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Waiting For Results
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I had my 5 year old tested yesterday and now Im just waiting for results. Im more afraid of a false negative than a positive. I just hope what ever the result that its accurate. I dont want to find out in a year or five that she was celiac and I have been damaging her.

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This is why many of us suggest giving the strict removal of gluten a good three month trial after testing is complete.

I hope you receive clear testing results, but if not removing all gluten to monitor symptoms is the best next step to make sure your test results were accurate.

Children generally improve very quickly when gluten is the cause of their symptoms - whether it be Celiac Disease or Non-Celiac Gluten Intolerance.

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Yes, I agree. Once testing is done, regardless of the results, try the diet (strict - don't cheat just because it is only a test) and see if the original symptoms resolve. Also, double check to make sure you got the complete panel done . . . sometimes a test is negative, but if you didn't get them all, there will always be a question.

Good luck. Waiting and not knowing is hard.

Cara

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The dr office called and said it was negative but she didnt give me the numbers so Im going to go in and get a print out of the results.

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AandGsmomma, what does your instinct say? I know that's not scientific but, not to be too snarky, a lot of doctors these days aren't too scientific either :huh: . I just say this because starting this summer I KNEW my son had (has) celiac and shortly thereafter I KNEW I had it too. I was right on both. But the first blood test on my son came back "negative" as well. My blood work came back strongly positive and his second round of blood work, with DGP, came back positive enough for me, combined with his genes and symptoms.

I don't know what your daughter's specific issues are but for me the big test of whether to go with the doctor is, if not celiac, what else? I've had celiac for thirty years and just been told it's nothing. But I wasn't ready to accept that my son going from 90th percentile to 5th percentile in height, having constant fatigue and early stages of anemia, weak and stained teeth and now constant diarrhea, is normal and "nothing". So I kept going with his GI who still believes he does not have it and just needs antacids (????) but got an appointment in to see a celiac specialist at the end of the month. He's off gluten and I believe he has celiac. Let's hope both our little ones get better soon.

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Megsybeth, its interesting that you ask what my instinct says. I have felt like something was off with her for a while. Her growth is fine for now, but she has awful constipation. When she does go, its tan and sorry to be gross, but HUGE! She is very pail and has dark circles under her eyes. She complains of leg pain. The biggest issue is the sudden behavior change. She has always been a bit anxious but latley her anxiety has been a big problem as well as huge off the charts tantrums over nothing.

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I also have come up negative on blood /endoscope but have esiohigitis and issues with vitamin deficiancy along with family history of celiac.

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I would definitely report back here with her numbers because there are people on the board who know the tests in and out and can link you to research. Also, maybe look at Peter Green's book? Since you both have gluten issues, I'd take both of you gluten free and see what happens, after the testing of course. You can search this site for celiac knowledgeable doctors and post to ask for recommendations in your area.

My son only had positive DGP IGA so his old GI still does not consider him to have celiac. Pathologist said biopsies were negative for celiac. But I have it, he has it. I would like the specialist I'm seeing in two weeks to confirm it but to me going gluten free is really nothing compared to watching your child suffer and not having anything to do.

Good luck! And check out the cookbook "Gloriously Gluten Free". So delicious I recommend it to non-celiac friends.

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behavior change was our only symptom in my then 5 year old. First doctor did tests and said NOT celiac. By then, I had tested positive and just knew he was so we kept looking. Took him to a specialist who did endoscopy and found extensive damage. Trust your instincts.

Original "know-it-all" doctor said he didn't have it because he was not positive on the TTG IgA or the Gliadin IgA. He was positive on all the IgG tests, but that didn't seem to interest the doctor. His gene test also indicated a "low" probability. That, and the lack of "classic" symptoms led him to to the conclusion that he didn't have it. He was also very bossy and condescending, so we were happy to go elsewhere.

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behavior change was our only symptom in my then 5 year old. First doctor did tests and said NOT celiac. By then, I had tested positive and just knew he was so we kept looking. Took him to a specialist who did endoscopy and found extensive damage. Trust your instincts.

Original "know-it-all" doctor said he didn't have it because he was not positive on the TTG IgA or the Gliadin IgA. He was positive on all the IgG tests, but that didn't seem to interest the doctor. His gene test also indicated a "low" probability. That, and the lack of "classic" symptoms led him to to the conclusion that he didn't have it. He was also very bossy and condescending, so we were happy to go elsewhere.

cara, please make sure this doc's name is known in your local celiac community....
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    • Hi Beachgrl, It won't hurt anything to go gluten-free now, except the possibility of getting a diagnosis of celiac disease.  When i went gluten-free, it seemed like the initial changes were spread over about 6 weeks.  I had gut spasms for that time.  And other changes, all for the better.  Initial recovery from celiac damage can take up to 18 months, so it can be a slow thing.  Some people get better much faster of course, because we are all individuals and not identical. Going gluten-free for celiac disease is a lifetime commitment though, and some people have a hard time doing that without a diagnosis.  Even minor amounts of gluten can cause us to react, so it is best to eat a very simple diet of whole foods at first.  Avoid dairy and processed foods.  I hope it works out for you.  I know some people with Crohns disease eat gluten-free and find it helps them.  Gluten is a tough thing to digest for all people, but most don't have an immune reaction to it like celiacs do.  
    • Honestly, I would not trust the school to provide a gluten-free meal except for fruit, salads, veggies, etc. I sub in a school cafeteria and I swear everything is breaded or on bread. Utensils are shared. They're very clean but unless you have a very knowledgeable person in there, I just wouldn't chance it. I found a slim Jim type snack that says gluten-free on it. If you want to give me your email or FB account, I can send you some very valuable info on 504's though. They carry the student right through college. I kept a copy of what a friend wrote about her daughter being in a sorority and just how the 504 helped immensely. But, I would definitely get one and still be prepared to pack a lunch. All our meals are delivered frozen and we just hear them up. If your school actually fixes food, that's different. 
    • Oh, I would suggest providing gluten-free goodies (e.g. Candy) or even a frozen cupcake (kept in the teacher's freezer) in the event of a party.  My daughter's classmate is severely allergic to peanuts.  Her mom did that and Abby was never left out!  😊
    • Hi Nobody, Welcome to the forum!  I noticed you said you have been avoiding wheat products.  That's good, but are you avoiding rye and barley also?  Wheat, rye, and barley are the 3 grains that cause reactions in celiac patients.  About 10% also react to oats. If you haven't had the full celiac antibodies test panel, it might be worthwhile getting that done now.  The ttg is just a basic test and is generally followed up by an endoscopy or the full celiac panel. I wouldn't worry a lot about getting cancer.  That doesn't happen often. It is possible some of the other grains you might be eating are contaminated.  A group did a test on several off the shelf products a few years ago that would not normally be thought of as having gluten and found some actually did have low levels of gluten.  Things like corn meal for example.    
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