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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.

Celiac Diagnosis For My 13 Yr Old?
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8 posts in this topic

My daughter has had three episodes (each one worse than the previous) of rotten egg burps that have recently started smelling like feces and severe diarrhea(actually soiled herself while sleeping). She becomes very fatigued, back aches, joints hurt, dehydrated, and emotionally upset. It has gone from lasting 24 hrs to 5 days with the last episode. Once the diarrhea stops the burps stop. Then it's almost like it just builds up again and starts over a few weeks later. Took her to a specialist and he is testing for parasites and celiac. I was told by a homeopathic doctor that I have a wheat allergy. My PA ran blood work and it was negative but he said to listen to my gut and cut out wheat and see what happens. It felt better within a week. Is it possible she has an intolerance like me or is it possible she has celiac? Getting frustrated for her and concerned.

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Yes, it is possible for her to have Celiac Disease. Hopefully, they did complete panel. You can check out the University of Chicago's celiac website for the exact tests. Hopefully, you will have results soon.

There are no known or well established tests for a gluten intolerance. Basically, if you fail all celiac testing, you can try removing gluten from your diet for six months. This is called Non Celiac Gluten Intolerance. Unless you had a skin test, you probably do not have a wheat allergy. celiac disease is an autoimmune response to consuming gluten. It is not an allergy. It runs families who have autoimmune disorders like thyroiditis, lupus, type 1 diabetes, etc.

She could have issues with a non-functioning gallbladder too as well as parasites.

Keep us posted on her results. I am a mom of a 13 daughter who fortunately has not developed celiac disease yet, so I can empathize with you.

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Hard to give you a solid answer. GI issues are very hard to figure out at times.

 

All of the things you say she is experiencing can be celiac but they can also be Crohn's disease, ulcerative colitis or any number of other issues.

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Cyclinglady,

They have done a complete panel but we are waiting for results. We have several autoimmune disorders in the family..lupus, RA, hashimotos thyroid, reynauds phenomenon,, juvenile diabetes, etc. I am praying that her results will be negative but am hoping for some sort of explanation for all of this. I personally haven't had any testing done to rule out celiac disease. Just the blood work for food allergies. It was all negative. My doctor said to eliminate "wheat" for awhile and see what happens. I did and felt better after about a week but I am still in doubt that that is my issue. Right now she feels good so I will pray it stays that way.

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Ugh! Do not give up gluten yet. My husband gave it up based on input from his clueless doctor and my allergist. It was the right solution, as he has been gluten free for 13 years and he knows gluten makes him sick. However, now he does not have a diagnosis. He would be first one to say that it is much easier in terms of support from medical, family and friends based on the reaction from my official diagnosis.

The next step in testing is an endoscopy to access damage, take biopsies and rule out other issues like Fenrir stated. You have to keep eating gluten until all testing is complete.

Your doc was wiling to test for allergies but not celiac for you? There are over 300 symptoms! i just had anemia and no tummy issues. Print off U of C's list of symtoms and testing requirements and share with your doctor.

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I am keeping her diet the same for now until we have an answer. She has had to much weight loss to change it right now without clear answers. My doctor continues to brush my stomach issue off as IBS.(I am a believer that IBS is a bogus diagnosis for when they just don't know) If my daughter comes back positive for celiac then I will be insisting on further testing for myself. Being in limbo is a bummer!

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Keep us posted and I wish you luck!

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When all testing is done.  You may find yourself "negative for Celiac".  You have proven to yourself that you feel better not eating gluten.  Current medical testing isn't proving why so many feel better not eating gluten.  Listen to your body, you don't need a medical diagnoses to be gluten free.

 

There were some reports out years ago about 30% of untreated Celiacs have non-functioning gall bladders.  (I would expect the data from these old reports to have changed.  Before Celiac was becoming mainstream patients were having gall bladders removed, and then getting diagnosed with Celiac {10 years ago if you searched Celiac you found reports stating Celiac was only a 1 in 40,000 statistical odd, and then 1 in 10,000 which seemed to quickly change to 1 in 333 ~ which quickly noted genetic link and family members need to be screened})

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    • Second Panel has come back...advice?
      Update!  I went to my follow up with my gastro. He's hesitant to diagnose celiac without an endo, but said he will redo the blood work after I'm several months gluten free. My DGP IGA should drop after being gluten free, right? This could confirm the suspicion? I know the TTG levels drop, but want to be sure the DGP also drops on the diet.  Thanks! I've already replaced all kitchen equipment and pantry/fridge items. Early on I didn't realize the potential for cross contamination in restaurants. Now I do, so eating out has been put on halt for a bit. 
    • does your diet have to be like a perfection?
      Yes.  You have to be 100% gluten abstinent when you have Celiac Disorder.  It gets easier to be gluten abstinent, not because you get used to it but because of the negative effects that ingesting gluten causes when you accidentally eat something with gluten.  Nothing tastes good enough to go through a glutening.  As your system heals it will become less tolerant of your occasional lapses into gluten consumption--accidental or otherwise. You have to take this seriously.  You get used to it and there are some wonderful gluten-free options out there.  But you can't go back to gluten and stay healthy.  It just doesn't work that way. Good luck.
    • does your diet have to be like a perfection?
      I  think you need to watch where you get your medical info!    Of course you can't introduce gluten back in. And  of course you have to be strictly gluten-free and not intentionally eat gluten.   "The gluten-free diet is a lifetime requirement. Eating any gluten, no matter how small an amount, can damage your intestine. This is true for anyone with the disease, including people who do not have noticeable symptoms. It can take weeks for antibody levels (indicating intestinal damage) to normalize after a person with celiac disease has consumed gluten. Depending on a person’s age at diagnosis, some problems, such as delayed growth and tooth discoloration, may not improve. The gluten-free diet requires a completely new approach to eating. You have to be extremely careful about what you buy for lunch at school or work, eat at cocktail parties, or grab from the refrigerator for a midnight snack. Eating out and traveling can be challenging as you learn to scrutinize menus for foods with gluten, question the waiter or chef about possible hidden sources of gluten, and search for safe options at airports or on the road. However, with practice, identifying potential sources of gluten becomes second nature and you’ll learn to recognize which foods are safe and which are off limits." http://www.cureceliacdisease.org/living-with-celiac/guide/treatment    
    • does your diet have to be like a perfection?
      FlowerQueen is correct.  Once diagnosed with celiac disease, you should never consume gluten again without the risk of becoming very ill (osteoporosis, liver damage, lymphoma, etc.).   I think everyone has trouble in the beginning sticking to a gluten free diet.  That's because gluten is in so many processed foods.  It takes time to learn to read labels, make a safe kitchen, learn to eat out, get your family to support you.  I would advise reading out Newbie 101 section under "Coping" within this forum.  It contains valuable tips for becoming gluten free.  Also, check out the University of Chicago's celiac website to learn about celiac disease.  Knowledge is power!   Everyone has different degrees of damage, but I would say that learning the diet and healing can take months to a year or longer.  The good news is that this is an autoimmune disorder that is treatable -- avoid gluten at all costs!   Take care and welcome to the forum!   
    • does your diet have to be like a perfection?
      Not sure what you mean by perfecting your diet? Do you mean accidentally eating gluten?   As to re-introducing gluten again, if you have celiac disease, please DO NOT ever re-introduce gluten again. It's an auto-immune disease, not a food intolerance. It will damage your gut again if you do.  Hope this helps.
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