How Do We Make This Better?

[cupp125]

Hi Everyone,

I have been thinking about something for a long time, having reached levels of health-related desperation that I never thought I could reach. It took doctors twenty-two years to diagnose me with Celiac Disease. They spent the entire time telling me that I had a "nervous stomach" or that I was just anxious. I kept telling them that I never felt anxious and that my body was telling me that something was wrong. Fast forward to today. In the last two years, I have seen over twenty doctors, trying desperately to find out why I am constantly dizzy, why my heartbeat is so screwed up, and why I can't breathe. I tell them that I have Celiac Disease and that there are many associated issues that I am concerned about. None of them seem to care. Their knowledge of C.D. is limited at best, and what do they tell me....you have high anxiety. My question is how do we raise awareness?

My father attends support groups and recently met a doctor with C.D. who apologized to everyone for the lack of knowledge in the medical community. He said that most doctors are taught that they will probably never see a case of celiac disease and that it is pretty much dismissed in med schools. Now, I don't want to impugn the whole community. I know that there are great doctors out there. I don't want to insult anyone. All I know is that I live in the third largest city in the country and can't get help. My fiancee keeps telling me to keep my chin up and fight it, and I want to. I want to do something to help this situation. But what can we do? How do we advocate for a disease with no cure (and thus no medicine and thus no support from the drug companies)? I feel very hopeless about my celiac disease nowadays, and that worries me.

I was thinking of writing an open letter to send to doctors, pleading for awareness of celiac disease and associated issues. Does anyone think this is a good idea? Any other ideas?

[Jestgar]

I don't think you'll be able to educate the whole medical community. Big organizations are hard to change, and even doctors with celiac disease have a hard time educating there peers.

What you can do is start educating yourself, and try to find a doctor who is willing to learn. As your doctor becomes more aware of how to best treat you, you start recommending him/her to others you meet online, or at support meetings. Then you have helped a small group of people a lot, made your life better, and taught a doctor something he's probably going to impart to his peers during casual conversations.

It's that whole 'pebble causing far reaching ripples' thing.

[kenlove]

When I hear stories like it took them 22 years to diagnose you, I have to feel lucky. It took them only 6 months to figure me out -- 3 years ago. Although there is still an appalling lack of medical community knowledge, I can't help but think it's getting better thanks to the efforts of a few people like your father and the doctor he met as well as Scott and those on this forum.

Seems to me that those of us diagnosed later in life, 50's in my case, have an obligation to spread the word. In a sense we need to think of our disease as a badge of honor and not something that should cause us to crawl in a hole and hide.

Open letters to doctors, restauranteurs and others are always helpful in building awareness as is working with the local media.

We were able to get the honolulu newspaper to do a story which in turn brought out a number of closet celiacs who are now expressing their thoughts and opinions locally. All in all overall awareness seems to be improving.

Ken

Hi Everyone,

I have been thinking about something for a long time, having reached levels of health-related desperation that I never thought I could reach. It took doctors twenty-two years to diagnose me with Celiac Disease. They spent the entire time telling me that I had a "nervous stomach" or that I was just anxious. I kept telling them that I never felt anxious and that my body was telling me that something was wrong. Fast forward to today. In the last two years, I have seen over twenty doctors, trying desperately to find out why I am constantly dizzy, why my heartbeat is so screwed up, and why I can't breathe. I tell them that I have Celiac Disease and that there are many associated issues that I am concerned about. None of them seem to care. Their knowledge of C.D. is limited at best, and what do they tell me....you have high anxiety. My question is how do we raise awareness?

My father attends support groups and recently met a doctor with C.D. who apologized to everyone for the lack of knowledge in the medical community. He said that most doctors are taught that they will probably never see a case of celiac disease and that it is pretty much dismissed in med schools. Now, I don't want to impugn the whole community. I know that there are great doctors out there. I don't want to insult anyone. All I know is that I live in the third largest city in the country and can't get help. My fiancee keeps telling me to keep my chin up and fight it, and I want to. I want to do something to help this situation. But what can we do? How do we advocate for a disease with no cure (and thus no medicine and thus no support from the drug companies)? I feel very hopeless about my celiac disease nowadays, and that worries me.

I was thinking of writing an open letter to send to doctors, pleading for awareness of celiac disease and associated issues. Does anyone think this is a good idea? Any other ideas?

[happygirl]

NIH launched an awareness campaign among medical professionals because of many of the problems you described. Use this info to educate your doctors.

campaign: Open Original Shared Link

press release: Open Original Shared Link

NIH consensus statement: Open Original Shared Link

There is a lot of research going on right now, regarding ways to break down the gluten protein and ways to prevent the autoimmune reaction from occurring.

[debmidge]

The Celiac Sprue Assn. has a "doctor" packet which I don't recall if they send to a doctor or you buy it from them and send it to the doctor. The packet contains up to date info especially written for doctors.

The problem is: would a doctor have the time and inclination to read it?

[ravenwoodglass]

I have wondered about how to educate them as well. My feeling is the AMA should step in and help things change.

I have often wondered what would happen if a bunch of us late diagnosis folks, the ones still well enough to travel, got up in front of congress with 2 piles of records, pre and post diagnosis.

I don't know about the rest of us but I know I have a distinct difference in the number of doctor visits and tests I have had since diagnosis. My pre pile contains hundreds of pages and if you throw in all the test results the pile is even higher. My post diagnosis pile is less than 20 sheets, in five years, including test results. How much money is being wasted by them not diagnoseing us? It comes to billions I am sure. With all the talk about reducing med costs and the lack of insurance for many the only thing that will get things changed is some sort of shock that would really wake things up.

I really don't think things are going to change until there is a drug they can push though.

[debmidge]

I have wondered about how to educate them as well. My feeling is the AMA should step in and help things change.

I have often wondered what would happen if a bunch of us late diagnosis folks, the ones still well enough to travel, got up in front of congress with 2 piles of records, pre and post diagnosis.

I don't know about the rest of us but I know I have a distinct difference in the number of doctor visits and tests I have had since diagnosis. My pre pile contains hundreds of pages and if you throw in all the test results the pile is even higher. My post diagnosis pile is less than 20 sheets, in five years, including test results. How much money is being wasted by them not diagnoseing us? It comes to billions I am sure. With all the talk about reducing med costs and the lack of insurance for many the only thing that will get things changed is some sort of shock that would really wake things up.

I really don't think things are going to change until there is a drug they can push though.

One would think that the health insurance industry would have a "vested" interest in this...

[flourgirl]

I agree about the insurance industry. They have a lot of influence on healthcare and how it is handled. It surely would save the insurance companies tons of money if Celiac became a standard test, like cholesterol, mamograms, thyroid....any number of things that are common. They could avoid paying for years of useless tests if doctors had an awareness as to how common this is, what to look for. Even if they didn't have a "list of symptoms" to go by....which would be long and impossible, if it were a standard test (blood test), and if endoscopy were done right along with colonoscopy the nation as a whole would be a lot healthier (or at least have the knowledge and option to be) and we'd see a great reduction in the costs of healthcare for all of us "crazies....whose illness is all in our heads". Maybe it's something worth considering?!?

[Jestgar]

I saw a paper one time wherein they evaluated the cost effectiveness of testing every member of a diagnosed Celiac's family (as they do in Italy). The conclusion was that it would save the insurance companies and the health care system money, bur just a little. This was at least a year ago and nothing has changed.

Since doctor's teach each other, all the guidelines in the world aren't going to make a difference until they start believing in them. Make your own doctor believe in you.

I think ravenwood's idea is a great one, but do it in front of the insurance companies, not the doctors.

You could compile a list of all the charges sent to insurance pre- and post- and mail it to the CEO/CFO/CMO any C*O you can think of at the insurance companies. Since their bottom line is money, and you've pointed out that testing would save money, they might be more inclined to listen.

[gfp]

The Celiac Sprue Assn. has a "doctor" packet which I don't recall if they send to a doctor or you buy it from them and send it to the doctor. The packet contains up to date info especially written for doctors.

The problem is: would a doctor have the time and inclination to read it?

This sums it up .... (IMHO)

Firstly if you have to buy it .. not the cost but because that makes it seem like someone is making something from it... note I said SEEM .. because they are probably just covering costs but its how it seems ... someone has something to sell but that product doesn't offer any return in terms of income for the Dr.

(cynical I know)

Secondly the reading part ... again what does it gain the DR ? This again seems cynical until you look at th rest of the stuff MD's get sent to read .... well funded campaigns from pharmacutical companies with tangible kickbacks.

MD's are just people, most have a life outside of long hours, if they are going to ead something then they will usually read something that pay's them...

don't know about the rest of us but I know I have a distinct difference in the number of doctor visits and tests I have had since diagnosis. My pre pile contains hundreds of pages and if you throw in all the test results the pile is even higher. My post diagnosis pile is less than 20 sheets, in five years, including test results. How much money is being wasted by them not diagnoseing us? It comes to billions I am sure.

IMHO the emphasis has got to be about money ... this is what controls the politics of centralised medicine and the economics of private medicine. MD's have nothing to loose by not diagnosing ...

Debmidge's signature perhaps sums this up ?

The problem IMHO is this needs not be about personal gain or even some assoc. because it seems all these associations end up with admin, admin takes staff etc. and they end up being a business not a charity.

If something could be done with 100% volunteers (including lawyers) and then MD's and state health were sued and the money put back into awareness then it would make the most impact ??

[cupp125]

My apologies for not responding to all of your great replies sooner--unfortunately, I'm still dealing with some very, very frustrating health problems (ironic, no?). I think that everyone raises great points. Doctors probably won't have (or take) the time to read literature provided to them (which just gave me a good idea--I'll type it up in a second), and yes, unfortunately right now money and drug companies control the medical community. I won't get into a rant on that and how horrible it is, but I really, really feel that patients with rare or tough to diagnose diseases are being given less than acceptable medical treatment. I can't shake the burning urge to do something about it and fight this, but when you take on something like this you are taking on a lot of money and a lot of people who don't want things to change. One of my biggest disappointments since finding out I had celiac disease is the oversaturation of (very helpful and wonderful) information on recipes, food brands, etc. and the lack of information on the other things, the problems with doctors who don't know anything about it, the severe emotional distress of not being able to get help when you really need it, etc. Anyway...to my idea:

We know that we probably can't change the way most doctors think about celiac disease because they just weren't trained to look for it. What if we went after the medical schools? What if we sent literature and letters...or petitions, to medical programs across the country, asking, pleading with them to educate future doctors on celiac disease and associated conditions and complications. I don't know how much influence the drug companies have over these programs, but I would think that this would be the place to go. Maybe we can't get great help from the current generation of docs, but what if we could help usher in a new generation of very well educated doctors fresh out of med schools that spend more than a half an hour on celiac disease?

Thoughts?

- Colby

PS - I hope you'll forgive me if my tone is a bit...bitter. Part of it I'm sure is the difficulty in conveying tone through typed, online things, but the larger part is my frustration with being sicker than I have ever been and not being able to get even a glimmer of an answer. I lost my job this week because of it, and I'm concerned that I won't be able to get back to work soon. More than anything, I'm worried because I'm getting married in six months and I can't believe with any confidence right now that I'm going to be healthy. I'm a little upset with the twenty-some odd doctors I've seen in the last few months.

[Jestgar]

We know that we probably can't change the way most doctors think about celiac disease because they just weren't trained to look for it. What if we went after the medical schools? What if we sent literature and letters...or petitions, to medical programs across the country, asking, pleading with them to educate future doctors on celiac disease and associated conditions and complications. I don't know how much influence the drug companies have over these programs, but I would think that this would be the place to go. Maybe we can't get great help from the current generation of docs, but what if we could help usher in a new generation of very well educated doctors fresh out of med schools that spend more than a half an hour on celiac disease?

The kids learn the basics in med school, but then they spend four years in residency where their practical education is dictated by the older physicians teaching them. I don't think starting from the ground and going up will work in this structure. You've got to convince the existing docs and count on them to pass on their knowledge.

While there are docs that choose medicine for non-altruistic reasons, there are also a lot that truly want to help people. My personal experience has been that gps tend to be more caring than specialists, but everyone here has had there own experiences.

[CeliBelli]

PS - I hope you'll forgive me if my tone is a bit...bitter. Part of it I'm sure is the difficulty in conveying tone through typed, online things, but the larger part is my frustration with being sicker than I have ever been and not being able to get even a glimmer of an answer. I lost my job this week because of it, and I'm concerned that I won't be able to get back to work soon. More than anything, I'm worried because I'm getting married in six months and I can't believe with any confidence right now that I'm going to be healthy. I'm a little upset with the twenty-some odd doctors I've seen in the last few months.

Colby, I see you are in Chicago. Have you been to the University of Chicago Celiac Disease Center? (Open Original Shared Link) I have seen several different references to it, and they are supposed to be addressing just the problems you raise.

Also, if you want to get this problem some high-profile attention, you might write up your story and send it to Oprah. She is based in Chicago, and no one can put a public spotlight on something like she can. This problem might just peak her interest - especially with such a compelling human interest story as yours. It's worth a try.

[gfp]

My apologies for not responding to all of your great replies sooner--unfortunately, I'm still dealing with some very, very frustrating health problems (ironic, no?). I think that everyone raises great points. Doctors probably won't have (or take) the time to read literature provided to them (which just gave me a good idea--I'll type it up in a second), and yes, unfortunately right now money and drug companies control the medical community. I won't get into a rant on that and how horrible it is, but I really, really feel that patients with rare or tough to diagnose diseases are being given less than acceptable medical treatment. I can't shake the burning urge to do something about it and fight this, but when you take on something like this you are taking on a lot of money and a lot of people who don't want things to change. One of my biggest disappointments since finding out I had celiac disease is the oversaturation of (very helpful and wonderful) information on recipes, food brands, etc. and the lack of information on the other things, the problems with doctors who don't know anything about it, the severe emotional distress of not being able to get help when you really need it, etc. Anyway...to my idea:

We know that we probably can't change the way most doctors think about celiac disease because they just weren't trained to look for it. What if we went after the medical schools? What if we sent literature and letters...or petitions, to medical programs across the country, asking, pleading with them to educate future doctors on celiac disease and associated conditions and complications. I don't know how much influence the drug companies have over these programs, but I would think that this would be the place to go. Maybe we can't get great help from the current generation of docs, but what if we could help usher in a new generation of very well educated doctors fresh out of med schools that spend more than a half an hour on celiac disease?

Thoughts?

- Colby

PS - I hope you'll forgive me if my tone is a bit...bitter. Part of it I'm sure is the difficulty in conveying tone through typed, online things, but the larger part is my frustration with being sicker than I have ever been and not being able to get even a glimmer of an answer. I lost my job this week because of it, and I'm concerned that I won't be able to get back to work soon. More than anything, I'm worried because I'm getting married in six months and I can't believe with any confidence right now that I'm going to be healthy. I'm a little upset with the twenty-some odd doctors I've seen in the last few months.

Colby, your written style is excellent; truly a joy to read. Perhaps this should be your tool of choice?

I really mean this, you come across as frustrated not bitter and this is IMHO perfectly in line with what you are saying and have to get off your chest. It truly adds a passion to your communication and perhaps THAT can make a difference?

when you take on something like this you are taking on a lot of money and a lot of people who don't want things to change

My turn to sound bitter I guess.

Its a lot of money but its not so many people don't ant things to change.

The real problem is its a lot of money and a lot (the vast majority) of people who don't care for things to change or even change in itself.

When a relatively few people have a lot of money and something they wish to keep as it is they have a relatively simple task. They simply need to convince the masses that nothing needs to change and that the consequences for them if things do change might possibly perhaps (yes deliberate use of vagueness) adversly affect them even in a small way.

For most, the energy required to change something is outweighed by the inertia not to change.

In other words is easier to spread misinformation or selective information for a group of wealthy interested parties than it is to counter those claims or put them in context.

The kids learn the basics in med school, but then they spend four years in residency where their practical education is dictated by the older physicians teaching them. I don't think starting from the ground and going up will work in this structure. You've got to convince the existing docs and count on them to pass on their knowledge.

While this is true perhaps a two pronged approach would also work...

If the internees learn this and it is then later reinforced then perhaps that will also help?

There are thankfully as you say plenty of doctors who actually want to help people and make them better....and of course the descision to become a specialist is often financially based not alturistic.

However, the biggest impediment I see is the need to "tow the line". We can discuss the biopsy standard which is to me similar to the h. pylori story.

The h. pylori story is quite well documented as it is one of those that things actually went right... but history of course has a strong bias towards the victors... and history is written by those with the money and power to put the spin into the accepted history. Perhaps if things go well then in ten years the biopsy standard will seem as archaic as ulcers being uncurable?

With h.pyloti, Warren and Marshal had very good clinical evidence that h. pylori caused ulcers and could be cured by very cheap antibiotics. However the drug companies had chosen ulcers as a high income area. Most patients suffer for a long time and they glaxo-welcome spent a huge amount developing ranitidine as a way to have patients with a long term uncurable dependence on their drug which could be made for cents and sold for dollars.

Ulcers rarely kill, they ruin lives and can kill but statistically most of their patients (or users is perhaps a better term) would live long, dependant lives.

Warren and Mitchel threw a spanner in the works.. they made the incurable curable and by a drug who's patent had long expired and cost cents...

What happened was complete ridicule by the medical community. Glaxo paid MD's and GI specialists to write in .. they paid teams of investigators to dig up dirt on their private lives and families and even paid thugs to intimidate them and threaten the lives of their families. Meanwhile the medical journals were blackmailed that they would withdraw advertising if any page inches were given to anything positive regarding h. pylori.

It seems impossible that glaxo did not have the money to do a clinical trial, lets face it Marshal did one on himself, instead they just paid to have any clinical trials not printed.

Meanwhile government organisations like the FDA had employees bribed to prevent any clinical trials. There is no other explanation as to why a cure for an illness affecting hundreds of millions with a drug that cost cents was not made. How could this trial using a common antibiotic that was used for many other illnesses not be made... there was no risk .. no risk to the patient (so long as they were not allergic to amoxicillin which is easily screened) yet the FDA was told that it would not permit the use of antibiotics to treat ulcers and did as it was told.

As mentioned previously, what of the insurance companies? Surely it was in their interest to have their expensive long term patients treated ....??? You have to wonder if they were not paid off? Ranitidine was the most expensive drug marketing EVER... (after it as conclusively proven that antibiotic actually worked)...

It is still used by Harvaard as a near perfect marketing scheme down to the choice of color of packaging and the flooding of doctors with promotional material ....

Brilliant marketing that killed hundreds of thousands and the drug companies were quite happy to lose these client so long as they had a steady flow ... from their perspective its better a client lives in pain for 10 years before an ulcer bursts and kills them than they are cured in two weeks!

Anyway ... this is what you are up against.... the wheat industry pours money into lobbying... they have a product with 50% waste that can be used... if we question that then farmers will go out of business, a new ice age will happen and aliens will invade???? Well perhaps .. but how do you prove not to the masses?

Strangley enough the h. pylori testing was done in a country with no domestic drug company making acid uptake inhibitors.. would the USA or UK EVER have made this?

Somehow I doubt it, we would have jst forgotten about it by now.

[cupp125]

Colby, I see you are in Chicago. Have you been to the University of Chicago Celiac Disease Center? (Open Original Shared Link) I have seen several different references to it, and they are supposed to be addressing just the problems you raise.

Also, if you want to get this problem some high-profile attention, you might write up your story and send it to Oprah. She is based in Chicago, and no one can put a public spotlight on something like she can. This problem might just peak her interest - especially with such a compelling human interest story as yours. It's worth a try.

I actually have been to the University of Chicago's Celiac Disease Center; however, my experience with it has basically been seeing a GI doctor who is part of their staff. It was very nice to not have to explain what celiac disease is to her, and she knew to check for other Autoimmune things right off of the bat; but beyond that it wasn't really a tremendous help. I think this is less a fault of theirs and more a result of the fact that my current health problems, though they may stem from years of undiagnosed celiac disease, are not directly related to my intestines. I've been travelling to their facility (which is in an...unpleasant part of town) a few times a week (two trains and a bus---about an hour and forty five minutes via Chicago's a-w-f-u-l public transportation) to see my doctor their and some dermatologists who finally, finally agreed to test me for DH after I basically had to demand it.

It's funny you bring up Oprah, which by the way is a great idea, and I think I will try to submit something to her. Honestly, I think that more needs to be done to get awareness out there. That is to say beyond a thirty second spot on the View. Nobody cares about us, and we have to start demanding better care. Anyhow, the reason I say it's funny you bring it up, is that my father and stepmother keep urging me to send my case to the writers of "House" or "ER." I think trying to get Oprah to care about this is a great idea, and I'll do my best and get to work on that ASAP. Also, I'm a writer (and a professor currently unable to work because of my health problems), and I'm thinking of writing a memoir/collection of essays about celiac disease, living with it, and my struggles with the medical community. I know the world needs another celiac disease book like it needs a hole in the head, but my feeling is that, having read most of them, the focus in all celiac disease sites, books, etc. is on recipes, how to eat, where to eat, what to cook, how to not be sad about not having bread....nobody seems to be taking on the other side of the disease, which is the frustration of doctors looking at you like you're crazy, being reduced in conversations with most new people to the guy/gal with the weird food thing (it's ALL people want to talk about when they meet me, which is great, but my goodness, I'm a human being with many other very interesting things about me), the way it affects family life, dating, working...all of this combined with my experiences of getting very, very sick and the torture of navigating doctors who don't know how to treat me because the drug companies aren't invested. I want to write this, but my concern is, if I do (take time away from my fiction, which is very important to me), will it be something that people would find helpful? I guess what I'm saying is, it would have helped me to read something like I'm planning, but would it help others? Writing a book takes a long time and a lot of work, and if I'm going to attempt this, I want to do it full steam.

That's way, way off topic though, but your response started to reenforce the little spark that was forming already from all these months of frustration--I'm just not the type of person who can see a problem and say, "that sucks, but it'll get fixed." I always teach my Philosophy students that if something bugs them, DO SOMETHING ABOUT IT. Yep, the drug co.s have all the money and the influence, even the wheat lobbyists, all of these people have more to work with, but is that not true of any other situation in history that eventually got fixed? I'm cooking up some ideas to get this turned around. This forum is a great place to talk to others and really bounce ideas around. I'm tired of nobody knowing what's wrong with me. I can't deal with that any more.

[dbmamaz]

I think you come closest to the truth. The drug companies own our health. Most of the education doctors get once they leave med school comes from drug reps. the drug companies hire intelligent beauty queens (really) to be their sales reps, and they give them tons of education - on what they want them to know to sell their drugs. the drug companies can fund anything . . . they get a lot of money out of IBS meds, they get no money off of a gluten-free diet. The biggest player in the medical field is the drug companies.

Now, I think we could perhaps learn something from the autism community. They have raised awareness and raised awareness and raised more awareness, and I think the message is starting to get through. I agree a story on Oprah would be great - several good-looking celiacs who were very sick for years and went through several doctors would probably have the biggest impact. Obviously, they need to be actually dx'd, too, and they need to be fairly healthy on the diet. Remember, this is propaganda .. .

anyways, it does make me sick that the links above say that every IBS patient should be tested for celiac, and so many doctors prety much refuse.

[bareden]

I feel exactly the same way. I have been thru years of suffering and many many doctors. I decided on my own to see an internist about a minor issue I was having in hopes she could possibly give me some answers. Sure enough she diagnosed me. This week I took my youngest two sons to the dr and I asked for them to be tested. She did not think it was important. My 16 year old has all the same gastro symptoms and headaches as I have had but she said he must have irritable bowel. Please! I am paying for this-just test him! I still have not found a doctor with much knowledge on Celiac.

[Jestgar]

While this is true perhaps a two pronged approach would also work...

If the internees learn this and it is then later reinforced then perhaps that will also help?

every person educated makes a difference

[pele]

Can I bring a new thought to this very interesting thread?

What about the financial interests of big Agri business and the food industry? White flour, IMHO, is a "food substitute" along with sugar, coffee and tobacco which have been referred to as food substitutes used to give the working class enough energy to perform poverty level jobs that funnel ever more money to the rich and powerful.

The food pyramid apes the pyramid of social hierarchy. Social hierarchy exists only because of cheap, storable grain, according to widely accepted anthropological theory. Without food storage we would all be out there everyday hunting or gathering roots and nuts.

Wheat is a commodity with strong economic and political significance. Any economist can tell you that US grown, taxpayer subsidized wheat has been used for generations to destroy local food economies, ruin small farms and force laborers to seek low paying jobs in factories, Mexico after NAFTA, for example.

Think for a few minutes about what would happen if everyone who has anti-glliadin antibodies quit eating wheat. And if everyone with difficulties digesting other grains quit eating them.

My apologies for veering off the doctor topic. And I apologize for sounding opinionated. I have a degree with minors in Anthropology and Economics and this kind of thing was the focus of my studies. Since discovering my own gluten intolerance I have thought about this a lot and wanted to get it off my chest. I haven't seen another place on this forum that seemed appropriate. The comments on this thread indicate to me that people are very frustrated with the lack of recognition of celiac disease, let alone gluten intolerance. Financial interests of the medical and pharmaceutical communities are only a piece of the puzzle.

Comments?

[CeliBelli]

I'm thinking of writing a memoir/collection of essays about celiac disease, living with it, and my struggles with the medical community. I know the world needs another celiac disease book like it needs a hole in the head, but my feeling is that, having read most of them, the focus in all celiac disease sites, books, etc. is on recipes, how to eat, where to eat, what to cook, how to not be sad about not having bread....nobody seems to be taking on the other side of the disease, which is the frustration of doctors looking at you like you're crazy....all of this combined with my experiences of getting very, very sick and the torture of navigating doctors who don't know how to treat me because the drug companies aren't invested. I want to write this, but my concern is, if I do (take time away from my fiction, which is very important to me), will it be something that people would find helpful? I guess what I'm saying is, it would have helped me to read something like I'm planning, but would it help others? Writing a book takes a long time and a lot of work, and if I'm going to attempt this, I want to do it full steam...I always teach my Philosophy students that if something bugs them, DO SOMETHING ABOUT IT. Yep, the drug co.s have all the money and the influence, even the wheat lobbyists, all of these people have more to work with, but is that not true of any other situation in history that eventually got fixed?....I'm tired of nobody knowing what's wrong with me. I can't deal with that any more.

Colby,

The celiac community clearly needs articulate voices with the skill to analyze and express the needs and challenges we face. You ask whether writing a book would be worth the time and effort. The more important questions to ask are 1) what is your objective and 2) what are the best routes to achieve that objective? While a book might be of interest to other celiacs, you have to assess whether it would get the attention of those who make decisions about health care diagnosis and treatment. The challenge is to shift the balance of power on this subject away from Big Pharma and Big Agra, which as Pele rightly points out, hold the medical community in a vise grip.

What we need is awareness raised quickly on a mass scale among the public at large, health care professionals, the insurance industry and Congress. Raising broad awareness among the public will help build a groundswell of people demanding proper diagnosis and treatment for themselves and their families. Raising awareness in the insurance industry and Congress of the massive costs of untreated celiac disease will shift the economic motivations of the health care professionals as new best practices begin to emerge for how to deal with this disease.

How best to accomplish such a pincer approach? Submitting a plot idea to "ER" is a good one. They often address critical health issues (I don't follow "House," so I cannot speak to it). Oprah owns the biggest megaphone in the country. Getting her to shine light on the shame of this situation and champion this cause would catapult it to national attention.

You also have another potential secret weapon at your immediate disposal. You have in Illinois a rather well-known U.S. Senator who is an outspoken champion of health care reform. Gather some fellow celiacs and make an appointment with the staff in his local Senate office. Sit down with them and share your most compelling stories. Emphasize to them how the upside down priorities of the health industry are causing not only untold pain and suffering to millions of Americans, but a phenomenal economic burden on health insurers and Congress from the entirely avoidable costs of treating the complications of untreated celiac disease and its related illnesses.

Finally, consider using your writing skills to publish short essays and articles in newspapers and journals in key media markets which serve the decision-makers we need to influence. This will be less time consuming than a book, and needn't take away from your other writing. Start easy with a piece on your personal experiences for the health section of the Chicago Tribune, which your Senator's office and the folks at University of Chicago will read. Then, work up some well-researched pieces for the Boston Globe (Harvard University market), the New York Times (everyone reads it, including insurance company executives), and the Washington Post (Congress reads it).

Of course, you cannot do this alone. This is going to take many of us reaching out to as many resources as we can. But we must do it, because none of us can let this situation go on as it is.

[ravenwoodglass]

I recieved this email from IFFGD a few days ago. If they can address I B(e) S(tumped) to congress perhaps we can bring the real cause for many of us of IBS to the forefront the same way? They also gave me the names and contact numbers for my legislators to contact them on the issue. Now might be the time to write some letters to our congresspeople. It also might not be a bad idea for us to contact IFFGD and tell them about our experiences with the IBS diagnosis and the resulting dismissal of our symptoms from then on by doctors. Perhaps our experiences can help them help others.

"A Message From The International Foundation for Functional Gastrointestinal Disorders:

Your voice counts

[CeliBelli]

I recieved this email from IFFGD a few days ago. If they can address I B(e) S(tumped) to congress perhaps we can bring the real cause for many of us of IBS to the forefront the same way?

Excellent! My thoughts exactly. Although, if the IFFGD has made IBS their cause celebre, they may not be interested in being the champion for a group of people who think IBS is an overused copout. We may wish to engage the folks at one of the celiac groups, such as the Celiac Disease Foundation. May is Celiac Disease Awareness Month. Perhaps we could instigate a letter campaign during the month of May?

[Guest lorlyn]

In our support group our leader had a volunteer make a bunch of flyers and she personally takes them to GI Doctors and ask if she can leave them on the tables where the patents can pick them up and read them while they wait. Also she goes to different resturaunts and have them prepare gluten free foods and then our group will go there for a dinner meeting, She does a execellent job on getting the info in Doctors offices and educating the local resturants