Celiac Awareness Study

Celiac Disease is one of the most under-diagnosed diseases in the world. We hear this all the time, but if you’re like me, you may not have taken the time to wonder why. You would think that a disease that effects 1 in 133 people would be more commonly known. It’s getting there- Through the efforts of CFCR and other awareness organizations, Celiac is being talked about more than ever before.

Something else I never thought of is how we got this far. It seems that Celiac was virtually unknown a few years ago, and now it is even in the news. Awareness, diagnoses and research have to start somewhere, and I have been reading a study that CFCR did between 2002 and 2004 that definitely seems like the beginning of the change.

Honestly, I laughed a bit when I read the subject of the study. The goal was to find out if Celiac Disease would be diagnosed more often if doctors knew how and why to screen for it. The common thought was that if physicians were aware that Celiac exists, then they would be able to point it out in patients. Yep, my first reaction was, “Duh?!”

It seemed like an obvious conclusion to me, but I am not a Celiac researcher (Good thing, too, as you’ll see.). The more I read and discussed the study, the more I understood the purpose of it. Doctors didn’t just need to be aware of Celiac Disease, they needed to have a clear idea of what signs and symptoms to look out for. This study covered all the bases. The study was very wide spread. There were many participating clinics and doctors, which helped to get better results. Here’s how it worked:

When patients arrived at a participating clinic, they were greeted at the desk and asked if they wanted to be involved in the study. Those that did want to participate were given a questionnaire to fill out that would determine if they had the risk factors for Celiac Disease. The patients that had the risk factors were then given information about Celiac Disease and offered free testing.

There were a lot of risk factors listed on the questionnaire, and most of them are pretty familiar sounding:

• Bloating ~ Chronic Fatigue ~ IBS ~ Constipation ~ Recurrent Abdominal Pain ~ Thyroid Disease ~ Iron Deficiency ~ Chronic Diarrhea ~ Osteoporosis ~ Anemia ~ Rheumatoid Arthritis ~ Family History of Celiac Disease ~ Type 1 Diabetes ~ Psoriasis ~ Other Autoimmune Diseases ~ Weight Loss ~ Neurological Disorders

When all of the information and permissions were given, 976 people were enrolled in the study and began screenings. First was the blood test, to count for tTG-IgA. 30 people had elevated levels and continued to the next round of screening. When all was said and done, 22 people were diagnosed with Celiac Disease.

By looking at the diagnosed patients, the study showed which symptoms seemed to be the most common with a Celiac diagnosis. These patients complained most of bloating, thyroid disease, IBS, chronic diarrhea, chronic fatigue and constipation. Knowing this, doctors are better able to identify the signs to watch for.

A diagnoses of Celiac Disease in only 22 out of the 2,568 people who originally interviewed for the study seems like such a tiny number. It even seems small next to the 976 people who qualified for screening- But let me introduce some more numbers that make 22 look pretty big.

In the year before the study, there had only been 15 diagnosed cases of Celiac in the participating clinics. Those 15 people came out of a total patient load of 54, 988 people! Now, I’m not a math major, but that seems to be quite a difference.

So, what (besides a lot of numbers) does this study tell us? It tells us that the higher the awareness is for Celiac Disease is, the more people there are that will be diagnosed. It also tells us that awareness has to go far beyond just knowing that the disease exists. There are so many symptoms that are shared by other conditions that doctors have to know exactly what to look for as well.

Since the study, CFCR has been using this information to make sure that doctors receive the training necessary to recognize Celiac when they see it. They are working on implementing screening procedures that will give doctors a better idea of what to test for. This is badly needed because, even though there are a lot of cases of Celiac out there, it is too expensive to test everyone.