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?

I got ethics approval!!!!

Which means this study starts at once. Now, If you see this flier in the newspaper, you’ll know it’s me:

“If you are older than 55 years and have been diagnosed with Celiac Disease, we could use your insight. We are studying the attitudes of adults over the age of 55 diagnosed with Celiac Disease toward physical activity. The survey will take approximately one hour, and we will come to you. This is a legitimate study held by the University of Victoria. If you are interested in participating, or have questions about the study, please call Ms. Atkin: 250-818-4235 or email her: catkin@uvic.ca.”

Thank you, UVic! I now can stop feeling like an unemployed bum and now start feeling like an unemployed bum with an academic purpose.

My response to the seemingly automated message that Lynda of Hain Celestial Group sent me in reply to my concerns:

Hain Celestial Group:

Main points:
-This is a good opportunity for positive public relations for Hain Celestial
-“industry standard” for minute amounts of gluten must change
-Rice Dream is not ok for people with Celiac Disease, and barley content should not be in fine print on the other side of the packaging from the ingredients list.
-Barley should be included in you list of ingredients, not on the other side of the package in fine print.

You are getting a lot of bad press because you have not labelled barley in your ingredients list. I have had my own negative experience with Rice Dream (I was sick for a week), but many other people with Celiac Disease are also posting their frustrations on forums and blogs.

I am exceedingly sensitive to gluten in my bloodstream and Rice Dream made me ill with symptoms of Celiac Disease for over a week.

Celiac Disease is not an allergic reaction. It often does not matter how much gluten I ingest, it matters that I digest ANY gluten, or remnants of gluten. Protein in barley is NOT broken down by cooking, or if it is, then not enough. Your tests may meet industry standards, but industry standards need to change anyway. Hain Celestial Group prides themselves on providing healthy, wholesome foods to the North American and European market. If you were to change your labelling to include barley on the ingredients list, even if it is at such a low percentage of the beverage, it would provide you with a positive public relations opportunity. As it stands, Hain Celestial is untrustworthy when it comes to minute amounts of gluten in their products.

Celiac-friendly forum sites agree with my sentiment:
http://www.celiac.com/gluten-free/lofiversion/index.php/t18970.html
“Rice Dream is NOT ok for celiacs!” - a response to a confused mother

http://www.celiac.com/gluten-free/index.php?showtopic=37469
- frustrated people with Celiac Disease, all complaining about your labelling.

http://surefoodsliving.com/2007/08/25/rice-dream-says-its-now-gluten-free/
- unhappy blogger

One in 133 people in North America have Celiac Disease - it is the most common genetic disorder in the world.

Please include barley in your ingredients list. The fine print on the other side of the packaging is not enough information. It is hard to read and misleads people with Celiac Disease into thinking that your beverage is gluten-free.

Your gluten-free brand is doing very well, but it will fail if your products do not meet the needs of people with Celiac Disease. Mislabelling is SO dangerous for us and our children.

Claire *****

I hope I made myself clear. Their response didn’t make sense anyway, but I was not going to argue the semantics…

They essentially said: “Our tests have improved. We used to say “contains gluten.” Our tests have not changed. Our formula has not changed. “We now say, in fine print, on the other side of the packaging from the ingredients list, “contains 0.0002% 0.002% of barley.”“

It doesn’t make sense- have their test improved, or are they the same tests?  I think the only thing that has changed is that they suddenly thought it would be a good idea to market their Rice Dream as gluten free because gluten-free is becoming a fad diet. Meanwhile, the people who actually get sick from gluten are subjected to poison, curtesy of Hain Celestial Group’s improved profit margins.

Posted by Claire

I received a reply from Hain Celestial (the parent group of Imagine Foods, who make Rice Dream) to my original letter.

Ms. *****,

Thank you for taking the time to contact us regarding our Rice Dream Beverage. We apologize for the delay in our reply and appreciate your patience. We strive to maintain the highest quality products and we appreciate your patronage.

Analytical testing methods and detection limits have improved over the years.  Recent testing shows that the Rice Dream Beverages (as well as the barley protein used to make the product) meet gluten free requirements.  This has probably been true historically, however analytical testing methods did not permit us to make this claim.  We have always maintained a conservative stance regarding gluten in the beverages.  The same rigorous standards now allow us to declare them gluten free.  The formula and processing methods for Rice Dream beverages have not changed.  Each batch will be tested appropriately.

Thank you for your continued support. If we can be of further assistance, please feel free to contact us at 1-800-434-4246, Monday through Friday from 7AM - 5PM Mountain Time.

Lynda
Consumer Relations Representative

Ref # 1843880

See next post for my reply.

Claire

This study explores the effects of different lifestyle factors (exposure to sunlight, physical activity and cigarette smoking) on the level of bone density and mineral metabolism in celiac disease. The researchers “evaluated the impact of potential co-factors on bone homeostasis in coeliac disease.” They studied 39 adults with untreated CD (18 symptomatic, 21 sub-clinical/silent), and used X-ray technology to measure bone mineral density. Participants disclosed their “age at diagnosis, gender, duration of symptoms and severity of symptoms.” Researchers then evaluated their “nutritional status, cigarette smoking habit, exposure to sunlight, and physical activity.”  They found that while smoking and exposure to sunlight did not seem to affect bone mineral density, physical activity, gender, nutrition, and severity of symptoms did. They also found that different factors impacted different parts of the skeleton.

Study: Corazza, G.R., Corrao, G., Di Stefano, M., & Veneto, G. (2000). Role of lifestyle factors in the pathogenesis of osteopenia in adult coeliac disease: a multivariate analysis. Gastroenterology Hepatic, 12, 11.

Moral of the study: try to stay gluten free, keep up the weight-bearing exercise, and think about turning into a man to bring your bone density up!