading your article that I had similar dreams as an adolescent but, they often included a visual component as well that faded as I came to reality. As an adult I had decided these dreams must have to do with stress since they always manifested my stress or fears. Well, a year and a half ago I did a whole30 and during that process my bad dreams went away. The whole30 was really hard so, it seemed strange that I never had those terrors during that time. A few months into my new paleo lifestyle I was struggling with not being able to get asleep at night. This had NEVER been an issue in the past so, I did some research. Something I read at the time convinced me I needed more carbs so, I upped my carbs but, still was 95% paleo. After being paleo for 8 months I realized I needed to be 100% gluten free in order to maintain my mental health. I finally saw the connection between my ongoing depression, ADD, anxiety, and fatigue —gluten. So, for about a year now I have been determined and 100% gluten free. Unfortunately I have been glutened twice and my symptoms of anxiety, depression, fatigue, and ADD came flooding back for weeks at a time. I am still recovering from the second glutening and have been dealing with crazy dreams again. It’s exhausting. My question, after that long story has to do with waking in the night. The last 6 months or so I’ve been waking in the night with no rhyme or reason (as far as I can tell) and without the scary dreams. Could this waking without the dreams have to do with hypoglycemia? After the insomnia I had in the first few months of starting paleo I have slowly added back more starch (sweet and white potatoes) and even paleo sweet treats to my diet. It suddenly hit me today that my waking at night came back around the same time as eating more starch and sweets. I’m going to start back on a lower carb routine tomorrow to see if it helps my sleep. I’m curious what you think about that and I’m also wondering about one thing. Is it common to be glutened from kissing? My husband and daughters are not 100% gluten free. Could I be getting glutened by kissing them? Ugh, my brain is in a fog right now and I’m probably rambling. Thanks again for sharing this story (though the end was super creepy lol) and I look forward to your feedback. 🙂

    Katie Bauer · October 1, 2014 at 2:44 pm

    Hey MrsOgg, thanks so much for sharing your story here and reaching out! Congrats on determining that you need to be 100% gluten free for your mental health. Yes! Me too! I am mostly paleo, but when I eat out or at a friend’s place, I am only strictly gluten free unless I have enough options to be paleo at those times too. A lot of folks have neurological reactions to all grains, not just gluten-containing ones, but for me, I prefer to stay grain-free to make it easier to keep my blood sugar balanced and I just don’t think grains are very healthy for us and I would rather get my carbs from veggies.

    Yes! Definitely your waking-up in the middle of the night could be because of blood sugar drops. That is a common symptom of blood sugar imbalance. That said, we need a certain amount of carbs whether they are from fruit or root veggies, especially if you are very active. But there are other things you can do to support your blood sugar balance while having some carbs in your diet:

    1) Eat the right breakfast at the right time and do not include root veggies, dairy, fruit, grains or other sugars in that first breakfast (see this article: http://www.nourishedhealth.com/end-3pm-slump-cravings/ ) 2

    2) Don’t have anything sugary right before bed. Make sure to eat a snack right before bed–definitely, but keep it protein-based and very small. A hard boiled egg, a piece of nitrate-free jerky, some nuts or seeds, etc. If you wake up in the night go ahead and eat something containing protein and fats that is small and see if that helps you go back to sleep, but pre-empt this by eating something right before bed low in sugars.

    3) Make sure to only consume carbs in the presence of protein, fat and fiber. Meaning–Don’t have an apple alone, have an apple with almond butter. Don’t eat roasted winter squash alone, eat it with eggs or ground beef or whatever your protein interest. If you are going to eat a dessert (even a paleo one), only eat dessert after having a meal that contained protein, fat and fiber (all of them should).

    Those are the biggies. there may be other things that would help like chromium and b vitamins but try those 3 suggestions first.

    Yes, you can be glutened from kissing. It all depends on how sensitive you are. Here are some other ways cross-contamination are common in a gluten/gluten-free mixed household: http://www.nourishedhealth.com/cross-contamination/

    Good luck and please pop back and let me know how it is going–I’m quite curious to see if your sleep improves with making the 3 suggested changes above. It is especially important to get this all under control before the holidays hit which is when everything becomes more confusing and more challenging to track. Take care of yourself!
    Katie Bauer recently posted..Are Your Sugar Cravings all “in Your Head”?

Cari · October 7, 2014 at 2:48 pm

Last night, after going to bed early, I woke up at midnight, screaming in sheer terror as I stared at “the man” who stands at my bed and watches me while I sleep. The man who I’m convinced in that moment is going to kill me. I sat up abruptly, threw my pillow at him, then slowly began to realize, as I always do, that he is not real. Normally, I lay back down and go right to sleep, but not this time. This time I had to turn the light on for further convincing that he wasn’t real. When I saw my room was empty, and there was no threat to my life, I went to my bathroom …and cried. There alone in the dark, I sobbed and cried for half an hour. I couldn’t catch my breath, I couldn’t stop shaking, the tears just kept coming.

Why is this happening to me? Am I losing my mind? Is this a demon I’m seeing, almost weekly now, in my room at night? Is there a chemical imbalance in my brain? Whatever it is, I can’t live with this anymore. I need answers. Do I call a pastor for an exorcism, or a Dr. for an MRI?

In search of answers, today I found your blog. You detailed perfectly the last 3 and a half years of my life. Could this hell I’ve been living and become accustomed to all be attributed to a stinking gluten intolerance? It looks like I’m about to find out.

Thank you so much for sharing your story. I finally have some direction. I think maybe I’m not crazy after all.

    Katie Bauer · July 22, 2015 at 7:25 pm

    Hi Cari,

    Sorry for the delay in my response. Sometimes I don’t receive notification of comments and just happened to notice your comment when I received notification of someone else’s comment. So sorry!

    Your story exactly echoes my experiences. So I would love to know what the result was… Did you do a gluten elimination diet or get tested? If you test for gluten sensitivity, I suggest Cyrex Labs Array 3 which tests for 24 different antibodies instead of simply celiac disease (IgA to to tissue transglutaminase) or if you are lucky IgG to gliadin: https://cyrexlabs.com/CyrexTestsArrays/tabid/136/Default.aspx This greatly decreases the amount of false negatives that are received. If you do an elimination diet, give yourself 3 months being STRICT gluten free (so no oats and no bulk food items) and preferably grain-free (even the gluten free ones). If your night terrors are improving but not gone, continue the elimination diet for a year which Dr. David Perlmutter suggests is necessary for neurological symptoms to abate. And if it isn’t gluten, don’t give up. There are other directions to look to such as issues with phytates, heavy metal contamination, leaky brain, brain dysfunction, low neurotransmitter levels, reactions to FODMAP containing foods, high histamine levels, reactions to sulphur containing foods, non-gluten food sensitivities etc. Don’t give up! The fact that you have only been experiencing this for the last four years indicates that something turned on a gene or something new happened (a brain injury, high stress or introduction of a toxic environment). Figuring this out will help you figure out what is causing the issue. Please report back!
    Katie Bauer recently posted..Creating an Honorable Gut (A Gut with Integrity) and Ditching the Leaky One

Emma · April 12, 2015 at 1:57 pm

This is such a fascinating story and I’m so pleased you found the cause. My 20-year old son has had night terrors and hallucinations since he was a baby and now they are getting worse. He has also always had severe insomnia. He is exhausted, disorientated and keeps asking why he isn’t like other people. He can’t get on with his life and the night terrors are traumatic for his girlfriend and mates to witness. He also feels ill after eating despite being hungry. He always gets up from the meal table to rush to the loo. He is sore and bleeding from having to go every time he eats anything. The doctors have never tested him for anything and just say ‘he will grow out of it’and offered him counselling.

We eat healthy food: like fresh curries made with ginger and turmeric (and a stock cube), brown rice, salads, fruit and wholemeal bread and cereal. A bowl of muesli makes him gag and causes his stomach to be distended. He also Has a tremor. He desperately craves protein and he looks as though he starved.

When he was little I would buy whole organic milk rich in melatonin (from evening-milked cows) and play soft music, warm baths, gentle evenings. Nothing made a difference. He would be awake til 4am and screaming at 5am.

This week I will get him to go to the doctor and request a test for gluten antibodies. I will also get in touch with a naturopathic allergy tester. Your wonderfully positive story has resonated so much with what I have watched my son go through, so I am crossing my fingers! Thank you

    Katie Bauer · July 22, 2015 at 7:32 pm

    Hi Emma,

    Sorry for the delay in my response. Sometimes I don’t receive notification of comments and just happened to notice your comment when I received notification of someone else’s comment. So sorry!

    Did you get your son tested? Please read my response directly above to Cari regarding optimal testing options and how to do an elimination diet. I would also suggest you get your son tested for Inflammatory Bowel Disease given the bleeding and the food reactions. You will need to go to a gastroenterologist to do that. I would also suggest that you get your son tested for small intestinal bacterial overgrowth–make sure they test both hydrogen and methane producing species and do this via a breath test. If SIBO overgrowth is the issue, he will react to many fiber containing foods that ferment in the small intestine and feed the bacteria that isn’t supposed to be there. And if your tests for gluten are negative, I still suggest he does a gluten elimination diet. It can’t hurt to try! I would love to know the results. Please report back!
    Katie Bauer recently posted..Allergen-Free No Bake Chocolate-Sunbutter Bars (Paleo, grain-free, nut-free, egg-free, refined sugar-free, chocolate-free option, raw option)

KJ · July 22, 2015 at 8:47 am

This page may possible change my life. I’m hoping! I have suffered from night terrors as an adult my entire life. I am 38 now, and they have become so bad that I at times wake up feeling like I cannot handle it anymore. Psychosis describes it well. I dream I am choking, dying, my head is being twisted, like someone is trying to snap my neck. I dream I am being chased, beat, or that someone is standing in the room with me. I often wake up hanging my head over the side of the bed, crying like a baby and trying to cough up something (bugs, broken glass, etc) that I believe is stuck in my throat. I have reached out for help on several occasions. Adult night terrors are so rare, that sleep specialists just diagnose me with parasomnia and put me on Neurontin, antidepressants, muscle relaxers, anti-anxiety meds, etc. I do not want a pill to fix my problem, I want to find the underlying source.
Anyway, I was diagnosed with Hashimitos 14 years ago, and spent 10 years on thyroid meds, and my nightmares (terrors) improved slightly. I have had every possibly brain scan, mental health evaluation, blood test etc. Nothing shows up except a non-CDC positive Lyme Disease and Hashimotos. No celiac disease. I went to a new doc because my last doc told me, hey you don’t need thyroid meds, I won’t fill your script anymore. And took me off cold turkey. Nightmares went from 3 days a month to 25. 4 years later, I finally said I need the meds. New doc put me right back on. And said “Hey Kelly, since you have Hashimotos, you should go gluten free”. What??!! I have never heard of that. Ever. I started consulting Dr. Google, and started to see a correlation between Hashimotos and Gluten intolerance and gluten intolerance and night terrors. Ant this is when I found your site. I am trying GF starting this minute. It will be a challenge because I am also a vegetarian. How long before you stopped having the Psychotic behaviors? I am hoping this will work. Honestly I feel like I must be dying from a brain tumor or am becoming schitzophrenic. I fear my husband will leave me because no one sleeps from my nightime screaming.

    Katie Bauer · July 22, 2015 at 7:14 pm

    KJ,

    Congrats on seeking out the cause of your night terrors and paying attention to when the prevalence of the night terrors is higher. Gluten is not be the cause of all folks sleep issues or mental challenges, but becoming strictly gluten free may be your solution! It’s worth a try, right? Regarding studies to this affect, there is an interesting study that found a correlation in psychosis developing in offspring to mothers with non-celiac gluten intolerance (having elevated IgG antibodies to gluten): http://ajp.psychiatryonline.org/doi/abs/10.1176/appi.ajp.2012.11081197 And there are some interesting studies connecting gluten to schizophrenia linked at the end of this article: http://celiacdisease.about.com/od/glutenintolerance/a/Gluten-And-Schizophrenia.htm

    Yes, gluten is a very similar protein to our thyroid so if your body is attacking your thyroid it is very probable that gluten is a trigger for that autoimmune attack. I link a bunch of studies relating gluten sensitivity to Hashimoto’s above, on a comment on May 23, 2013. I’m not sure what the connection is for why thyroid meds decreased your night terrors, but certainly there is one!

    All of this said, you may find going gluten free is not enough. You may find that it is only one piece of the puzzle. You could have an issue with phytates in all grains or you could have an issue with histamine-liberating/containing foods or an issue with FODMAP containing foods, but certainly since gluten is true for all of these classes of issues, it is a great place to start! If it decreases your night terrors but doesn’t get rid of them you will want to ensure that you are not getting gluten cross-contamination from oats, bulk food purchases or something else in your diet or that it isn’t one of these other issues. There are also foods that they body can confuse for gluten (called cross-reactive foods), which you can identify via a test through Cyrex Labs. These foods include all of the gluten free grains, coffee, chocolate, potatoes and some others. So there are lots of puzzle pieces, but don’t get discouraged, but there is a solution, you just have to uncover it!

    When I originally became gluten free I was vegetarian and it was quite doable. Instead of utilizing wheat gluten (or soy) as a protein source, I suggest you focus in on hemp seeds which is the 2nd highest source of vegetarian protein (next to soy). There are plenty of gluten free grains, though there is a certain level of cross-contamination that happens with all grains. If you are going to consume grains, I would suggest sticking more with the quasi-grains: quinoa, buckwheat and amaranth and soaking and rinsing the grains well. Given that you have an autoimmune condition, I would suggest only consuming grains and legumes that are certified gluten free and avoiding bulk options because of cross-contamination risks. I offer suggestions for transitioning to being gluten free in this article which also includes links to some gluten free recipe resources: http://www.nourishedhealth.com/glutenfree-zombie-avoidance/ and here are some quick and easy menu suggestions: http://www.nourishedhealth.com/gluten-free-meal-ideas/ I eventually found that I do better without any grains or beans in my diet (although my night terrors seem to exclusively be linked to gluten), as such I started eating meat again as being a grain- and bean-free vegetarian is more of a challenge than I was willing to try!

    It’s hard to know how long it will take for your night terrors to go away if the cause is gluten… For me, after culinary school I started only cooking gluten and dairy free (and was vegetarian) because I enjoyed the challenge, but was still consuming gluten when I ate out. So there were a few years when I was consuming a very low gluten diet before eliminating it. This likely sped-up how long it took for my night terrors to respond to gluten elimination. My night terrors were so minimal at the time, that I didn’t notice they went away until I added gluten back into my diet 2 months after eliminating it (thinking that gluten elimination had no effect on my body). I didn’t connect that gluten could have had any affect on my night terrors until they came back so strongly when I reintroduced gluten and then I realized I hadn’t been having them at all. So… All of that is to say that I don’t know. Dr. David Perlmutter, a neurologist, indicates that it can take a year of strict gluten elimination to affect neurological symptoms and if a person cheats, he indicates that restarts the year-long time clock. Dr. Datis Kharrazian indicates that an autoimmune attack on the thyroid can continue for 5 months post-consumption of a bite of a gluten-containing product! Generally, elimination diet proponents suggest 1 month elimination for non-autoimmune folks and 3 month elimination for autoimmune folks (including those with Hashimoto’s). You may want to do a strict elimination of all grains during those 3 months and then add them in one at a time. If after 3 months there is improvement but night terrors aren’t gone, I would continue to be strict and give yourself the full year that David Perlmutter suggests. Though with Hashimoto’s you should probably simply eliminate gluten regardless of whether they are connected to your night terrors or not.

    I would love to know how it is going! Please report back and if you need any additional support, you can schedule a complimentary phone nutrition strategy session here: http://katie-bauer.youcanbook.me/
    Katie Bauer recently posted..I Ate Wheat on Saturday!

      KJ · July 25, 2015 at 7:57 pm

      Thank you so much for your detailed response. I am on day 4 gluten free, though I have not completely elimimated all grains, and I now see that might be necessary. Night 1 was awful as usual. Night 2 I had about half the normal night terrors. Last night, unbelievably, I do not recall having a single night terror, though my husband says he think I was up yelling once. Once! If just once, and not remembering anything awful, it is huge. I don’t expect my life to change in 3 days, but just having a good night got me through one more GF day. I will keep it up at least a month, and I am going to start a food and sleep journal to track. I do plan to injest gluten after a month to see exactly what happens. Not to torture myself, but to really get a good picture. I am a beer lover. Stout especially. Don’t want to have a placebo effect and give up my beer! I do feel a mental clarity today, though I am suffering from a mega migraine at the moment (is there a gluten withdrawal?).
      Tomorrow when I have more time, I am going to go over your whole page and all posts and links and collect everything that might be useful to my situation. Thank you so much.
      one final thing tonight… I so want to share this page with my famy, but the stigma and fear behind the word ‘schizophrenic’ is stopping me.my family would easily label me that amd I’d never outlive it.

        Katie Bauer · July 26, 2015 at 9:50 pm

        KJ, Thanks so much for reporting back your progress!!! That’s great that there has been an improvement after only 3 days! Sounds like you could be on the right track!

        Yes, I think you should add gluten back in after you remove it, just to confirm what symptoms may result. I would strongly suggest 3 months instead of 1 since it is neurological symptoms you are looking at.

        And, although you certainly don’t want to hear this… Definitely read the research on the connection between Hashimoto’s and gluten sensitivity and consider removing gluten to minimize potential attacks on your thyroid regardless of the results of your elimination diet.

        Yup… I hear you about stouts! The ONLY two things I miss about gluten consumption is stout beer and phyllo dough! 🙂 But its quite worth it to have quit. And yes, there are gluten free beers, though I am not a big fan and have preferred to simply quit beer!

        Regarding gluten withdrawal… Yes! Definitely possible… A couple potential causes. First, for some folks gluten attaches to the opiate receptors in their brain making going off gluten like going off heroin–extremely challenging to break that addiction and can result in withdrawals.

        Second, if your body responds to gluten as a toxin (so you have gluten sensitivity) with an inflammatory reaction, your liver has to detoxify gluten and you have to process it for release. I discuss some about how detoxification works in this article: http://www.nourishedhealth.com/cleanse-danger/ and if there are too many toxins to detoxify (e.g. constant beer drinking), the body stores the toxins to deal with later. When we decrease our toxic load and/or quit consuming foods we have a sensitivity to, all of a sudden, our body can get to the stored toxins and those get released into the blood stream causing uncomfortable symptoms (usually headaches, acne, rashes, digestive distress, fatigue and snarkiness).

        Third, if you have gluten sensitivity and you stop consuming gluten, your body doesn’t get the endorphin rush from consuming something it recognizes as a toxin and putting your body into a state of stress. Endorphins feel good, often subconsciously and result in our craving of foods that we have an allergy/sensitivity to. And our body will do whatever it can to convince us to stay in homeostasis and continue to consume those things that may be are bad for us to create stability and keeping things the same.

        Finally, if you are eating less because you went off of gluten and have not replaced those foods in your diet you could be having headaches as a result of low blood sugar. Likewise, your body could be detoxing sugars if you did not replace gluten with a different grain. Or you could be spiking your blood sugar if you are consuming a different grain that isn’t very high in protein. Oh and carbohydrates also spike serotonin so you could be experiencing headaches as a result of lower serotonin while your body stabilizes and learns to produce it on its own again!

        I hear you about the stigma around mental illnesses. Around the time that I wrote this article, I gave a presentation at the Public Health in the Rockies Conference on gluten and I decided for the first time to share my (this) story. So my first experience in “coming out” about gluten was at a professional conference. I thought that it might result in humiliation or decrease my professional legitimacy, but instead folks in the audience opened-up about their own “embarrassing” mental health challenges and/or their own embarrassing experiences with gluten. This article is by far the most popular article on my website and by far the most commented on and I think it’s because I am being real and honest and other folks can relate. I now tell my story about gluten every time I give a workshop on food sensitivities, gluten or inflammation and it always surprises me by how beneficial it is to both the audience and to my own healing. In part, it is my way of decreasing the stigma around mental illnesses and giving folks the green light to seek the root cause of their own health challenges instead of relying purely on the medical community. And it is also my way of accepting myself for who I am.

        As far as family goes, here is the thing, they probably love you and want what is best for you and if going gluten free creates change, they should be happy and supportive of you. Additionally, gluten sensitivity is genetic so if you react to gluten, your parents, grandparents and siblings most likely also do, but probably in a different way. Their symptoms may be digestive or may be other neurological manifestations like tremors, headaches, brain fog, etc. This may bring it to their awareness that they too should look at their possible reactions to gluten as any inflammatory immune over-reactivity is damaging regardless of the outward symptoms. Oh and autoimmune conditions and mental health issues are also genetic…

        The bottom line is that when I finally became comfortable telling my story and talking about my symptoms, I became more accepting of myself and opened myself up to more authenticity which in turn created stronger relationships in my life. And if someone has a problem with my authentic self, I don’t need them in my life anyway!

        You are not alone.
        Katie Bauer recently posted..Biohacking & Mother’s Day Quick and Easy Allergen-Free Chocolate Cake with Chocolate Mousse Frosting

          Benjamin Claus · August 12, 2016 at 2:53 am

          Your feedback is valuable.. Thank you

          I have to point out that the body doesn’t ‘store’ toxins. It would be inaccurate to describe it like that. The body is continuously removing toxins but if the input is greater than output then accumulation is the result.

          Also these toxins you are referring to don’t get in the blood stream, this would cause death.

          The body also doesn’t release endorphines from consuming toxins but you are accurate about it being a response to stress.

          Gluten sensitivity is NOT genetic, gluten intolerance and celiac disease IS.

          These things are pointed out are important as you are giving people workshops and most likely giving them wrong information. You don’t have to change your lectures for me, but it does give you something to think about, if thats what you prefer.

          Other than that your feedback is highly accurate

          Have a nice day

Andra · September 19, 2015 at 11:55 pm

Katie, thank you thank you thank you! I know that this is an older post, but it is so relevant to me. I sit here, at 1:30am, just coming down from a similar episode. I am relatively recently gluten free, for about 4 mos. For years I have had gut issues, and sleep issues. I have always had very vivid night terrors, to the point where I had stopped talking about them for fear that people would think I was crazy. Even now, my husband knows I have them, he is a nursing student, but even he doesn’t fully understand. I wake with panic attacks. My brain tells me that something horrible (as if from a SiFi movie) is happening in my body, or around me. My heart races, sweat pouring off of me, chills, numbness etc. The only thing that snaps me out of it is to let the worst of it ride, then get up and walk around the house a bit, sit for a while, so here I am. My brain is still buzzing. I have had very few nights like this in the past 4 mos…. Tonight was the worst in a long time. I know exactly what did it…. I ate a sandwich and a cupcake at a party. I know better, I really do, but I was so hungry! The brain fog came on within an hour, then came the heartburn and gas pains. The combination of those three seems to be the key, as many of my hallucinations somehow work out to be my brain over reacting to what is happening in my gut. It is not even something that I can explain, and I have tried! On top of the gluten intolerance, I also cannot eat dairy or eggs. I am still getting used to this, but when I am careful I feel 1000x better! Tomorrow I will start over, and when I want to eat that bread or that cupcake I will think back to this.
Thank you, I am glad to know that I am not just crazy for feeling that it is the gluten doing this to me!

Em · October 29, 2015 at 2:52 am

Hi

this is very helpful and I wonder if anyone could direct me to a nutritional therapist in the southwest (England).

My husband had apnoea which he solved through exercise, not smoking etc. My brother had awful sleep issues. My problem is my 20 year old son. Since babyhood he has had night terrors, hallucinations (day and night) etc. They are just horrible. At 3am in our house it sounds like a murder is being committed. All the windows are permanently open and we don’t have the heating on because any heat makes it worse – particularly as one of the symptoms is night sweats. He has now started to self medicate with cannabis which is really upsetting me. He sleeps through the night but at what cost?

Because the doctor has never been any help “how about counselling?” we have felt on our own. This condition not only leaves the sufferer exhausted, it also means they can’t go to university or risk communal living.

A few months ago I suggested we cut out gluten. The effect was huge. The night terrors got even worse – lasting all night. Then he started to feel what he described as ’empty’. He was very down. He filled this emptiness with cannabis. Now he eats normally (with gluten)and smokes cannabis to control the night terrors. I feel this is not the answer. We are all sleeping but at what long term cost?

So, if anyone knows of someone who can properly advise us (in UK) I would be so grateful

    Em · October 29, 2015 at 3:12 am

    Sorry – when I say ‘advise’ I don’t mean this website isn’t offering wonderful advice! I just mean I need a face to face professional as well who could actually help my son develop a programme of self-care

    viktor · August 11, 2016 at 3:40 pm

    He should eat less gluten yet still on daily basis but combined with more potato. This is to cope with gluten sensitivity. Potato contains certain enzymes that help break down gluten.

    He can try L-Phenylalanine. Its to increase dopamine for decreasing serotonine.

    As in my case, the high likelihood origin of my gluten sensitivity is cause a doctor decided to kill the h. Pylori in my stomach after i came to him with stomach pain. Im eating more molded cheese ( blue cheese is the best one) to restore the bacteria in my stomach lining.

    My symptoms have been mostly severe daytime hallucinations.

    Have a nic! Eve

L.N · September 11, 2017 at 2:50 pm

Thats sounds very scary. I get headache, palpitations and diarrhea when I eat grains. Its not just gluten for me, its the whole grain I have to avoid.

I Ate Wheat on Saturday! | Nourished Health · November 12, 2014 at 2:53 pm

[…] Sharing My Story of Gluten-Induced Schizophrenia and Night TerrorsMay 31, 2012 […]

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