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.

What Happens When Caitlin Gets Sick

I don't mind telling you lovely people that I am a whiny sick person.

It makes me cringe now, but when I was younger being sick gave me the opportunity to get attention--which I craved after I had cancer and was the center of a whole lot of attention--and to this day I'm still pretty childish about it.

What's funny about this is that when I'm being whiny I start to second-guess myself and become convinced that I'm making it all up for attention.  After I got tested for celiac disease, even when I had the diagnosis in my hand, I told my husband with total confidence that I probably didn't actually have celiac disease, that they made a mistake and that I caused my own intestine to damage itself with my mind.  I figured that if hysterical pregnancy is a thing, then so is hysterical celiac disease.

Aaanyway earlier this week I felt pretty under the weather and by Wednesday my whole body ached.  My skin ached.  As a side note, has anyone else had that symptom before?  Where it hurts to have things touch your skin? I actually winced when I put a bra on and jumped when Rob walked by and rubbed my back.  Bizarre. I'm probably making it up.

Suffice it to say I felt pretty awful and spent the entire day in bed, working and watching Arrested Development episodes on Netflix.

20 miles to Lego Laaand!

Pictured: Most pathetic thing ever. And my tyrannosaurus wrists.

The upside of being sick and whiny was that my husband made me a delicious gluten-free chicken pot pie using this recipe. It won't win any awards for being healthy but damn, it was yummy and perfect for a sick day.

Today I'm feeling much better but my laryngitis is for some reason horrible so I sound like Lindsay on Arrested Development when she's hitting on Steve Holt (Heee thinks I'm cuuuute).  

In other sad news, No Shave November ended and my husband's positively majestic beard is gone.

Taken after I killed him for not having a beard anymore.

I hope you all have a wonderful weekend.  We're going to lay low and snuggle a lot.

Your Questions Answered Part VII: Dream Vacations, Regrets, Guilty Foods & Celiac

First order of business: Happiest of Birthdays to my husband, Rob, who turns 26 today!  Because he's on the wrong side of the 20s decade (and on the fast track to 30) this last week has been birthday week! I plan on sharing a post on all the fun things we've done once I'm done with these questions!

We're also having a party later tonight with his coworkers. I've never hosted a party so I'm pretty excited. :)

With that said, we're almost done with the questions!  These came from Holly and Elizabeth.

1) Is there any place that you always dreamed of visiting but haven't yet?
Rob and I really want to go to Ireland.  Rob promised me that we'd go at some point but we're holding off until he has a job and regular vacation time.  He may join a class next May that would entail a trip to Ireland and we're currently investigating whether or not I could ride along (perhaps as an extremely cheap photographer?).  If it doesn't happen in May we most certainly will go soon.

2) Where would be your dream place to live with Rob?
I honestly could live anywhere with Robbie.  But I like the idea of living in the Pacific Northwest or maybe in Colorado.  I also could see living in Maine for the rest of our lives.  As long as I'm with him we could live in Antarctica and I'd be happy. :)

3) Do you have any regrets in life so far?
I regret sometimes allowing anxiety to get the best of me and not being present in all of my experiences...particularly when Rob was in the Army.

4) What's your guilty pleasure when it comes to food?
Rob always says that if I lived alone I would probably eat like a four-year-old, and he's totally right.  I love sweet foods like brownies and cookies, plus Phish Food ice cream from Ben & Jerry's (thank god it's gluten-free).  I also eat cheese like it's my job.

5) How did you first discover that you had celiac disease?
For as long as I can remember I've had stomach issues, predominantly persistent gas and bowel problems (hey, you all like that my blog is honest, right?).  I've more or less lived with it, assuming that I had a lactose intolerance, and dammit I was not going to stop drinking milk and eating cheese.  My mother passed along an article to me early last year about how children survivors of Wilm's Tumor can have digestive issues later in life.  I mentioned it to my doctor, who told me that she would test me for a variety of ailments including celiac disease.  As soon as she said "celiac disease" I knew that was it because it was the only thing that made sense - my stomach pain happened without any logic and I knew that gluten was in everything.  Suffice it to say I received a not-so-surprising phone call from my doctor telling me the test was positive, and later I got a biopsy that was also positive.  After a pig-out meal at Ruby Tuesday's, I quit gluten for good and have been free of it for over a year.

Are you guys enjoying these question posts? I have a weird insecurity that everyone is super bored with them.

Your Questions Answered Part III: Disease, Middle School & Dream Jobs

I'm going to skip my Things I Love Thursday post this week.  Haven't found enough fun things on the interwebs and I'm liking this whole question answering thing. I beg your forgiveness, loyal readers.

Today's questions come from Sara Bell.

1. Why are you gluten-free? Do you have Celiac Disease?

I am indeed the proud owner of a faulty immune system and a faulty upper intestine.  I was diagnosed with celiac disease in June of 2010, just weeks shy of our wedding.  Luckily our wedding was already pretty gluten-free (we had a baked potato bar!), but it was still an adjustment.  Rob has been an absolute blessing throughout the whole obnoxious process.

2. What band did you usually listen to when you locked yourself in your room in middle school? (Obviously you thought your life was insanely hard and did this because so did I, and everyone I know)

What a great question! In 5th and 6th grade I was positively obsessed with the Beatles.  Like in a really creepy, obnoxious, attention-getting way.  I wanted everyone to know how much I liked the Beatles.  I even sort of looked like John Lennon at one point (don't ask).  In 7th and 8th grade I grew more into an obnoxious poseur and started listening to a lot of the hits of the day, such as Nelly, Eminem, Limp Bizkit, and, of course, N'Sync and the Backstreet Boys.  I am not particularly proud of this period in my musical history, as you can probably imagine.

3. What is your dream job?

Another great question.  I used to think I'd like to be a veterinarian, but now I think I would love to be a comedy writer on a television show.  Preferably with Tina Fey please.  I doubt I'm funny or witty enough so for now it's just a dream, but a fun one regardless. I think I would also enjoy just writing in general, as long as I could maintain some level of creativity.