We Are Off To The Ped. Gastro. Tomorrow--what Questions?

[mommymatheny]

If you all aren't familiar with our situation, see my other post, "Am I right to go gluten-free with my 11 month old." Anyway, we have been gluten free for two weeks, and last night Olivia slept through the night for the first time in months. I am also feeling better myself, not as tired, no longer having carb cravings or a desire to binge on gluteny foods (I am recovering from an eating disorder, coincidence???).

Anyway, there was a cancellation and we see the specialist tomorrow. Other than the general info questions, does anyone have any suggestions for questions to ask? Information to provide? I thought about getting Olivia's chart from her pediatrician, but figured they could fax it if the specialist wants it. I did pull her growth records, most dramatic is the change between 3 months (95%ile for weight) to 6 months (50%ile). Hmm...we introduced solids at 4 months but did not decrease breastfeeding at all, interesting....

So, anyone have any advice???

Thanks so much, you all have been so helpful in this so far!

Sarah

[AndrewNYC]

I have not read your story but I will offer this: there are a number of associated and easily treatable conditions with celiac and you need to address these NOW. Many times doctors and even celiac specialists will not address all of these things unless you ask, the idea being "lets see how junior does once gluten is out of his diet for a couple weeks/months/years." Half of celiac people get better on the diet and the other half have residual problems ranging from very minor to major. So attack all of these issues now because the smallest thing can morph into a major problem at some point when the kid doesnt need to be bothered with it. Ask about these things and when you do the doctor will start ordering tests because they want to cover themselves. Things that come to mind:

soy allergy

dairy allergy

fructose allergy

fecal fat output

pancreatic enzyme levels

immunoglobulin deficiency

[mommymatheny]

I have not read your story but I will offer this: there are a number of associated and easily treatable conditions with celiac and you need to address these NOW. Many times doctors and even celiac specialists will not address all of these things unless you ask, the idea being "lets see how junior does once gluten is out of his diet for a couple weeks/months/years." Half of celiac people get better on the diet and the other half have residual problems ranging from very minor to major. So attack all of these issues now because the smallest thing can morph into a major problem at some point when the kid doesnt need to be bothered with it. Ask about these things and when you do the doctor will start ordering tests because they want to cover themselves. Things that come to mind:

soy allergy

dairy allergy

fructose allergy

fecal fat output

pancreatic enzyme levels

immunoglobulin deficiency

It is interesting that the first three things you mention are allergies. The gastro said that infants Olivia's age CANNOT HAVE CELIAC (?!?!) and that we are likely dealing with an oat and/or wheat allergy. He has referred us to an allergist. In the meantime both Olivia and I are to stay oat and wheat free, but by no means should have to be gluten free since she "can't have celiac." Like I told my husband, maybe she can't be diagnosed with celiac, but she certainly can have it, and just be diagnosed at a later date.

I'm completely lost here, but am going to call an allergist tomorrow.