Questions To Ask The Ped At Next Visit?

[The Kids Folks]

Hi- I have a question for this wonderful group... Quick history, this past fall, DS (7yrs) was tested (blood) and he tested negative. Although I still question whether or not he received the full panel. Went through a lot btwn the ped and the ped GI treating symptoms and not wanting to get to the issue. Basically, they kept telling us that he's just that kind of kid? Trying to tell me that this was normal, DS symptoms chronic C, gas, bloating, and muscle/joint aches. He had slow growth or I should say no growth! He had almost fallen off the growth chart, under the 3rd percentile. Low or borderline albumin? and something else (sorry I don't have his records with right now). We also had a bone scan to see where he fell there... he didn't quite make the numbers that the ped wanted to see in order to recommend more testing - endoc, etc. She said that there needed to be an 18 month difference btwn his age and the age he measured and DS was only at a 16 months difference?

I'm only 4'11" so basically she felt that he was "like" me so I should stop worrying and life would be fine! Wrong - you know what happens when Mom's intuition kicks in!"

Sorry this is getting so long... We decided to go gluten free as a family in October 08. It has been life changing to say the least! DS has grown almost 1.5 inches and has gone up a size in clothes. He no longer has the gas, bloating, and chronic C. He has adjusted beautifully.

Okay, so finally to my question... we have switched ped's and I am thinking of taking him in to be "checked" at his 6 mo gluten free to make sure that everything is going well and that we aren't missing anything. What types of things should we be looking for and asking. Any tests? I've interviewed this ped and she seems really willing to listen and understands the "instinct" things. I just don't want to miss anything. I truly wish that I would have followed my instincts sooner. I want to make sure that he is getting everything that he needs nutritionally and that the growth continues (although I would like to see it happen a little faster!)

Any thoughts on what we should be looking for, asking or testing would be appreciated!

The Kids Folks

[ang1e0251]

Right off I'll tell you I'm not medical expert nor do I have a child with celiac disease. I'm the one with it and I am self diagnosed. But I have learned a lot in the past year and I'll give you my two cents.

I would ask for a celiac panel. It should be negative but you will have the numbers on record for future in case other conditions come up in the future. If it should come back positive, you will have your answer and test numbers to compare his progress to in the future. It does take time to heal so it could come back positive. Just be prepared for it to be negative.

Many allergists that I have heard of are telling parents that an elimination diet is strong proof of an intolerance. Ask your ped if she agrees. If so she should accept the dietary limitations you've been exercising. She may ask you to perform a challenge, in other words let him test eating gluten again and report his reaction. This is fair since she's taking your word and his records as the only proof of his condition. A challenge is usually standard for allergists using the elimination diet method.

His vitamin levels should be tested. Malnutrition from celiac disease is very common and correctable.

As for other questions and tests, the parents of children with celiac disease should advise you on that. Good luck and let us know how he progresses. He's lucky to have such an intuitive Mom!!