Help!

[momothree]

I'm hoping that someone can shed some light on my situation. My son (12) tested positive on his blood test (very high-102), and we are going for his biopsy on Tuesday. My 18 month daughter old tested negative on her blood test, but she appears to have more symptoms. I just spoke to her pediatrician and she said that her IgA was .21 which and doesn't seem to indicate celiac. So, after reading many posts on this forum regarding the inaccuracy of tests in children under 5, with such a low reading, is it very unlikely that she has celiac? Is it rediculous to put her on a gluten-free diet (like my inlaws believe) to see if her symptoms improve? Her symptoms are a bloated tummy, loose stools alternating with constipation, and a rash in her diaper area that travels down both legs and up her tummy that sounds like DH (at least from any descriptions that I have read). I guess I'm just really confused. I thought I'd figured out what was up with her, and now I don't know anymore. Should I start the search again, or can a .21 IgA reading possibly be inaccurate due to her age? Any insight would be greatly appreciated--this whole diagnosis process is draining.

[momothree]

Greetings! I posted this earlier, but it ended up getting lost in the abyss somehow (or I don't know what I'm doing, which is more likely the answer!) Anyhow, it went something like this.... My 12 year old son's blood test results were, I'm told, very high (102). I don't exactly know, and didn't know to ask, exactly what the actual type of test it was (I was told that 20 is considered normal). My 18 month old daughter, who has quite a few suspicious symptoms, was also tested. I spoke to her ped. today, and she told me that her IgA was .21 (very low) and that it definitely wasn't celiac. Having read a few different posts on this forum, it seems that the tests are pretty inaccurate before 5 yrs. old. Her symptoms are - bloated tummy, looser stools that alternate with constipation, and a rash in her diaper area that extends part way up her tummy and down her legs (from reading descriptions of it, it sounds similar to DH--she has had it for just over 6 months, and it comes and goes). Now, I'm confused. My inlaws think it's crazy to put her on a gluten-free diet to see if her symptoms improve if it isn't celiac, and I don't know if such a low test result could still be inaccurate. Am I barking up the wrong tree here? Should I keep searching for an answer to her symptoms, or could it still be celiac? Any help would be greatly appreciated. Thx.

[Annie/NM]

I am definitely no expert in this area but can just give you my experience. My 3 year old son has alternating D with sticky constipation. We are waiting the biopsy but the bloodwork came back positive. He was diagnosed with toddler's D and irritable bowel and now we await the "diagnosis" of celiac or not, I think either way we are going to try the diet. We just can't seem to potty train him with the frequent small amounts of sticky poop (sorry for the description). Anyways, best of luck to you. He is very large for his age and doesn't fit the "stereotypical" description of someone with this, except the constipation/D.

[lbsteenwyk]

With a positive test in your son it is quite possible your daughter has celiac as well. Tests can be inaccurate, especially in children under 2, so I would not discount celiac disease based on her test. It's unfortunate your in-laws aren't on board with this. What does your husband think about putting her on the diet? Your in-laws may have a more positive attitude if their son is supportive of trying the diet. If your son has been having a lot of symptoms, they may also become more supportive once they see how much the gluten-free diet improves his quality of life.

Have you thought about having your entire family go gluten-free? Then you would be trying your daughter on the diet by default. Children usually have a dramatic and quick response to the gluten-free diet, so you would probably see an improvement within 1-2 weeks. I put my then 2 year old daughter of the gluten-free diet due to symptoms. After my in-laws saw how much her health improved, they were totally on board with the gluten-free diet, even without a diagnosis. They still are extremely supportive, over 2 years later.

Another option is to wait 6 months and have her retested. Or you could ask for a biopsy now to see if she has intestinal damage. But you need to be sure you have a competent pediatric gastroenterologist do the procedure. Many doctors don't do enought biopsies and miss the diagnosis. They need to take 4-8 biopsies of the 3rd portion of the duodenum to get accurate results. Also, the pathologist who reads the slides needs to be aware of the more subtle changes that can occur in celiac disease, short of complete villous atrophy.