Musings of a Marfan Mom

End of an(other) Era

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Last Wednesday Mark had a milestone of his own; he ate a Wendy’s burger and chili-with-crackers for the last time.

Last Wednesday Mark was diagnosed with Celiac disease, an intolerance to gluten. Gluten is found in wheat, barley, and rye, but is also used as an additive in processed foods. No one is totally sure what causes Celiac, but it is an autoimmune disease that targets the digestive tract. In Celiac patients, the body reacts to the absorption of a protein in gluten (gliadin) by attacking parts of the small intestine, which causes the breakdown of the small intestine and difficulty absorbing certain vitamins and minerals. Mark was diagnosed because of his moderate anemia. We started the diagnostic process in March, when he was diagnosed with Type 1 diabetes, and it’s taken till now to determine the cause of the anemia.

Now, I know what you’re all thinking. Seriously? This family has ANOTHER weirdo disease? Pretty crazy, huh? Well don’t tell anyone, faithful blog readers, but we’ve decided to go for the world record in rare diseases in one family. I don’t know what the current record is but I assure you, give us enough time and we’ll beat it. Or if not, we should at least get featured on House.

I am grateful that we’ve been able to gradually slide into this. Last month Mark tested positive for the Celiac associated antibodies so we knew Celiac was a strong possibility, but the doctor gave us a list of a few other things it could be instead. Two weeks later Mark had an endoscopy/colonscopy and we got a 99% diagnosis of Celiac, but had to wait another week for the biopsy results to be sure. This gave Mark and me lots of time to research the disease, learn what a gluten-free diet would entail, and get used to the idea.

I’m really proud of Mark. He is a “foodie,” so having to give up a lot of his favorite foods is a huge sacrifice. His doctor said if he follows a gluten-free diet he will hopefully go into remission within a few months, but if he ever re-introduces gluten (in any real amount) he’ll get sick again. To that end we’re getting used to some new foods, cleaning out the pantry, and creating a better method of food storage (because I’m not going totally gluten-free). We’re also very particular about what foods Menininho eats because his immune system is still developing. If we keep gluten out of his system now, his pediatrician said we have a better chance at preventing him from getting Celiac (hard to know for sure, since the exact cause isn’t known, but it certainly won’t hurt).

Along those lines, if you’re interested in gluten-free cooking, I’ll be posting recipes to these blogs: Take That, Martha! and Healthy Eats.

I’m hoping that we can turn this bad luck into a kick-start into healthier eating for our family. 🙂

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