Just Getting Started...

[Dianne W.]

Hi - I posted questions in the recipes section a while back and got such great help! Now, I have a whole new set of questions.

My 14-mth old son was "colicky" 24/7 until diagnosed with FTT at 6-1/2 mths. At 7 months, the ped-GI mentioned in passing something about milk protein intolerance and that led us to the discovery of Andrew's food intolerances. (The upper GI showed nothing and the ped GI dr was completely useless...oops, that's a different subject.) After changing my diet to get the offending proteins out of my breastmilk and getting Andrew on Neocate as a supplemental formula, he has improved 180 degrees. He still has reflux problems at night but I think that is due to the months and months of damage sustained earlier.

Through my elimination diet and by carefully trialing him on some foods, we have found that he is intolerant of milk, soy, and barley in my diet and he also reacted to corn and rice directly in his diet. (We are fairly sure that he is intolerant of other foods as well, we just haven't identified them yet.) Two weeks ago, we got back the results of his EnteroLab test and it confirmed these findings and identified that he has "one of the main genes that predisposes to gluten sensitivity and celiac sprue, HLA-DQ2 or HLA-DQ8." He also has "a non-celiac gene predisposing to gluten sensitivity (DQ1or DQ3 not subtype 8)."

So that brings me to my first question: Can you all explain to me in normal English what these results really mean for him? I'm assuming - a lifetime of needing to be gluten free. But does it also mean he has Celiac or that he will develop it?

Second question: I keep reading about gluten in toiletries and skin products. Does everyone who is gluten sensitive have problems with these other sources of gluten? It seems challenging enough to consider the dietary gluten sources alone.

Third question: How do I find a local gluten-free or Celiac support group in my area? I am in St. Petersburg, Florida.

Fourth question: It was easier being gluten free (except for cross contamination from utensils, etc) when I was on my strictest level of elimination diet. I couldn't eat anything other than what I cooked and I could only eat a few basic foods. Now that I have added more and more things, I know I have to read labels for the milk and soy and now, gluten. But gluten seems to be MUCH harder to identify on labels. I've been pulling lists from the Internet (like the website for Jennie-O Turkey, etc.) to identify gluten-free foods. But, can you point me to a website where someone has already compiled lists gluten-free foods (preferably Gluten-free Casein-free foods)?

Fifth question: How much gluten is too much? I thought of that when I escaped from my dh and kids the other night for a meal at Ruby Tuesday's. (I can eat one thing on their menu right now - a non-marinated steak, a plain baked potato - I bring my margarine, and steamed zucchinni -- but now I worry about the spices they use on the steak - gluten-free??) But, I then got thinking about the knives and cutting boards, in their kitchen...and mine for that matter. And what about my son's accidental contact with my daughter's hands after she eats a sandwich or the crumbs he touches as he crawls on the floor? He doesn't have any current signs of intolerance reactions (mainly a rash and sleeplessness), but are these small encounters with gluten damaging him? How do I know?

I'm sure I'll have lots more questions later, but these are the main ones I've been wondering about.

[texasblue]

I just wanted to say "HI". We are still in the "figuring out" stage with my almost 5 year old daughter. We live just south of you in Bradenton but our Pedi GI is up there with All Children's and we were there last week for a upper endoscopy and biopsy. I am not qualified to answer any of your questions but I wanted to give you a virtual ((hug)) and tell you I know how you are feeling right now!

[Dianne W.]

Well, I've answered the one of my questions -- I found this list of support groups (https://www.celiac.com/st_prod.html?p_prodid=310) and have emailed the Tampa Bay contact person. (TexasBlue - Did you know that there is also a Sarasota group listed?)