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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 FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) 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 Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

How Soon After Getting "glutened" Do You Feel Effects?
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Hello folks,

Would like to hear some details from those of you who have experienced a "glutened" after-effect, such as:

*How soon after you ingest gluten do you begin to feel "glutened"?

*What after-effects or reactions do you experience?

*How long do/es the "glutened" effect(s) or reaction(s) last?

Had always expected to feel "morning after" effects from ingesting gluten, but lately I've noticed that it seems to take 2-3 days before serious side-effects set in. It also seems to last longer each time it happens, and the effects (intestinal pain, congestion, swelling, etc.) seem to increase in severity.

Am wondering if the repeated exposures to gluten (whether accidental or deliberate) tend to cause increased severity and duration, the more often it occurs?

Hope the questions are clear, and I look forward to hearing some responses.

Thanks and good wishes.

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*How soon after you ingest gluten do you begin to feel "glutened"?

*What after-effects or reactions do you experience?

*How long do/es the "glutened" effect(s) or reaction(s) last?

1. Anywhere from 20 minutes to two days later. It seems to vary for me.

2. If my body "catches" it with 20-30 minutes I get a headache, nausea and sometimes throw up. Then for the next 4-5 days I have bad neurological reactions-- muscle and joint pain, shaking hands, fatigue, brain fog, etc. If my body doesn't react right away and the reaction is delayed by a day or two (I don't throw up), I have C and bloating for a day or so followed by bad cramping and Bloody D. I also have the neurological effects while having the gastro effects so it's ten times worse when I have delayed reaction. Unfortunately delayed reactions seem to happen more often for me, so it's harder to track down the gluten source. I also never had the really bad gastro reactions prior to going gluten free.

3. Whether delayed or immediate I have symptoms anywhere from 4 days to a week. Usually takes me a week to feel better.

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For me it is variable. CC can hit in 1 hour or the next day and symptoms are D, bloating, sometimes cramps. D is generally one rather massive event (amazing how much can be stored in a GI tract. Next time I have a colonoscopy I'll just have a crouton instead of laxative) and the bloating takes 3-5 days to go away. Massive glutenization can result in the same symptoms, but also include stiff joints, brain fog, lethargy, muscle aches, and mood swings. These other symptoms can take 5-7 days to go away. I, like a lot of people, am self diagnosed for gluten intolerance. My symptoms started last fall after getting the flu, and my blood and other tests were negative but also after I was gluten-free. A really bad gluten hit can cause the area around where my rashes were to be itchy; I had probable DH for a few decades that went away 6 months after gluten-free.

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Very soon after I eat I get a sharp pain in my stomach and I can feel that pain for the rest of the day or so as it travels my digestive system. Later I get gas that just won't stop and constipation. Brain fog, drugged feelings and general stupor. OH, and I quite often get anxious and sometimes RLS.

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omg- i'll try to keep this short- it just depends on how much, what kind, and for how long i eat it... the norm is to feel like i have huge rocks in my stomach & intestines like even 10 min. after eating it. i dont get the "D" or floaty fatty movements unless ive been on gluten regularly. i usually get some "C" & how do i say this.... um... white mucous type stuff... (sorry tmi :( )

also, GERD, congestion, brain fog, and "hangover".

the last time i ingested gluten was right before i got my Enterolab results (one last cheat)-> got fried shrimp, after 15 minutes- had to lay on the couch with an ice pak- my heart rate shot up to like 150 bpm, and i was on the verge of throwing up :(

but as far as minute amounts of CC- im still not sure about my body- still working thru intolerances & allergies with other foods- so im not sure if im getting CC or what?

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For me, it depends on how much and what I eat but I know within about 20 min, that's when my neuro symptoms start. Then 3 days later I get a migraine and my gastro symptoms start (cramping, stomach pain, and D). I am sick and extremely tired and anxious for a few days to a week.

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About 20 min after eating gluten my hands feel puffy. Thats always the first sign. Then, my stomach starts gurgling and I get really gassy. Sometimes, I start to feel like I can't see quite right and I am high or something (Brain fog?). About 2 hours later I get really bloated and it hurts. I wake up the following morning with a swollen face and swollen eyelids (its embarrassing). The swelling normally lasts 8-10 days. It normally takes 1-2 days before I get D (oddly). But, that normally sticks around for about 3 days. I seem to get glutened all the time...esp. when I go out to eat.

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- Within the first couple of hours: major C, followed by random anxiety attacks that aren't justifiable and come out of nowhere.

- First 24-48 hours: extreme moodiness, and headaches that don't go away with my trustworthy Excedrin Migraine... if 4 Excedrins don't get rid of the headache, I know I have a major gluten-triggered migraine on its way.

- Next few days: body aches (fibro flare) & nausea.

Typically I'll feel better anywhere from 2-3 days after being glutened, but it can take as long as 5 days.

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I'm currently experience my first real glutening since going gluten-free.

For me, my symptoms seemed to start about 30, 45 minutes after eating the food. I was suddenly cramped and gassy, and ended up with one instance of really bad D. (graphic, I know, sorry lol) The remainder of the evening and night last night I had really bad pain in my stomach, like very sore, and also low energy and some emotional agitation.

Today, my stomach is still out of whack and I had to bail on going to the bar <_< I just had dinner (homemade dinner) and am still feeling cramped/gassy/sore stomach.

Ugh.

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*How soon after you ingest gluten do you begin to feel "glutened"?

Usually two hours later, but I start feeling very tired within about 20 minutes.

*What after-effects or reactions do you experience?

Stomach ache which sends me running to the bathroom than D. Then more extreme tiredness.

*How long do/es the "glutened" effect(s) or reaction(s) last?

The worst time was cc through cooking oil and I fell asleep on the sofa that evening for about 3 hours (which was crazy, my sofa is short) and then slept another 12 hours. I just could not wake up.

Other times it's been milder - I don't know what got me - and my stomach is mostly ok the next day. I haven't been able to work out exactly what else goes wrong and that time frame, but I do feel wobbly for a few days.

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For me it is variable. CC can hit in 1 hour or the next day and symptoms are D, bloating, sometimes cramps. D is generally one rather massive event (amazing how much can be stored in a GI tract. Next time I have a colonoscopy I'll just have a crouton instead of laxative) and the bloating takes 3-5 days to go away. Massive glutenization can result in the same symptoms, but also include stiff joints, brain fog, lethargy, muscle aches, and mood swings. These other symptoms can take 5-7 days to go away. I, like a lot of people, am self diagnosed for gluten intolerance. My symptoms started last fall after getting the flu, and my blood and other tests were negative but also after I was gluten-free. A really bad gluten hit can cause the area around where my rashes were to be itchy; I had probable DH for a few decades that went away 6 months after gluten-free.

"Next time I have a colonoscopy I'll just have a crouton instead of laxative" -- lauging so hard here I can hardly stand it! Great line! And yes, that crouton would indeed work wonders. Thank you for the smile.

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For me, within 15-20 minutes. BAM! There is no doubt I'm having a reaction. Big D. If I'm lucky, I catch it before I have to go home and change clothes.

I'll get delayed reactions, but I'm learning that, for me, it may be from another food that I may be sensitive to, such as egg yolk or soy.

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Usually almost instantly to 20 minutes later I'll have a sore stomach - I call it a "punched in the gut" feeling, and it usually induces a run to the loo, even if not D.

A few hours later to a day later I'll have a bad headache, one of those vice-like grip headaches, with or without back-ache. Around this time I'll also start getting random pains in my wrists, knees, legs. I also get muscle twitches/spasms/cramps.

2 days to 4 days later I'll usually have massive amount of D. Sometimes preceded by C.

So yeah, highly variable :) Oh, and I'll have at least one incident of crying over nothing, or tingling in my hands or anxiety. If I start crying over nothing even without any other issues I know I've been glutened.

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Usually almost instantly to 20 minutes later I'll have a sore stomach - I call it a "punched in the gut" feeling, and it usually induces a run to the loo, even if not D.

A few hours later to a day later I'll have a bad headache, one of those vice-like grip headaches, with or without back-ache. Around this time I'll also start getting random pains in my wrists, knees, legs. I also get muscle twitches/spasms/cramps.

2 days to 4 days later I'll usually have massive amount of D. Sometimes preceded by C.

So yeah, highly variable :) Oh, and I'll have at least one incident of crying over nothing, or tingling in my hands or anxiety. If I start crying over nothing even without any other issues I know I've been glutened.

Crying, anxiety: I can so relate! My husband says he can tell if I've been glutened almost immediately afterwards.

For lack of a better term, I turn into a COMPLETE witch. Oh, how I love my husband for having put up with me.

For a couple of years (or more) before I was diagnosed, I was extremely difficult to live with-- not impossible, but (at least for me) a lot more difficult.

I had heightened sensitivity about everything. It was really tough, especially since I've always been known for being understanding, accepting, loving, caring, nuturing . . the whole bit.

Not with severe gluten symptoms, though. With my reactions to gluten, I was a different person.

When I look back on it, I can see so clearly how it was gluten.

Thank heaven, I am a different person now. Thank heaven, people around me stuck by me . . . at least most of them. Thank heaven, I found a doctor who understood and diagnosed me CORRECTLY.

I have said this on the forums here so many times, but I have to keep saying it:

It kills me to think of all the other people out there who could get to the positive side of happiness, if only they changed their diet.

It kills me to think that they do not know what their problem is.

It kills me to think they are being told they have countless other problems when it is, in fact, gluten-intolerance.

I am doing all I can to spread the word to others, and I am always looking for more ways to help.

All of us here can make a difference in the lives of so many others, if only we keep spreading the word.

Thanks for letting me rant!

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I have been gluten-free since Sept. 2011 and on the 4th of July 2012 I cheated for the first time and ate some homemade cake I made for a potluck. (Not gluten-free cake.) I am soooooo regreting this! 3 days after the cake I came down with masssive back/neck pain, extreme migraine, belly bloat, blurred vision, and weakness/tiredness. It's been almost 2 weeks and I am just now seeming to come out of it! It has been horrible. The migraines have been unbearable. Does this sound familiar to anyone?

Sonja

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I was diagnosed celiac just 3 weeks ago, and have only been gluten-free (for sure) for about 10 days, so I'm not completely sure of my answers since I've been glutened for so long.

*How soon after you ingest gluten do you begin to feel "glutened"?

If it's on an empty stomach (pancakes for breakfast), I feel a stomach ache within 10 minutes.

*What after-effects or reactions do you experience?

I get bloated and have gas and C. I often have migraines and sore joints and back.

*How long do/es the "glutened" effect(s) or reaction(s) last?

This I don't know since I've been glutened for the last 30 years. LOL :lol::blink:

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I'm pretty sure that I was glutened Friday night after my fiance and I went on a "date" to a supposedly gluten free Asian restaurant. The next day I had horrible cramping, gas, and eventually D for the next two days. After the second day I got the extreme fatigue and have sadly fallen asleep at my desk for the past three days which is super embarrassing. To make matters worse, I'm an adolescent therapist and its not very helpful when they're talking to you about their problems and the therapist is falling asleep right in the middle of the session! I also had some mild neurological issues - tingling in my fingers, and I've been having a mild headache but nothing too severe. The worst has been the moodiness - thank god my fiance is understanding and doesn't hold it against me too much...I can become a raging you-know-what which is pretty uncharacteristic of me. Wishing you all well!!!

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Hi, I'm newly diagnosed (gluten-free for 8 months) and I got 'glutened' a few days ago, my own fault for not being careful enough whilst out and about. Anyway about 45 mins after eating I felt slightly nauseous and had a bit of acid reflux. I didnt realise I had been glutened at that time. Then around 3-4 hours later I started getting stomach pains and nausea, then that evening (8hrs after ingestion) I had diarrhoea and intermittent stomach pains.

For a few days since Ive had some stomach pain, and since the diarrhoea, constipation. I am also having acid reflux and brain fog/drowsiness.

In the past when I've accidentally been 'glutened,' I've recovered in a couple of days, however I ingested quite a lot this time so I guess it's going to take longer.

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I was so happy to read this. I have been gluten-free for about 6 month, the 1st 2 were tricky with finding gluten in things the wrong way, or not being careful when handling G foods and then my food. I have been feeling SOOOO good. Most of the time I get a headache within an hour followed by brain fog, then exhaustion 2-3 days later, I also have bathroom issues the next day. Yesterday I ate some stuffed zuchinni, I made it using perdue ground chicken and store brand pre shredded cheese. In an hour or so I could hardly keep my thoughts together, I went to play kickball (adult league- lots of fun) and noticed there was no one at the other teams dug out.....um they were in the outfield....then more dumb moves. Today I had severe diarreah followed by dizziness while attempting Zumba, sore knees and ankles. I quit class early and forced myself through the day.

I was happy to read that others experience different reactions to gluten. It gave me comfort to know I am not the only one, and to help me determine that it was gluten that somehow got into my food.

I find that white rice is helpful with my recovery, I also had a massage once when I 1st accidentally was glutened and it seemed ot help speed up recovery, make sense as they are detoxifying. I am considering an epsom salt bath. I have heard people suggest good bacteria from suppliments as well as yogurt.

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I tried a new gum, about 2 months ago, that burned my mouth immediately. Bye bye.

I've been glutened 2 times, in the last two months, I could feel it coming very soon after. But, it seems to take 4 days before I am incapacitated. That lasts for four days, too.

Cc is my biggest problem, as you all well know.

Right now, low calorie intake and constipation are plaguing me. I have to add more fiber.

I look back at my life and realize certain foods felt calm, like potatoes.

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The crouton part really made me laugh, too. Sadly, I just had an accidental crouton ingestion; forgot that Cesar Salad comes with croutons. Duh! Just not used to thinking abou it yet. I had picked most of the croutons out, but this fraction of a croution was hidden between the greens. When I heard the crunch I knew. If I was not eating with someone, I probably would have spit it out. I've been glutten free for approximately two months. My IGA was normal, but MD suggested a gluten-free diet, and she was further convinced when I told her my eczema went away, and my KP smoothed out. Probably I'm not aware of how it affects me entirely. For example, I see people mentioning fatigue, and that's been a problem with my accidental ingestions. The intestinal symptoms are obvious; I start out feeling feeling squirrely within an hour after, like something is not right. Sometimes it's 30 min later or sometimes 3 hours later, but I have massive soft stools, followed by massive D that looks greasy and slimy. It takes 3-5 days to get back to normal. I also get burpy, about two hours later, like food might come up, and sometimes it does. Sometimes bloating and then gas. Sometimes gas and then bloating. Non stop bouts of gas that last an hour and appear periodically throughout the day usually lasts for at least three days...I could end our energy dependency if we could harness this output. After the gas and bloating is over, I have sore guts for a day, like I got kicked in the guts. I get irritable, but maybe that's just from the general pain.

Edited by NoGrainNoPain
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I've been gluten-free for over 10 years and can count on one hand how many times I've been glutened. The last time was my own fault ... I ate a wheat hot dog bun thinking it was gluten-free (again... my own fault). Less than 2 hours later, my body just purged itself... constant vomiting and diarrhea shooting out of me at the same time. I ended up having to strip off my clothes and sat on the john w/ a waste can in my lap. It lasted for at least 3 hours. I don't remember any symptoms the next morning... I think I was just happy to be ALIVE!! Seriously... that will NEVER happen again.

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    • Will my doctor test me? So many symptoms...
      Remember that you have to be eating a normal gluten diet for the testing so don't cut back & don't stop eating it. Make sure they do the full, current celiac panel: Anti-Gliadin (AGA) IgA
      Anti-Gliadin (AGA) IgG
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      Also can be termed this way: Endomysial Antibody IgA
      Tissue Transglutaminase IgA 
      GLIADIN IgG
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      Deamidated Gliadin Peptide (DGP) IgA and IgG
    • Will my doctor test me? So many symptoms...
      Yep, get tested for celiac.  You have plenty of digestive symptoms to indicate it.
    • Weird Reaction
      Hi Richie, It definitely sounds like you got glutened.  Over here in the USA they can't label foods gluten-free if they are made from gluten ingredients, period.  So your barley drink would not be labeled gluten-free here.  A while back I read something about the testing for gluten in foods not being as accurate for detecting barley hordein as it is for wheat gliaden.  So the gluten-free testing (if they do any) that your drink maker does may not be reliable. Celiac disease is an autoimmune condition.  So the immune system starts reacting when it detects gluten and damages the gut lining.  An immune reaction is not like a food poisoning event, where most of the damage is only while the food is actually in your system and then ends.  An immune reaction can continue for weeks to months.  The immune system is really quite serious about protecting our bodies.  And since it is designed to detect and attack micro-organisms it reacts to tiny amounts of gluten. Wheat, barley, and rye are the main gluten grains that affect celiacs.  But some celiacs also react to oat gluten.  
    • Weird Reaction
      Hi Richie,  Glad you are feeling better. I wondered have you been officially diagnosed with coeliac disease? Just wondering as you say you are anaemic, that is one of the symptoms of coeliac disease, along with other general malnutrition. You don't need to eat meat for iron though, you can get it from non-heme foods, like spinach or parsley. Just be careful with the drink with barley, it may be that you only start to have symptoms if you consume a lot of it, but if you have coeliac disease the damage is still been done to your gut regardless of whether you have symptoms or not, which will ultimately lead to malnutrition as well as other things.
    • Weird Reaction
      I think, if all this is caused by glutening, it could be that it takes a while to work its way out of your system. I should explain about what I said about organic broccoli.   I don't have a problem with organic food,  in fact, I buy organic milk and carrots all the time, but I don't want to try organic broccoli in case it is the broccoli that is the problem, not the insecticide.    I meant to ask, are you a coeliac or is it non-coeliac gluten intolerance that you have?   I wonder what sort of support you get in Australia for these conditions once diagnosed?   Here in the UK I think the understanding is that if new gastro symptoms have lasted for more than six weeks it needs to be investigated.   I have found this very helpful advice because I do get odd twinges of pain and sometimes changes in bowel movements (sorry if tmi) but they rarely last more than a couple of weeks.   If they do persist I mention it to my gastroenteroligist and he follows it up.  I recently had a sigmoidoscopy for left sided pain and they found nothing.  Turns out it was to do with lactose intolerance, but I always imagine the worse!    
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