Wednesday, June 20, 2007

I don't think I've ever been this angry.

I got a call. A life changing call last Thursday night that my son had tested positive for Celiac Disease. This is an auto-immune disorder that requires a strict, lifelong gluten free diet. My super picky eater boy will never be able to eat a lot of foods that most of us take for granted.

Unsure of what to do, on Friday morning I called our Doctor's office and said I had got some dramatic test results and I needed more information and asked if his doctor or my doctor could call back.

It's Wednesday of the following week and I am still waiting. I have called twice a day since Monday and I have not made my second phonecall today, but I probably will in about an hour.

The back of my head is pounding I am so angry. I stopped the gluten on Friday and made some pretty dramatic changes to my kitchen. I got rid of all the gluten foods that he eats and plan on phasing out the rest of the stuff with gluten that we eat and replace it with GF alternatives.

But I expected to have a conversation with a doctor about whether or not all this was a good idea.

What the fuck? Why haven't they called me back. According to the Childrens Hospital Boston website, 1 in 80 kids have this disease. It can't be the first time a blood test has come back positive.

What the hell is going on.

Off to make my tenth phone call. OK, it's only my sixth. But still.


Blogger gary said...

I was diagnosed over a year ago as an adult. Doctors rarely know much about this disease so don't expect too much. Look for a local support group. If there isn't one, start one. My doctor told me all kinds of inaccurate information. You need to keep up with the latest research. They only know what they learned in medical school 20 years ago. A support group can help you compare notes and have clout with local restaurants.

Tinkayada pasta is good, glutino pretzels are better than the originals. I can't find anything that passes as bread but glutino corn bread is OK for grilled cheese. Corn tortilla chips are good but watch out for "multi grain" with wheat. Start cooking Mexican and Thai food which can be easily made gluten free. (I know this isn't helpful for picky kids.)

It's not that hard if you are preparing his food at home. Going out to eat (or on vacation) can be tricky however.

Good luck.

3:52 PM  

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