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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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maitrimama

I Have Gone gluten-free W/my 15 Yr Old And I Feel Terrible!

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As a show of support I have gone gluten free with my 15 year old daughter. It has been one week and I feel terrible, queasy, shakey, tired, grouchy etc. and she is the one with celiac. Honestly if my daughter said she felt this bad I would have thought she was exaggerating so I am glad I am doing this. I know she isn't feeling great and I am worried she won't stick it out, she gone all day at school and I have no idea if she is strictly sticking to gluten free. Yes I was a bit of a wild child but I don't know what I would have done. Does this feeling terrible last long? Does anyone have any advice for dealing with and helping a teen?

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All I know is I hate being sick. I wouldn't wish it on anyone. I'm sure your daughter doesn't want you sick. If gluten free makes you sick, don't do it. There are other ways to help your daughter. You tried and it didn't work. We do a gluten free dinner. That is what has worked for us. Maybe try that. As you said, she's gone all day. So what's the point other than that.

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I would give it more time. From what I understand, many people go through a "withdrawal" like phase when they cut out gluten. That's what it sounds like may be happening to you right now.

I would not give up on it yet. It has only been a week. I would say give it at least a month.

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Thank you very much for the support, it actually made me cry. As a mom I want to protect her but also know life's difficulties are what shape us into caring compassionate people. I still wish it could be me and not her. She's my trooper, first born,wasn't breathing at birth, iugr baby, heart defects,dislocated her elbow when she was 5 and popped it back in...hasn't she had enough? You'd never know if you met her (though she is small for our family 5'3" & 94lbs). My heart sank when we got the diagnosis celiac AND IBF. We'll get through it no matter how unfair it seems.

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If being gluten-free makes you feel ill, then it's a sign that you have problems with gluten. I agree with giving it more time. You may find that once you're through the early stages you feel better than you have in many years. :)

Good for you for doing this with your daughter, and congrats for discovering your own issues.

I would also ask if you've switched to whole foods, or went straight for the gluten-free substitutes. Many people find that eating natural, fresh cooked meats, veggies and fruits make them heal more quickly.

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It's a little surprising what going off gluten can do when you're sensitive to it. You'd think it would be like deciding you're not going to eat strawberries or nuts but if you're sensitive it's totally different. For some people there is a mild opiate-like effect from gluten and when you remove it from your diet you go through a withdrawal. It's typically a few weeks. Hang in there, because it definitely gets better and keep encouraging your daughter too.

Also as Jestgar points out, if going off gluten is messing with you this badly you are almost certainly gluten sensitive. You may be pleasantly surprised how well you feel gluten-free once this uncomfortable phase is over.

Don't feel sorry for your daughter. It's a godsend you caught her celiac this young and she hasn't had to live with it for 30-odd years! Celiac is a pain in the butt, but it's not the end of the world. It's totally treatable with diet, which is a lot more than you can say for many other health problems. Most of us don't think of ourselves as having a "disease" becasue once you've been gluten free for a while, you recover.

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Have you been tested yet for celiac? You may want to get yourself and any other family members tested now. I went gluten free for my DD, and I never would have guessed that I would be unable to do a gluten challenge for myself later (my reactions are too severe now after being strictly gluten free for my DD). And we had some withdrawal issues initially with going gluten free, but they passed.

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I agree that all first-degree family members should be tested, but I don't agree that feeling bad is necessarily a sign that you have a problem with gluten.

richard

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I agree that all first-degree family members should be tested, but I don't agree that feeling bad is necessarily a sign that you have a problem with gluten.

People who have no problems with gluten go on and off it at will, with no issues at all. It's no more of an issue than deciding not to eat strawberries for a couple weeks. You probably go on and off various foods like seasonal produce all the time without thinking anything of it. For people who tolerate gluten, it is digested with no particular inflammatory, immune, or biochemical reactions just like any other food.

If you get a response off gluten, positive or negative, and it's not a sensitivity to something else you've suddenly started eating more of like xanthan gum, your body is seeing gluten as something other than simply food. The reaction needs to be examined with celiac testing and a couple months trial of a gluten-free diet to see what's really going on.

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I highly doubt this is a celiac thing. It sounds like hypoglycemia, honestly. What exactly have you changed in your diet? (Clearly "cut out gluten", but what does that look like, in real-food terms, for you?) If you're eating more refined carbs (say, processed gluten free cookies, etc.) and less protein/fat, this could be part of the issue. If you're also simply eating a lot less, that could cause these symptoms as well. (Alternatively, if you are introducing processed, gluten free things into your diet that previously were not there, there may be something in those that you are sensitive to.)

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It does feel like hypoglycemia that won't let up. Usually a piece of fruit and some cheese helps but not this time. I am usually a pretty healthy eater and suppose I am eating less but that is probably a good thing. Another thing is that is does feel like withdrawal, I am an alcoholic/addict in recovery for quite some time but I do remember this feeling. I am going to stick to it and talk to my doctor on Monday because I just happen to have a blood pressure check.

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Just trying to understand. Does Skylark think that xanthumgum could be an allergen to Celiacs? I wonder that with baking flour, gluten free for myself.

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Xantham gum seems to bother some people. It is in alot of products in small amounts. It is in gluten-free baked good so suddenly eating them means you are suddenly eating alot more X gum than before.

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You might want to consider what you are eating. Are you eating a lot of gluten free juck foods? It might just be the increase in junk foods. How about having omelets, stir fries with rice, fruit and yogurt, meat and veggies. If you are eating a healthy diet you should feel well.

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Xantham gum seems to bother some people. It is in alot of products in small amounts. It is in gluten-free baked good so suddenly eating them means you are suddenly eating alot more X gum than before.

Exactly. Thanks, Karen!

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    admin
    WHAT IS CELIAC DISEASE?
    Celiac disease is an autoimmune condition that affects around 1% of the population. People with celiac disease suffer an autoimmune reaction when they consume wheat, rye or barley. The immune reaction is triggered by certain proteins in the wheat, rye, or barley, and, left untreated, causes damage to the small, finger-like structures, called villi, that line the gut. The damage occurs as shortening and villous flattening in the lamina propria and crypt regions of the intestines. The damage to these villi then leads to numerous other issues that commonly plague people with untreated celiac disease, including poor nutritional uptake, fatigue, and myriad other problems.
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    Celiac disease is most often uncovered because people experience symptoms that lead them to get tests for antibodies to gluten. If these tests are positive, then the people usually get biopsy confirmation of their celiac disease. Once they adopt a gluten-free diet, they usually see gut healing, and major improvements in their symptoms. 
    CLASSIC CELIAC DISEASE SYMPTOMS
    Symptoms of celiac disease can range from the classic features, such as diarrhea, upset stomach, bloating, gas, weight loss, and malnutrition, among others.
    LESS OBVIOUS SYMPTOMS
    Celiac disease can often less obvious symptoms, such fatigue, vitamin and nutrient deficiencies, anemia, to name a few. Often, these symptoms are regarded as less obvious because they are not gastrointestinal in nature. You got that right, it is not uncommon for people with celiac disease to have few or no gastrointestinal symptoms. That makes spotting and connecting these seemingly unrelated and unclear celiac symptoms so important.
    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. 

    CELIAC DISEASE VS. GLUTEN INTOLERANCE
    Gluten intolerance is a generic term for people who have some sort of sensitivity to gluten. These people may or may not have celiac disease. Researchers generally agree that there is a condition called non-celiac gluten sensitivity. That term has largely replaced the term gluten-intolerance. What’s the difference between celiac disease and non-celiac gluten-sensitivity? 
    CELIAC DISEASE VS. NON-CELIAC GLUTEN SENSITIVITY (NCGS)
    Gluten triggers symptoms and immune reactions in people with celiac disease. Gluten can also trigger symptoms in some people with NCGS, but the similarities largely end there.

    There are four main differences between celiac disease and non-celiac gluten sensitivity:
    No Hereditary Link in NCGS
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    Unlike celiac disease, NCGS is so far not associated with malabsorption, nutritional deficiencies, or a higher risk of autoimmune disorders or intestinal malignancies. No Immunological or Serological Markers
    People with celiac disease nearly always test positive for antibodies to gluten proteins. Researchers have, as yet, identified no such antobodies or serologic markers for NCGS. That means that, unlike with celiac disease, there are no telltale screening tests that can point to NCGS. Absence of Celiac Disease or Wheat Allergy
    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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    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. 
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    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
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    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