If living in or near Anaheim, CA they need FOUR celiac patients to complete the KumaMax study! Please consider volunteering. They have gotten all of the healthy volunteers they need, so its on us to move this thing forward!

If living near Rochester, MN they need celiac patients for the NIH sponsored study of Latiglutenase. The drug consists of a combination of two enzymes which efficiently degrade gluten in the stomach when taken during meals.

Volunteering to participate in a clinical trial can be scary. It is something that should be taken with a lot of thought. Before volunteering, evaluate the drug being tested. They will give you an informed consent document that lays out in plain English what the drug does, known side effects if any, any compensation if available, and specifically outline your role in the trial including any blood tests, endoscopy, surveys, etc. This informed consent form is your blueprint for your role in the clinical trial. It should be read and understood thoroughly before participating.

Also, discussions should be had with your family regarding how this will affect your life. Discussions about potential short-term and long-term side effects, how this might affect work or school schedules, how this trial might affect social commitments, and how the trial might affect finances in the family. This is a serious discussion and should be had with everyone affected.

When I participated in my trial, we had a family meeting with my husband and my children. My husband and I described how my participation would affect our family and especially our children. If either of them had said they didn’t think it was a good idea, we would have had to re-evaluate the calculus of participating in the trial.

Anyway, the trials are heating up and we need participants. I know entering a clinical trial is not an easy decision to make and its not right for everyone. So, please look at the trials available and think about it. You could help a lot of people by doing the trial and then you can write a really cool blog about it and become famous!! 😉

Denise Richards has recently decided to embark on a gluten free diet to help with an enlarged thyroid. We don’t know what issue is with her thyroid. After reading several articles, I can’t find out what it is. She says she feels better on a gluten free diet. Great. I’m glad she feels better.

I’m a member of a group for parents with ADD/ADHD. One mom posted that her doctor recommended that they try a gluten free diet to help with their child with the ADD/ADHD issues.

I don’t have a problem with people trying gluten free diets. Heck, I encourage it! Many people feel better on a gluten free diet because they have cut out much of the processed junk food they were eating. The gluten free diet can be much, much healthier if done without replacing much of the gluten filled foods with their gluten free replacements. Also, the gluten free dieters push the need for the gluten free replacements, which only helps us with celiac disease.

The gluten free fad dieters worry me when they eat at restaurants. They insist they need gluten free food then order something that is inherently not gluten free. If you are going to order gluten free food in a restaurant, order it and stick to the gluten free plan. If you wanna eat gluten filled foods after, fine. But you cause those of us with celiac a great deal of harm when you insist that your gluten free meal must be gluten free, but then counteract that with a gluten item. Many restaurants go to great lengths to ensure a meal is gluten free when it is ordered as an allergy. Those of us with celiac depend on that meal being entirely gluten free. So, as a favor to us, please remain gluten free at a restaurant when ordering a gluten free meal.

That’s what I’m thinking about today.

Also, I’ve finished the stem cell article. I’m going to proof read it tonight again and it will be up tomorrow. Look on Saturday for an article on the new follow up care guidelines for celiac. On Sunday, there will be an article about my menu for the following week and the current fashion of bringing your own gluten free food into restaurants.

Leave a Reply