Conflicting Doctor Opinions?

[janelyb]

ok so the GI did blood testing back in january on my 3 yr old most of the tests came back negative except 1, the IgG antiglidian was a very strong positive. Well at that point the GI doc told me the results were inconclusive and that the particular test has a high false + rate. Anyways she had us challenge the gluten-free diet....so he has been on the gluten-free diet for 6 weeks and really no improvements; so we saw her yesterday and she said again that the IgG has a high false + rate and she didn't think his chronic severe constipation was related to food.

So today we saw an allergist for skin testing. We did a skin test for the food allergens and all came back negative no reactions at all! I was upset and not sure where to go now.....the allergist saw the blood IgG results and he said he has no doubt that my son is + celiac based on the test and his constipation and his tummy aches when he ate certain wheat foods. He says keep him on the gluten-free diet and then follow up with GI. I told him the GI said it maybe a false pos, he disagrees and says he personally has only seen 2 other kids with high IgG and were celiac. He wants to do another skin test this summer called the patch test, but really what is the point when he already tested negative on the skin poke and the food panel blood tests.

I asked about the gene testing and the allergist was infavor for it but suggested we wait until the summer and he said it is a highly expensive test that most likely my insurence may not pay for.

So what doctor do I believe??? Oviously I think my son is celiac and I plan on sticking with the gluten-free diet but I kinda need a medical prof behind me on this for hubby to truely believe and for the school to get a note saying yes he has it.

[Nantzie]

At this point I would do the testing through Enterolab. I had a difficult husband too, so it was really my only option. He needed some sort of proof too. I think that Daddy's have a hard time thinking that their child might be sick, so they want it not to be true so bad that they ignore or explain away symptoms.

I found it helpful to know that I wasn't barking up the wrong tree or was reading more into things than there was.

Depending on what tests you order, they will test the stool not only for gluten intolerance, but milk, egg, yeast and soy. Other foods can cause some really intense problems. You may end up finding out that soy or eggs are more of an issue than gluten.

If you get the gene test, it can be useful too. Most people have at least gluten-sensitive genes. But it can be helpful to know what genes you're working with because sometimes talking to others with the same gene can tell you what symptoms might be matching up. For example, I've got DQ1, subtype 6; which I've found through other people here coincides with my mobility, sleep and mood issues a little more strongly than maybe someone with DQ2.

I'm sorry you're having such a hard time getting some answers. It's got to be really frustrating.

I remember you saying you were sending your son to preschool right now. The preschool my daughter went to, Phoenix on Elverta (Janel and I used to live in the same area) never asked for any proof. They just took my word for it. I pre-made all of her food. I followed the school's menu to send a gluten-free version of whatever they were serving the rest of the kids that day. I don't think that most preschools would require anything other than your word as a parent. If you pay for preschool rather than going through the public schools, remember you're a paying customer. So they're more likely to do what you ask.

Nancy

[Juliet]

The gene test through Enterolab (www.enterolab.com) is not too expensive compared to other tests - $149 (or at least it was as of a month and a half ago). They sent swabs for us to use on the inside of our mouths, we sent it back to them via UPS (all paid up), then got the results back via e-mail 2 weeks later. I know that some people question the validity of their tests for Celiac Disease, gluten intolerance, lactose intolerance, and soy, but the gene test itself is actually done through the Red Cross and therefore the results are not really controversial. If you then find out your son has one of the genes, you can probably tell your husband and doctors whether or not these problems are associated with Celiac Disease or not.

One thing that is interesting to note, apparently most of the genes in the category where the celiac genes also reside are linked with gluten sensitivity.

[janelyb]

I'm sorry you're having such a hard time getting some answers. It's got to be really frustrating.

I remember you saying you were sending your son to preschool right now. The preschool my daughter went to, Phoenix on Elverta (Janel and I used to live in the same area) never asked for any proof. They just took my word for it. I pre-made all of her food. I followed the school's menu to send a gluten-free version of whatever they were serving the rest of the kids that day. I don't think that most preschools would require anything other than your word as a parent. If you pay for preschool rather than going through the public schools, remember you're a paying customer. So they're more likely to do what you ask.

Nancy

Nancy he's in a federally funded/county preschool program and they are pain in the you know what on everything...Fortunately they already have a letter from a natropath doctor saying my son was intollerent of wheat, but not one saying he is celiac. We did come to a compromise I am suppling the main meals and they supply fruit/veg and milk. They serve real fruits and vegs(since they are a fed funded program) so I never have to worry about seasoning on them. My son has an active IEP and I'm considering having them write this in his IEP, which we probably will since I am supplying food.

Me bringing food was a safer option, I did let them provide at first until they were sending inappropate choices like baby gerber cereal for breakfast, totally un acceptable for a 3 yr old to eat IMO. And he wasn't eatting anything they gave him, but he does he what I bring.

[Ursa Major]

A lot of people with celiac disease don't really get much better until they eliminate dairy as well. Dairy is well known for causing constipation. So, it might be an excellent idea to cut dairy out of your son's diet as well as the gluten. It might make a huge difference.

I will be better if you don't substitute soy for the dairy, as it also could cause big problems. Rice milk (not rice dream, it's processed with barley) and almond milk are good choices for substitutes.

[FeedIndy]

I'm not sure how much more proof your husband would need. You just got a positive diagnosis from a medical doctor. Does it matter if it came from the allergist, the GI or a pediatrician? We got our diagnosis from DD's allergy/immunology specialist based on negative skin prick results and positive dietary response. It came from a doctor so that was all the "real" proof I needed to tell my family she was strictly gluten free.