Sunday, October 4, 2009

Protein Intollerance Confirmed & Celiac Update

Whew. It has been over a month since I have had time to do any updating on this site, and I apologize! I am taking design classes again, and I have hardly any time to sleep – much less write!

Here are some updates on Little Z. We recently visited the pediatric gastroenterologist at Children's Mercy, in the KC area, and he was very informative and was... just wonderful (I have heard from several mom's that their pediatric gastroenterologist are not helpful at all!).

Regarding Celiac Disease: The Pediatric Gastroenterologist was more concerned with Z's possible Celiac Disease than his multiple food intolerances, and that is what we discussed for most of the appointment. As many of you may know, Z tested negative for Celiac Disease, but he reacts to gluten, and Celiac disease runs heavily in my husband's family. The PG said that Celiac tests done on babies under 2 are not reliable (regardless of what kind of test that was done). He said we should keep him on a gluten-free diet until he is at least 4, and at that time, we can test him again, but it will require that he go back on gluten. He also said that now research is showing that some people who have Celiac Disease test negative for it (even when they eat lots of gluten) because they don't have a normal IgA response (this is really technical, and I don't fully understand it myself. See this article in Living Without to read more). I was concerned that he would have to have a biopsy done to confirm that Little Z had Celiac, but the Pediatric Gastro assured me that those are not needed anymore like they were in the past. Ultimately, I got the feeling that he thinks Z has Celiac, but right now we just don't know for certain.

Regarding intolerances: Little Z is clearly intolerant to several foods, but the Ped. Gastro. was not too concerned with them. He said that most children outgrow dairy and soy (and other) allergies/intolerances by age 3, but some later. He said we should not introduce any new foods to him until he is at least 2 years old, and he suggested that we could try putting a teaspoonful of milk in his tippy cup of rice milk for several days and see if he handles it OK. Increase it every few days to see if he has a reaction. And of course, introduce foods very slowly (one every four days or longer).

It was a wonderful visit, and the main point I took away was this: we should follow the symptoms and not test results. In fact, the doctor said he has one little boy whom he sees that tests allergic to eggs, but he eats eggs everyday with no reaction!


  1. Good for you Michelle! I am so proud of you for not giving up and continuing to find good food for your family to eat. My family has multiple food sensitivities too and I've been trying to experiment with the foods that cause issues with my baby. I don't know if or when I'll ever figure them all out.

    I rely more on symptoms than medical tests too. I don't need a test to tell me that my daughter has a problem with gluten, it's pretty clear from the symptoms. But then sometimes I still wish there was a doctor who could help, because most of the time I feel like I'm telling them more about it.

    1. So sorry that I never replied to your comment. Life got hectic and something had to give! Unfortunately, it was my blog. Anyway, thank you for reading. I agree about feeling like you are telling your doctors more about it! It is that way for me, too.

  2. Michelle, thank you for this blog! My 15 months old boy has also multiprotein intolerance, and the list is endless, including rice and many almost all the fruits ? of course those most common ones like gluten and milk. I really know what you talking about. There is still some food ingredients I haven't found out what they are but causes problems so we are always just waiting to have a good day when our boy could have a rest of stomach pain and other symptoms.
    I couldnt find your email address from this blog, but I would love to be able to write to you more, ask about good doctors here (we just moved from Europe) etc..
    I wish good and happy days for you!! Thank you for sharing your situation!