Celiac Disease Foundation Conference Trip – Part Two

Last time, on Celiac Disease Foundation Conference Trip, we left our heroine as she was about to have a seat and listen to some amazing information from doctors and dietitians. Will she listen? Will she conk out due to lack of sleep? Will she eat all of the cupcakes on the platter in the middle of the table? Let’s see…

I hope it will be obvious that I did stay awake. My body wanted to sleep, but my mind was to engrossed in all that was going on. And, I only had one cupcake. I ate it after lunch. It was chocolate, of course. And it was pretty tasty. Not too bad, Betty Crocker.

Marc Riches (President of CDF) and Elaine Monarch (Founder & Exec. Dir.)
Marc Riches (President of CDF) and Elaine Monarch (Founder & Exec. Dir.) are way in front.

As per usual at conferences, it starts off with the President of the CDF talking about how he got involved and how Elaine Monarch founded the CDF. Such an amazing story and how far it’s come and how much awareness there is thanks to her and the CDF. Then Elaine steps up to introduce Dr. Peter Green. But before she does, she tells us how they went visiting Cedars Sinai the day before and ended up staying all day. Now they are going to do all of this research and at UCLA. Wow! Those are some big guns on the West Coast.

So some of what Dr. Green spoke about is stuff that most people with Celiac Disease already know. He did give some interesting statistics. Like the rate of diagnosis in Finland is 70%. In Australia, Italy, and Ireland, it’s 20-30%. And in the US, it’s 1%. He voiced his opinion about the US being behind the curve on this one. In fact, he expressed himself a few times.

One thing he brought up that I didn’t know was that men and women have it equally. For some reason, I had heard that women got Celiac Disease more than men, but I guess it’s just that women are diagnosed more than men. My husband and I figure it’s because men are more likely to “tough out” the symptoms.

Next up was Dr. Daniel C. Adelman from Alvine Pharmaceuticals, Inc. He talked about pharmaceutical research. As of now, there is nothing available. I have heard of something that people take to help digest gluten, but as far as I know, it is a supplement and unregulated. Currently, there are three companies, including Alvine that are researching possible medications. They are all in the experimental stage. Not available unless you are part of a study.

One of the companies, Nexpep, is working on a drug, Nexvax2, to induce tolerance to gluten. They are currently in the Phase 1 clinical trials. Their experiments on mice showed promise. Examinations showed lessened inflammation. Here is where I feel hypocritical. (Oh heck! I know I am. Does that make it any better? I guess not.) He used some nice term, like, sacrificed or something, to mean killed and dissected. I know it’s part of pharmaceutical testing, but I wish it didn’t have to be.

OK. Back to the good parts. “Nexpep has completed preclinical development of Nexvax2 and has commenced clinical trials to test the effects of Nexvax2 in patients with coeliac disease.” – from Nexpep website. Click on quote to read full report.

Alba is the next company he talked about. The drug works on ‘tightening up the junctions.” To me, it sounded like he meant thickening up the intestines, but I know it is much more complicated than that. (Maybe it means that our intestines can do little exercises to get all toned. Small intestine bench presses anyone?) They are currently in the Phase 2B of the clinical trials of Larazotide (Makes me think of laundry soap or the name of someone’s boat.) The good news is that it seemed to “lower the antibody response.” The bad news is that as far as having as great of an effect as they were wanting, it was no better than a placebo. Rats!

The last one that was talked about was from Alvine. I believe, right now, it is just called ALV003. Fancy, huh? Their drug works on helping to digest the gluten. This drug will not replace a gluten free diet, but it will work in conjunction with it for those times when we might be “glutened.” I think we all know what that feels like. Now here is where the really big words come into play, but I think I get it, so I hope I explain it right. The goal is to make the gluten no longer immunostimulatory. Whew! How it works is, lets say you get a little glutened at a restaurant because flour is flying in the kitchen and gets on your grilled chicken. No one notices or thinks it matters because they aren’t in your shoes. Normally, you would eat it, and not know about it until you got sick later. Well, if you take this when you go out, just-in-case, it “cleaves” the amino acid chains of the small amount of gluten into chains that are less than nine aminos. Amino chains smaller than nine aminos do not cause a reaction in those with Celiac Disease. Were not talking parts per million, here. Were talking molecules.

So the studies so far have shown that it is stable in the stomach. (Your stomach acid won’t destroy it and make it useless.) It will degrade the gluten in the stomach to the point of no longer being immunogenic. (Another big word that means less than nine aminos in the amino chain.) And they are currently enrolling people in Phase 2. Yippee! Hope! Hope! Hope!

Next up was Miss Kansas City, Kari Gai. She has Celiac Disease and is very impassioned about spreading the word. She was very sweet. And very easy to spot, wearing her little tiara. I would just love an excuse to walk around in a tiara all day. Too old to get away with it now, I guess. Maybe when I’m 85 and everyone thinks I’m senile.

Then we had Dr. Sheila Crowe. Her talk overlapped Dr. Green’s a bit, so she tried to go faster through those parts. Plus, she was right before lunch, and she didn’t want to keep everyone from food. Considering it was a room full of people with Celiac Disease that were out and knew that they actually didn’t have to worry about the food they were being served, I don’t blame her. She was funny, and a great speaker. She had a few slides that were from parts of her book, Celiac Disease for Dummies. (I can’t wait to read it. I already devoured Dr. Green’s book, Celiac Disease: The Hidden Epidemic, as well as Shelley Case’s book, The Gluten-Free Diet while doing research for the website. I’m sure Dr. Crowe’s book will add a lot.)

Back to the topic. I thought one of the sad things that she talked about was Refractory Celiac Disease. I didn’t know about this, but I guess it is when the biopsy never goes back to normal. The person doesn’t respond to a gluten free diet. This is after years of being on it. She said it’s a precursor to lymphoma. Makes me really happy that I am great as long as I’m gluten free. I have a friend whose friend has it. She has to avoid all grains, except a little bit of rice. That’s it.

Another point Dr. Crowe talked about was how to go into your doctor’s appointment, since so many doctors aren’t familiar with Celiac Disease.

  • Most important is to be an advocate for yourself/loved one, whomever has it. You have to take charge of your own health.
  • Go into your doctor’s office with a list of questions you want/need answered.
  • Take notes.
  • Bring a friend with you for support and to listen and help take notes. It’s too easy to miss something when you are by yourself.
  • And make sure you know when to see the doctor again. When is your next follow-up?

Whoa! I just looked at the word count on this, and I still have so much more to tell. I guess this is going to be a three-parter. So, stay tuned for next time, when we will read what the dietitians had to say, as well as all of the other interesting people who I met and antics that went on. Oh, it was so fun. I want to go again.

Until next time, here’s to… Living better, easily!

Celiac Disease Foundation Conference Trip – Part One

Celiac Disease Foundation Conference Trip – Part Three

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2 Responses to “Celiac Disease Foundation Conference Trip – Part Two”

  1. looking forward to hearing more, unless you’re in a sugar coma from all of the cupcakes~!