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Molly's mom

Celiac Test

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So Frustrated!

I am pretty convinced that my 5-year-old, Molly, has Celiac's and her doc consented to have the test done. He also ordered other tests for absorption issues. The results should have been in last week, but DR was on vaca. I started Molly on a gluten-free diet in the meantime and she has gone from having "oatmeal" in her diapers (yes, she is still in diapers... she has developmental delays) to more of a peanut butter consistency-pardon the description! A little freaked out, but glad that I seem to have found the problem... I couldn't wait to hear that I have been right, so I called in today to find out the results from her back-from-vacationing- doc. All of the test results seem normal with the exception of some white blood cells in her stool... oh, and they didn't have enough blood to do the celiac's test... WHAT?!

I calmly planned to have the blood taken again (sure, I Love pinning down my hysterical child while 2 nurses attempt to draw blood from her tiny arm) and mentioned how I would have to put her back on gluten for it. He told me that didn't matter, since the blood test looks for an antibody and she either has it or she doesn't. Ok.

He called back tonight at 8:30, after having done some homework, apparently, and told me that it would be best if she WAS on a diet including gluten. But worse than that, she has to be on it for 2 weeks before they can do the test again! I'm so frustrated right now, I could scream!

But really, I do have a question in here...

Does anyone have suggestions on what to give my poor kid while we're trying to 'glutenize' her? I don't want to make her really sick, but I also want to make sure the test is accurate.

Help?

Molly's Mom, Christina

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Poor thing! We had the same problem when I tried to have my 3 year old tested a while back...they needed more blood. I always figured the lab just screwed up and needed another sample. I never went back, I just put him on the diet and that was that.

I don't really have any suggestions as far as how to minimize the gluten reaction......if I remember right, she should be consuming the equivalent of 3 pieces of bread a day or more (someone correct me if I'm wrong!) before testing. If she does get really sick, I would hope the doctor would consider that proof enough. I hope you get some answers soon. My daughter is also developmentally delayed, and I am so thankful she was diagnosed at age 3. She is catching up to her peers now after alot of therapy, but she is still about a year behind. I have no doubt that if she hadn't been diagnosed so early, she would be autistic. She still has some autistic tendencies, but those have lessened over time (especially after taking out milk and soy). Good luck with everything....always remember to trust your instincts, whatever the test results may say. If you see improvement, but the tests say otherwise, you aren't going to hurt her by going on the diet anyway. That's what we did with our younger children, after seeing the great damage that gluten can do.

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I have the solution for you! first of all, if they do retest the blood ect. haven them send it to Prometheus Labs (which takes also MedicCare and Tricare ect.) or to EnteroLab, both are SPECIALIZED in looking for Celiac or Non-Celiac-gluten-Sensitivity. both have the same symptoms, it's just with Celiac it's already the full-blown desease where it attackes the small intestine, and the NCGS can (if left untreated, meaning staying glutenfree) turn into Celiac. The second one is by far more common, actually an estimated 30% of americans do have it with or without Symptoms!

If you do want to opt for a more accurate, way more sensitive Test you should go with EnteroLab! They developed a Stool-Tes that is highly sensitive and actually able to show a positive often longe before it will show in the blood! AND, she does NOT have to be put back on Gkluten for it! It is so sensitive that even after many month or even a year of Glutenfree it'll pick it up if she is sensitive! Go here to enteroLab (to my knowledge the only Lab rtight now who has the Stooltest since they developed it, many here have tried it and where really happy with it) , read the Questions and answeres and you'll feel much better! http://www.enterolab.com/StaticPages/Frame_Faq.htm

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