Celiac Disease, The Silent Stalker

Celiac disease is the world's most common genetic auto-immune disease. It is ten times more prevalent than Type-1 diabetes, yet 97% of those with celiac disease have yet to be diagnosed. While symptoms can sometimes be vague, ranging from none at all to everything from fatigue to gastrointestinal issues to joint pain, it is important that physicians have celiac disease on their radar so that the millions of Americans with the disease can be properly screened and diagnosed.

Left untreated, celiac disease can lead to many serious complications including osteoporosis, thyroid disease and cancer. The disease is triggered by the ingestion of gluten--a protein found in wheat, barley and rye. At this time, the only treatment for celiac disease is strict life-long adherence to a gluten-free diet. But there is hope--our research team is leading the way to a cure.

Let's go back a sec. Medical schools have traditionally spent little time teaching about or studying the disease, because it was commonly thought that doctors might never run into it in the entire course of their careers. Add to that the fact that there are so many symptoms of celiac disease and yet someone can be totally asymptomatic. That makes it pretty tricky. So, what is the Celiac Disease Center doing to bring the medical profession up to speed on celiac and the importance of catching it before the patient suffers unnecessarily and it potentially turns into something worse?

We are working hard to re-educate doctors, nurse practitioners and dietitians about celiac disease. In fact, we offer the nation's only Preceptorship Program in Celiac Disease--a two-day intensive, hands-on course with our experts. It is an immersion in the disease complete with lectures, interactive case discussion and time with patients in clinic. Additionally, we exhibit at and participate in industry conferences and our experts travel the globe speaking to medical professionals about celiac disease.

Further, in 2013, our Center will host the 15th International Symposium on Celiac Disease.

Sounds good. You're obviously out in front on this. The logical follow-up question is based on your statement that fully 97% of all cases of celiac are undiagnosed. What is the Celiac Disease Center doing to remedy the lack of awareness of the general public?

We are constantly working to raise awareness in both the professional community as well as with the general public. We do this through many channels including, but not limited to, speaking engagements, community outreach to support groups and others, annual free blood screenings, accurate reliable information on our website, corporate partnerships, public service announcements, public relations, advertising, media interviews and fundraisers.

It's time to get down to the nitty-gritty. What's involved in determining if someone has celiac disease? And how do you convince someone who may have absolutely no symptoms - and, in fact, feels great - that it might be worthwhile to be tested? Many people subscribe to the theory, "if it's not broke, don't fix it."

For most people, screening is a simple blood test that can be ordered by any physician. Our website has great factsheets describing the tests and/or process in great detail. (Please see the factsheets at our website.) Basically, if the antibody blood test comes back positive, then a biopsy of the small intestine is needed for diagnosis.

Nearly 1/3 of Americans carry the gene for celiac disease, but only 5% of that population will ever develop the disease. The prevalence in first-degree relatives of a biopsy-diagnosed person is greatly increased, however. Therefore, anyone with symptoms should be tested. But first-degree relatives (with the genetic predisposition) should be screened every two-three years regardless of symptoms, and of course, immediately screened if they do have symptoms.

Untreated, regardless of symptoms celiac disease leads to serious complications, like thyroid disease, osteoporosis and cancer.

There's also a revealing statistic about the benefit of diagnosing celiac sooner rather than later. Can you share that with our readers, Carol?

Studies have shown that left untreated, regardless of symptoms, celiac disease causes a substantially higher mortality rate.

It is true that the longer it goes untreated, the more damage is done, so it is bet to catch it early. The good news about catching celiac disease is that once treatment is started the body begins to heal immediately. Many people don't realize how badly they felt until they start to feel good.

Here's what I was getting at, Carol. Let's look at some numbers from your website:

Research shows that children diagnosed before the age of four reduce their risk of developing additional autoimmune disorders. This advantage is tremendous, as children who are diagnosed between the ages of 4 and 12 have a 17% risk; from 12-20 years of age the risk goes up to 27% and an individual diagnosed above the age of 20 has a 34% chance of developing another autoimmune disorder.

and

Alaska, Delaware, Washington DC, Hawaii, Idaho, Maine, Montana, Nebraska, New Hampshire, New Mexico, North Dakota, Rhode Island, South Dakota, Utah and Vermont all have populations that are less than the number of people living with celiac disease in the United States.

That's pretty powerful. Or, how about this one, comparing the numbers of the [roughly three million] Americans with celiac with those suffering from other, more familiar, chronic illnesses?

Epilepsy affects 2.7 million
Cystic Fibrosis affects 30,000 people
17,000 people are living with hemophilia
Parkinson's disease affects 1,000,000 individuals
Ulcerative colitis affects 500,000 people
Crohn's disease affects 500,000
2.1 million are living with rheumatoid arthritis
Lupus affects 1.5 million people
Multiple sclerosis affects 400,000

This last set of figures clearly demonstrates that although celiac is not a disease that many people are familiar with, it does affect an awful lot of us. How did you become interested in celiac and consciousness-raising about it in the first place, Carol?

I was diagnosed with the disease about eight years ago, after nearly 10 years of misdiagnosis and actively trying to find out what was wrong with me.

The stars aligned as I was interested in leaving the private sector for the nonprofit world. And, as luck would have it, The University of Chicago was looking for a new director. Timing? Fate? Destiny? I don't know, but it has turned in to a very successful and fulfilling endeavor.

Can we talk more about your own story? How did you know something was wrong? What was it like stumbling from doctor to doctor with no relief?

I was actively seeking a diagnosis for more than 10 years. I had lots of GI symptoms, but what finally got me was the joint pain. I was very active--runner, tennis player, etc.-- but couldn't bend my knees one day. I was told it must be a strange virus or hepatitis; all the tests were negative. I was told my job was too stressful and that I should quit and move to the Bahamas. Too bad that wasn't an option! I saw countless doctors, even homeopathic doctors. No one could give me a clear answer.