About that diet

Many of you have expressed interest in Ben's gluten & egg issues (thanks for that). I'll do my best to post how we're adjusting.

It's hard.

I felt kind of whiny admitting that (it's just food, right?), but then lots of people started sending me information on support groups for parents of kids with Celiac Disease. I figure a support group validates the crappiness of the situation. I'm seriously considering joining one - if for no other reason than to gain awareness of resources.

Here are some answers to your FAQ's.
1. How do you really know it's Celiac Disease?
We don't, actually. We do know for certain that he has a wheat allergy. We have not had Ben formally tested for Celiac Disease. It would require another blood panel. The simplest answer to the "is it Celiac or just a wheat allergy?" question is "Probably, so treat it as such."

2. Why does it matter?
Well, an allergy is annoying and bad and you should avoid them. Celiac Disease is different than an allergy because it is an autoimmune condition that actually creates damage to the intestine. Even in small amounts, damage is done. We saw this recently when I gave Ben Wheat Free fig newtons and realized later that they were not gluten free. I'll spare you the details, but we saw a significant difference in his diapers. Even flours that do not naturally contain gluten will still have traces of it if processed in the same facility as gluten products. Or if baked in the same kitchen. Or if grown in a field nearby. Seriously. Yes, this is all very overwhelming. If something says it is gluten free, it means all of these factors have been eliminated.

3. I see gluten free stuff everywhere - what's the big deal?
Yes, there are a wide variety of gluten free options available these days. Especially snacks. But remember - Ben's most severe allergy is to eggs. Go read the ingredients of just 3 of your favorite snacks. If one of them doesn't contain wheat or egg, call me and tell me where I can find it :)

4. So what CAN he eat?
Fruits, veggies, meat, beans, cheese and gluten free grains. That's actually quite a bit. But you won't find any of it on the kids' menu - I'll tell you that. No breaded chicken, noodles, soy sauce, ranch, tortillas, mayo, baked goods... I could go on. The bottom line: the more natural the food, the better. The more processed, the more risk.

5. How's Ben doing?
Great. Marvelous. Fantastic. He's hungry a lot more lately. And I can seriously tell when his blood sugar's low. It's actually quite common for kids to gain weight after their diagnosis because while their little bodies are fighting with the gluten, they are not capable of absorbing all the nutrients they ingest. Also, a painful abdomen means loss of appetite. I wish I had a picture of his little belly to show you just how well Ben's doing in this regard. Even his cheeks are fuller.

6. How's the diaper rash?
Gone. Within 48 hours of eliminating wheat & egg it was totally cleared up. 100%. I can hardly believe it. Again, we aren't talking about just an irritated bum here. By diaper rash, I mean open sores.

7. Might he outgrow it?
To quote my doctor (not an allergist), "Stranger things have happened." Ben has a great aunt who outgrew a childhood wheat allergy. Here's hopin'. It's doubtful that he'll grow out of Celiac Disease. A wheat allergy, maybe. And lots of kids grow out of egg allergies before they're five. The peanut allergy is a bit of a mystery to me. He's developed antibodies without ever consuming them (probably from my breast milk). We'll avoid them at all costs for many years and then have him retested. With peanuts, you don't just introduce them and see how he does.

8. What about daycare?
They have designated shelves for each of the kids. Ann's been diligent to only feed Ben what I send for him.

9. That stuff's expensive - are there coupons for that?
Rarely. But they do go on sale. I'm committed to finding Ben's favorites and then stocking up by shopping online. Somewhat related, I've also recently learned of a tax break (Rev Proc 55-261) for the extra cost of gluten free foods. It requires scrupulous record keeping and itemization. I'll let you know if my tax agent (Keith) ends up deciding it's worth it.

10. What's gluten actually in?
Here's a pop quiz for you. Identify which of the following ingredients definitely (or may) contain gluten:
wheat
couscous
licorice
rice
barley
gelatin
play dough
glue
chocolate
bacon bits
bubble gum

Made up your mind?
No cheating!






The ONLY safe option on the list above is rice.
Not kidding.
Poor kid.