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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes

Organized Bombardment To Food Manufacturers
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This is my husband's idea and I was shocked that he'd given the situation such thought. He has said since my dx we (ppl w/Celiac) have to band together and do something big or we're not going to make much progress on getting companies to stop putting gluten in virtually all processed foods. He thinks if we come up with an organized plan to bombard major food manufacturers regarding the gluten content of their products, maybe we'll come accross as being a larger group than we are. This is important now since we know 95% of ppl who have Celiac don't know it yet.

The idea is that if we consistently contact companies about their products and which ones are gluten free, say for a solid few months, they will start thinking maybe we deserve to be heard. Not just everyone calls a company one week and another the next. That will just look like a campaign which it is but we don't want them to know that. I can not organize something like this as my busy season of the year is about to be here. But if anyone else thinks this could work, please jump in. It could be a writing campain even. The problem with calls is that most companies record your info before answering questions and most have your phone # in from of them if you call. So a letter writing campaign may be best since we could make up return addresses.

I had another idea after hearing from someone who wants to bombard Campbell's about them making more soups gluten free. What if we asked everyone we know (or are comfortable asking) NOT to purchase any Campbells products for one week? Cambell's doesn't make that many lines so we can post the five or so names and ask people (family and friends) to please do us a favor and not buy the products during a particular week. You may think that's no big deal to a comany that size but it could be enough to get their attention and that's really all we want.

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You know, I really do think we need to organize somehow. It's a tough battle though.

My MIL is active with the Farmworkers' Union, & they boycotted Campbells for many many years. I don't think the company ever changed their ways significantly. But recently a boycott of Mt. Olive pickles resulted in changes to their labor standards, so clearly boycotts can work.

I must say there was a huge nationwide organizing campaign involving numerous church groups, solidarity with other labor organizations, publicity campaigns including all media, &c. It's a tall order for our bunch to match that effort. Is there anyone here with a PR specialty?

Leah

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It won't work unless there is a good business case for it. At the moment, unless we can present viable alternatives (cost wise and production wise) for replacing the wheat-based ingredients, we simply do not have a big enough 'audience' to be worth it. Even if all celiacs were diagnosed, it wouldn't be enough people. It's a business decision. I'm not saying it's not worth it, by a long shot. I'm saying it needs some additional research behind it to provide the companies with a starting point so that they can see the possibility of a business case.

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It won't work unless there is a good business case for it. At the moment, unless we can present viable alternatives (cost wise and production wise) for replacing the wheat-based ingredients, we simply do not have a big enough 'audience' to be worth it. Even if all celiacs were diagnosed, it wouldn't be enough people. It's a business decision. I'm not saying it's not worth it, by a long shot. I'm saying it needs some additional research behind it to provide the companies with a starting point so that they can see the possibility of a business case.

Ditto, even if all of the celiacs were diagnosed and vocal, we'd still be only 3/4 of 1% of the population. That makes us about 2.2 million strong, but in the scheme of the nearly 300 million, it ain't much. I think that our case might be easier to make once the FDA comes up with a definition of "gluten-free" in 2007/2008. I also think that the "whole grains" fad will pass in a couple of years and the useless wheat starch will be taken out of many products (ie: cereal). Do we have any rich lobbyists out there? We need an AARP :rolleyes:

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It could even be something as simple as : pick a company to call for one week. Everybody calls that company and asks about the gluten free status of their products. They explain how nice it would be to have products labeled clearly with gluten containing ingredients clearly shown. End. Repeat the steps the next week with a different company.

It brings awareness. It gives us info. It gives them something to think about if they get a TON of phone calls reguarding gluten/celiac.

-Jessica :rolleyes:

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Tarnalberry makes a good point but Jessica does as well. There are many, many companies that do not call out all forms of gluten (wheat rye and barley) on their labels because they aren't required to by law. Even if we aren't a large enough group to affect change in the actual ingredients of products, we could at least pressure companies to list all gluten just so we stop bothering them. And for those of you who don't buy/eat anything processed that's great for you. We are not all giving up all forms of proccessed food and for that reason, we need to make companies at least make shopping for us easier.

Regarding how many people are not eating wheat, Dr. Cynthia Rudert stated in Feb. of this year that GIG estimates the totals are closer to 4.5 million Americans in total. That includes people with Celiac, gluten intolerance and wheat allergies as well. So that's a lot of ppl and in five years I feel like it will be much larger. Everytime I go in for bloodwork the lady at Lab Corp keeps saying how many Celiac panels she's running. Look at what's happend to this board in just six months - newbies are flooding the site every day. It's overwhelming really. One day we will have a large enough voice to affect change.

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Even if we aren't a large enough group to affect change in the actual ingredients of products, we could at least pressure companies to list all gluten just so we stop bothering them.

Regarding how many people are not eating wheat, Dr. Cynthia Rudert stated in Feb. of this year that GIG estimates the totals are closer to 4.5 million Americans in total.

The first issue is probably the easier to affect. Still not easy, as the cost of fully determining (past the eight major allergens) what is in food is not trivial. (Profit margins on many food items aren't that big. And it's all about profit.) But this is a place where you've got the law (with the definition of gluten free being required in the next year or so) and the threat of additional costs (in the form of lawsuits and bad publicity) on our side. The math is the issue. Assuming *everyone* buys their products, if dealing with us is a 1.5% increase in cost, it's better for them, financially, to ignore us, and lose 1% of their consumers. But the threat of a lawsuit that would increase their costs by 5% by NOT dealing with us makes is better to deal with us, financially. Of course, "deal with us" is accomplished by the labeling issue, from their perspective. For that matter, addressing companies who are not currently listing the allergens clearly enough would be a good step forward too.

Even 4.5 million Americans may or may not be enough for many major companies. Not when you're looking at the 291.2 million Americans they can still sell to. There are some companies, those that pride themselves on customer service, particularly, who are going to be willing to address the market (corporate citizenship and the customer view of a company is starting to be given an actual market value, in many industries, though it's very hard to measure). Targeted efforts there may provide a larger return on investement of our time in this sort of 'campaign'. Again, that requires research and providing companies with a little bit of the legwork to give them some incentive to investigate the issue.

Do we have any business and/or marketing folks on here who specialize in this sort of thing? ;-)

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Take into consideration also the Autistic Community, some of which are gluten-free (I don't know how many people we're talking about there) and the fact that if a Celiac does the shopping for a family, that would affect the numbers, also.

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Take into consideration also the Autistic Community, some of which are gluten-free (I don't know how many people we're talking about there) and the fact that if a Celiac does the shopping for a family, that would affect the numbers, also.

Then take into account that many celiacs are not compliant, and that many who are aren't potential consumers anyway because they have other intolerances or don't risk cross contamination... Really... It'd be a fascinating thesis study; it's quite complicated! :-)

But it's true, if there were additional medical/biological evidence for the use of gluten-free diets in autistics, that could help. It would lend some more high-profile visibility to the issue besides just bumping up our numbers. Clarification of the interplay between gluten-containing grains and IBS (that is not mis-dx'ed celiac) would help as well.

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I have to agree with jersey,

The Autistic community and anyone with ADD/ADHD can benfit from a gluten-free diet as well. There has to be somehting we can do, but I don't know if going to the manufacturers is the answer.

IT is the government that determines the labelling "laws". There needs to be a campaign to the various departments (Health Candada/CFIA in Canada). THat's about the only way I can see companies cahnging what goes on the labels of their products.

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Just found out that the NIH is implementing a new Celiac awareness program. We all know how slow they are. But still it's something. I can't get the link to work but you can go to www.nih.gov and then type in Celiac disease and you'll see they latest findings.

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Just found out that the NIH is implementing a new Celiac awareness program. We all know how slow they are. But still it's something. I can't get the link to work but you can go to www.nih.gov and then type in Celiac disease and you'll see they latest findings.

This is truly heartening news! If they really do follow through on the publicity, it should make it much easier for us to get our point across to companies. We could include the website in communications to the companies, & it should help a lot with our credibility. The thing that pleased me most about their info is that it emphasized that THE SLIGHTEST AMOUNT of gluten is unsafe. Even my relatives find that hard to believe! It's nice to have confirmation from the government!

By the way, I tried to sign up for their e-newsletter without success, but I'm hoping they're just flooded at the moment.

Leah

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What about all the IBS people? I have a client who is on disabilty due to IBS. Think of how common that is. Wonder what the figures are for people on disabilty due to IBS? I think it is one of the highest health care problems today. We all know many doctors put many people in that catagory. LindaLee

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Good point about IBS. After all, we know that a percentage of IBS patients, as well as lactose intolerance people really just have undx'd Celiac disease.

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Just found out that the NIH is implementing a new Celiac awareness program. We all know how slow they are. But still it's something. I can't get the link to work but you can go to www.nih.gov and then type in Celiac disease and you'll see they latest findings.

Is this the link?

http://www.nih.gov/news/pr/jul2006/niddk-18.htm

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