So once again, I’m still trying to play catch up and tell all of you more about the conference. I just can’t ever seem to find the time. I had a super busy weekend of finishing up some craft projects and starting a few more.
Anyway, I forgot to talk about the food at the conference. On Friday evening we had a nice dinner. It was a regular old buffet line and this was our menu:
I can’t say I really had complaints about any of it, other than the fact that we were supposed to get lemon cake instead of chocolate whatever-that-was. I just don’t love chocolate and it was WAY too much chocolate fudge-y-ness.
(I’ve been trying for two weeks to get this typed up. I knew it was going to be long, so I just haven’t had the time. I’m going to try to finish today.)
Okay, so back to day 2. We were all there bright eyed and bushy tailed in the morning to get started with speakers again by 9. The first speaker that morning was Jennifer Hill, a nurse practitioner. She was a great speaker, but nothing really “stuck” for me with her persay because she spoke mostly about children. Since we unfortunately don’t have any, there wasn’t a whole lot that pertained to my life. She spoke on signs and symptoms of something possibly being ‘wrong’ in children that could lead to Celiac Disease diagnosis. She talked about dermatitis herpetiformis and dental enamel issues. She did speak on a few things that would also be relevant to adults, which was supplements and medications and checking for gluten content. websites like glutenfreedrugs.com or the clanthompson.com websites are great help with that. She also mentioned being careful with things like lipsticks and lip glosses and balms and anything that you might possibly do with your hands that could get in your mouth, like playing with play dough or something like that. She did also speak on the importance of being tested when there is a first-degree relative with Celiac diagnosis.
Then I think we had Dr. Malahias speak, who is a dentist. That was interesting to hear how much undiagnosed CD can affect your teeth and gums, and also gross at the same time. (I’m not a fan of looking at teeth and the inside of mouths. ICK!) He talked about how there have been times where he has known someone has had CD and has prompted them to be tested for it, just based on what their mouths look like. You’d really have to know your stuff to be able to see that, I would think. He told us the incidence of CD when there is a first-degree relative diagnosis is 1 in 22. The general consensus was that in the general population the incidence is 1 in 133, which is how 1in133.org came about. But now they are estimating it’s more like 1 in 100. He also said that of this group, it’s been said that 30% of the people actually have the gene that’s linked to CD, but it could be only 1% of that group that actually presents itself. There is still a lot of unknown about why/how it comes about.
After that we had lunch. It was awesome! It was picatta chicken, which I’d never had before. It was delicious. There was pork chop with apple chutney (which I hate pork, but I took a small piece just to try it) and it was NOT good. It was super dry and overcooked. But the parmesan horseradish potatoes were to die for and then lots of salads and stuff again. And the dessert was cheesecake, which you had a choice of one with chocolate sauce on, caramel sauce, or strawberry sauce, and yes, I chose the strawberry. It was great!!! I sat at a table with no one I knew and it was interesting to visit and here where everyone came from to be there and sort of their stories.
Then next speaker we had was Dr. Fasano, who is probably one of the most well-known doctors in the Celiac world. He was awesome! He’s just a wealth of knowledge. He talked about the various different possibilities that he/they think contributes to the development of the disease, including the genetic predisposition, environmental triggers, and just eating gluten/being exposed to gluten. He talked about the gene(s) associated, which is HLA-DQ and that includes DQ2 and DQ8. And I guess there are some of genes that account for 60% of the inherited component. Some of that is just over my head, so I gathered what I could out of his talk. The diagnostic tools they’re using to give a diagnosis are changing. It used to be a blood test and a positive biopsy. If those weren’t gotten, you were given the Dx of non-celiac gluten sensitivity. I guess I was one of the lucky ones that had such damaged intestines, I was able to get a positive biopsy. Now, they have better blood work options, including a positive serology, along with the presence of symptoms, compatible HLA, a positive biopsy, and resolution of the symptoms on a gluten free diet are all part of the ‘testing’, which he said, I believe, that if you had 3 or 4 out of the 5 you still would receive a CD diagnosis, so it isn’t solely based on the biopsy anymore.
The final, and probably my most favorite speaker, was Dr. Tom O’Bryan. I believe he is a chiropractor and a certified nutritionist as well. He does a lot of work with chronic disease and metabolic disorders. If I lived anywhere remotely close to where he is located, I would go to him in a heartbeat. He is honest, although it may be depressing, but I think truthful and helpful are the best assets to have as a physician. I did not take good notes on his speech. He had me roped in so much. He spoke a great deal about his godmother, who was also his aunt, I believe. She was very ill toward the end of her life and he went through the whole diagnosis process with her. It hit VERY close to home. Her story was so closely linked to my dad’s story, it was scary. After hearing his speech, I know, without a doubt, my dad had undiagnosed CD. I believe that is ultimately what led to his death. For several years, while dealing with his illnesses, I asked him repeatedly to get tested. He never did speak to his doctor about it. I asked his doctors even if we could test for that and if that would have anything to do with it. They all gave me a resounding “no.” There were some tears shed at some point during this because it was all so familiar, but that’s all history now.
So, with that said, I will say this, it was completely worth every second of being there. I will go again every chance I can. The next one isn’t until November of 2015, but I will put it on my calendar now. I wanted to get this done before Dr. O’Bryan had his week-long deal online for the gluten free summit, but I never had the time. I was able to listen to some of the speakers he had for that and it was very interesting. I wish I would have had more time to hear them all. You can check that out by going to thedr.com and I think he has links on his website for that. For more information on GIG, check out www.gluten.net and there will be links under the Fargo, ND group eventually for the conference in 2015. It’s November 6-7 at the Holiday Inn again. Seriously. Go. You won’t be disappointed!