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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  1. I have a friend with Celiac disease who has type 2 diabetes, odd since I read that your husband is also diabetic. She's had an easy time finding recipes and experimenting with different foods, and she can now occassionaly eat pasta without getting sick. Hopefully you have Trader Joes type stores there that carry some of the gluten free products!

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  2. That's gotta be hard! Joey's pediatrician tested him for celiac because of his severe constipation and some other issues he was having and I must say I was relieved when it was negative! I was not looking forward to having to go gluten free. So tough! But I know if any one can do it you can Maya! Best of luck to you and Mark. And I think you guys have all these 'weirdo diseases' as you put it because you guys handle it so well and are sooo good at educating others about it! You guys rock!

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  3. Oh yeah, you guys are for sure a shoe-in for House. :)

    Good luck!!

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  4. Wow, I hadn't read this one yet! You guys are going through a lot, but it sounds like you've already done lots of research for Celiac disease and are making lots of changes already. As far as the Wendy's burgers go, I don't think Mark will miss them, unless he thinks they are the Nickelback of fast food…. :)
    It seems like there are lots of options when it comes to gluten-free food and it seems like you've found some great sites for some fun recipes. I'll be sure and check back and see how your new recipes are working out.

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  5. My neice was just recently diagnosed with Celiacs also. I was amazed at the food that are not what they appear to be, who would have thought Rice Krispies were not made of rice??
    As for the whole House thing – whenever I hear that I just want to shout IT’S NOT LUPUS! LoL
    FYI I am putting a call in the Ripley’s for you right now.

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