In This Day And Age, Why Is Diagnosis Such A Problem?

[Debbie65]

Why is it so difficult to get doctors to acknowledge that there is a disease called ceoliac that if caught early responds very well to dietry changes, what´s the problem?

I was diagnosed 40 years ago and I know from this board that others were diagnosed decades ago too. And yes, lots of us were told that it is possible to grow out of it but I don´t resent this misinformation, I consider it to be part of a learning curve such as exists in most medical conditions.

What makes me angry at the medical profesion is that from what I´ve read here, a lot of them point blank refuse to even entertain the possibility that someone might have this regardless of symptoms and won´t send them for tests- especially in the case of children who have the best chance of complete recovery if the diet is strictly ahdered to.

No wonder a lot of the general population think we´re wacko if the medical folk are slow to acknowledge this condition and how serious things can be if it goes undetected.

[Guest nini]

I have my theories... one being that the medical community makes absolutely NO MONEY off of the gluten free diet (the only treatment for Celiac) and the God Complex. Thinking that because they are Dr's they know EVERYTHING and since they've been taught for years that Celiac is so rare, then it must be so. After all, that's what they've been telling people for years, and they don't want to admit they are wrong.

I applaud the medical Dr.s who are willing to learn new things and willing to accept that as new information presents itself they need to be open to learning. I had one such Dr. and unfortunatly he moved out of town.

[Rikki Tikki]

I have my theories... one being that the medical community makes absolutely NO MONEY off of the gluten free diet (the only treatment for Celiac) and the God Complex. Thinking that because they are Dr's they know EVERYTHING and since they've been taught for years that Celiac is so rare, then it must be so. After all, that's what they've been telling people for years, and they don't want to admit they are wrong.

I applaud the medical Dr.s who are willing to learn new things and willing to accept that as new information presents itself they need to be open to learning. I had one such Dr. and unfortunatly he moved out of town.

DITTO

[queenofhearts]

Well, I must admit to some cynicism about the meds issue. But I find it extremely heartening that the NIH has begun to see the light. They have just begun a campaign to enlighten the medical community. I think we may be living in the last years of the dark ages, & there may be hope for the future.

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Leah

[ravenwoodglass]

In my opinion there are a couple of reasons for this. One is that we have gotten too specialized in our medicine. No doctor looks at the whole person we are now a brain that needs a neuro, joints that need a rheumy, skin that needs a dermo, intestines and stomaches that need a GI guy etc. No one looks at the body as a whole system and celiac is a whole system condition. We are also a Pharmasociety that thrives on instant 'cures' that come by way of drugs and symptom relief but not through the elimination of the problem. If an antiacid stops the tummy pain thats all we care about, if the pill stops the migraine thats what most people want. We see this desire for instant relief especially in people who are newly diagnosed, many doubt the benefit of the gluten-free diet when even after a month they are still having problems. We are bombarded daily every where we look with the 'instant' cures for everything from erections to yeast infections to making sure our kids are quiet and attentive (read in a drugged zone) in school. American doctors want to think that they are much more medically advanced than other countries and for American that means relief TODAY, which translates to our doctors as 'give us more drugs' not to find out what the problem is. In addition the pharmacological companies stand to lose a LOT of money if we are all diagnosed. That won't happen till they find a pill we can take, effective or not.

[elye]

Ditto, ditto, ditto!

The big pharmaceutical companies wield so much power, it is indeed staggering. I will always believe that there is as yet no cure for type one diabetes, a HUGE money-generator for these cartels, because the financial blow would be too great for them. Their control of scientific research funding allows them to pick and choose what gets the most attention and money. Diabetes brings in billions of dollars a year in drugs and supplies, so a cure will not be funded. Money will always flow into the R and D of better test strips, sharper syringes and more diverse insulins...but an actual cure? Don't think so. And celiac, well, no research will be funded there, because there is too much money for the pharmeceuticals in antidepressants, IBS meds, fertility drugs, you name it, prescribed instead of a celiac diagnosis. Some doctors actually get kickbacks from the meds they prescribe. So, some are motivated to stay quiet about celiac, I fear...

[FaithInScienceToo]

Well, I must admit to some cynicism about the meds issue. But I find it extremely heartening that the NIH has begun to see the light. They have just begun a campaign to enlighten the medical community. I think we may be living in the last years of the dark ages, & there may be hope for the future.

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Leah

Thanks for the link - that IS heartening.

[CarlaB]

I think there is a certain protocol for treating illness in medicine due to insurance and malpractice suits. If the doc follows the protocol, he's covered. With a disease like celiac, there are so many varying symptoms, you would have to be creative to even think of it as a possibility.

I went in with classic symptoms and sat there with my head leaning against the wall because I was too weak to hold it up. My GI doc took one look at me, told me it was celiac, then scheduled my biopsy and said he would do another test of the large intestine as there is often another autoimmune disease that goes along with celiac. He seemed very sure celiac was it. The problem was, I was already gluten-free because I had figured out on my own gluten made me sick. I was still doing poorly because I hadn't learned all I needed to know and was still getting a little gluten here and there. I ate a little more gluten for six weeks, but not very much as it made me very ill. The biopsy (he only did three) came out normal. Thus, doc completely wrote off celiac as a possibility. He wanted to start checking my gall bladder. I told him that I felt better gluten-free, he said it didn't matter. I left, went to Enterolab for testing, scored a 60, under 10 is normal. Been gluten-free since the day of my biopsy.

If everything does not fit the protocol, they move onto the next thing. Not all of us fit the perfect scenario.

[Cornhusker]

Well, I must admit to some cynicism about the meds issue. But I find it extremely heartening that the NIH has begun to see the light. They have just begun a campaign to enlighten the medical community. I think we may be living in the last years of the dark ages, & there may be hope for the future.

Open Original Shared Link

Leah

Exactly. Give it time.

[Ursa Major]

Well, it is a significant start, anyway. Most of the information is good and true. There are certain points that irk me, like this information, provided in a box by itself to get attention:

The Web contains information about celiac disease, some of which is not accurate. The best people for advice about diagnosing and treating celiac disease are one's doctor and dietitian.

Plus, when listing what you should eat, they still follow their crazy food pyramid, stating that you should eat 6 to 11 servings of breads, cereals, rice and pasta. Just gluten-free, of course. Starches are still what they (wrongly) consider the most important food, apparently. Vegetables only deserve to be eaten half as often as starchy foods, fruits half of that again, and anything that supplies you with protein (the only thing that gives me personally any energy) comes last. And there even dairy comes before meat and fish. Of course, they still claim that dairy is essential for health.

So, while the info on celiac disease (except the recommendation to ignore the Internet and listen only to your doctor and/or dietician, the most clueless people on earth on celiac disease) for the most part is good, their diet recommendations suck.