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Do I Have Celiac Disease?

July 13, 2009

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Celiac Disease Increases SharplyThe Washington Post

A Rise in Celiac DiseaseThe Boston Globe

Celiac Disease Becoming More CommonThe 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.

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 epic 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. I was promptly sent down to the lab for blood-work, and it was over in just a few minutes.

Two weeks later, I got my letter in the mail that had “NEGATIVE FOR CELIAC DISEASE!!!” scribbled in capital letters and emphasized with exactly three exclamation points. Honestly, 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.

– Alison

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9 Comments leave one →
  1. July 14, 2009 1:49 am

    I’ve always wondered how much the celiac blood test costs. Care to share?

    [Medical prices usually have two components: what is charged, and what is actually paid by the consumer or insurance company.]

  2. July 15, 2009 3:00 pm

    Just because you have a negative blood test does not mean you don’t have celiac. The gold standard is the endoscope, by an experienced doc looking for lower intestinal damage. Keep eating gluten and get one done…then try experimenting with a gf diet to see if it helps. Reading your article, I thought “I could have written that!” and then you say you don’t have celiac…I was surprised. I swear by the GF diet – huge difference in my life.

  3. September 2, 2009 1:19 am

    My Celiac test came out negative as well, but going on a gluten-free diet has been the best thing that has ever happened to me. I wrote about the experience on my blog http://thedailydietribe.blogspot.com, but basically it cured me of the depression I’d been dealing with for 2 years. I don’t think it’s the cure for everything, but even my doctor told me to ignore the test because it isn’t that accurate. I say do a little experimenting and see how you feel if you don’t eat gluten. (I know this is an old post, so maybe you’ve already done this by now)

  4. James Bower permalink
    September 7, 2009 10:22 pm

    Great blog, reading it through RSS feed as well

  5. Mieke permalink
    September 18, 2009 1:52 am

    Hi I have been having stomach issues for the past year. I have recently had a colonocospy and endoscopy and the gastro doctor has ruled out any diseases (he was specifically looking for celiac) so I have no dignasosis — so what’s wrong with me? Does anyone have any ideas or can you suggest some things to try. The doctor suggested a food journal and then get back with my GP. I am so frustrated

  6. December 2, 2009 5:11 pm

    Hi Folks,
    I struggled with stomach issues for about 6 months, and went through a battery of tests: celiac blood tests, endoscopy, barium swallow, ultrasound – all negative for any disease. Turns out, anxiety had an enormous role to play. My recommendation for anyone who stuffers with “undiagnosed/unknown” stomach issues and may also be experiencing stress or anxiety is to include counseling along with tests/medical therapy. In the end, counseling plus exercise have helped curb my problems. Exercise is key because it helps metabolize (and get rid of) the stress hormones produced during anxiety (these are my doctor’s words). Best of luck for some resolution and relief to all of you who are suffering.

    • December 2, 2009 7:13 pm

      Thanks so much for the comment H.! I would like to chime in and agree that frequent exercise definitely has had a positive effect on my stomach problems, and I would tell most people to get involved in some kind of fitness routine.

      – Alison

  7. C MacDonald permalink
    February 24, 2010 9:30 pm

    I just had a celiac blood test done and at the clinic I used in Ontario, it was $60

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  1. The Great Gluten (Free) Experiment « The Oldways Table

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