Recently I went to Washington D.C. to attend a Celiac Advocacy Conference and to visit the Children's National Hospitals Celiac Program.
At the Celiac Disease Foundation Patient Advocacy Summit, I heard from a wide variety of speakers and experts about what is going on in the celiac world. We heard from drug developers, gastroenterologists, and researchers to gain a complete understanding of what is happening in the world of celiac research and testing. Although I had to fly to D.C. for this conference, soon you will be able access all of the materials online!
As a result of the conference, I am now armed with all the materials I need to talk to my local congress members and spread awareness about celiac disease.
Here is a summary of what I learned:
1. Drug Development
Right now, there are drugs that are in their final stages of testing that will not cure celiac, but they will lower sensitivity and minimize the risks associated with cross-contamination. The product is likely to be in the form of a powder that you can pour into a drink. A future goal for drug developers is a vaccine that can not only prevent celiac, but also help currently diagnosed celiacs.
2. Research
Presently, researchers are examining environmental risk factors that contribute to the development of celiac disease. These are things like the season of birth or age of introduction to gluten-containing foods. Celiac researchers are tapping into well-funded gastrointestinal disease studies and seeing if there are similar environmental risks factors.
3. Diagnosis Rates
Most experts agree that celiac is a grossly undiagnosed and misdiagnosed disease. Celiac can be diagnosed as IBS or a multitude of other gastrointestinal disorders. A further complication is that for adults, some of the symptoms are not recognized as common gastrointestinal issues. These are things like tingling extremities, headaches, and anemia (iron-deficiency).