Weekly Update January 29th 2016

In the News
BL-7010 receives designation as Class IIb medical device

The European Union has approved Bl-7010 as for further testing as a Class IIb medical device. The EU has four classes of medical devices, ranked from least rick to greatest risk. This polymer, defined as a large molecule with repeated small units, is ranked just under a Class III device,which poses the greatest risk. This medical device is meant to prevent damage to the gut when gluten is ingested.
This intriguing polymer "has an affinity" for gliadin when it is consumed.  This drug "masks" the proteins from being broken down and triggering an autoimmune reaction. This, theoretically, would prevent damage to the intestinal wall when gluten is ingested.
This drug needs to go through further testing before finally approved for sale. The "medical pathway" would lead to a prescription drug. Bioline-Rx is also seeking to get the drug approved as a supplement, to reach those with Non-Celiac Gluten Sensitivity. Further reasoning to attempt to use this as a supplement includes  In addition, Dr. Savitsky adds "the time to market is significantly shorter for food supplements compared to prescription drugs or devices,” 

In the Mail 
While stores are getting better at providing gluten-free options locally, sometimes a gal still needs to order her supplies online. Birkett Mills  is the only organic certified gluten-free buckwheat flour on the market. While buckwheat is a naturally gluten-free grain, processing can lead to the possibility of cross-contact and high PPM levels. While most products labeled "gluten-free" tend to be found safe through independent testing by Gluten-Free Watchdog, we need to be wary of products without a gluten-free claim.
For those of you who are newly diagnosed, please know that despite its name, buckwheat doesn't contain wheat. It's actually a member of the rhubarb family It is high in protein, fiber and minerals.

In the Kitchen

I loved my husband's grandfather. He was a tall man with a strong presence. He was a teacher in a one-room schoolhouse, a principal in a public school, and an college instructor. He always clearly spoke his mind. But through it all he always had a heart of gold.

When we were first married and he better understood Celiac Disease and my diet, he attempted to accommodate the best that he could. One day he surprised me with a loaf of buckwheat bread. He had researched recipes, played around in the kitchen, and delivered to me what I remembered the best tasting loaf of bread I've ever eaten. I think it was because it was made with his love and concern.

Years later, I've now attempted to make it on its own. I have his hand-written note with the recipe, along with his kind words and sense of humor. I was always amazed at his beautiful penmanship. On the back it says if I have "any questions" I can "call the Expert" Sadly, Papa Earle has been gone for over 5 years, so I can't call. He ended the note -  "Love G & G Clegg." There was never a doubt. :)

It doesn't taste as good as I remember, but I'm also not sure that I didn't mess a few things up along the way. I'll definitely be playing with it again, because it works great as sandwich rounds for my husband's lunch or as a hearty bun for a burger. My husband enjoyed it with Sunbutter & grape jelly.

In My Opinion

Having Celiac Disease can be stressful. It can damage us physically and wreck us emotionally. 
It can be scary. When we feel ill it can leave us desperate for answers. Sometimes our fears and anxieties can drive us to look at and find any kind of answers so we will feel better. 

I've heard the term "gluten cross-reaction" thrown around the internet in the past year. I never paid much attention to it until now. As a Celiac Disease advocate and support group leader, I want to make sure I am passing on the most reliable, truthful information to my followers and members. For background, the list of "19 cross-reactive foods" was published by Cyrex labs. (Buckwheat is listed.)

I did a Google search and found lots of blog posts and websites that I'm not familiar with. Therefore, I went to the website of University of Chicago's Celiac Disease Center, to inquire on their FAQ tab. Here is what their site says -

"There is not yet reliable data about cross-reactivity. As for the alleged possibility that many gluten-free foods or drinks (such as coffee, milk, orange juice, etc.) would trigger symptoms in celiac individuals due to hidden antigens mimicking gluten or cross-reacting with anti-gluten antibodies, it must be clearly stated that this is all false information, devoid of any scientific basis, and must be rejected as untrue." 

As I've said previously, I trust this center implicitly, and have met Dr. Guandalini in person.

I shared this in a public forum and was immediately told how wrong I was. So, like any good researcher, I inquired of other resources. I have a very good friend who attended the International Celiac Disease Symposium in 2013. This is the biggest conference on our disease in the world, with researchers from almost every continent. I asked her, privately, if this issue was addressed at the conference she attended. She very quickly told me that it was discussed and that there is no science to prove it. You can read more about it in her recap, here.

So, I looked further. I wondered if there were any other voices out there also saying that this list of 19 foods that cross-react is not scientifically valid. I came across this article online, admittedly on a blog. The interesting part of this blog is that it shares some of the actual research that Cyrex labs did. Interestingly enough, one of the authors of the paper (and research), Aristo Vojdani, made the following comment on the Paleo Movement blog

"As you actually point out in your blog, nowhere in my actual article do I ever actually claim that foods other than dairy, yeast, corn, oats, millet and rice were positively found to be cross-reactive with alpha-gliadin 33-mer. And to my knowledge, neither has Cyrex. In fact, I just recently applied the same monoclonal and polyclonal antibodies against alpha-gliadin 33-mer to an additional 150 different food antigens, and I can tell you that we found no additional cross-reactivities." 

I realize that this is a sticky, tricky issue. I realize that all of us are different, our bodies react differently, and we are all at different stages of health and healing.(It is possible to have allergies and intolerances to other foods, on top of Celiac Disease!)  I might even lose a few followers from what I have written. But I always want to make sure that I am a voice of truth and reason, as well as open to learning from others. (In a desire to post opposing view points, I would share this long but thorough and well-researched blog post by Adventures of a Gluten Free Mom. ) 

One thing doesn't change though. We are a community. And we won't get the rest of society to take us and our disease seriously if we are tearing each other down. If we want to be listened to as a educated persons, we need to make sure we educate ourselves with valid and thorough research, and not just believe everything we see on a blog, even this one.