Wednesday, September 26, 2012

Frequently Asked Questions: Celiac Disease

For those of you who don't already know, I was diagnosed with celiac disease about 2 1/2 years ago. I get a lot of questions about it so I figured I'd share some of those questions (and my answers) here.

1. What is celiac disease?
Thanks for asking! Celiac disease is an autoimmune disorder in which the consumption of gluten (a protein found in wheat, barley, and rye) causes damage to the lining (villi) of the the upper intestine.  Villi are finger-like extensions in the intestine that absorb nutrients, so without them people who have undiagnosed and untreated celiac disease are at risk for other nutritional deficiencies and related illnesses.  There is no cure for celiac disease except to follow a very strict gluten-free diet.

2. How did you find out you had celiac disease?
I remember having stomach problems for years and finally brought it up to my doctor, who ran a full blood panel including celiac disease.  The blood test was positive, so I had to go to a gastroenterologist to get my intestine checked through an endoscope.  This test was also positive for celiac disease, so after a gluten-filled meal at Ruby Tuesday I started on a gluten-free diet.

3. How did you get celiac disease?
Typically you have a genetic predisposition to celiac disease--there's no gene for it per se, but the tendency is there and can be "turned on" by any number of factors.  No one else in my family has celiac disease but I do have a genetic predisposition toward it; according to a DNA test Rob bought for me for my birthday, I had a 1.2% chance of developing celiac disease (in comparison to the average Northern European female's chances of 0.7%).

4. What can't you eat?
Pasta, bread, cookies, crackers and wheat cereals are the biggest, most recognizable ones.  Some processed foods have "hidden" gluten so I've had to learn which names to watch out for.

5. What can you eat?
If it comes from the ground and isn't wheat, then I can eat it.  Potatoes, rice, rice-based pasta, quinoa, fruits, vegetables, chocolate, and most candy with the exception of Twix, Kit Kat, or regular Milky Ways.   All meats are okay assuming they haven't been treated with a wheat-based preservative (like some cured meats) or marinated in something containing flour to thicken it. I can eat French fries if they are cooked in clean frying medium without breaded items.

6. Can you eat white bread?
No. It's still bread. (side note: I get this question far more often than you'd imagine.)

7. What can you drink?
Most drinks are fine, including alcoholic ones.  I can drink vodka as it's usually so far distilled that the gluten is at an undetectable level (at least that's what I've been told).  I can't drink beer (though I never drank it before) or whiskey.

8. Is it hard to eat gluten-free?
No, at least once you get a lot of practice at it.  And even if it was hard, I don't have much of a choice. There are lots of gluten-free "substitute" foods that have worked just fine for me, and it's forced me to be much more aware of what I'm putting into my body in general.

9. If I couldn't eat cookies/pizza/bread/pasta/crackers I'd kill myself.
Well if I had your face I'd kill myself.  See how obnoxious that is? Celiac disease is not something I chose, it was something I was born with.  I will never get rid of it and it's not that big a damn deal.  I think that if a doctor told you that you could give up Oreos or put yourself at risk for cancer you'd probably make the same choice I did.

10. I have a family history of celiac disease/have celiac disease symptoms but I'd just rather not know.
That's absolutely your right as it is your body.  One thing I want to clarify, however, is that celiac disease is not the same as a gluten intolerance.  If you have a gluten intolerance, you can eat gluten without physically damaging your intestine. If you eat gluten and have celiac disease you put yourself at risk for infertility and miscarriages, colon cancer, rectal cancer, diabetes, anemia, nutritional deficiencies and early death from other causes. For me personally pizza, bread and other yummy bread-y things aren't worth any of that.

10. Can you eat at restaurants?
Yes, but I generally have to be very careful and know exactly which questions to ask to avoid cross-contamination with gluten-containing foods.  The only times I've gotten sick from gluten after my diagnosis were at restaurants so I am very careful.

11. Does Rob eat gluten-free too?
Not completely.  We don't make two dinners or anything so he does eat gluten-free meals, but we do have bread and cereal in the house and because of this take a lot of extra precautions.  For example, we usually have separate jars of peanut butter, butter, cream cheese, etc. so that he can use them on his bread without worrying about getting bread crumbs on whatever I eat.  We also have separate toasters for this reason. He's also learned to wipe down the counter/stove after making something and if he's using a condiment I use a lot to not touch it to his bread/tortilla so I can use it after him.

11. I'm gluten-free and I make all my own food which is so much better than gluten-free substitutes and ipso facto I am better than other gluten-free people who don't make their own food.
Congratulations, you have won the gluten-free people contest.  I'm going to keep eating premade gluten-free substitutes because they are easy, I am healthy, and I don't have the time and ability to cook.

If you have any other questions for me or for my intestines, or if you are a gluten-free eater who has other questions you'd like to add, please feel free to share in the comments.

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