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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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LauraZ

What Are Your "glutened" Symptoms?

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Over this past summer, both of my daughters and I have discovered we are gluten-intolerant, even though we all test negative for celiac disease. We all express our intolerance a little differently -- I through my skin, my youngest daughter through her energy level, and my oldest daughter through her gut.

Skin and energy level are fairly easy to continue with a regular life, but when my oldest gets "glutened," it will wipe her out for 2-3 days with stomach upset, maybe some diarrhea. We have been pretty good at avoiding everything, but there is an occasional slip-up.

I was wondering how other people react to getting glutened. I know there is probably a wide variety of responses. I'm just curious if the 2-3 day range of being out sick is about average. Also, if your stomach is affected, is there anything you do to help it? We've been using heat and Alka-Seltzer Gold (recommended by a nutritionist), which helps a little.

Thanks!

Laura

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We discussed that question at our celiac support group meeting last night! My symptoms of being 'glutened' are both typical and atypical. I get bloating, gas and excruciating abdominal pain which feels like bits of broken glass are stuck in my intestines. I also get extreme fatigue, but that's easier to handle (with rest) than those excruciating pains. I drink very strong herbal peppermint tea to relax the cramping pains, take hot showers directing the water spray on painful area, or walk. My gluten symptoms can last 7-10 days even after the initial contamination. 2-4 hours after I eat anything I feel pain in the damaged areas. Fortunately I have not been 'glutened' for over a year. My most recent contamination was from dairy (I also have casein and soy intolerances) 2 months ago. You might also enjoy reading the topic "100 (or more) things to do when you're glutened".

BURDEE

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I was wondering how other people react to getting glutened.

<{POST_SNAPBACK}>

Hi there. This is sort of a fun question to answer since no one else really wants to hear about this stuff haha.

My symtpoms from gluten contamination are: Searing ( burning ) gut pains, sharp twinges in the gut, pain in the joints, back pain, extreme fatigue, sores on my skin ( appearing that day or within 3 days ), grouchiness, D. I am sure I am forgetting some. This misery can last 3 days to a week or so depending on the level of poisoning.

My gluten-free ( diagnosed by Enterolab ) gets migraines, depression, lethargy, and some skin sores as well as D. Symptoms last a duration that is proportionate to the amount of gluten ingested. She has gotten 8+ days of migraines from one incident.

I hope this helps

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From the tiniest amount of gluten or casein (I once got glutened after a beer drinker sipped from my wine glass!), I experience the following symptoms that now last about 5 days (used to be 2, then 3...)

- bloating

- acne on face/back/chest

- chronic fatigue (tripping over my feet, dropping things) that no amount of sleep will fix

- severe brain fog (can't hold a conversation, feel like I'm living in a bubble)

- depression

- irritability

- non-stop hunger and cravings for high carb things (as if my body is asking for gluten)

- excema on hands/feet

- waves of nausea

The brain fog/depression/irritability/fatigue lasts for a solid 5 days, the skin conditions take a few weeks to subside fully.

:rolleyes:

If I've had a bigger amount of gluten (ie: not cross-contamination, an actual dish that contained some gluten) then within about 10 mins of eating it my heart will begin racing, I will get severe stomach cramps and back ache, and I will feel like I can't get a full lungful of air, like someone is crushing me in a vice grip! Thankfully these days I only usually get glutened via cross-contamination, which *usually* doesn't trigger the stomach problems. Never the less, I am pretty much useless for those 5 days. Plus I try and stay out of people's way cos I am soooo irritable!! ;):lol:

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constipation, brain fog, severe fatigue, muscle pain --can last for a few days or two weeks, depending...

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I am very sensitive to the smallest amount and I feel it right away.

My reactions usually last 2 weeks but I am usually about 3 weeks to a month before really getting back to 100% again.

The 7th day is usually when I feel the worst..I'm not sure why.

My symptoms are: nausea, anxiety, fatigue, weight loss, irritability, constipation, depression, brain fog..there are some other minor symptoms as well but I think I pretty much covered the main symptoms. Some are usually worse than others.

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If I accidently ingest gluten,I get frequent (3-4 times a day) D, nausea, bloating ,fatigue and just generally dont feel right for about 5 days. Lately, I'm reacting to corn with bloating and indigestion for 1 day or so. I also react to soy, dairy and legumes--these have become a problen since I've been gluten-free.

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As soon as I have gluten, my stomach feels like I've eaten an entire horse and I feel extraordinarily full. My stomach starts rumbling and I will feel like I want to jump out of my skin. Within the hour I get a feeling like someone has hit me across the midsection with a big flat metal shovel. Then the cramping begins, followed by bloating, gas, and sharp pains that feel like I'm being stung inside by angry bees. I also get that feeling like there's broken glass pinching me in there.

Over the next few days I get tired, achy, sore throat, headache, really sore hips, and my skin feels like it is really sunburned. I also get some acne on my face. The mix of D and constipation wears me out. I lose my appetite and lose weight. I'm a grouchy grouchy person and I sleep a lot.

It usually takes about 10 days to clear up, but I don't feel like myself for about 3 weeks.

During this time I stay away from dairy products and any sort of stimulants. I usually have very weak tea and eat a very strict and simple diet of a handful of foods that I am SURE are gluten-free (usually baked chicken with a steamed veg).

I allow myself 2 days to feel sorry for myself, and then I do not talk about or complain about it to anyone (except here :)

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My symptoms usually last from a few days up to 2 weeks. I think it depends on how much gluten I have.

These are my symptoms:

-fluid retention

-fatigue

-depression/crying/irritablity/super overly emotional

-brainfog

-weight loss

-increased food sensitivities/chemicals

-burning/tingling sensations

-muscle/joint pains

-burning or blurry eyes

-headaches

-sometimes I get rashes or skin eruptions

-constipation

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Also, if your stomach is affected, is there anything you do to help it? We've been using heat and Alka-Seltzer Gold (recommended by a nutritionist), which helps a little.

<{POST_SNAPBACK}>

Aloe juice. It's gross and snotlike, but damn does it ever work. I can't believe I lived without it for so long.

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-headache

-sleepiness

-painful bloating and gas

-sharp stomach pains

-nausea

-diarreah

-extreme moodiness - depression, crabbiness, anxiety

-heartburn

-DH breakouts

-aches and pains

The intersting thing is that I seem to get a different combination of symptoms ever time. It lasts anywhere from 2-3 days to a week or more, but the DH breakouts last much longer (I take medication for that now that keeps it under control).

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Aloe juice. It's gross and snotlike, but damn does it ever work. I can't believe I lived without it for so long.

<{POST_SNAPBACK}>

Thanks so much! I'm going to go get some right now.

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Carolyn,

I find that Aloe helps to soothe my tummy as well. I've been using George's Always Active Aloe Juice. I find it at the health food store and it tastes and looks like water. What kind do you use? :)

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Carolyn,

I find that Aloe helps to soothe my tummy as well. I've been using George's Always Active Aloe Juice. I find it at the health food store and it tastes and looks like water. What kind do you use? :)

<{POST_SNAPBACK}>

I'm not sure of the brand, I'd have to look at the bottle. I only tried it for the first time a couple of days ago, and I was so impressed.

The stuff I have definitely doesn't look or taste like water! It has a really nasty cran-apple flavor to it, and it's thick and slimy with chunks (pulp?) in it. Ew.

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My fairly immediate (within 30 minutes) symptoms are SEVERE brain fog with auras and headaches, pretty bad lethargy. After a few hours, the brain fog fades, but the headaches and flu-ish symptoms really come into play - the Big D. My skin tingles like I have a fever. Throat hurts, head continues pounding. Next day, the DH starts on my thumbs, forefinger and middle finger on my hands. Not the rest of the fingers. Usually symptoms last 3 - 5 days depending on the severity.

Now that I'm truly gluten-free, I feel like I can "see" my reactions a little better than before.

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Within an hour, I get rumbling in my stomach, then the brain fog descends. I get the big D, a sinus-type head ache, my hands & feet get freezing, and my right thigh bone aches. I also get very tired, but can't sleep comfortably. This has been lasting about 2 days....but I've only been gluten free for about 2 mos, so I haven't really felt great yet.

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I can usually tell if I've been glutened within a few hours, but sometimes it takes about 12 hours or so. My symptoms are:

brain fog

fatigue

nausea (not always but sometimes)

mild-severe upper abdominal pain

weight loss

diarrhea

chicken pox/mosquito like spots on my skin

heart palpitations (not always but sometimes)

flu-like symptoms

gas

bloating

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Extreme brain fog, almost zombie like.

Fatigue

Weight gain and I bloat up like a balloon

Fortunatley it takes a fair amount of gluten to really knock me out. Very small amounts trigger the same symptoms but I can still function just not at %100 efficiancy.

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I can't tell you because in the five months I have been on the diet I have not been gluttened 1 time. I hope it never happens again. If it does and I have a reaction I will send in another reply. I will admit I also have eaten no meals out except at a family members house. I am very careful about where I eat and most of my food is naturally gluten free. My symptoms before my diag were a rumbling gut, bloating, diarrhea. Two days into the diet they went away and have not returned.

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Just found this forum - its great! :D As someone noted, nice to have others who understand!

I was diagnosed with DH almost 3 years ago. Didn't think I had any GI problems related until after I went gluten free. Now, I've found out I do! Gluten pretty much gives me GI pain, d or constipated. Generally last about 24-48 hours. Also get some "blisters" on face, elbows or knees but the GI problems have become more noticeable. Severity depends on how much gluten. Traval a lot so have learned to be careful traveling!

Interestingly enough, my oldest daughter (adult) has had problems for years but doctors could not figure it out. After I was diagnosed, she got test and has celiac disease. After bring gluten free for a year, she says feels best she every has.

John

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I also get brain fuz. Many of you have said you get stomach rumblings. I have a very loud gut. It's embarassing when you're out in public because it sounds like Mount st Helens is getting ready to... well you know. Does anyone share in this lovely experience.

Ken Ritter

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I find that when i ingest gluten My muscles hurt all over kind of like i have been doing hard exercise for 24 hours straight. The brain fog is the worst part, especially because i am dealing with people all day at work and i have to be relatively sharp. Some days I am just STUPID. Its like i smoked a whole bunch of dope the night before. People have actually suggested that i should lay off the weed. That is by far the worst part for me, because stupid people drive me crazy. I also get itchy raised bumps on my bum and sometimes my back and headaches.

I find also that i react to foods after i am glutened, if i am gluten-free for a while i can drink coffee, but if i drink it shortly after i am glutened i feel strange. Sugary foods also seem to make me feel worse as well.

I made my Girlfriend get me an appointment with a family GP this week because I want to make sure I don't have brain tumor or something else unlikely like that. Seeing as I haven't seen a family doctor in something like 6 years or more. The doctors in the walk in clinics in Edmonton just don't seem to care. Heres a prescription for a painkiller for your sore muscles, thanks for coming out!

Scott

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I am 5 months in to all of this and reading this was like reading about myself - exactly - I really can't believe it. I am so scared to eat out, because it seems like every time I try - I get glutened and it lasts for a solid week - I think the fatigue and brain fog is the worst for me.

From the tiniest amount of gluten or casein (I once got glutened after a beer drinker sipped from my wine glass!), I experience the following symptoms that now last about 5 days (used to be 2, then 3...)

- bloating

- acne on face/back/chest

- chronic fatigue (tripping over my feet, dropping things) that no amount of sleep will fix

- severe brain fog (can't hold a conversation, feel like I'm living in a bubble)

- depression

- irritability

- non-stop hunger and cravings for high carb things (as if my body is asking for gluten)

- excema on hands/feet

- waves of nausea

The brain fog/depression/irritability/fatigue lasts for a solid 5 days, the skin conditions take a few weeks to subside fully.

:rolleyes:

If I've had a bigger amount of gluten (ie: not cross-contamination, an actual dish that contained some gluten) then within about 10 mins of eating it my heart will begin racing, I will get severe stomach cramps and back ache, and I will feel like I can't get a full lungful of air, like someone is crushing me in a vice grip! Thankfully these days I only usually get glutened via cross-contamination, which *usually* doesn't trigger the stomach problems. Never the less, I am pretty much useless for those 5 days. Plus I try and stay out of people's way cos I am soooo irritable!! ;):lol:

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my main symptom is the lower intestine stuff, diarrhea, bloated, gassy etc, when it gets bad constipated diarrhea (luckily i figured out my main accidental glutenings). the mental/emotional stuff i would get slightly depressed (specifically about being single and feeling slightly alone in general) some times anxiety for no reason, and just feel kind of out of it. it all blended together that i didnt realize how much the gluten caused until i got food poisoning last week and while i had the GI issues mentally i was fine and it was really weird to me

-matt

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    • LexieA, I agree with Plumbago. The symptom's of low stomach acid and high stomach acid are similar so it is easy to confuse the symptom's of one as the other. Dr. Myatt explains this well in her online article about stomach acid. http://healthbeatnews.com/whats-burning-you/ quoting "But My Symptoms Feel Like Too Much Acid…" Strong stomach acid and pepsin quickly "emulsify" fats and proteins, making them ready for the next step of digestion, passage into the small intestine. When these digestive factors are weak, food remains in the stomach for longer and it begins to ferment. Gas pressure from the fermentation can cause bloating and discomfort and can can also cause the esophageal sphincter to open, allowing stomach contents to "backwash" into the esophagus. Even though weak stomach acid is the central cause of this, even this weak stomach acid, which has no place in the esophagus, will "burn." This burning sensation confuses many people, including doctors, who then "ASSuME" that excess acid is to blame. Too little acid, resulting in slowed digestion, and gas which creates back-pressure into the esophagus is the real cause of almost all "heartburn" and GERD." so  you can see how they can easily be confused for each other. you no doubt are having stomach acid issues but it is because it is too little or too much? Timeline helps us determine which it is. If it happens when we eat something it is already to low to  digest the food we are eating. if eating something cause the heartburn/gerd to improve (especially meat) then your stomach acid is really too high especially if this happens between meals. because eating something will naturally dilute/lower the stomach acid pH. I wrote about my stomach acid being misdiagnosed on my celiac.com posterboy blog. ( have summarized most of what you need to know in this reply but the post is still there if you want to study it more for yourself. if your not taking an antacid now then taking BetaineHCL should improve digestion. If it does then raising your stomach acid by lowering you pH should improve your digestion. study on the best way to take powdered stomach acid before trying this. but I found taking 3 to 4 capsules in the beginning was easier than taking only 1 or 2 in the beginning .. .  until I could back it down to only needing one per meal or now none per meal to aid digestion. which is what we are shooting for.  The place where our body is now producing our stomach acid naturally at a healthy level. if you feel a "warm sensation" in your stomach you have reached a good level. I hope this is helpful. I only know it helped me. *** this is not medical advice but I hope you have as a good experience with it as I did. Usually peopledon't  have a trouble taking BetaineHCL unless they have an ulcer or already taking PPI's which are actually lowering  their stomach acid contributing to a viscous cycle of being locked into taking PPI's long term. if PPIs are taken for more than 6 months they can be almost impossible to stop/quit because of the acid rebound people experience when trying to stop taking them cold turkey and why they recommend stepping back doses by 1/2 gradually so they don't get overwhelmed by the stomach acid your stomach is  able to produce again naturally itself (hopefully). . . if taking betaineHCL jump started your ability to produce stomach acid again. . . if not taking betaineHCL (Powdered Stomach Acid) can replace what the body is missing much like taking a hormone. chris kresser has a good online article on this subject as well. https://chriskresser.com/what-everybody-ought-to-know-but-doesnt-about-heartburn-gerd/ he says it well. quoting chris kresser. "If heartburn were caused by too much stomach acid, we’d have a bunch of teenagers popping Rolaids instead of elderly folks. But of course that’s the opposite of what we see." **** this is not medical advice but I hope it is is helpful. posterboy by the grace of God, 2 Timothy 2:7 "Consider what I say; and the Lord give thee understanding in all things".  
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    • 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. 
    • I am just curious.  As a scientist (and I am not trying to be rude), how can you determine if hydrologized wheat protein from your husband’s shampoo was actually the culprit?  If I recall at your diagnosis, you were seronegative, Marsh Stage I, gene positive,  but your doctor still  suspected celiac disease.  You improved on a gluten diet.  Other than observation, how do you really know?  Could it not be something else that triggered your symptoms?   I firmly believe that even trace amounts of gluten (under 20 ppm), can impact sensitive celiacs.  But traces of a protein within a shampoo from someone else’s hair that was rinsed?    
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