School Compliance, Biopsy Equivocal

[stolly]

Just spoke with DD's (2.5) doc. The bx was equivocal...there is damage to the villi, but the changes were not classic celiac disease. He's waiting to hear back from their expert pathologist for his input. With her celiac panel, her TTG was elevated, but she also has rheumatoid arthritis, which can also increase the TTG (however, I am aware that she is at increased risk for other autoimmune disorders since she has arthritis). Anyway, our doc thinks it will likely be called celiac disease, but he isn't sure...he said that damage to the villi can also be caused by a virus (and she did have fevers last week before the biopsy) and some other rare causes. He did say that if the pathologist isn't definitive, one way to be sure is to load her with gluten for a month then repeat the biopsy. I also asked about going gluten free for a month and seeing how she does...certainly that would be good to avoid another biopsy. However, my question/concern is would it be better to have a definitive diagnosis in regard to support from school and the whole 504 plan issue (I don't know much about them yet). Thanks

[mmcdaniels]

My kids are on IEP's instead of 504's. I think with either IEP or 504, a letter from the doctor stating that your daughter requires a gluten-free diet as well as gluten-free school supplies should be sufficient. I don't think the school will look at the diagnosis as much as the letter from the doctor. I personally wouldn't do extra testing just for school compliance issues.

Marsha

[ravenwoodglass]

Just spoke with DD's (2.5) doc. The bx was equivocal...there is damage to the villi, but the changes were not classic celiac disease. He's waiting to hear back from their expert pathologist for his input. With her celiac panel, her TTG was elevated, but she also has rheumatoid arthritis, which can also increase the TTG (however, I am aware that she is at increased risk for other autoimmune disorders since she has arthritis). Anyway, our doc thinks it will likely be called celiac disease, but he isn't sure...he said that damage to the villi can also be caused by a virus (and she did have fevers last week before the biopsy) and some other rare causes. He did say that if the pathologist isn't definitive, one way to be sure is to load her with gluten for a month then repeat the biopsy. I also asked about going gluten free for a month and seeing how she does...certainly that would be good to avoid another biopsy. However, my question/concern is would it be better to have a definitive diagnosis in regard to support from school and the whole 504 plan issue (I don't know much about them yet). Thanks

I don't have any answer to the school question but there is some info that you may find interesting as regards your DD RA diagnosis.

You may find that once she is gluten free that she her RA goes into remisson. I find it interesting that doctors note that often the TTG is positive for RA patients. I find this a real Duhhhh sort of idea. I have a 'celiac' gene that is considered to be rare in the US. I did not have any gene testing done until I had been gluten-free for 5 years. In researching my gene I found that it is considered a gene for RA in the US but in other countries it is a recognized celiac gene, or a gene for a rare kind of adult onset diabetes, or a gene for psoriasis. Depending on the country. Gene research is in it's infancy after all. Anyway, the important thing is that my arthritis has been in total remission, without meds for almost as long as I have been gluten free. I can't say for sure that your DD will have the same effect but I hope she will. It may have been her problem all along.

I think I agree with you about the dietary trial, but give it at least a couple of months. When there are joint and muscle or brain issues it can sometimes take a bit to heal. It seems much 'kinder' than trying to make her sicker to diagnose.

I hope things resolve for her soon.

[Ursa Major]

What your doctor is saying is, that you should make sure her villi are completely destroyed by loading her up with gluten, just to get a 'more' positive biopsy. That is crazy. I agree with ravenwoodglass that it would be much better to eliminate gluten instead.

If she gets better, you will have your answer. And you will have helped her heal, instead of trying to make her sicker, just to get a diagnosis.

If she gets better, all you'll need is a letter from your doctor to get the school benefits.

I hope the gluten-free diet will help your daughter's RA, that would be awesome.

I used to have severe joint and muscle pains before going gluten-free, and they went away.

[stolly]

Thank you all for your responses and support. We're still waiting to hear back from the the GI doc, but we really don't want to do another biopsy, and don't have a problem challenging his recommendations.

As for the gluten free diet helping with her poly JRA, that makes sense that it could take a while to help (she is also on methotrexate, which has helped tremendously the past 6 weeks...and I am hoping we can stop it if the gluten free diet makes a difference).

The other issue if her "failure to thrive," which can be caused by both celiac (if she has it) and JRA. She's 20 pounds at age 2.5, has had weight issues since 15 months old (but appetite decreased before that), and not only has she not gained, but she's lost weight in the last year. Not that I want her to have celiac, but it could help with all of these issues.

Thanks again!