The Politics Of Gluten

[sarah513]

Obviously, most of the posts on this board have to do with the nuts and bolts of celiac disease rather than any broad political questions. I realize that this post is unusual, and perhaps unwelcome for some of you, but I hope that you will consider what I am saying in a spirit of solidarity. I want to argue that living with celiac disease is, in fact, political; that we need to look at the larger picture in order to understand what is affecting our lives; and that we need to organize and take an active role in improving our lives.

We know that about one in 133 Americans (more or less) have celiac disease. We know that the majority of them are undiagnosed and live in pain and discomfort without knowing why, often eventually succumbing to related conditions.

We also know that 44 million Americans don’t have health insurance—not to mention people who may not be counted in the census and who are almost always shut out of the health care system, such as homeless people and illegal immigrants (all of whom are human beings who feel pain). Of the people who do have health insurance, the majority are working-class people who have basic plans and often have trouble affording copays, deductibles, prescriptions and specialists—when they are covered. We also know that the health care system in this country, such as it is, is a profit-based industry. It exists to make a few people very rich, not to deliver the best medical care to the most people. As a result, insurance companies stand in the way of getting needed medical care to patients, despite the best efforts of dedicated (and overworked, and often criminally underpaid) doctors, nurses and health care workers. They see health care as a cost to be minimized, not as a basic human right.

The result, for us, is that suffering celiacs go undiagnosed, and even diagnosed celiacs have trouble getting access to the care we need. (For instance, my insurance company won’t allow me to see a nutritionist because I’m not diabetic—and the person making that decision has no medical training.) When we can see doctors, they are often uneducated about celiac disease and give us erroneous or conflicting information, don’t know how to give us the care we need, and are too overworked to research it and find out. Don’t we have the right to doctors who know how to treat our condition? Can only rich (or perhaps also geographically lucky) celiacs get specialized care?

We also find ourselves at the mercy of food manufacturers. The Food Labeling Act, in effect in 2006, does require foods containing wheat to be clearly labeled, but wheat does not equal gluten and we still have to contact food companies, which often give us dodgy and vague nonanswers written by lawyers. If we live in major cities or have internet access and a credit card, we can buy specialized gluten-free products, but not without tripling our grocery bills. That’s not helpful for those of us who struggle to make it from paycheck to paycheck, not to mention those who are sick enough to rely on disability payments. We can make delicious and nutritious food at home, but we need to learn how to cook and how to take gluten-free safety measures, and let’s face it, if you have two jobs and kids, you can’t cook everything you eat no matter how resourceful you are.

Furthermore, if you find yourself sick from a gluten accident or a related condition, you can expect to run out of sick days, take unpaid illness leaves (losing your income), and even find your job in jeopardy from bosses who dislike your “attendance problem” or your too-frequent bathroom breaks.

For all of these reasons and more, we celiacs need to organize. I don’t just mean sites like this one. I can’t imagine what people did before the Internet—sites like this are no doubt a godsend—but a membership organization that could provide “real-world” resources could save lives, influence manufacturers and labeling laws, educate medical professionals, and bring awareness to this problem. We need to form some sort of collective to provide access to referrals, nutritionists, gluten-free foods, etc. for people who are geographically or financially prevented from obtaining these resources—something active and organized, like a National Union of Celiacs.

The disability rights movement has done this with results that have broadened and even saved many lives. LGBT people are coming together to fight for marriage rights and health care. Why not celiacs? There are individuals and groups doing great work out there, but their audiences are limited. Most of the restaurants on the gluten-free Restaurant Awareness Program are expensive; celiac conventions cost hundreds of dollars to attend. We need to reach people who don’t yet have the resources they need, people who are struggling, people who haven’t been diagnosed and maybe don’t even have health care. but we need an organized effort—we need a movement.

We need to do things like:

-Recruiting celiac-friendly doctors, nutritionists and other specialists into a program that reduces fees for low-income celiacs or perhaps a credit union-style system to ensure that everyone has access to diagnosis and care.

-Demanding that celiac prisoners, mental patients, and others who cannot control their own diets not be poisoned by gluten.

-Fighting back against medical institutions that tell us we are crazy or insurance companies that refuse us medical care, through organized complaint, media campaigns, protest and lawsuits.

-Organizing celiac disease screenings on campuses and workplaces—and offering newly diagnosed celiacs the support and resources they need to get healthy again.

-Organizing multilingual celiac disease screenings and education in immigrant communities.

-Organizing cooking classes and “gluten-free 101” classes around the country, in multiple languages, for sliding-scale donations.

-Forming gluten-free food co-ops and community kitchens to help us all share the burden of gluten-free shopping and cooking—and demanding food subsidies for people on medical diets. (Agribusiness corporations get billions—that’s right, billions—of dollars in handouts and tax rollbacks from the government every year. Why shouldn’t some of that money go toward helping sick people afford food? See Open Original Shared Link for more information on this.)

-Protesting a food industry that places shelf life and ease of manufacturing far above nutrition, health, safety and workers’ rights.

-And why on earth haven’t we joined with physicians’ organizations, healthcare workers’ unions and other patients to march on Washington to demand affordable and sane health care?

There are plenty of us. Nobody is going to accommodate our disease or fight for our rights unless we do it ourselves.

[perfect010]

Sarah,

Oh how right you are.....I live in a very small area in PA and it is so frustrating to buy foods, talk with doctors, read labels, call food companies, and to have no support. We go without so much, because it is extremely expensive to buy gluten-free foods, and when you explain celiac to people they basically go undiagnosed because they can't imagine baking all your own bread or paying $5.00 plus for a loaf (a very small loaf) of bread. It is a sin what we have to go through. I often spend my spare time trying to figure out how I can make a difference or how I can start something that would make a difference in the celiac world. It is a world of our own, but really a world that no one else seems to understand and they don't even want to even though Celiacs probably affects them or someone close to them. I think that we will never get any support from the government or any organization. Do you realize what would happen to the stock markets if wheat, rye, oats, barley, and all the products made from these items, were suddenly announced to be dangerous to 1 out of 133 people? I don't see us getting any major support, it would not support the traditional economy that we have been living in. Oh the stories I could tell you about my history and my dealings with doctors, hospitals, pharmacies, and health insurances. It makes me more sick than the celiacs disease. It is a sin!! I'll never forget my doctor the one I had before diagnosis and how he constatly tried giving me anti-depressants. Finally one day he asked me if I felt like doing something to myself. I was never so upset in my life and I gave it to him good, and told him, that that was my problem I had too much to do in my life and I wanted to live it to the fullest so would he please get off his duff and help find what was wrong with me. That was the end of that appointment and I later saw his assistant and she was the one who sent me to a hemetologist who one week later diagnosed me. There was not a lot of info but I was thrilled to finally be diagnosed (after being sick for 36 years). Only to later find out that you can't get the insurance to pay for you to see a sepcialists out of the area, even though the area I live in had NO ONE who knew how to help me. And then, to have the doctor who earlier wanted me to live my life out of a pill bottle, sit and dare tell my son who was diagnosed also "Don't worry about this you don't have a very bad case of Celiac Disease so you can cheat on your diet sometimes it you feel like it". I was so beside myself, and believe me my son tried to cheat after he had been on the diet for three months, (he ate a few pancakes at a friend's house). Boy was he sick, he was in bed for the whole weekend and it took quite a while for him to recover from that one. I did find another doctor to take our case, but I basically teach him about maintaining and monitoring. He has tried, because he did get in touch with doctors who specialize in Celiacs Disease to help him through the tough times. I fear this disease, not because of the disease itself, but because of the government, the food industry, the cost of medical care, and the ignorance and refusal to be aware. It is lonely living here with Celiacs Disease and not having the proper backing from the govt, food industry, the doctors, and whatever else would be helpful to us. I would gladly get involved in being a voice for Celiacs Disease. It is only a whisper at this point and we need to start screaming. This affects too many people and the diseases that are a result of celiac disease are major. I also feel that there is not enough research being done my scientists, and researchers because it would reult in a CURE. An end to soo many diseases and health problems, and if that were to happen, what would the drug companies do, and the drs and hospitals? Is celiacs the cause of cancers, diabetes, arthritis, heart problems, ADDHD, autism, ect. and just imagine a gluten free world, which could lead to less cancer, diabetes, arthritis, heart problems, ADDHD, autism, ect. What would happen to the economy then. Maybe that why we are not getting the support that is so desparately needed by us. I would love to be the difference, I am so out of the loop. I live in a very remoter area and the internet has been so helpful. I want to set a plan and get things done for ourselves. I think an agenda with details of what is needed for those of us with celiac disease is needed, and a plan of how to obtain those needs is the second thing that needs done. But this needs to be a group effort, agroup that is dedicated to taking a stand. I agree with you, but how do we organize, and make these things happen. because I agree no one is going to do this for us!!!! Please let me know how I could help and any ideas you have. I am definately interested in standing up for myself and for out disease!

Mary

[Nevadan]

I agree in general, but perhaps a more free market approach might work better than seeking a political solution. Look at the Atkins diet and the effects it had on the food industry (e.g. most restaurants now have low carb menu items) and it was based on dubious nutrition principles at best. It might be worth taking a very "marketing" approach and try to pitch the positive effects that a truly gluten-free menu might have. For instance where I live, we have (too) many Thai restaurants competing with one another without much market differentiation - think of the business opportunity if one of those starting focusing on gluten-free menu items (maybe all they need do is a little basic familiarizion with gluten-free issues and then advertise "gluten-free spoken here"). I mention Thai only as an example and because if they are authentic Thai they are generally almost there (gluten-free). I see lots of business opportunites if only we could come up with a good marketing campaign sell the benefits of offering "gluten-free".

Any good marketers lurking around the site?

George

[debmidge]

Sorry to say, what you are describing should be the purpose of the celiac organizations. It takes money to do this type of work. Perhaps CSA and GIG associations should merge and take this on.

Without an already established org I see your idea as follows:

1) Form panels for each activity. Panel for hospitals, panel for doctors, panel for insurance companies, panel for mental & other institutions, panel for FDA complaints, and so on. I can also see a panel for visiting schools (grade, high school and colleges) to speak about celiac disease and it's impact on the teacher's and student's school day. And a panel for contacting restaurants to give out info or even invite the owners and their waiters/waitresses to a gluten-free luncheon (provided by those in org) to taste gluten-free food and discuss celiac disease and how to cook for it.

2) then a written guide for each panel's activities describing how it's to be accomplished. For example, one of the duties celiacs on the Physician's panel (or their significant others) has is to visit the doctors in their area, on behalf of the newly formed org/panel, (such as Primary Care doctors and gastros) to leave brochures and discuss celiac disease with the doctor and staff just like the pharamceutical representative does when he/she leaves their samples wth the doctor.

3) obviously these are unpaid panel positions which will require a person's free time and maybe a vacation day or two from work; travel to DC would be at their own expense; perhaps, however, funding could be tweaked from makers of gluten-free food as in the long run, they too will profit from a stronger gluten-free movement.

4) Think about how a profit making company would go about "getting their product out" and follow their established method. Our product is Celiac Life.

5) Think about how an organization like AARP goes about petitioning the government to change law to provide a better life for Senior Citizens and follow that model for the Celiac Life.

Now if I only had the energy....

[debmidge]

P.S. I can also envision renting a "table" at a street fair and loading it up with brochures (no food, as you wouldn't have insurance for that) and info just to greet people who are at the street fair and to pass celiac disease info out. But the brochures again cost money. Why aren't the local chapters of the celiac disease support groups doing this? Do they just meet to have coffee and gluten-free cake and then go home? Unfortunately, I do not have a celiac disease support group in my area and due to other responsibilities I cannot form one myself; also, I'd probably get the group's officers mad at me because I'd do the street fair idea under their "banner." I'd probably get kicked out.

As it is, I buy the brochures/booklets and give them out on my own and try to talk about celiac disease whenever I can "horn" it into the conversation. Sometimes I think I can be little annoying, but it's for a good cause. Sometimes I think people I speak with are waiting for me to break into a sales pitch for that herbal company (the one that people sell stuff from their home - vitamins and cleaning products). Then they realize I am not "selling" anything, just giving them something to think about.

[perfect010]

I have been thinking about this ever since last night when I posted my other messsage. I think this is the most logical approach to our disease. I think all the time about this and business and how they affect each other. I have two degrees one in computers and the other is in business. I do business consulting and I have also started businesses and sold them for profit. But with all my medical problems I am very low on funds and this makes it hard to start anything, because it would take so much money. I agree though that marketing is the key. We used to laugh about marketing and how you have to really hit people over the head with things before they get it, and good marketing will do that. I too am very verbal about celiacs with those around me. They all know how sick I was for years and now they see me and remark how wonderful I look and I can't help but to tell them about what a change a gluten free diet made for me. Unfortunately there is no support group here where I live either. I am thinking about starting one. Or maybe some kind of an awareness program. (if anyone has any suggestions please let me know.) Also I work with autistic children and I have met a parent or two who has their child on a gluten free diet. But it just erks me the people I know, and even my own family members who feel that celiacs is a bunch of bunk. My own brother suffers so bad and he refuses to believe that celiacs is real, but guess who is on the Atkins Diet. Which is fine if he sticks to the meat and vegetables, but do you realize that if something is low carbs that it means it is LOADED with gluten, you know the protein of the wheat. It makes me sick that he is so sick with many things and he will not listen to me. And believve me he has major symptoms. I am always trying to think of a marketing plan to make celiacs be on the front burner. Here's one that gets me.......people go to the doctors with chronic illness and the dr diagnosis them with fibromyalgia (like I was) or Chronic Fatigue Syndrome, and there is no blood work, no test, only diagnosed by smptoms, and they believe the dr and they refuse to believe in celiacs, a disease that can be confirmed by tests. How do we market something to overcome that? I would love to try and I will do anything if we could somehow ban together and do something about this. Any ideas just let me know, I'm game!!!

[debmidge]

It would be almost impossible to do any of the aforementioned using a chat forum...as we are so spread out.

You can join CSA and start a group near you (they have a stupid rule that you need to be a member in an ongoing group for a couple of years before you can start your own sub-chapter in your area, but it's a stupid rule and I think you can get around that. Perhaps if they met with you or spoke with you to "interview" you to make sure that you know your behind from your elbow when it comes to celiac disease).

When I did Atkins 10 years ago I learned what had hidden wheat and what didn't but I wasn't concerned about gluten (my husband has celiac disease, not me).

But let me think on what would be possible for those in this forum group who are interested.

[Guest nini]

This is an issue that I am most interested in. I went for 34 years being very ill... couldn't afford insurance most of my young adult life, and when I did finally get good insurance through my job, it still took over a year going to Dr.s at least once a week before finding out what was wrong with me. Then I lost my benefits and had to apply for health insurance on my own. Most of the insurance companies I applied with denied me because they said Celiac was a pre-existing condition and at higher risk. I told them they were misinformed, that now that I was officially DX that as long as I adhere to the gluten-free diet, I am healthier than I've ever been and therefore a lower risk. I couldn't understand why they just didn't get it. I did end up finding one company that would cover me without pre-existing conditions (Blue Cross Blue Shield) but they are so freakin expensive it's almost not worth it to have insurance.

I think there needs to be a greater awareness in the medical community so that people aren't just being treated for symptoms ie: fibromyalgia and IBS, and start getting quality care.

The food industry also needs to be made aware that gluten is toxic to NOT A SMALL MINORITY, but actually a MAJORITY of consumers, unfortunately most people who are gluten intolerant or have Celiac are going undiagnosed because of ignorance or political agenda's.

I believe that we can make a difference even if it is one person at a time, educating as many people as we can.

At our local support group meeting the speaker talked about taking the word "confrontation" out of the English language and changing it to educate

[tarnalberry]

Perhaps I'm too apolitical, but I don't see *celiac* as a political issue. Health issurance, absolutely, but that is above and beyond celiac. Even the prevalence of wheat in the foods in the supermarket isn't a political issue, it's a business case. But, like I said, I'm pretty apolitical.

[Guest nini]

Tiffany, I think the reason that it becomes a political issue, is unfortunately because politicians have their dirty little fingers in so many pockets... politicians control lawmakers that make policy regarding the food industry, the pharmaceutical industry, and the medical industry. Too many times you'll hear people say that "so and so wanted to do such and such but their hands were tied" policies set into place by governments affects us in so many more ways than we like to believe. Sure in an ideal world things wouldn't be this way, but they are. So... it's simple, we need to be advocates for everyone with this condition... We need to make people aware of the need of the Celiac community and the greater community that doesn't know that they may have Celiac or be gluten intolerant. Educate everyone you can...

[mytummyhurts]

One main way it is political is the recent FDA (was that the department?) changing labeling rules so that the eight main allergens have to be listed. This will help us a lot as wheat will have to be listed, unfortunately, not gluten though . I really wish that gluten was one of them. Imagine how much easier it would be for us then!

[westiepaws]

Read post below.

[westiepaws]

Oh gosh, just reading a few of these posts, I am wanting to stand up and say, "YES, YES, YES!!!" Two additional groups that also are in the same position are caregivers, particularly younger ones, and people with pancreatic cancer.

I submit that none of this is about politics at all. It is about MONEY. If you have MONEY, you can buy advertising and influence -- and a recommendation for 6-11 servings of grain on the Food Pyramind, yes indeedy! -- which equals power in D.C. and elsewhere. With MONEY, you can *MAKE* it a political issue. That is why the pharmaceutical and health insurance companies have the influence they have in our world today; they are raking in the MONEY and they use it to buy power.

Just look at all that the Susan G. Komen Foundation funds -- I have no idea the worth of that foundation, but there is not a month when they are not marketing something related to breast cancer. Having worked in pr, I can tell you a) their strategies work, and they cost $$$$$$. We know it works because although yes, women still die of breast cancer, plenty of women are diagnosed early and survive for YEARS.

(As opposed to pancreatic cancer -- my late husband's "experimental" treatment was 20 years old in 2002, when he took it as a last-ditch effort to save his life -- 20 years old!!! -- that is appalling.....and it happens because there is no MONEY in that treatment for the pharmaceutical companies, so they won't take it to trial...but I digress)

Given this, I think the best plan would be to expand to include all groups, movers and shakers associated with the Big 8 allergens -- not just gluten/wheat. Let's face it -- plenty of us at this board have multiple food allergies, so even if the gluten/wheat issue were resolved, many of us would still be struggling. As would our friends with only lactose intolerance, and little children who can't get within six feet of a peanut without risking death. Including more groups/people in an alliance means more person-hours, and MONEY to buy power. Not to mention more people who are fired up to volunteer, etc., and more physicians and activists to speak up.

westiepaws

[sarah513]

Westiepaws, I completely agree! (Except I'd add that politics = money!)

[debmidge]

Politics is involved in any venture where there's money and public issues at stake. For the right money, you can get a politician on your side. That politican can make the case for you and garner more support for your issue.

This is called "Special Interests Groups." Almost all "causes" have this: environmental, the disabled, the elderly, etc. It's like having a "Daddy" who'll go to "bat" for you. It's how the system works. Our country is too big for a "lone voice in the wilderness" as you'll get drowned out.

Since celiac disease appears to be rare (in the eyes of politicians, the general public and stupid doctors), and not enough people are diagnosed correctly, it's in the same category as "orphan drugs." It's an "orphan condition". Until the politians get $$ out of supporting it or the number of celiacs increase to an amount that no one can ignore, it'll be a quiet medical condition that no one knows about or even cares.

It's not a "cool" disease where the pharamceutical cos. made a prescription for. No celebrities will admit to having it, but they'll admit to havng Hepititis A or C or having a drug problem. There are no free commercials done from the Ad Council

talking about celiac (like they do for other medical conditions or treatments or problems). I think the "powers that be" say "what's in it for me?" Until there's something in it for them, they are silent.

[ianm]

The biggest problem in getting politicians behind this disease is the fact that there is no pill for it. The only cure is to eat a gluten free diet and live a healthy lifestyle. Since everyone on a gluten-free diet gets healthier they don't need to see a doctor as much or buy prescription medication. Pretty soon the drug companies and medical establishment start losing money because we are healthier. It is simply not something that will be of any benefit to a politician because there's no money in it.

[Guest GITRDONE]

Sarah, your point is very valid. I think we need to start with the MD's(?), they misdx because they are not educated. But who should you educate first-the people or the MD?? Or maybe a even better thought is who is going to be the most receptive?? The educated MD or the person suffering??

These are some of my ideas:

1. Does anyone out there know how to write a grant??

2. With grant money we could produce brochures to make the public aware, those undx cds would demand tests from the MD, which would force them to educate themselves.

3. Walmart would be great place to start, beings they are promoting gluten-free labeling. If every Walmart put up a info board with brochures., you could reach out to many people, low income on up.

I know this seems very basic compared to what everyone else has stated, but is a place to start and would cause awareness. If the public just knew that 1 in every 133 has celiac disease and knew of just a few of the symtoms they would have their MD check it out.

Is there a brochure out there then can be purchased???? And/or is there anyone willing to make one??

This support forum has educated more than any MD or book.Also do they really have celiac conferences for the celiac disease or just the MD's??

Thanks Susan

[Jnkmnky]

Ianm,

I think you are right, in a sense. The people you need to get behind the momentum push for C.D. are the food store owners, food manufacuters, and C.D. customers. Profit is always going to be the catalyst for action. Get the store owners interested in drawing in the C.D. customers, get the food companies interested in snagging the C.D. customers, get the C.D. people writing emails to companies who can provide the gluten free food. Politicians are not interested in C.D. because there is no incentive. Once the need for diagnosis is met, the gluten free diet solves the problem. That problem being solved is to the financial benefit of the FOOD INDUSTRY and the store that sell the foods. Those are the folks we need behind C.D. because they have the most to gain...financially, that is.