Thursday, May 24, 2012

Celiac disease

As some of you may have heard, this week I was diagnosed with celiac disease. I was shocked, as I went in to be tested for something else. There is a small chance that the diagnosis could be wrong, so further blood tests at being run to confirm the diagnosis.

Celiac disease is a genetic disease, but some people who have the gene sequence do not develop symptoms. "According to the University of Chicago Celiac Disease Center, if you are a first-degree relative (parent, child, brother or sister) of a person with celiac disease, you have a 1 in 22 chance of developing the disease in your lifetime. If you are a second-degree relative (aunt, uncle, niece, nephew, grandparent, grandchild or half-sibling), your risk is 1 in 39". (link). So odds are, if you're related to me: you're probably safe, but watch out for it. It manifests in a lot of different ways, and is very hard to diagnose by dietary experiments.

Gluten is in EVERYTHING, and figuring out whether or not it contains gluten is very complex, since it is often not specifically labeled as other common allergens are. Brown rice syrup, lunch meats, dressings, soy sauce, imitation bacon, and many other innocent sounding foods SOMETIMES DO contain gluten (link). It doesn't matter if I consume a little bit of gluten, or a lot of gluten: a small amount is all it takes to trigger auto-immune response, which in turns causes the damage. I went off of grains for 4 weeks during my low glycemic diet, but likely still consumed other products containing gluten during that time; this may be why I and other doctors missed the association.

To my friends and family reading this: I fear my diet, now even more restrictive than ever, will be more of a burden for others than it is for myself. I want to be clear: I have absolutely zero expectation that anyone prepare any special food for me at any family function, gathering, or party. It's stressful to others, and it's stressful to me. I'll plan on bringing my own food, or waiting until I get home to eat. So please, if you say, "I'm sorry I forgot to plan something for you, Tim", know that I will be mad (only for a brief second) for not honoring my wishes to not worry about me or feel any induced stress from my dietery needs. I'm very serious about this.

(I will be grateful if you do remember, and do plan something. I just don't expect it. I will need to dissect the ingredient list, and please don't be disappointed if I find a possible of source of gluten.)

Thank you.

Further reading on Wikipedia



Update: Blood test results confirmed the diagnosis.

3 comments:

Unknown said...

Hey Tim, I'm sorry to hear that, but I'm glad you were able to discover it. I was diagnosed with Celiac disease in 1994, so I've had some experience with it.

It sounds like you're taking it well, but I still wanted to let you know that it's not that bad. It was quite a shock to me at first, but things have gotten much better. The labeling is so much better now and there are a lot of gluten free products.

I started learning how to cook Thai and Indian food because they are often gluten free as well as Chinese food with gluten-free soy sauce which is pretty easy to find now. Also, instead of sandwiches I tend to eat things like wraps with corn tortillas (I wet them a little and put them in the toaster oven so they're soft). GF bread is expensive, but nice sometimes. I like Kinnikinnick brand. There's also Chebe bread, which is a tapioca bread mix that's fantastic for making pizza crust or breadsticks. You can get both of them at Sunflower markets.

Groups like the GIG (http://www.gluten.net/) also have good info if you haven't already found them.

Tim Harper said...

Thank you he / she who identifies themselves as Unknown. Gluten.net looks like a great resource, hadn't seen it before.

How reversible have your symptoms been? How did you get diagnosed? Do you find you can have a little bit of wheat from time to time, or can you tell immediately when you have the smallest amount?

(I went off of wheat for about 5 weeks, but didn't seem to notice a discrete difference between on wheat and off... perhaps I just wasn't paying attention to the right things? Also possible that I was consuming other sources of gluten... as you mentioned gluten is in SO MANY THINGS. Sometimes I read a label for food now and see that it has some completely unnecessary source of gluten in it, and it just feels like a punch to the face.

ThinkBrown said...

My father has Celiacs, and believe me, the situation is getting better. There are more and more gluten free foods on the market, and even some restaurants now offer gluten free meals. The local pizza place now even has gluten free pizza.

A couple of tips:
1. Betty Crocker gluten free stuff.
2. http://www.bobsredmill.com/ has tons of GF baking goods.
3. You now have an excuse to eat tons of steak.
4. There are wheat free oreos: http://www.newmansownorganics.com/food_newman-os.html

Both Trader Joe's and Whole Foods have great GF selections.