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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease?  Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes
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TwitchyMcLurcherson

Gluten Neuropathy

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I've been really struggling since mid June with sudden onset gluten neuropathy. It's getting worse. I think I've had symptoms of gluten intolerance for at least ten years, but it was all gastrointestinal before and misdiagnosed until August of this year.

One afternoon, I fell asleep exhausted on the couch. When I woke up, I was drooling prolifically and could barely get my body to respond to walking or anything... I felt like I'd been drugged. My vision was blurred (ocular ataxia). I soon began vomiting, then my feet turned in and locked (dystonia), then my hands. This came and went. Within a few hours, my torso was jerking (myoclonus), head turning, muscles convulsing, and hands (especially right) tremoring. Slurred speech, stuttering. Unable to walk (ataxia). Needless to say, we went to the ER (of a world renowned hospital). They sent me home, confused with my condition. The next morning, I woke up with an insane migraine and was rushed via ambulance back to the same ER- I don't remember that ride at all. Long story short, MRI revealed very little, other than a couple of white lesions on cerebellum (which they weren't concerned about). The rest of the tests came out negative. No seizures apparent on EKG. They sent me home, again. Neurologists had a no clue- not any of the 15 OR SO that came by to examine me.

The neurologists at Harvard told me, after a five minute cursory exam, that it was "psychological" and that I should see a psychiatrist.

Over the next two weeks, I did my research, went on a trial diet (where I discovered the neuro symptoms returned within 30 minutes of accidentally ingesting gluten), returned to the same doctors, and asked for a blood test for gluten intolerance. They didn't believe me, but ordered the test anyway.

It came back POSITIVE. It's been two months since my diagnosis and I try everything I can to stay gluten free.

So long as I avoid gluten in ANY increment, I don't get the neuro symptoms. But within 30 minutes of getting "glutened", they return in full force, starting with a steady progression (first face flushes, my vision blurs, right hand starts tremoring, 10 minutes later my head starts whipping left, and five minutes after that my muscles seize and feet turn in, locking). I have Diazepam for when this happens, and it's worked so far, so long as I catch it when my hand starts tremoring...

... until last night. Last night it failed to work at all. I was left in public when it happened and fell down outside of a cafe. No one would look at me or help me (I live in a major city- nearly 150 people must have seen me). The medicine didn't work.

It's been 18 hours since and I can't stop tremoring (except when I sleep). I'm ONLY 25 YEARS OLD.

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You poor thing. I can't believe no one would help you. You need to call the doctor back and tell them the drug is not working. That must have been a really scarey experience for you. If you are in public and you feel the event coming try to get to somewhere where someone can call an ambulance or phone someone to get you. I am so sorry you din't have even a single person try to help. You are in a great place to learn what you need to do to keep yourself safe. There is a lot to learn about being gluten free and you are likely to be very sensitive. Please read as much as you can here and do ask any questions you need to.

I have neuro issues with gluten also but not as severe as your have been. I did have seizures on gluten but they were mild compared to what you are going through. I also had vision issues and for a long time had 2 pairs of glasses, one to wear when glutened and one for days when I wasn't. I also have the ataxia and those little white spots on the MRI are called 'UBOs" or unidentified bright objects. Unfortunately here those are considered a mystery and doctors don't think they mean anything. In other countries they are diagnostic of celiac antibodies attacking the brain. I would have been diagnosed literally years before I was if my neuro had known what those 5 bright white spots were.

I am glad that you know what caused the problem. Know your not alone in having the neuro issues and that you can heal.

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The post cut me off before I'd finished. :)

What prognosis is there for neurological gluten reactions? I can't find much. My doctors know little to nothing (so much for Ivy League medical research). I have two children younger than 3. I'm a student. I don't want to end up in a wheelchair or worse. But if that's the reality, I'll accept that. I'd just like to know. Anyone else present neurologically? Please, please tell me your stories, coping mechanisms, and anything else. I don't know anyone else with this at all (supposedly my reaction is extremely rare).

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You poor thing. I can't believe no one would help you. You need to call the doctor back and tell them the drug is not working. That must have been a really scarey experience for you. If you are in public and you feel the event coming try to get to somewhere where someone can call an ambulance or phone someone to get you. I am so sorry you din't have even a single person try to help. You are in a great place to learn what you need to do to keep yourself safe. There is a lot to learn about being gluten free and you are likely to be very sensitive. Please read as much as you can here and do ask any questions you need to.

I have neuro issues with gluten also but not as severe as your have been. I did have seizures on gluten but they were mild compared to what you are going through. I also had vision issues and for a long time had 2 pairs of glasses, one to wear when glutened and one for days when I wasn't. I also have the ataxia and those little white spots on the MRI are called 'UBOs" or unidentified bright objects. Unfortunately here those are considered a mystery and doctors don't think they mean anything. In other countries they are diagnostic of celiac antibodies attacking the brain. I would have been diagnosed literally years before I was if my neuro had known what those 5 bright white spots were.

I am glad that you know what caused the problem. Know your not alone in having the neuro issues and that you can heal.

Have your seizures, atazia, and vision problems gone away, or do they continue sporadically (as indicative of irreversible damage to your cerebellum)? I'm getting worse.

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I feel for you. I wanted to give you some encouragement. I have only minor neural issues. The longer I remain gluten free, the less severe and more rare are my glutenings. The neural issues took the longest to heal, it seemed, but they don't come back as fast either. Hopefully over time your glutenings will become less debilitating.

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Have your seizures, atazia, and vision problems gone away, or do they continue sporadically (as indicative of irreversible damage to your cerebellum)? I'm getting worse.

Yes mine for the most part went away. I did however have to be really strict. I live in a gluten free house and I eat mostly whole unprocessed foods. I eliminated it from everything I came in contact with. I have to be very careful to not get CC'd because the symptoms come back if I do. I also found I am sensitive to distilled gluten grains so I avoid them in pickles, vinegar and alcohol.

Be sure you have checked with the maker to be sure all meds and supplements are gluten free. Be sure to read the whole label with supplements as some will have barley and wheat grass in them and still be labeled gluten free. You don't want any with either grass in it.

Do follow up with your neurologist about the med your on. Hopefully being really strict with the diet will resolve some of the issues. Over time my neuro effects, while still there when glutened, have improved a great deal and their effects when I am glutened are milder. Hopefully the same will hold true for you.

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For an example of what this looks like in ONE area of my body, here's a video of me today trying to draw with my right hand (I'm right handed). You should see me try to walk.

My link

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I too do have some neuro symptoms with celiac.

It's just a mild to moderate vertigo-like attack though lasting a few days into a week sometimes. It's what I would describe as tolerable as compared to you. I will keep you in my thoughts and prayers as it's got to be very frustrating to go through something like that being so young. I'm 28 and my co-workers are convinced I'm falling apart.

It's a good thing you have caught what the culprit is though and this gluten-free thing DOES get easier :)

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I worked with a lady who had very similar symptoms to these. We worked together as dance instructors. One day at work in the break area I found her passed out cold in the floor. She came to pretty fast, disoriented for a bit. It scared us all and she never told us what was wrong. Then another day, she ate a salad from chick fil a which was not her usual routine, and she started loosing her motor skills, including speach. I immediately got her in the bathroom, where she was again disoriented, slurred speach, jerky movements, etc. And passed out again. She soon after quit her job because of the health problems, but told us that she had had a stroke before, and had brain lesions, but didn't still know why. Months after she quit, I called her up, and she told me she had been diagnosed with Celiac disease. I hope this helps some, even though I can't tell you much more about it.

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Have you been worked up for any kind of concurrent seizure disorder? Had an EEG done, etc? It's possible that instead of needing diazepam only when you get symptoms, you should be on it full-time to prevent attacks.

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The post cut me off before I'd finished. :)

What prognosis is there for neurological gluten reactions? I can't find much. My doctors know little to nothing (so much for Ivy League medical research). I have two children younger than 3. I'm a student. I don't want to end up in a wheelchair or worse. But if that's the reality, I'll accept that. I'd just like to know. Anyone else present neurologically? Please, please tell me your stories, coping mechanisms, and anything else. I don't know anyone else with this at all (supposedly my reaction is extremely rare).

Hi Twitchy.

I can understand how you feel as I have numerous neorological symptoms.

I was diagnosed with Chronic fatigue 20 years ago and only 18months ago did I realize that I was gluten intolerant. I didn't have a diagnosis but as soon as I went on the diet, all my stomach problems subsided. Unfortunately my neorological ones didn't and I suffer with bad muscle weakness which lead to tremours, twitching and shaking.

Over the past 10 years I have taken different supplements and one which I take regularly is Pantothenic acid (B5). 6 months ago I started to get excrutiating pains in the head which left me unable to speak, I thought I had a tumour as I also went deaf in one ear. I eventually had an MRI scan which showed I had inflammation of the Menancoccal lining of the brain, which my dodctor couldn't explain. Anyway to cut a long story short I have found out that my diet, which is rich in Brown Rice and also I drink Rice milk, together with the B5 is making my head pains worse or could be causing the problem. I went onto google and saw the symptoms for overdose on Pantothenic acid which mirrowed mine. The only conclusion that I can come up with is that I must now be ingesting the vitamins in my diet as I have been gluten free for 18months and the Pantothenic acid is just too much for me to cope with.

I still have all the neorological problems, like twitching and tremours, pounding in the head. I am exhausted most of the time and now that I cannot eat Brown Rice its another blow because the diet is even more restricted as I am intolerant to Soya, Milk Oats, Maize, goats milk.

The B5 acted like a steroid as it feeds the Adrenal glands, so I am going around like a rag doll at the moment.

Is there anyone else who sounds like this?

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There is an expert on gluten-caused neurological symptoms in the UK who has published extensively, Marios Hadjivassiliou MD. Perhaps you could email him to ask if he knows of anyone in your area who might have some experience working with severe gluten neuropathy. I will PM you his contact info from a recent research paper.

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My daughter and I believe we have neuropathy from gluten intolerance or Celiac. Mine started in March of this year, my daughter in July. My symptoms are mild, peripheral neuropathy and tremors now and then. My daughter gets severe migraines, much more persistent and painful neuropathy, and tremors as well.

The most harsh of the symptoms disappeared when we started gluten-free, but she still gets some of the symptoms which worries us that more foods might be an issue as well, or perhaps there was damage.

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I started having seizures before I was dx with celiac disease... The doctors told me it was all in my head. I was too young (at 15) to have all of the problems I did..

I wanted smack him! He did NOTHING of a 15 year old girl having seizures! They all completely paralyzed me until it was over, and during 1, I fell the floor and my face was stuck in blanket... I was suffocating! He said I was doing it to get attention!!

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Hi Twitchy,

I think we've posted back and forth a few times. I have gluten ataxia with all the weird symptoms as well as celiac disease and terrible GI problems. Also emotional problems related to food reactions (Depression, ADHD, GAD, etc.).

Found this tonight online while I was doing some gluten ataxia research for myself. This is a real gem! Surprised I never read it before! Google "gluten ataxia unidentified bright objects" and you'll hit some interesting finds.

http://dfwceliac.org/html/brain_study.html

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I do not have your same symptoms but i am familiar with people thinking you are making it up, a hypochondriac, lazy, crazy, etc.. Forme, I think this was one of the harder sides of my celiac. When I became soooo ill and they kept misdiagnosing me, my family, doctors and many of my friends thought i was making it up, bulimic (from the constant vomiting), lazy, hypochondriac, etc.. The incredible thing is, one cannot 'make-up' our symptoms. It certainly does shake your trust in people and doctors. Hope things get better!

I've been really struggling since mid June with sudden onset gluten neuropathy. It's getting worse. I think I've had symptoms of gluten intolerance for at least ten years, but it was all gastrointestinal before and misdiagnosed until August of this year.

One afternoon, I fell asleep exhausted on the couch. When I woke up, I was drooling prolifically and could barely get my body to respond to walking or anything... I felt like I'd been drugged. My vision was blurred (ocular ataxia). I soon began vomiting, then my feet turned in and locked (dystonia), then my hands. This came and went. Within a few hours, my torso was jerking (myoclonus), head turning, muscles convulsing, and hands (especially right) tremoring. Slurred speech, stuttering. Unable to walk (ataxia). Needless to say, we went to the ER (of a world renowned hospital). They sent me home, confused with my condition. The next morning, I woke up with an insane migraine and was rushed via ambulance back to the same ER- I don't remember that ride at all. Long story short, MRI revealed very little, other than a couple of white lesions on cerebellum (which they weren't concerned about). The rest of the tests came out negative. No seizures apparent on EKG. They sent me home, again. Neurologists had a no clue- not any of the 15 OR SO that came by to examine me.

The neurologists at Harvard told me, after a five minute cursory exam, that it was "psychological" and that I should see a psychiatrist.

Over the next two weeks, I did my research, went on a trial diet (where I discovered the neuro symptoms returned within 30 minutes of accidentally ingesting gluten), returned to the same doctors, and asked for a blood test for gluten intolerance. They didn't believe me, but ordered the test anyway.

It came back POSITIVE. It's been two months since my diagnosis and I try everything I can to stay gluten free.

So long as I avoid gluten in ANY increment, I don't get the neuro symptoms. But within 30 minutes of getting "glutened", they return in full force, starting with a steady progression (first face flushes, my vision blurs, right hand starts tremoring, 10 minutes later my head starts whipping left, and five minutes after that my muscles seize and feet turn in, locking). I have Diazepam for when this happens, and it's worked so far, so long as I catch it when my hand starts tremoring...

... until last night. Last night it failed to work at all. I was left in public when it happened and fell down outside of a cafe. No one would look at me or help me (I live in a major city- nearly 150 people must have seen me). The medicine didn't work.

It's been 18 hours since and I can't stop tremoring (except when I sleep). I'm ONLY 25 YEARS OLD.

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Hi, Twitchy! My name is Cheri; and I, too, have many neurological issues when I eat gluten. I have a B.A. in Criminal Justice, I used to to be a court clerk for 7 years. I worked in a very-high paced environment dealing with hundreds of people a day. Now, I can't even imagine working an 8 hour shift. Most of my life, I've had series of illnesses, I had skin problems, kidney stones, stomach pain for 3 years straight, chronic inflammations in different areas of the body, and so on, and so on. I believe I had neurological issues all my life, but it was masked by allergies, flues, chronic infections. Anyways, I did struggle through work (self medicating), I had no idea what was causing all my problems. I became labeled a hyphochondriac and a drug seeker, right before my neurological issues really kicked in. I had to quit work because I was becoming paralyzed at work, and my vision became erractic. Something happened to me, I had a reaction to medication (not containing gluten). My right hand was twitching radically, I couldn't talk,started studdering, I felt like (the best explanation) I was in deliurum for 3 days, my face was gray and swollen, and I saw at least 6 doctors, and they all told me to see a psychologist. My condition worsen, I woke up paralyzed, had seizures, I was told I had a complex seizure. I had problems talking, walking, depth perception, I basically, looked like I had cerebral palsy, and the medical field turned their back on me. My neurologist, didn't even look at my results of my MRI. I got the results, I had a VMA (venous malformation anomally) on the right parietal lobe. Exactly where it was numb, I basically felt like my neurotransmitters weren't connecting. It said I could of been born with it and it shouldn't cause me problems, then kicked me out the door. I agree with that, but my research and experience is if something affects it , then it causes problems, because I did have seizures when I was a baby. Long story, short, moved to another state after being bed-ridden 2 years, found out it was celiacs. Being gluten-free, has helped me tremendously. When I do get glutened, the right side of my mouth gets numb, my vision goes crazy, anxiety, I'm flushed, hard time talking (ataxia), I start limping, which I think is strange. It's sooo hard to believe that, I went through all of that and it was gluten. So when I do get glutened, I can believe it. I still have issues,I have connective tissue issues, that is disabling now, I rarely have bowel movements, which might be neurological, and my vision will get blurry often. My medical insurance kicks in December, I'm praying for a caring doctor. I'm grateful, that I don't have to take a bunch of medication, I'd be wary of experimenting with them, truly believe gluten-free is probably the only thing that helps, and maybe it was the amount of gluten you were exposed to made your symptoms worse, be extremely careful messing with the brain. I'm comforted knowing that someone else, has the same problem as I do, because, I feel little understanding from people on really how bad it is and how scared I get. But, I'm sorry, you have to go through it. I always tell people, I'm not crazy, it's neurological. Take care.

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    • Lex_ I agree with Ennis_Tx. You need to take some Magnesium.  It works best as a Magnesium Citrate or Magnesium Glycinate. Magnesium Citrate are easiest to find. Take it 2/day for the first couple weeks to see how much more energy you have. Then you can take it with each meal or 2/day and one hour before bedtime if it is not convenient to take it at work. If it is working you (right form of as a Magnesium Citrate or Glycinate) you will will experience vivid dreams. And wake up with enough energy to take on the day. **** this is not medical advice but it really helped my chronic fatigue symptom's. It is good for leg cramps too also known as charley horse's. posterboy,
    • I am sorry that I was not clear.    I only mentioned  your diagnostic background, not to discredit you, but because without any lab results (other than a positive gene test), how can you be sure that gluten (shampoo containing wheat protein) was the actual culprit (not a guess) of your symptoms?  It is common for celiacs to receive follow-up antibodies to monitor their dietary compliance.  This is not perfect, but it is the only tool in the toolbox for now.   My husband has been gluten free 12 years prior to my diagnosis.  He went gluten free per the poor advice of his GP and my allergist.  So, I am not trying to discount your diagnosis at all.  I am just trying to see if other lab tests (e.g. liver tests that were elevated previously for you when you were still consuming gluten) were measured after your shampoo exposure.   I am curious because I have had issues over the last year.  I was glutened last January, had the flu, a tooth infection, a cold and a tooth extraction, three rounds of antibiotics (verified to be gluten free) within a month or so.  Like, you, I am very careful.  I have no idea as to how I was exposed.   The last time I ate out was a year ago and even then it was at at 100% gluten free restaurant.   My hubby did not have any symptoms at this time.  He is like my canary.    I went to my GI and my DGP IgA was off the charts even some three months later.   My celiac-related symptoms diminished in three months, but I struggled with autoimmune hives for six.  My GI offered to do an endoscopy in the summer.  Instead I chose to follow the Fasano diet.  I still was not feeling well.  In December, my antibodies were 80.  They were either on a decline or they were increasing again.  I opted for the endoscopy.  My biopsies revealed a healed small intestine (you could see the villi on the scope too).  But I was diagnosed with chronic gastritis and had a polyp removed.   So, all this time I thought my celiac disease was active, but it was NOT the source of my current gut issues.   Again, my apologies.  I just wanted to know how you know for SURE that hydrologized wheat protein from someone else’s shampoo and conditioner could reach your small intestine to trigger an autoimmune reaction.  Maybe, like me, Gluten was not the actual culprit.    
    • The reason I think it was the shampoo? Process of elimination. Our house is almost entirely gluten free (except for this shampoo which slipped through the cracks until I read the ingredient label). My husband has bread that he eats at lunch, but he practices something that resembles aseptic technique from the lab when he's making his sandwiches. He's been doing this for years now and I've never been glutened from within my home. The previous week I hadn't eaten out, I cooked all my food, I don't eat processed food and I never eat something from a shared facility.  Usually if I get glutened it's a single dose sort of thing and it follows a very predictable course, to the point where I can estimate when I got glutened within 24 hours of when it happened. However, this time, I was feeling achy and arthritic and moody for about a week before it got bad enough for me to recognize it as the result of gluten exposure, at which point we went searching and found the shampoo (and conditioner, which does leave more of a residue than shampoo), which he immediately stopped using. Within three days I was feeling back to normal (which is the usual course for me).  Sure, it could have been something else, but I know how sensitive I am, and, as silly as it sounds, it was the only thing that made sense. The other thing you said: You're correct, mine was not a rock solid celiac diagnosis, but I have no doubt that gluten is the problem. I was SICK. I went through two different gluten challenges in an effort to get a more straightforward diagnosis during which I was a barely functioning human being. Consuming gluten may not have given me blunted villi or elevated antibodies, but it did inflame my gut, and actually started to damage my liver. If you look at my diagnosis thread, I had elevated liver enzymes, which have been correlated with celiac disease in the past. There was no alternative explanation for the liver enzymes, he checked EVERYTHING.  I too am a scientist and I have spent a lot of time with the literature trying to make sense of my condition.  https://www.ncbi.nlm.nih.gov/pubmed/26150087 I also have no doubt that gluten was damaging my intestines in some way, as any prolonged gluten exposure in the past has inevitably been followed by a severe FODMAP intolerance that goes away once I've eliminated the gluten and given myself a month or so to heal.  I also had a very fast diagnosis following the onset of symptoms (~1 year) so it's possible that the disease never had a chance to manifest as full celiac. I wasn't willing to eat gluten long enough to find out. As a result of my diagnosis, hazy as it was, I am *meticulously* gluten free. It is not a fad for me. I don't occasionally cheat. It is my life, for better or worse. All of that being said, I'm not sure what my diagnosis has to do with your question. You say you're not trying to be rude, but when you bring up my diagnosis in a thread that has nothing to do with diagnostics, it seems like you're trying to undermine the validity of my disease or the validity of my input in this forum. If I'm being hypersensitive, I apologize, but that's how you came across on my end. I'll admit that the fact that my diagnosis wasn't more straight forward does make me a bit defensive, but I promise that even if I didn't have a solid diagnosis, I interact with the world as though I did, and I'm not out there giving people the wrong idea about celiac disease by not taking it seriously. If there was a connection between your question and my diagnostics that I missed I would appreciate you giving me the chance to better understand what you were asking. 
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