My Frequently Asked Questions

I try to keep this blog mainly about recipes and food, but since May is Celiac Disease Awareness Month, I thought I would do a couple of non-recipe posts. Today I'm going to tell you the answers to the questions I get asked fairly regularly when people first notice that I don't eat the same things everyone else is eating. I'm answering the questions the same way I do in conversation, so don't look at this as any kind of nutritional or medical advice (and don't look at anything on this blog as nutritional or medical advice, actually, because I am not qualified to give either and will never be qualified to give either to people on the internet), but this is just more of a "how I deal with social situations" kind of post. So these aren't super science-y answers, just what I would say in a social situation. (If you want some science, I recommend reading "Celiac Disease: A Hidden Epidemic by Dr. Peter Green.) Have any more questions for me? Leave them in the comments!

1. Why don't you eat (wheat/bread/flour/gluten/those donuts that I brought/etc)?
I have a medical condition called celiac disease that makes me unable to eat wheat, barley, and rye and things made from them. I get very sick if I eat them. It's kind of like an allergy but it's a little different.

2. What do you eat? (My favorite version of this was followed up by, "That must be awful! I would die if I couldn't eat bread!" Actually, don't feel bad for me - I feel bad for you that your life is so awful that eating bread is the only pleasure you have left!)
Anything that's not wheat, barley, or rye! I can eat rice and quinoa and other grains. Mostly I eat fruits and vegetables and meat and cheese and eggs, things like that. I cook most of my own food and it's not at all hard to cook things I can eat. It's sometimes hard to go to a restaurant, but it's getting easier all the time as people become more aware of celiac disease.

3. What happens to you when you eat (wheat/bread/flour/gluten/those donuts that I brought)?
I can get very sick. Bad intestinal stuff happens. Most people are grossed out by even that much and change the subject after that, but some people are actually just legitimately curious and like to talk about that sort of thing, so if they are I'm more than happy to give details.

4. Have you tried eating fermented wheat products/ezekiel bread? My friend/relative has gluten problems, but they can eat those things because all the gluten ferments out of them!
That's good that it works with your friend, but I'm guessing your friend probably has some other kind of gluten intolerance rather than actually celiac disease, which is what I have. I unfortunately cannot eat that stuff (okay, I don't actually think it's unfortunate, but I'm trying to be nice because they're trying to be helpful).

5. Doesn't all grain have some kind of gluten in it? Why do you eat corn and rice? (Variation: Why are you eating carbs? I thought you were on a low carb diet.)
It's true that all grains have storage proteins that are generically called "gluten", but experiments have shown that it's the specific glutens in wheat, barley, rye (and maybe oats for some people) that affect people with celiac disease. And it's not carbs that are the problem, it's gluten. Interestingly, when I was a vegetarian, people would freak out when I was eating peanut butter or legumes because they thought being a vegetarian meant you couldn't eat any protein. (I was a vegetarian for 6 years or so, mainly because I thought meat and eggs and dairy were what was making me so sick, and it did make me feel a bit better because most of what I ate just coincidentally didn't have gluten in it - at least until I got to college and all there was to eat was iceberg lettuce and pasta and I got so anemic that I tried to donate blood and the lady checking my iron got this horrified look on her face and told me I should go see a doctor. So I eventually stopped being a vegetarian.)

6. Why can't you eat just a little bit? Surely a little bit won't hurt you! Can't you just cheat? (Or can't you just pick the croutons off the salad/eat the pie filling and not the crust?)
It will. Really, no one wishes more than me that I could just pick the croutons off the salad like a normal person or take a day off and eat a croissant, but it has the potential to make me really sick. And it's the kind of really sick that takes a long to get back to normal afterwards.

7. Do you worry about cross-contamination?
Yes and no. There are certain brands and restaurants that I really trust even though they have to have cross-contamination disclaimers (and I'm not going to name names right now, because that's a decision people have to make for themselves and I don't want anyone thinking a place is absolutely safe because I mentioned it on here). But I won't eat things that have crumbs all over them or pick the filling out of the pie or anything like that. I have a certain level of risk that I have decided I'm comfortable with. I could decide that I'm not eating anything unless it came out of my own kitchen, but I choose to go out and take risks sometimes. I'm careful, but it's always a risk. Will I get sick from eating out? I have (ended up in the ER once, although there's a chance that it was food poisoning and not gluten), and probably will again. But it doesn't happen often, and it would probably happen even if I was more paranoid than I am. I talk to waiters and if I feel like a place is unsafe to eat at, I don't eat anything.

8. I think I might have celiac disease! What should I do?
You should see your doctor and get tested. Don't just stop eating gluten and see if you feel better. The problem with that is that a lot of people feel better when they stop eating gluten. Not because a gluten free diet is inherently healthier for everyone, but a lot of the junk food you were eating before is off-limits and the gluten free versions are expensive and taste like cardboard, at least at first (you do eventually forget what the real stuff tastes like and things like gluten free doorstops bagels become a fun novelty). But a lot of people stop eating gluten, and then instead of Lucky Charms for breakfast, they're having fruit and yogurt. Instead of grabbing a 2-week old sandwich out of a vending machine for lunch, they bring a salad from home. You get the idea. So of course a lot of people feel better. But you don't know if you've actually solved the problem or not. There was a woman in a Facebook group I was on who thought she might have celiac disease and just stopped eating gluten, and she felt sort of better but not really, and started to get sicker and sicker and eventually found out that what she actually had was a hiatus hernia - after about 18 months of wondering whether or not the gluten free diet had solved her problem. It's a lot faster and easier to just get tested. It's a simple blood test, and if that's positive, you have an endoscopy to confirm it (basically they stick a camera down into your small intestine and take some biopsies to confirm that you have celiac disease).

9. Is getting an endoscopy as horrifying as I think it sounds?
Not even a little bit. You are sedated and you don't remember much, but your friend who drove you home afterwards will have a great story to tell about how stoned you were.

About Me

I was diagnosed with celiac disease in 2008. I was sick for nearly 20 years, but no one could figure out what was wrong with me so I think most people eventually decided I was faking it. But in fall of 2008, I went to a new doctor because I was just tired and sick all of the time, and it seemed to have been getting worse, and I had a history of hypothyroidism and iron-deficiency anemia. She did some blood tests, and found out that my iron levels were very low. After putting me on increasing levels of iron supplements and seeing my levels just keep dropping (at one point I was taking 900 mg of ferrous sulfate a day - that's a lot!), she knew something else was going on and tested me for celiac disease. Mystery solved! That sounds somewhat anti-climactic, but it really changed my whole life. I had been sick for so long that I didn't even really know how sick I was. It's hard to describe if you haven't been through it, but things that I thought were just normal because they had been that way for as long as I could remember (having stomach cramps all the time, not being able to sleep, being anxious all the time, going to the bathroom 6-8 times a day) suddenly changed. It really was incredible.

I was also able to lose weight for the first time ever. The stereotypical person with celiac disease is skinny and can't gain weight, but I had the opposite problem. Even though I didn't eat very much, I was really overweight. I figured it was just because of my thyroid problem. But turns out it wasn't. I was at my heaviest weight when I was diagnosed with celiac disease, and I've lost quite a bit of weight since then and I'm still losing. Lately the number on the scale has leveled off a bit because I've been doing some strength training, but my pants still keep getting smaller. Most of my recipes are pretty healthy and contain a lot of vegetables (but there will be some deserts, because we all get asked to bring desert to a potluck from time to time and you want to bring something you can eat!). I'm not a vegetarian, but I eat like one sometimes. And most of my recipes will be dairy free or have a dairy free option because I'm slightly lactose intolerant and so I limit my intake of dairy products. It is important to get enough calcium in your diet if you have celiac disease because you're at an increased risk of osteoporosis from the years of malabsorption you've probably had, but there are lots of non-dairy sources of calcium. By the way, if you do have celiac disease, it's very important to see a dietician so that you know what you can and can't eat and to make sure you're including sources of all the nutrients you need in your diet!

Aside from cooking gluten free food, I enjoy knitting, crocheting, reading, writing, swimming, running/walking, yoga, playing the violin, drawing with pastels, and dancing. I'm pretty good at some of those things and not-so-good at others, but I have fun with all of them. I'm starting medical school in a few weeks and I have a PhD in astronomy.