On the heels of Cindy’s blog post last week about the rise of Celiac disease, today’s blog entry is from guest writer Alison Clancy, Social Media Manager here at Oldways.  In addition to today’s blog, you can follow her regularly on Twitter and on our Oldways Table blog.

Celiac Disease Increases Sharply

– The Washington Post

A Rise in Celiac Disease – The Boston Globe

Celiac Disease Becoming More Common – The New York Times

Unless you’ve been living underneath a rock for the last few weeks, I’m sure that you have noticed the multitude of grim headlines concerning the increase in celiac disease around the world. However, if you actually have been stranded on an island somewhere or your hobby is collecting rock samples on the moon, I’ll let Tara Parker-Pope from The New York Times catch you up to speed:

Celiac disease, a serious immune system reaction to the protein in wheat and other grains, is far more common today than it was 50 years ago, a new study shows. People who have celiac disease can’t tolerate gluten, a protein found in wheat, rye or barley. Life with celiac is difficult because gluten is found in many medications and processed foods. When gluten is consumed, the body’s immune system damages the small intestine and nutrients can’t be absorbed. Of the blood samples collected 50 years ago, only 0.2 percent had celiac disease. In the more recent blood samples, the incidence of celiac disease was more than four times greater. Today, it’s estimated that about one in 100 people have celiac disease.

Armed with this evidence, I decided to bite the bullet a few weeks ago and schedule an appointment to be tested for celiac disease.

I have always had stomach problems. To say it’s “sensitive” is a massive understatement. Ice cream would lead to hours in the bathroom. Spicy foods would force my stomach to go on lockdown. Large amounts of meat would cause bloating and incredible feelings of discomfort. Soon, I was scared to eat anything fancier then a few crackers (possibly with strawberry jam, but only if I was feeling confident that day).

Middle school was the worst (and not just because I was overweight with outrageous red hair and braces). This is when I was first taken to the doctor for the raging war taking place in my belly. He quickly diagnosed me with Irritable Bowel Syndrome (without any real testing), and the cure? “Well, you know what’s good for you and what’s not.” That was it. I must have looked disappointed, because he hastily added, “Maybe stop drinking caffeine.” I didn’t drink coffee at age 12.

Ever since my teens, things in that region have settled down considerably and I’ve found ways to deal with it. I’ve traveled the world and ate things like crocodile and kangaroo, and survived it all (sometimes barely). Still, the dulled pain I would feel after dinner was always a reminder that my middle section just wasn’t quite right.

When I started working for Oldways, I heard the foreign terms “gluten” and “celiac” thrown around a lot on account of the Whole Grains Council, and I started to pay attention. Bloating? Stomach pain? Discomfort? Check, check, check. When I heard that celiac disease was usually misdiagnosed as IBS, I knew I had to make the call.

First of all, my doctor’s receptionist had to repeat the word “celiac” four times before she finally realized that I hadn’t created my own vocabulary word, and then she put me on hold to ask someone else what I was actually talking about.  Then she had to call me BACK after talking to my doctor. It was like I called her and asked for a test to determine if I was a leprechaun or not.

I’ve had the same doctor all my life, so I felt a huge wave of deja-vu when he stepped into the white room with his clipboard and asked me, “So, you’ve got some stomach problems huh?” I felt like saying, “Why yes, SINCE SIXTH GRADE.” I had read on the National Foundation for Celiac Awareness website to create a list of all my symptoms, of which I gave to him right away. I highly suggest to anyone getting tested to do this, it makes it easier for the doctor to get the whole picture.

After firing off a myriad of fun questions at me that included everything from “How do you respond to dairy?” to “Do you have bowel movements on a daily basis?” he decided that I was a perfect candidate for celiac. I was promptly sent down to the lab for blood-work, and it was over in just a few minutes.

Two weeks later, I just got my letter in the mail that had “NEGATIVE FOR CELIAC DISEASE!!!” scribbled in capital letters and emphasized with exactly three exclamation points. I am both relieved and disappointed. Relieved that I don’t have to change my entire relationship to food (goodbye bagels, I knew ye well) but disappointed that I still don’t know what’s wrong with me.

If you get anything out of this post, it’s this: if you have ANY kind of concern that you may have celiac disease, get the test done. It takes 15 minutes of relatively little pain and it’s better to know then to be left in the dark. If you have any questions about the testing process, feel free to email me at aclancy@oldwayspt.org.