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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.

8 Month Old
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I think my 8 month old daughter might have a gluten intolerance. I am going to see the pediatrician on Sunday, and I will ask for a referral to see a specialist, but I'm not so sure I'll even be able to get any tests or diagnosis where I live. I live in Saudi Arabia.

I keep reading that in order to properly diagnose celiac disease, you have to have gluten in your diet. Well, every time I give my daughter anything with gluten she gets the worst diaper rash ever and poos so many times a day. I suspected she had a wheat allergy when she was about 5 1/2 months old because we let her eat bread (chew on bread) and she got diarrhea and a horrible diaper rash that even bled. I recently decided to try wheat again, and today I gave her barley cereal. So, now the very loose stools are back and the diaper rash. How can I keep giving her gluten if she gets a diaper rash? It's horrible to see her cry every time I change her diaper and she's also been so fussy the past few days since I gave her gluten again. :(

Is she too young to diagnose? Also, I keep reading that celiac disease is genetic. So, is there a 50/50 chance to pass it on? Actually, after reading about all the symptoms in adults, I think my mom might have it and not know it.

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Hi,

I have a similar story. My little guy was very colicky, terrible diaper rash (raw blistered looking). I cut out gluten, dairy, and soy, and all the symptoms disappeared. They asked me to reintroduce it after a few months. And all the symptoms came back. So of course I stopped, so now he can't be tested for antibodies or bowel damage via a scope because he is not being exposed, but I don't mind. They can do the expensive genetic testing (but there are lots of false positives-like 20-30 percent of people test positive)...

The other thing is they tested my little girl who was eating gluten and having chronic diahrea and slow growth for the IGA antibodies associated with celiac, and she was negative. However, I am totally IGA deficent, and it is genetic and it is associated with celiac disease. So I started her on a gluten free diet and she is having normal poops :) Within a few days!

Hope that everything works out well for you! I have found that common sense is sometimes the best medicine, unfortunately alot of the specialists we have worked with seem to lack this key. If it hurts to touch, don't touch it! And if it is not broken, don't fix it! Cheers and Merry Gluten/dairy/and soy free Christmas!

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I have a similar story too. My daughter is 22 months now. She had the EXACT same symptoms going on when she was that age. I finally put it together when she went on whole milk and things got 100 times worse. She was lactose intolerant too.

We did ALL testing (allergy, endoscopy, Celiac panel, and Gene) everything was negative. It is real hard to diagnose them when they are so young.

My suggestion to you is go with your gut. If you can't get the testing or if it comes back negative, keep her off the gluten anyway. You can always re-introduce it when she a little older and her immune system is more mature.

We were on and off gluten ALL summer trying to get her a diagnosis and things got really bad. She started to have a systemic reaction. She developed these rashes up and down her arms and legs and then she developed a rare auto-immune disease, which I believe was triggered by her in-ability to process gluten.

We have been gluten-free since the beginning of sept and she improving dramatically.

I hope this helps. I had a really hard time getting Dr's to take notice that something was wrong. Despite ALL the negative tests, her symptoms improved on the gluten-free diet. I finally, convinced her GI Dr. to diagnose her with a gluten-intolerance but this was only after she was diagnosed with her other auto-immune disease. I think that a gluten-intolerance, is a real thing but hard to prove and can wreak havoc on the immune system and be as harmful to the body as Celiac disease. It really needs to be researched more. I hope you find the answers you are looking for. Good luck!!

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    • 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!    
    • Will my doctor test me? So many symptoms...
      Welcome, @iwillmoveamountain! Of course you are not wrong to pursue getting testing for celiac. My advice is to drop that doctor and find a new one, preferably one who is celiac savvy, and who will listen to you and test you for the disease.  
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