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

This is the response I got from Kari at Food Matters, the new video about our food system and pharmaceutical industry. I sent them some very difficult questions, and didn’t expect this response.

Hi Claire, Thank you for the kind words about Food Matters.  That is sad news about your celiac condition.  From a legal standpoint we are unable to treat or diagnose over the internet.   I can offer website that I myself use when presented with a health situation. Have you listened to the first 20 minutes of each of our learning programs?  http://www.foodmatters.tv/_webapp/Learning%20Programs

Do you have a health food store in your area?  Most of them have an onsite Naturopath a few days a week to answer your questions.
Have you looked into seeing an healthcare practitioner who uses high doses of nutrients when working with disease? Here is a site for Orthomolecular practitioners around the world  http://orthomolecular.org/resources/pract.shtml Please thoroughly interview each person to make sure they are right for you.  
These are great websites to learn more about health.  Try Dr Sauls first and then check out any books he recommends from your local library.

• http://www.doctoryourself.com Dr Andrew Sauls website featured in Food Matters the film
• http://www.thedoctorwithin.com/ Great content and resources
• http://www.vitamincfoundation.org/ Vitamin C foundation
• http://vitamindfoundation.org/ Vitamin D foundation
• http://www.mercola.com/ Number one health website and free newsletter

I hope this helps!

Kind Regards,
Kari Taplin

Thank you, Kari Taplin. I will watch your movie.
ps to readers: I don’t think having celiac disease is sad necessarily - unless I’m having a particularly bad day for B12 intake.

In regards to VEGA natural meal replacement powder:

Hello Claire,

Thank you for taking the time to call us and to follow up with an email. We also appreciate your 
feedback and are pleased to hear that you were treated well by our team. 
It is because of customers such as yourself that we can make better products and become a better 
company, so thank you!

Please be assured that each and every batch of all flavours of Vega WFHO, Smoothie Infusion and our 
bars are Elisa tested and always fall below the 20PPM as per the Celiac Association recommendation. 
I am attaching one of these assays for you to review. Wheatgrass and barley grass are considered 
gluten free because wheat allergies are usually a reaction to the gluten found in the wheat berry and 
as wheat grass is a vegetable, it is cut before the wheat plant actually forms the grain (aka berry). 
You can read more about wheatgrass being gluten free here: 
http://www.theglutenfreefoodlist.com/site/index.php?option=com_content&task=view&id=45&
Itemid=57 
and barley grass here: http://www.natural-nutrition-for-health.com/barleygrass.html

Our manufactures have GMP manufacturing facilities and also provide us with forms ensuring that our 
products made in their facilities are gluten free. GMP certification requires that these pharmaceutical
grade facilities have complete cleaning and sterilization between changeovers in products to ensure 
that there is no cross contamination.

I will be passing along your suggestion regarding adding the "Elisa tested to less than 20PPM" to the 
Gluten Free information for management's consideration and again we do appreciate your help in 
making us a better company with a better group of products.

Should you have any other suggestions we invite you to share them with us!

Sequel Naturals

I’m not sure quite what they meant by “Eliza.” I think that they mean that they will consider putting “contains less than 20ppm (parts per million)” under the words “gluten free” on their label.

I also think that they quickly googled “barley grass gluten” and “wheatgrass gluten” and gave me a couple blog-type links. They were as good as any internet information source.

At the bottom of the scanned paper (above) that they sent me there were two signatures. I appologize - if I could fit the whole page on to the screen I would, but it is fuzzy enough already. This is what it says at the bottom of the page:

Certified by Yuwei Zhao, MSo, Senior Analys   [Dated 2008-01-04]     Approved by Russel Gottschalk, BSc, Senior Chemist  [Dated 2008-01-04]

Raw data are archived by Labs-Mart Inc. Labs-Mart Inc. reserved all the righs of interpretation of its test results. It assumes no liability for the us of the results by any party.

I really like VEGA powder. I find that it comes in handy when I have a gluten attack because it hurts less to drink it than to eat real food. It is also delicious in smoothies. I don’t know about the vanilla or chocolate flavours, but the berry flavour is delicious.

I’m still unsure about wheat and barley grass. According to gluten-free forums that I’ve looked at, most people are just not willing to take the chance, but many people with Celiac Disease say that they do buy and consume it. My sister thought that she was getting sick on Greens+, and it turned out that it had both wheat and barley grass in it. She stopped eating it and was fine.

I think I will always hold that my body is a way better determinant of whether something is gluten free or not. So we’ll see about this whole wheat grass/barley grass thing soon enough I’m sure.

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

Sent March 21, 2009 via Hain Celestial Group’s Contact Us page.

(Background: Hain Celestial markets that their “cooking process” breaks down the barley protein in their Rice Dream, and therefore does not affect people with Celiac Disease. How ridiculous.)

Dear Hain Celestial Group:

I have Celiac Disese, an intolerance to gluten. When gluten gets into my bloodstream, my body destroys the absorptive surface of my small intestine.

I don’t care how rigorous your tests are, or whether the law states that you are “legally” allowed to state that Rice Dream is gluten free. Because of your social irresponsibility, I now won’t absorb calcium, iron, or any other nutrient properly for six more weeks.

Thanks a lot. Because of companies like you, I have osteopenia, anemia, and a very high rate of getting diseases like Multiple Sclerosis and cancer. How dare you? I don’t deserve to put up with your lying.

Take “gluten free” off you label and put barley back on your list of ingredients.

Sincerely,
Claire *****

Needless to say, they have not responded.

Posted by Claire