Challenge Question And Others

[SilverSlipper]

Our middle daughter has celiac disease. Our family, for the most part, is gluten free for family meals. Our oldest and youngest still get gluten at school and occasionally at home. Our youngest has been having a lot of tummy problems this year. It's not uncommon to walk past the bathroom and see her sitting on the toilet because she's constipated, or because of diarrhea. Her stomach aches are several times a week and she's beginning to miss a fair amount of school because of it (she's in kindergarten so it's not a huge deal but she's fast approaching the limit for missed days). I send her regardless of stomach ache unless she also has diarrhea. When she sits down to eat, after a few bites she feels full and her stomach hurts. She's not losing weight like my other daughter and looks healthy (other than dark circles under her eyes no matter how much she sleeps). Because she isn't having trouble with weight/height gain, our pediatrician (who is great) isn't worried about her too much.

We did the bloodwork for celiac disease and it was negative. Our doctor suggested treating for reflux so we've been doing that for about a month with no improvement in symptoms.

I'm not sure if it's the power of suggestion or whether she really keeps track of things, but SHE is convinced she has celiac disease. She says that everytime she eats gluten her stomach hurts. She's knowledgeable about what items contain gluten and which ones do not because of our other daughter.

I've decided to remove gluten from her diet completely and see how it goes for the next two weeks. If she can make it 14 without stomach aches, constipation or diarrhea, it would be a miracle. Then I would like to re-introduce gluten to see her reaction.

My questions -

Is two weeks long enough to see a difference? We can go longer but I need to schedule her well child visit soon and wanted to discuss this further with her pediatrician.

Is it possible to get a diagnosis of gluten intolerance like this? I'm not sure what else to do since this is the second time her blood came back negative (she was tested about 3 years ago when our other daughter was diagnosed).

Is gluten intolerance a diagnosis that the schools will accept for 504 purposes?

Thanks!

[RiceGuy]

Since it is well-known that small children (especially under 6) often get false negatives for Celiac test results, I personally wouldn't put too much faith in them. As for the two-week gluten-free trial, I'd like to think there'd be some sort of improvement, but it isn't anything so definitive as that. Some simply need longer to get appreciable healing/improvement. I do not know if there is any recognized typical time frame.

My thinking on your question of what impact the gluten-free trial may have on future testing, is that since testing is highly unreliable in children of such age anyway, it may not matter much. That is unless you are going to pursue testing as soon as possible (presumably at least 6 weeks after going back on gluten), and trust whatever the results say. Again, I wouldn't trust those results, but that is obviously your decision.

When your daughter resumes eating gluten, that might be the defining moment. She may experience such an increase in symptoms, to prompt her to refuse gluten regardless of any test results. The gluten-free diet is the best test there is, as the contrast from a gluten-filled diet can be most convincing.

I hope you daughter feels better soon!

[Kimmik95]

If your daughter was on a mostly gluten-free diet when she was tested, it could happen that her blood test came back negative. I've also heard of people who's blood test came back negative, but an endo showed celiac disease. She sounds like she has symptoms. You could demand and endo, or you could just take her gluten-free - there's nothing wrong with putting her on a gluten-free diet. If it helps the problem, then you know that, at minimum, she has a gluten intolerance or sensitivity. I think you might need longer than 2 weeks, especially since she's mostly gluten-free already. I would give it 4-6 weeks to really hope to see a difference.

For a 504, you need the actual celiac disease diagnosis, not just a gluten intolerance. Most doctors would require either the bloodwork to be positive and/or an endo to be positive to diagnose celiac disease. Although without the celiac disease diagnosis, your daughter wouldn't qualify for a 504, you could still submit a 504 like document (just take the 504 name off of it) and use all the same requests. My son doesn't have a 504 right now (his school was fighting me on it and I just lost patience), but he does have everything I would want in a 504 in place. His teachers this year have been very understanding (he's in 1st grade) and Chris is very quickly learning to advocate for himself.

Our middle daughter has celiac disease. Our family, for the most part, is gluten free for family meals. Our oldest and youngest still get gluten at school and occasionally at home. Our youngest has been having a lot of tummy problems this year. It's not uncommon to walk past the bathroom and see her sitting on the toilet because she's constipated, or because of diarrhea. Her stomach aches are several times a week and she's beginning to miss a fair amount of school because of it (she's in kindergarten so it's not a huge deal but she's fast approaching the limit for missed days). I send her regardless of stomach ache unless she also has diarrhea. When she sits down to eat, after a few bites she feels full and her stomach hurts. She's not losing weight like my other daughter and looks healthy (other than dark circles under her eyes no matter how much she sleeps). Because she isn't having trouble with weight/height gain, our pediatrician (who is great) isn't worried about her too much.

We did the bloodwork for celiac disease and it was negative. Our doctor suggested treating for reflux so we've been doing that for about a month with no improvement in symptoms.

I'm not sure if it's the power of suggestion or whether she really keeps track of things, but SHE is convinced she has celiac disease. She says that everytime she eats gluten her stomach hurts. She's knowledgeable about what items contain gluten and which ones do not because of our other daughter.

I've decided to remove gluten from her diet completely and see how it goes for the next two weeks. If she can make it 14 without stomach aches, constipation or diarrhea, it would be a miracle. Then I would like to re-introduce gluten to see her reaction.

My questions -

Is two weeks long enough to see a difference? We can go longer but I need to schedule her well child visit soon and wanted to discuss this further with her pediatrician.

Is it possible to get a diagnosis of gluten intolerance like this? I'm not sure what else to do since this is the second time her blood came back negative (she was tested about 3 years ago when our other daughter was diagnosed).

Is gluten intolerance a diagnosis that the schools will accept for 504 purposes?

Thanks!