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      Frequently Asked Questions About Celiac Disease   04/07/2018

      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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Has anyone ever done this in the early months of being gluten free? I've been gluten free for several months and I have no desire to eat gluten just for the sake of eating gluten, but sometimes I think it would be good to know what to be on the lookout for in the case of an accidental glutening. I've had various symptoms of varying degrees of severity for most of my life but I always thought tummy aches and such were normal for everyone on Earth. They were/are certainly normal for me. It's only been in the past few years that I've realized it's not normal for the need to have a BM to be signaled by tummy aches. I'm still having a lot of those symptoms these days, but my TTG has improved greatly, so by the numbers, I'm on the right track. It wasn't until a couple of months before my diagnosis that things started getting abnormal by my standards, so I wonder if I should be expecting those symptoms (which I don't have a lot of experience with) when glutened? Or am I being glutened still, because I'm still experiencing my normal stuff? Or should I be eliminating other things? Or is it something else altogether? Morbid curiosity?

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Has anyone ever done this in the early months of being gluten free? I've been gluten free for several months and I have no desire to eat gluten just for the sake of eating gluten, but sometimes I think it would be good to know what to be on the lookout for in the case of an accidental glutening. I've had various symptoms of varying degrees of severity for most of my life but I always thought tummy aches and such were normal for everyone on Earth. They were/are certainly normal for me. It's only been in the past few years that I've realized it's not normal for the need to have a BM to be signaled by tummy aches. I'm still having a lot of those symptoms these days, but my TTG has improved greatly, so by the numbers, I'm on the right track. It wasn't until a couple of months before my diagnosis that things started getting abnormal by my standards, so I wonder if I should be expecting those symptoms (which I don't have a lot of experience with) when glutened? Or am I being glutened still, because I'm still experiencing my normal stuff? Or should I be eliminating other things? Or is it something else altogether? Morbid curiosity?

If you've only been diagnosed a few months ago, most likely your gut is still healing. Thats the case for me. I've been gluten free since May and I still get stomach problems from time to time. You could be getting glutened from somewhere - I'd start with your kitchen surfaces and cookware, but it could be anything from toothpaste to shampoo to skin products.

There have been times where I have been so frustrated not knowing if I've been glutened or am just healing that I've blurted out "why dont I just eat a piece of bread?" I'll never do it. First off, I wouldn't knowingly poison myself and risk derailing my progress. Also, if you do that, who knows if you'll be out of it for a day, a week, or a month? Its just not worth it for me - I have to work and function on a day to day basis and cant risk feeling like crap for weeks....I understand your frustration because I'm still sort of new at this too but I would encourage you to let your body heal more and see how you feel. Hope this helps!

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I wasn't sure what to say, but I guess I can tell you what it is like for me after consuming gluten accidentally. First, there is the GI symptoms that last for a few hours. Not so bad to be perfectly honest, but it is exhausting. Then, I'll really and truly be exhausted. I will sleep for more than half a day, usually more like 20 hours a day for about half a week maybe. When I can finally find the strength to keep myself upright in a chair for more than an hour at a time I'll still be so weak and tired (physically) that I can barely do anything for weeks afterward. I'll find myself going hungry because I can't find the energy to walk to the kitchen and actually make something and actually get a fork to my face afterward. There is nearly unbearable all over pain. Think like having the flu, only worse. I'll become so tender to touch that my husband loving resting his hand on my arm will be so painful I'll just start to cry. This symptom by itself is the reason I have a separate bed that I have to use for about 3-4 weeks if I've been glutened.

I promise, this is not the sort of thing you want to do to yourself on purpose. Not to know what it's like. Not to know if you are on the right track. I used to wonder that myself but as time wore on and I steadily improved a bit at a time I realized the small things I had been doing wrong but also all the things I had been doing right slowly added up. We've all done so much damage to ourselves for so long with gluten. We just need to have patience. I know it's hard. I assure you I am the queen of not having patience, but there is nothing to do in this case but simply wait. Put one foot in front of the other, get out of bed every morning with renewed purpose. Or with running feet and a full bladder... you know, whichever suits you. :P

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I know the uncertainty is frustrating, but you will eventually figure out glutening symptoms...the hard way. You will get "got".

People have a range of symptoms-from mild to extreme. And your symptoms can change, especially in the first year. Mine did. It may sound like a good idea, but if you end up with an ai attack that lasts a month you're going to think you are the stupidest person on the planet for doing that to yourself on purpose.

Glutening is like a box of chocolates. You never know what you're gonna get.

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Everyone's symptoms are so all over the place and with so many of us having other intolerances it can be hard to tell. Regular grains give me fast GI symptoms. Gluten creeps up on me slow but them whammies me. Sometimes vomiting, sometimes not. I do not think it is worth it at all. One thing that is consistent is that I can feel my body being set back a good bit, i.e. undoing some healing.

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I have multiple intolerances and they all cause my psoriasis to flare. My digestive symptoms were very mild. But after over 14 months of being gluten-free, I did get glutened by some cross contaminated rice. Now I know what the rest of you who have severe digestive symptoms have gone through. I NEVER want to go through that again!

I live alone and don't eat at friend's houses or restaurants, so the chances of accidental glutening are all on my shoulders. I swear, if I ever decide to try a different food or a different brand, unless it is certified gluten-free, I will do without. I WILL read every label, EVERY time I buy a familiar brand. I'm never going to take a chance again!

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Like you, I thought it was normal to get a stomachache after most meals. I even had a doctor tell me "she's one of those people who gets stoamach aches after she eats" when I was about 8. :blink: I dismissed it and got tough so I wouldn't grimace or double over when in front of people; I always carried a sweater so I could hold it over my bloated belly to disguise it and push back.

The things we did, eh?

Anyways, I've been gluten-free for 3 months and glutened myself twice by mistake. For me, it felt the same as those stomachaches you used to get after eating; the ones before you went gluten-free. The belly ache hit about 20 minutes after eating and then turns into painful bloating which lasts a day, along with a migraine that lasted almost a week. It was super obvious! If you had GI issues after eating, I'm guessing that it would be pretty obvious for you too... whatever symptoms that have been relieved by going gluten-free, that's what you would get, and possibly slightly more severe.

I still get a few of the symptoms, but they are milder and much less frequent. As we heal, it will improve. :)

Best wishes.

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When I get glutened now, it is generally overwhelming nausea - the kind where you want to retch and have too much saliia and just can't think of anything else. :(

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Yes, as the others have said, eating gluten "just to see" is definitely not worth it. You're still healing, still figuring out what you should be eating. As you manage to cut all possible gluten out and heal up, then trust me, you'll know when you've accidentally gotten glutened.

For me, I know it was gluten when I few hours later my stomach starts doing flips, then the next day I'm all anxious and want to either cry or kill someone. Usually it takes a few days before my stomach can handle other food too.

Best advice, cut out the gluten, read labels, ask lots of questions when you eat out (I still have trouble doing this), and enjoy feeling better.

Peg

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I'd be very careful. I've read stories on this board about people trying to do the gluten challenge and ending up in the emergency room. Back when I started living gluten free (almost 3 years ago now) I didn't realize that I most likely had celiac. I just knew that stopping gluten and dairy was life changing. So about 2 months in we went on vacation and I thought I'd just "do my best" for the trip...and wasn't diligent at all. My experience was similar to Adalaide...did she say she also had such excruciating joint pain she couldn't get out of bed? I can't remember but it happened to me. For 3 weeks I slept 16 hours a day. I had a rash everywhere. It was so awful. Finally I ended up at the doctor's office and finally someone started talking to me about celiac and gluten intolerance. I wasn't willing to do the gluten challenge so I only have a "gluten sensitivity" although I believe in my heart I have celiac.

I think at this point you should just worry about healing and getting used to what it means to be gluten-free.

I wonder now that since I'm a few years in if I did get glutened that maybe my body would not go haywire, but I'm not willing to chance it.

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I did mention the pain but not how awful it is. I spend weeks on narcotic painkillers and while I've discussed with my doctor the fears we both have of the possibility of me becoming dependent we have both agreed that it is worth the risk. I also end up with the brain fog for a good 4-6 weeks which I'm still climbing my way out of now. Honestly, for the first 2-3 weeks I wouldn't be able to think my way out of a wet paper bag. I only wish I was dead for about a week or two, after that I start the uphill battle of feeling better until it's over. There are people who have true horror stories. How one accidental brush with gluten has left them on death's doorstep. I consider myself lucky that I only wish I was dead rather than actually being on the brink of death. I am fortunate though that due to life's circumstances I am able to consider high dose steroids as a treatment option to help alleviate symptoms, this is not an option for everyone.

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Thank you all for your nice responses. I was preparing to put up my dukes after using the word "cheat". I've seen some very unpleasant reactions at the mention of that word!

I'm glad I posted about this. I'm finding a lot of comfort in knowing that in these early stages, it's common to be frustrated in wondering, "did I get glutened or what?"

I've been having a stabbing, localized pain in my left side for the past several days. This is actually the abnormal pain that took me to the Dr. which ultimately let to my diagnosis. I thought I must have had an ulcer or diverticulitis or something. Nope. Celiac, straight out of left field. My endoscopy and colonoscopy didn't find any other cause for this stabbing pain so at this point, I'm thinking it must be my "you've been glutened" signal. Everything else that I've been feeling my whole life (and still experiencing) must be what's taking time to dissipate as I heal.

So thank you all again, very much!

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Klin, are you still drinking/eating dairy? Sometimes it's a good idea to cut it out while you heal. That might help with the stabbiness, or at least let you know that it's indeed gluten getting to you and not something else.

Just a suggestion (that I didn't follow when I started. I clung to dairy as long as possible. Now I'm casein intolerant)

Peg

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Klin, are you still drinking/eating dairy? Sometimes it's a good idea to cut it out while you heal. That might help with the stabbiness, or at least let you know that it's indeed gluten getting to you and not something else.

Just a suggestion (that I didn't follow when I started. I clung to dairy as long as possible. Now I'm casein intolerant)

Peg

Yes, I still eat dairy. I'm totally clinging to dairy!!! The stabbiness is gone. There were/are several other symptoms with the stabbiness. I'm calling it my 1st glutening so I can feel like I know how it feels and get over this feeling of needing to "cheat". Last weekend at a birthday party, I picked up my 3 y/o daughter's juice box and took a swig thinking it was my juice box. She had just finished enjoying pizza and birthday cake with that juice box. The stabbiness and discomforts started the next day.

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I wasn't sure what to say, but I guess I can tell you what it is like for me after consuming gluten accidentally. First, there is the GI symptoms that last for a few hours. Not so bad to be perfectly honest, but it is exhausting. Then, I'll really and truly be exhausted. I will sleep for more than half a day, usually more like 20 hours a day for about half a week maybe. When I can finally find the strength to keep myself upright in a chair for more than an hour at a time I'll still be so weak and tired (physically) that I can barely do anything for weeks afterward. I'll find myself going hungry because I can't find the energy to walk to the kitchen and actually make something and actually get a fork to my face afterward. There is nearly unbearable all over pain. Think like having the flu, only worse. I'll become so tender to touch that my husband loving resting his hand on my arm will be so painful I'll just start to cry. This symptom by itself is the reason I have a separate bed that I have to use for about 3-4 weeks if I've been glutened.

I promise, this is not the sort of thing you want to do to yourself on purpose. Not to know what it's like. Not to know if you are on the right track. I used to wonder that myself but as time wore on and I steadily improved a bit at a time I realized the small things I had been doing wrong but also all the things I had been doing right slowly added up. We've all done so much damage to ourselves for so long with gluten. We just need to have patience. I know it's hard. I assure you I am the queen of not having patience, but there is nothing to do in this case but simply wait. Put one foot in front of the other, get out of bed every morning with renewed purpose. Or with running feet and a full bladder... you know, whichever suits you. :P

[/quote

Feel so sorry for you .

God Bless you

pray for speedy recovery

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I dont have Celiac, but I am Gluten Intolerant. Through the last 6 months of being tested and poked, prodded and sedated, I went through various stages of being gluten free. I went totally gluten-free for a while and felt amazing. My dr told me I was fine and gluten was NOT my problem, so I went back to eating and feeling lousy. I had another dr tell me the same thing, so I kept eating it.

I finally saw a new dr who actually believed in intolerance and told me to stop, but I didnt.

I think it took another 2 more months to convince myself to stop. I go back and forth with trying to eat a little "just to see what happens" and it is the same thing...every time. I get dizzy and exhausted within 15 mins, and then a few hours later, I get a screaming headache. I get so mad when I think of the drs who told me since I didn't have Celiac Disease then it was "safe" to eat gluten. Sure, I may not have intestinal damage, but this is NOT "ok"!!1 It is NOT ok to feel lousy after eating food. I have learned the hard way...that if you react negatively AT ALL then you are having a reaction to what you ate and you should cease to eat it. Plain and simple.

It is really hard. I KNOW it is good for me to avoid it. I HAVE alternative products to eat when I feel like having a muffin, or bread. I KNOW how to cook gluten free and thankfully for me, I am not affected by cross contamination but still..when I see a warm, gooey chocolate chip cookie..its hard not to cave. But Then I think of how I will feel, even the next day and at some point I have to tell myself...no.

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Yes, our own experience can trump what a doctor tells us. They do not know everything; only we know how our body feels. Researchers and doctors are only just becoming aware of non-celiac gluten intolerance.

You really must, if you do not wish further harm down the road, resist the temptation of that gluteny gooey chocolate; goodness only knows there is enough gluten free gluteny gooey chocolate fairly readily available, even if you have to wait an hour until you bake some :)

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    WHAT IS CELIAC DISEASE?
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    NO SYMPTOMS
    Currently, most people diagnosed with celiac disease do not show symptoms, but are diagnosed on the basis of referral for elevated risk factors. 

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    No Hereditary Link in NCGS
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    Doctors diagnose NCGS only by excluding both celiac disease, an IgE-mediated allergy to wheat, and by the noting ongoing adverse symptoms associated with gluten consumption. WHAT ABOUT IRRITABLE BOWEL SYNDROME (IBS) AND IRRITABLE BOWEL DISEASE (IBD)?
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    Crohn’s Disease and celiac disease share many common symptoms, though causes are different.  In Crohn’s disease, the immune system can cause disruption anywhere along the gastrointestinal tract, and a diagnosis of Crohn’s disease typically requires more diagnostic testing than does a celiac diagnosis.  
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    Is There a Connection Between Celiac Disease, Non-Celiac Gluten Sensitivity and Irritable Bowel Syndrome? Large Number of Irritable Bowel Syndrome Patients Sensitive To Gluten Some IBD Patients also Suffer from Non-Celiac Gluten Sensitivity Many Cases of IBS and Fibromyalgia Actually Celiac Disease in Disguise CELIAC DISEASE DIAGNOSIS
    Diagnosis of celiac disease can be difficult. 

    Perhaps because celiac disease presents clinically in such a variety of ways, proper diagnosis often takes years. A positive serological test for antibodies against tissue transglutaminase is considered a very strong diagnostic indicator, and a duodenal biopsy revealing villous atrophy is still considered by many to be the diagnostic gold standard. 
    But this idea is being questioned; some think the biopsy is unnecessary in the face of clear serological tests and obvious symptoms. Also, researchers are developing accurate and reliable ways to test for celiac disease even when patients are already avoiding wheat. In the past, patients needed to be consuming wheat to get an accurate test result. 
    Celiac disease can have numerous vague, or confusing symptoms that can make diagnosis difficult.  Celiac disease is commonly misdiagnosed by doctors. Read a Personal Story About Celiac Disease Diagnosis from the Founder of Celiac.com Currently, testing and biopsy still form the cornerstone of celiac diagnosis.
    TESTING
    There are several serologic (blood) tests available that screen for celiac disease antibodies, but the most commonly used is called a tTG-IgA test. If blood test results suggest celiac disease, your physician will recommend a biopsy of your small intestine to confirm the diagnosis.
    Testing is fairly simple and involves screening the patients blood for antigliadin (AGA) and endomysium antibodies (EmA), and/or doing a biopsy on the areas of the intestines mentioned above, which is still the standard for a formal diagnosis. Also, it is now possible to test people for celiac disease without making them concume wheat products.

    BIOPSY
    Until recently, biopsy confirmation of a positive gluten antibody test was the gold standard for celiac diagnosis. It still is, but things are changing fairly quickly. Children can now be accurately diagnosed for celiac disease without biopsy. Diagnosis based on level of TGA-IgA 10-fold or more the ULN, a positive result from the EMA tests in a second blood sample, and the presence of at least 1 symptom could avoid risks and costs of endoscopy for more than half the children with celiac disease worldwide.

    WHY A GLUTEN-FREE DIET?
    Currently the only effective, medically approved treatment for celiac disease is a strict gluten-free diet. Following a gluten-free diet relieves symptoms, promotes gut healing, and prevents nearly all celiac-related complications. 
    A gluten-free diet means avoiding all products that contain wheat, rye and barley, or any of their derivatives. This is a difficult task as there are many hidden sources of gluten found in the ingredients of many processed foods. Still, with effort, most people with celiac disease manage to make the transition. The vast majority of celiac disease patients who follow a gluten-free diet see symptom relief and experience gut healing within two years.
    For these reasons, a gluten-free diet remains the only effective, medically proven treatment for celiac disease.
    WHAT ABOUT ENZYMES, VACCINES, ETC.?
    There is currently no enzyme or vaccine that can replace a gluten-free diet for people with celiac disease.
    There are enzyme supplements currently available, such as AN-PEP, Latiglutetenase, GluteGuard, and KumaMax, which may help to mitigate accidental gluten ingestion by celiacs. KumaMax, has been shown to survive the stomach, and to break down gluten in the small intestine. Latiglutenase, formerly known as ALV003, is an enzyme therapy designed to be taken with meals. GluteGuard has been shown to significantly protect celiac patients from the serious symptoms they would normally experience after gluten ingestion. There are other enzymes, including those based on papaya enzymes.

    Additionally, there are many celiac disease drugs, enzymes, and therapies in various stages of development by pharmaceutical companies, including at least one vaccine that has received financial backing. At some point in the not too distant future there will likely be new treatments available for those who seek an alternative to a lifelong gluten-free diet. 

    For now though, there are no products on the market that can take the place of a gluten-free diet. Any enzyme or other treatment for celiac disease is intended to be used in conjunction with a gluten-free diet, not as a replacement.

    ASSOCIATED DISEASES
    The most common disorders associated with celiac disease are thyroid disease and Type 1 Diabetes, however, celiac disease is associated with many other conditions, including but not limited to the following autoimmune conditions:
    Type 1 Diabetes Mellitus: 2.4-16.4% Multiple Sclerosis (MS): 11% Hashimoto’s thyroiditis: 4-6% Autoimmune hepatitis: 6-15% Addison disease: 6% Arthritis: 1.5-7.5% Sjögren’s syndrome: 2-15% Idiopathic dilated cardiomyopathy: 5.7% IgA Nephropathy (Berger’s Disease): 3.6% Other celiac co-morditities include:
    Crohn’s Disease; Inflammatory Bowel Disease Chronic Pancreatitis Down Syndrome Irritable Bowel Syndrome (IBS) Lupus Multiple Sclerosis Primary Biliary Cirrhosis Primary Sclerosing Cholangitis Psoriasis Rheumatoid Arthritis Scleroderma Turner Syndrome Ulcerative Colitis; Inflammatory Bowel Disease Williams Syndrome Cancers:
    Non-Hodgkin lymphoma (intestinal and extra-intestinal, T- and B-cell types) Small intestinal adenocarcinoma Esophageal carcinoma Papillary thyroid cancer Melanoma CELIAC DISEASE REFERENCES:
    Celiac Disease Center, Columbia University
    Gluten Intolerance Group
    National Institutes of Health
    U.S. National Library of Medicine
    Mayo Clinic
    University of Chicago Celiac Disease Center