In the line at Whole Foods I saw the newest edition of Gluten-Free Living magazine and decided that I should catch up on the newest happenings. One of the articles really interested me. The writer interviewed Dr. Fasano, director of the Center for Celiac Research at the University of Maryland School or Medicine about the future of the disease. I chose some of the questions and answers below to highlight:
Q: In our last in-dept interview in 2003, we talked about a cure for celiac disease. Are we any closer now?
A: Seven years ago a cure was just a theoretical discussion. There has been a steady increase in research, especially since 2005. In 2003, we knew it was technically possible. In 2010 there are 35 projects completed or in the pipeline related to the diagnosis, treatment or prevention of the disease
Are we close to a cure or treatment? We are much closer than we were when we discussed the first time. Now we see steps that are really possible. Keep in mind that whenever you talk about development of a tool, like a drug, you are talking about 10 to 15 years of study and close to a billion dollars. So it takes time and a tremendous amount of resources.
Q: Has more of the change we've seen with celiac disease since 2003 occurred in the gluten-free marketplace than the medical world?
A: Everyone who has experienced the changes in the marketplace is really benefiting from the changes in the medical world. Those who are newer to gluten-free may not be aware of what the medical world was, say, five years ago. The awareness of celiac disease was so low, it took a long time to be diagnosed, and even when you were diagnosed, you knew more than your physician. When you know this, you realize there has been a tremendous change int he medical arena. People are benefiting from the efforts of the centers and others to increase awareness.
We went from a situation where celiac disease was completely neglected to a point where the Centers for Disease Control considers celiac disease a public health threat because it is unique in that so many are not diagnosed. With type 1 diabetes and multiple sclerosis, there is no way you will have symptoms and not be diagnosed. Not with celiac disease. Ninety-plus percent of the people with the disease are not diagnosed. They consume the heath care system.
So now celiac disease is a topic of discussion at the National Institutes of Health, the FDA and the CDC. It's remarkable. If you are new you might think it was always like this. All you know is you don't have to go to a special store for food. You can go to Safeway or Giant and find gluten-free products.
Q: What about eliminating the need for the biopsy to diagnose celiac disease?
A: Confirming the diagnosis to a rigid set of rules, which, by the way, I contributed to wrongly, does not reflect the real gluten world out there. We know there are clinical cases of celiac disease in which not all the criteria are there. We published a paper that said let's be a little more flexible. Let's set five major criteria and say you have to fulfill any four of the five:
1. You have to have symptoms we know are related to celiac disease - diarrhea, anemia, whatever
2. You have to have the autoantibodies we use for diagnosis - anti-tissue transglutaminase and antiendomysial antibodies
3. You have to have HLA-DQ2 and/or HLA-DQ8
4. The biopsy shows damage
5. Your symptoms have to resolve when you go on a gluten-free diet
In this formula, if you have symptoms, the autoantibodies, the HLA genes and symptoms that go away, you can avoid the biopsy.
If you don't have the genes then you fulfill 3 of the 5 and it's not enough. If you don't have the genes, you have to have the biopsy. If the biopsy does not show the damage, then you don't fulfill the criteria. So the genes are no longer necessary. It is rare, but 2 to 3 percent of the people who are diagnosed with CD are HLA-DQ2/DQ8 negative. In these cases, the biopsy would be essential.
Final Q: Will there ever be a test that can diagnose celiac disease in patients who have already put themselves on a gluten-free diet?
A: No. When people give up gluten, they don't give their physician the tools to identify which part of the spectrum they are on, meaning do they have celiac disease or are they gluten sensitive? One thing that is not changed, and will never change in my opinion, is that you need to understand which part of the spectrum you are in before you try the diet. You can't treat the disease before the diagnosis, in my humble opinion.
Some other quick facts:
- Recent study found a doubling of celiac disease every 15 years since 1974
- A final definition from the FDA on what "gluten-free" really means on packaging should be complete by the end of this year
- The new generation of chefs think gluten-free is a challenge and they do not accept that the food cannot taste the same
- The $1.7 billion gluten-free market now grows 20% per year
- 60 million buy gluten-free products but only 200,000 in America are clinically diagnosed with CD
No comments:
Post a Comment