SLIDER

Celiac Attack

Sunday, October 12, 2008



Not wanting Caroline to be the only one in the fam w/a rare genetic disorder, Bryce was diagnosed with Celiac Disease a couple weeks ago.
If you haven't heard of Celiac Disease, it is a digestive disorder caused by an autoimmune response to foods containing gluten. The only treatment for this disease is to go on a life-long gluten free diet. 

He had none of the common symptoms of celiac; the only way he found out about this was because he happened to get a blood test for some additional life insurance, and it showed that he had elevated liver enzymes. After numerous doctors' visits, various tests (including a liver biopsy) and blood tests, his internist determined that he should have a blood test for celiac. The test came back positive. Then, to confirm that he did in fact have celiac disease, he was referred to a GI for an upper endoscopy where he took a biopsy of his small intestine. The scope revealed that his small intestine was stripped of villi and damaged. The biopsy confirmed that he has celiac disease.

Even though he currently has no symptoms, his GI said that, if he does not adhere to a strict gluten free diet, he will begin to present symptoms of celiac. In addition, and most importantly, failure to adhere to the diet will put him at a high risk for cancer in his small intestine, which is apparently very difficult to treat and has a high mortality rate.

Celiac disease is genetic and is not that uncommon (1 in 133 people).  Gluten is in foods like: bread, pasta, pizza, cookies, cake, pie, flour tortillas, beer (a real sacrifice for B :), most soy sauces, most oats - anything with wheat - pretty much our whole diet:).  

It's not the ideal thing to deal with, but we feel blessed to have discovered it when we did and that is wasn't a more severe diagnosis.  We can make this change and soon it will become easy.  Like I said in a previous post, I'm currently working full-time (fundraising for a county commission candidate), so this hasn't exactly been the easiest time to completely alter my family's diet, but we're adapting.

For more information on celiac disease, go to:

www.celiac.org
www.celiac.com
www.csaceliacs.org

Also, don't worry about us, his doctor said that if he adheres to a gluten free diet, his small intestine should repair itself within a few months and his liver enzymes should return to normal. Then he'll finally be able to get that extra life insurance : )


11 comments:

  1. That is crazy! Luckly gluten-free stuff is a lot easier to find now. I read that there are a lot of people in the UK on gluten-free diets and a lot of kiddos with autism and even rett syndrome on on gluten-free diets. What a blessing to have found it now...before symptoms...rather than later! You'll have to post some yummy gluten-free recipes that you come up with!

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  2. My mom either is still or once was allergic to gluten as well (don't ask how she could be before and isn't now...?), but my point is she knows lots of stuff you can make/buy/eat that's gluten-free. So if you need any advice, let me know and I can have her contact your mom or something. I'm sure you have it figured out but I thought I'd offer. I see gluten-free stuff at health food stores like Whole Foods and Trader Joe's all the time, too. I've had some and...you'll...get used to the taste?

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  3. No cookies?!?! What torture to live with the cookie master and not get to eat them. You will have to let me know when you come up with a gluten free alternative recipe to your current best chocolate cookie ever recipe (which I get raves about whenever I take it anywhere, of course).

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  4. I agree with Lauren, "That is crazy!" I hadn't looked at your blog for awhile and needless to say, I was shocked to read of Bryce's newly discovered condition. As usual you are looking at the silver lining in all this and what a blessing that will be to you. We continue to remember you in our prayers. Love, Aunt Kris

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  5. Davis has a friend with celiac so he usually brings his own snacks to preschool and sunbeams. Crazy, crazy, you guys. I'm glad you found out now, too.
    LOVE YOU!

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  6. Gosh I'm sorry to hear this. I have an intolerence to wheat (but I'm ok with other gluten products) which I became aware of after an operation several years back. I found it so difficult to change my diet at the beginning esecially when eating out but now I am so used to it I wouldn't even want to eat wheat products even if I could. Good Luck with the change and if you want a good recipe book try "Cooking without" and "Vegetarian Cooking Without" by Barbara Cousins. These books include recipes that are wheat, gluten and dairy free and although you may have to buy some ingredients you've never even heard of before they are easily found in health food stores and T and I have thoroughly enjoyed every meal we have made from this book! In fact T liked them so much he has decided to go wheat-free too even though he doesn't have to.

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  7. One of my best friends and a couple of her kids have celiac disease. They've got it down now. Apparently she's become a chemist, learing to mix tapioca starch with rice flour to come up with flour-like consistency.

    Liz

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  8. Wow! Just think with all the challenges you are having in this life your mansion in heaven is going to be amazing. =) All joking aside, we sure love you guys and you are always in our prayers. It sounds like you have the right attitude though. Keep smiling!

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  9. Uncle Phil and I just finished our traditional Sunday night nacho feast and guess what...the Mission brand tortilla chips are gluten-free. You might have guessed that but I thought I send a little ray of sunshine your way--Bryce's way too! You don't have to give up Nachos!
    Love, Aunt Kris

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  10. Erika - Check out www.celiacchicks.com - there will be tons of free advice and info on there, as well as great recipes. In the mean time Original Pancake House has gluten free pancakes and PF Changs has a gluten free menu. There is even a super fab gluten free cupcake bakery in NYC called baby cakes.

    My sister found out she was gluten intolerant a few years ago and has really found her dietary restrictions to be livable, but she still really misses crepes sometimes. Miss you - xoxo Sheri

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  11. I know a hand full of people with this same thing. There are really good gluten free products at places like whole foods and trader joes that will compensate.

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