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November 24, 2008

For those of you who don’t know, “Celiac disease is an autoimmune digestive disease that damages the villi of the small intestine and interferes with absorption of nutrients from food” ( Basically this means that when a person with Celiac Disease ingests a protein called gluten, their immune system responds by damaging the hair-like appendages in the small intestine that are responsible for absorbing nutrients. This can lead to all sorts of problems, including malnourishment, osteoporosis, birth defects, miscarriage, stunted growth, seizures, and cancer. The symptoms of Celiac disease are many and varied and can range from bloating, diarrhea, and weight loss to migraines, depression, and fatigue. Some people have no symptoms at all.

The only treatment for Celiac disease is to completely eliminate gluten (a protein found in wheat, barley, rye, and to a lesser extent oats) from the diet. Because there is no cure for Celiac, eliminating gluten is a lifelong requirement.

Once thought to be rare, Celiac disease is now known to affect roughly 1 in 133 Americans; however, only about 1 in 5000 Americans are diagnosed. That means that 97% of Americans with Celiac disease remain undiagnosed. This is largely due to the fact that the symptoms of the disease mimic so many other more common problems that doctors don’t test for it. For example, many cases of Celiac disease (CD) are misdiagnosed as IBS (irritable bowel syndrome). From the time that I began having symptoms to the date that I got diagnosed with the disease was about 7 years (and several doctors).

In mid July, I went on a business trip to California for job training. It just so happened that the training was located in an area where much of my family lives, so I stayed with my grandparents rather than in a hotel. At about 5:00am (7:00am Austin time) on the morning of July 16, 2008, I received a phone call from my gastroenterologist informing me that I tested positive for Celiac Sprue. In other words, I have Celiac disease. That moment changed my life forever.

At first I was in shock, but very quickly, that turned into tears as I talked to my mother on the phone. This wasn’t supposed to happen. Testing for this disease was supposed to be a precaution only. It was a worst case scenario – and there were a bunch of scenarios. There was no way I was actually going to have Celiac disease. After all, nobody else in my family has it, and it’s hereditary. (Actually, that’s only partially true. The predisposition to get Celiac disease is hereditary, but the disease itself requires a triggering event.) So how on earth could this be happening to me? There’s no answer to that question. It’s just life.

For the first month or two after I got diagnosed, I managed to stay fairly positive. I did tons of research, tried lots of new foods, and attempted to figure out which restaurants were safe for me to eat at. I learned that I’m not lactose intolerant (a common condition for Celiacs when they first get diagnosed – tends to go away as the intestine heals), and I stayed focused on what I could eat rather than what I couldn’t.

The last couple of months, however, have been tougher. It’s like the novelty of everything wore off and I’m left with the harsh reality of a super restricted diet. On the one hand, I’m finding more things that I like every day, but on the other, I continue to learn that foods that I thought were safe actually aren’t. The more I eat out, the more difficult it becomes for me to trust my food because despite my best efforts, I continue to have problems with cross contamination. I’m getting better at asking the right questions, but that leads to more and more places that I have to cross off of my “safe” list. In addition, I have to be the obnoxious girl who forces everybody to eat at expensive restaurants when they’d rather just go someplace quick and cheap. I feel terrible, but my only other option is to not eat out at all.

One of the hardest things I’ve had to deal with – and this is never going to change – is the fact that people forget. I can’t blame them. It’s not their job to remember that I can’t eat gluten. It’s my job and mine alone. But it still sucks. Somebody will try to make a nice gesture by offering me some delicious looking cookies, and I’ll have to politely remind them that I can’t eat those cookies. It ends up being awkward for both parties. They feel bad for forgetting, and I have to deal with bringing it up once again – not to mention avoiding the snack that I would so love to try. It’s just a very frustrating situation.

So anyway, I’ve created this blog as a place to post my thoughts and feelings as I do my best to cope with having Celiac disease. I’m hoping that by writing these things down, I can get them out of my head and for once think about something other than this disease. We’ll see how it goes…

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