Hi Ellen!

I wanted to go to the meeting but there’s no way I can make it. However, if I could have gone, these are the things I would have mentioned:

To start and most importantly I think the CCA is a very necessary organization, and I support everything they already do to help their members. The Victoria chapter especially is active and inspiring. I have truly enjoyed working with members, who are kind, dynamic, and energetic people. The following ideas are not at all criticisms. They are just ideas for conversation.

My understanding is that ultimately, the goal of the CCA should be to increase the number of accurate celiac diagnoses in Canada. In turn, we need more members to fund our efforts. The simple premise of these ideas is that a lot of younger people won’t pay $40 a year to a membership program based purely on a medical diagnosis. Unless local CCA committees apply visible activism efforts, young people won’t be very interested in joining.

To increase members, specifically young members, I would increase the local CCA’s efforts regarding

• national and international gluten-free labelling laws, 
• public awareness and education efforts, 
• gluten-free food accessibility issues. 

When I joined the CCA, I naively expected letter-writing campaigns (with hand-written letters) to MPs regarding labelling laws. I am surprised the association doesn’t already do that - celiac disease is a political issue!

You and I talked about meeting with home economics classes in high schools. If being a member also meant having the opportunity to go with a small crew of people with CD to schools for 30 minute presentations, I would be all over it. CD often develops in teenagers; the practical implications of this simple effort would be enormous.

I’ve been a student for the last 5 years. Food off and on-campus is really difficult when you pay for so much else without a normal income. A by-donation gluten-free food bank, or more gluten-free items in food banks, would have helped a lot. Seriously, a lot.

I’m a CCA member, young, and reasonably defiant. When I was diagnosed I didn’t want education about gf food - I had the internet. However, I could have used a push to get diagnosed earlier, and I really could have used some practical help getting food on my table. In turn, I would happily renew my membership if I thought that other people would get the kind of services that I would have been thankful for.

Please know that I am thankful already for the work that the Victoria celiac chapter has done. The newsletter is a great service, the website looks good and is easy to use. These ideas are not original, I’m sure, but I hope they help a little.

My very best to all the members at the meeting, if you choose to bring any of these up.

Claire

Celiac Disease. I’m starting to come to terms with it. I’m starting to not think about it so much, just like the participants in the study I conducted last year said I would. When I go shopping I know what to buy. When I invite my friends to dinner I know where to go and who to trust. For the most part, I’ve even had the chance to slow down a bit with explaining it to people - most of my friends know all about CD after the last three years of listening to the recounts of my new discoveries.

So you can imagine my surprise when my friend Richard sent me this article. It’s about the three specific toxic peptides associated with CD. They are important because they are what people with CD react to the most - they are the toxins that create the autoimmune reaction.

Immunotherapy exposes people with CD to small amounts of the toxins to encourage the development of natural tolerance, just like for other allergies. The article doesn’t name the peptides, or any scientific information really, but it does say that they expect important headway in immunotherapy for CD after this discovery. 

So the question remains… would you do it?

Bonjour!

Day 1 diagnostics: it’s really really hard to find French people who know what Celiac’s Disease is. However, I did meet a British Woman on the ferry who has had it for 12 years. She visits her summer home in France with it. That got my hopes up about travelling to the South until she said that she brought all her food with her from England. Merde!

On the upside, Justin and Hombeline and I are understanding each other about 80, maybe even 90% of the time. Not bad for someone who hasn’t been to France in 7 years!

Correction (already, I know): Rice Dream says “wheat-free,” not “gluten-free” specifically on their label. But there are still grave problems with this so called “healthy” dairy and soy alternative for people with Celiac Disease.

I looked Rice Dream up again and on their website, and Hain Celestial Group for sure does not list barley on their Rice Dream ingredients list. They do, however, tell the customer on the Rice Dream packaging that there is less than 0.002% barley gluten in the product. What gives? If barley wasn’t an ingredient, why is there less than a certain amount? If this was unlisted peanuts, people would be freaking out about this. Gluten isn’t immediately life threatening, I know, but it does create a very serious auto-immune reaction in which our bodies attack themselves. To me, that is enough to say “you should have listed the ingredient. Now please remedy the situation.”

Two problems:

#1: The label that says that there is barley in the product is on the other side of the Rice Dream box from the ingredients list. If I look at the ingredients and don’t look at the rest of the packaging, then I would assume it was gluten free, which it is not.

#2: 0.002% means that for every 1000 particles of everything else, there are two particles of barley gluten. Not only is that not zero, but that is quite enough to make me sick (and did).

When I called the company they assured me it was gluten free and that, as someone with CD, I could drink it and be fine. They apparently have “tests” which prove that the product is gluten-free. Unfortunately the tests are not as good as my blood stream is at detecting poison.

Posted by Claire