CeliBelli

The item above on MyStarbucksIdea.com has received a score of over 6,880 points and has 317 comments as of this writing, and is now listed as "Under Review." Please keep the pressure on by voting for this item. Also, weigh in with a comment and answer Starbucks' question about exactly what types of gluten-free products you crave.

Here's the link again to the Starbucks website where you can vote:

Open Original Shared Link

  ravenwoodglass said:

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?

  cupp125 said:

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.

  cupp125 said:

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.

I agree with Gemini, you are not wrong. More questions need to be asked, and a second opinion obtained. If this is not celiac disease, then what is the doctor's diagnosis of the inflammation? If they cannot answer that, then they have not taken this far enough. At minimum the child should tested to check for the antibodies to gluten, and for the genetic markers for celiac disease. So should the family members who abstain from gluten. This can be done with a simple two-in-one blood test. At minimum the child's parents, grandparents and siblings should be tested.

If any of them test positive, it adds substantial weight to the likelihood the problem is celiac disease. If none of the testing indicates celiac, and the pathology report does not indicate celiac, then the family definitely needs a clear alternative explanation and treatment plan. The risks to a child that young exhibiting celiac symptoms are serious and need diagnosis.

You don't say what type of doctor made the comments you reference. Are they a gastroenterologist? If not, the family needs to find one - a good one - experienced in pediatrics.

Good luck!