Friday, January 25, 2008

Dr. Fesano comes to Atlanta!

Somehow, through a strange twist of fate, the Atlanta Metro Celiacs support group booked Dr. Allesio Fesano to speak at the 2008 kick off meeting. The meeting was last Saturday and snow was expected mid morning which usually means no one, and I really mean no one that isn't on their way to work, leaves their home. Too dangerous driving in bad weather and all! Well in all fairness I should mention that we Atlantans, for the most part do not know how to drive in the snow or ice, so the fact that most of us stay home during the rare snow or ice storm is actually a very good thing. I could barely believe I was going to get to see the esteemed Dr. speak and maybe even meet him briefly....what a treat for our group!

I got up early on Saturday and checked the weather/traffic/roads, and to make sure the meeting was not cancelled. For all I knew flight delays and cancellations could have kept Dr. Fesano from even arriving the night before. No blanket e-mail had been sent out indicating this happened so the show would go on. Thank goodness! The snow would not arrive until 11 am or so and we'd already be in the meeting by then. At least I could make it there - I'd worry about getting home when that time came. Nothing was going to keep me from getting to this meeting - period. I was concerned that no one else would show up and how horrible that would be....the auditorium seats several hundred and we surely should be able to fill it up with such a respected speaker - under normal weather conditions that is. Luckily I was not the only person excited to see Dr. Fesano in person. We had people driving in from others states for the event. With them and those in our group that made it, we did pretty much fill up the space. Yea!

Dr. Fesano has a lovely Italian accent (he's from Italy of course) and has a great sense of humor and was very entertaining to say the least. It's hard to think someone could make learning statistics about Celiac disease fun but Dr. Fesano did just that! He told of how he started his Celiac Center and why he did it - what type of specialists he got to staff and run it, etc. The bottom line was he knew we had a LOT of people in the US who had Celiac. Problem was that doctors here didn't know much, if anything, about Celiac so how could they be diagnosing it properly? Answer of course is they were not diagnosing it, almost at all. Dr. Fesano didn't think this was fair to us - those with Celiac whose lives could be greatly improved by going on the gluten free diet. And so his journey to prove how many Americans have Celiac began.

Fast forward to when the study about the prevalence of Celiac in the US is complete. Ok, so now we know that about 1/100 of us have Celiac. To date less than 10% that have it, know we have it. To say I consider myself one of the lucky ones that does, is quite an understatement. It's one of the greatest blessings of my life. Certainly Dr. Fesano deserves some credit for my own diagnosis. His work set the tone for doctors in the US to start testing for Celiac, even though we still have a long way to go, of course.

Dr. Fesano's insightful and informative talk was eye opening in several ways. It's likely that most of you already know the National Wheat Association has a powerful lobby in Washington but I never knew that was true about the Barley Growers of America...interesting, huh? Well regardless of their power, apparently they were no match for Dr. Fesano. It was his work and that of his center that led to the new labelling law requiring companies to list the word 'wheat' on food labels. He testified on Capitol Hill so often many Senators knew to turn the other way when they saw! So now when you see 'wheat' on a label, you can think of Dr. Fesano as you put it back on the shelf and find a gluten free version of the product.

Many of you are wondering about the magic Celiac pill. Yes it's still being developed by Alba Therapeutics but there might not ever be a day that you can just pop a pill and call Dominos Pizza. Only time will tell - it might be that medication can just reduce the effects of gluten which would greatly help those with severe reactions, so they could feel safer eating out and travelling. Most interesting to me was the fact that eventually there will be a vaccine for Celiac. This will only work for infants and is 15-20 away from being available. Still, it probably means that my niece and nephew that have the Celiac gene, will be able to keep their kids from ever developing Celiac - very good news indeed!

Another intriguing fact about Dr. Fesano's findings is that a current study that is not quite complete has a very good chance of proving that babies who are kept off gluten for a full year after birth might have a much lower risk of developing Celiac in the future. This is compared to infants that are given gluten at the normal age of six months. Certainly the study needs to be completed to be sure. But if it were me having a child, knowing I had the gene (or disease) myself, I'd certainly keep the baby off of gluten for an extra six months. It's not like that would harm the child in any way. You have nothing to lose and maybe a LOT to gain.

I could go on and on but neither of us have the time for that. The take away for me is that we all have Dr. Allessio Fesano to thank that the US medical community is finally getting educated on Celiac, for an improved Celiac panel test his center developed, and for the new label laws (current and on the horizon) that make all our lives easier. In the end, Dr. Fesano just wants us to have the quality of life we deserve. Just like the Ceiacs in most of Europe. I kept thinking throughout the talk that Dr. Fesano must have Celiac himself, or maybe his kids did, but apparently that is not the case. He's just a good guy - period. Oh and of course he's brilliant too! If every doctor was more like him we'd sure have a much better world in which to live. So thanks Dr. Fesano SOOO much - for coming to Atlanta and letting us know there is actually someone out there that cares about us. To learn more about Dr. Fesano's research and how you can help, click here.

In closing I'll leave you with this thought. If you can get a Big Mac in parts of Europe and Australia WITH a gluten free bun - for goodness sake - surely this is possible in the good 'ole USA. Remember to ask for what you want in life - even if it's just a burger with a bun!

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