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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.

Stressed Out--What Do I Do Next?
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3 posts in this topic

So, if you read my other post you would be aware that we took our 6 1/2 year old for a blood test to check for celiac disease over Christmas holidays. His results were as follows:

tTG IgA: 25 HI (weak positive 20 -30 units)

GLIADIN AS: IgA: 4 (<20 negative)

GLIADIN AB: IgG: 11 (<20 negative)

Background history is that I have "diagnosed undiagnosed" Celiac disease (I got so sick from the gluten challenge to prep for further testing (i had cut wheat out for about 8 months prior to bloodwork) that I was told by the dr to stop. At that time I had never heard of Celiac disease, but when have experienced cc i have suffered so severely that there is NO doubt what the issue is (chronic constipation, stomach bloating-- I literally look 6 or 7 months pregnant, I fall asleep with 20 minutes and cannot be woken up, etc).

k

Fast forward to now, we had my youngest tested because he has been having stomach pain when he eats, and I was sure his test would come back negativ because he wasn't having diarrhea (as far as i knew i wad an anomaly). Well, after his test coming back weak positive I did some research and reached out on this site. i found some great info and got some great advice. I went back to the dr who had ordered the same test to be done again in 3 weeks and told us to boost his gluten intake (he doesn't eat as much as the average child because I make a lot of gluten free meals because of myself. Anyway in the 3 weeks of challenge he lost 4 pounds. The dr is pretty sure it is Celiac disease (he said between the bloodwork--which he said is 95% accurate for Celiac--and the weightloss and stomach pain we basically just proved that he has it).

He is boking us in with a Ped. GI (no word yet as to when appt will be), and he just went for his repeat bloodwork.

I guess my biggest concern is what if his tests come back negative (bloodwork and scope/biopsy)

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Sorry something went wrong with the rest of my post...

So, if testing comes back negative, what do I do?

Has anyone had a child with a weak positive tTG and negative on all other bloodwork and have a positive biopsy?

And if the only thing slightly elevated is the tTG and the dr is pretty darn sure it is nothing else, would you raise your child gluten free? Would you take him off of gluten and then reintroduce him to it in a month?

Dr says it should take 3 to 6 months to get in to see the Ped. GI and that we should take him off of gluten until we have a better idea of how far off the scope will be......

What are your thoughts?

TIA :)

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My kids tested negative but I took them off gluten anyways. 2/3 of them have shown some real health improvements on a gluten-free diet. I guess I figure, what could it hurt? They now eat more whole foods and have all grown quite a bit since going gluten-free. It's an inconvenience for me as I have to pack their food everywhere we go, but they feel better...

I would make your son gluten-free for a good 6 months if I was you. If there are zero improvements, then let him eat it again but if there are any improvements at all, why let him eat something than hurts him?

Good luck. :)

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    • Newbie: mother to coeliac kids
      Until he starts getting better he really needs to stick with soft, bland foods. I put a mashed potato soup recipe in the recipes area. What is healthy for a normal person isn't necessarily good for an inflamed digestive system. Anything spicy, acidic should be avoided. Fruit is acidic. I've read that pickled cabbage is good, but you couldn't pay me to eat anything pickled when I was nauseous. Things that I think would be safe are: broth mashed potato soup (the am. cheese and butter make the broth taste great) Baked potato mushy meatballs, no spices other than salt low fat vanilla ice cream with whey in the ingredient list   If these things work out try adding summer squash cooked in olive oil, add salt Summer squash tastes good in mashed potato soup.   Twice as many small meals are easier on your digestive system.   I am not a doctor or nutritionist, just been there, done that, want to help.  
    • Newbie: mother to coeliac kids
      I've just had a call from out GP with biopsy results. She said it confirmed celiacs and has a March 4 level. Does this sound correct?  She said she expected it given his antibodies were the highest she had ever seen.  We have an appointment on Friday for follow up. At least we know for sure now. 
    • Needed support
      Yes I got and colonskpy and endoscopy back in Oct. They said these tests were negative. However I recently found out at my new DR that notes on my tests(colonskpy ) said cronic inflammation of my intestines. I had also been eating mostly gluten free at least six months before the test. I have the gene for it and a huge amount of  symtoms so the g I dr said she could go ahead and dianose me with Celiacs or I could eat gluten for two weeks and get the colonskpy and endoscopy done again. I chose the first one and I have been feeling better since going competly gluten free. The ct scan is for them to check for cancerous tumors and possibility of Crohns just in my small intestines. She did say that I might have more than one thing going on. I didn't realize that you can't see Celiacs on a cat scan. I know that the tumors can happen with long term undiagnosed Celiacs and I'm not sure if Crohns is related as well. 
    • Newbie: mother to coeliac kids
      Yes, the broth helps. He wolfed some down and felt okay.  He insists he didnt eat anything from his friends. He did however gobble several gherkins last night - I checked they were gluten free but I am wondering now.  Dammit. He loves gherkins.  
    • Confused
      Nothing big to add, just want to reinforce what @cyclinglady said.  From what I have learned, your GP cannot diagnose celiac.  The best they can do is find indicators (such as the test you got results for) which are really neither definite positives or definite negatives - they're just warning signs, and refer you to a specialist. See your GI.   They'll be able to give you a real informed opinion so you won't be in limbo.  And as she said, don't cut out the gluten until the GI tells you to - even the GI's tests are indicators that appear as a result of relatively recent gluten intake.
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