Ask the Doc: Celiac Facts from Alessio Fasano, MD

By Tiffany Janes, Delight Contributor

Many people credit Alessio Fasano, MD, with starting the celiac revolution in the United States. Fasano’s career began in his homeland of Italy, but he eventually made the move to The University of Maryland, where he currently heads up the Center for Celiac Research. The world renowned doctor took time out of his busy schedule to share some of the latest information about celiac disease, including possible treatments on the horizon. We are excited to be able to share Dr. Fasano’s take on several important issues with our readers.

DGF: Dr. Fasano, your career in Italy focused on celiac disease research, but when you came to the U.S., you were planning to change courses and work on other gastroenterology conditions. Why did you decide to stay on the same path and continue your celiac research when you arrived in the U.S.?

AF: I was absolutely not planning on working in the field of celiac disease when I arrived in the U.S., but when months and months passed without one celiac patient ever coming through my door; I started to wonder what was happening with the celiac population here. Americans basically have the same genes as Europeans do and they also eat a diet that includes gluten. Those are the two factors you need in order to see the condition in a population. In 1996, I published a research paper entitled “Where have all the American celiacs gone?” which marked my return to the study of celiac disease. Either people with celiac in America were wildly underdiagnosed or there were not many of them with the condition here. In any case, it would be interesting to find out what the truth was.

DGF: Your groundbreaking epidemiology study about the prevalence of celiac disease in the U.S. proved that 1 out of 133 people have the condition. More than 90% of those affected by celiac are not aware that they have it. Please explain what the "iceberg theory" is, in terms of the celiac population?

AF: Actually, that number comes from the combination of statistics for both adults and children. The number of adults affected by celiac in the U.S. was approximately 1 in every 105, when that study was completed in 2003. However, we now believe the number is still evolving. Not only did the diagnosis rates go up significantly in the last several years, the latest scientific research proves that the prevalence of the disease is also increasing. If we did the same extensive study today, odds are that the number of American affected by celiac disease would change again. For instance, it might be that as many as 1 in 90 adults in the U.S. are affected by the condition.

The iceberg theory is a reference to explain that presently, very few celiac patients have been correctly diagnosed. Even though an estimated 2.5 to 3 million people have the condition, only 150,000-190,000 of them are presently diagnosed. Those patients are the “tip of the iceberg” and everyone else is “under water”. Many undiagnosed patients have minimal symptoms or even none at all, making it very difficult for them to get tested and properly diagnosed.

DGF: In the U.S., we vaccinate against conditions that affect as few as 1 in 100,000 people. Since celiac disease affects such a large number of people, do you envision a celiac disease vaccination being a reality eventually and if so, what is your best estimate about when such a vaccine would be available worldwide?

AF: Based on current understanding of the immunological aspects of celiac disease, creating a vaccine for the condition looks very promising on paper and there is work being done in this area already. Such an advance would likely take 15 years or longer, depending on how the current economic crisis resolves itself. That work is dependent on research money and in times of economical distress, funding is not easy to come by. Therefore, there is no clear cut answer about when a vaccine for the condition might be available worldwide.

DGF: Safe gluten-free oats can be an important part of the gluten-free diet, considering how healthy oats are in general. Can you please explain why some people with celiac disease can not tolerate pure, uncontaminated gluten-free oats?

AF: Based on studies about celiac disease patients and pure uncontaminated gluten-free oats, indications are that a large majority (around 93-95%) of patients can safely tolerate them. Unfortunately, there is no good way to detect which patients can safely consume gluten-free oats. In order to figure it out, patients need to follow the gluten-free diet strictly and monitor their antibody levels. Once their celiac symptoms have resolved and their celiac antibodies are at normal levels, they can try adding gluten-free oats (in small amounts) back to their diets. This is the only way to determine if gluten-free oats should be a part of their diet plan going forward. If a patient doesn’t have negative consequences from eating gluten-free oats, they fit into the large group of celiac patients that can safely consume them.

DGF: Currently, the only treatment for the celiac disease is strict adherence to the gluten-free diet. Obviously, the million dollar question is whether or not a therapeutic treatment for the condition will ever be a reality. Many people are looking for a "magic pill" that will allow them to take medication and order a gluten pizza – and eat anything else they want to. Do you believe that the drugs currently being tested to treat celiac will offer such a simple solution - or is it more likely that eventually there will be a cross contamination remedy that will allow people to eat out and travel more easily?

AF: Like the vaccine for celiac, celiac disease therapeutic treatment research is being affected by current economic conditions. Alba Therapeutics and Alvine have both been working on a treatment for celiac disease for a while. Currently, there are good indications that a cross contamination type pill will eventually be introduced. Such a medication would help patients protect themselves when eating out, traveling and otherwise eating foods that they didn’t prepare themselves.

This type of treatment could help people enjoy the social aspects of life, which is very important. Patient follow-up research shows that some people (especially adults) that strictly follow the gluten-free diet are still getting damage in the intestines. The most logical explanation for this is that food consumed outside their homes is causing the damage. Not everyone who consumes gluten inadvertently has outward symptoms so a cross contamination pill could be a helpful tool in managing the gluten-free diet. The verdict is still out on whether or not a “magic pill” that would allow patients to eat gluten containing foods, will ever be a reality.

Alessio Fasano, MD, co-authored the book “Fast Facts: Celiac Disease” with Geoffrey Holmes, M.D., Ph.D. Carlo Catassi, MD. Fasano also contributed to “Real Life with Celiac Disease: Troubleshooting and Thriving Gluten Free” by Melinda Dennis, MS, RD and Daniel Leffler, MD, MS. For more information about the Center for Celiac Research, visit www.celiaccenter.org.

5 comments (Add your own)

1. Matthew wrote:
I definitely can tleare to the notion of feeling fat after every meal before going gluten-free and being diagnosed with celiac. I basically equated bad food with feeling bad. I thought that you were suppose to feel awful when you ate a donut because donuts are bad for you Such a weird concept, but when you get accustomed to being sick for so long, those physical ailments start to become mental and you do feel down on yourself. So I can definitely tleare to having body image issues. Maybe there should be more articles written about that and not some poor girl at a party with another legitimate disease.

Thu, March 22, 2012 @ 8:21 PM

2. Kalea wrote:
I definitely can relate to the notion of feeling fat after every meal before going gluten-free and being diagnosed with celiac. I basically equated bad food with feeling bad. I thought that you were suppose to feel awful when you ate a donut because donuts are bad for you Such a weird concept, but when you get accustomed to being sick for so long, those physical ailments start to become mental and you do feel down on yourself. So I can definitely relate to having body image issues. Maybe there should be more articles written about that and not some poor girl at a party with another legitimate disease.

Thu, April 5, 2012 @ 11:43 PM

3. Lucy wrote:
Thanks for all the info. I was told 1 year ago and had many teeth problems as well as spine and all bones. My dentist is totally knowlegable of CD and helped me so very much that he was shocked at how much improvement in 8 months of taking care of teeth and bones. Thank God for everyone working together. My son and grandson just had biopsy today for CD. It is truly a scary thing.bj

Wed, April 18, 2012 @ 11:52 PM

4. Audel wrote:
Due to all this cramming, many mistakes are made, which sends out a signal to the IRS or the IRS. It also will be extraordinarily favorable if the barrister is also an accountant because he won t only be in a position to represent you and protect you before the IRS events, and in tax court, but he has also got a grasp of the complexities of the checking and accounting procedures that are employed during the IRS auditing process.

Thu, April 19, 2012 @ 10:43 PM

5. Karen Ingraham wrote:
I thought that Dr. Alessio Fassano was from the Center for Celiac Research and Treatment at MassGeneral Hospital for Children in Boston?

Fri, November 22, 2013 @ 9:38 AM

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