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JerryK

How Do Doctor's View Celiac?

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As I posted on one of the other forums, I'm interested in exploring Celiac Disease as a possible cause

of my severe Enamel Hypoplasia. At age 40 I had to have ALL my teeth crowned, because there was no enamel left and I would soon have nothing left to eat with. In like 10 years my teeth went from being granite hard, to soft. I have mile gastro symptoms which could be attributed to celiac disease...who knows.

What I'm interested in knowing is...if I go to my doctor and suggest this as a possiblity are they going to

think I'm nuts? Does medicine view celiac disease as a real illness, or do they think of it more as a quack diagnoses?

To look at me, you'd think I look healthy and for the most part I feel pretty well. I do have episodes of

gastro illness, my family always know's to take immodium where ever they take me. But it's not like I'm sickly and malnourished looking or anything like that.

I do however have severe Enamel Hypoplasia and so does my identical twin brother.

Any thoughts? Is the chance that I have celiac disease enough that I should insist on being tested?.

Thanks, Jerry

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Doctor's know that celiac disease is real. It's certainly not an issue like was the case with fibromylagia five years ago, or even now. Certainly not an issue like systemic candida.

The problem is that most doctor's don't know how common it is (incidence in the general population is 1 in 133) or that it presents in such varying ways.

None of that matters, however. It only matters what *your* doctor thinks.

So tell us about your doctor.

Male/female?

Young/old?

Where did he/she go to school?

What is his/her specialty?

What is his/her bedside manner?

How has he/she treated your GI problems in the past?

How have your physicals gone in the past?

The idea here is to get a feel for if you have 'a stodgy old doctor who does everything by the book - the published in 1950 by the AMA book' or if you have 'a doctor who learned how to think about the whole human body and continues to learn what medicine has to offer every day'.

Because it doesn't matter what doctors think as a whole, but what your doctor thinks, and then psyching yourself up to get tested already. :P Because yes, you should get tested. :P

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Doctor's know that celiac disease is real. It's certainly not an issue like was the case with fibromylagia five years ago, or even now. Certainly not an issue like systemic candida.

The problem is that most doctor's don't know how common it is (incidence in the general population is 1 in 133) or that it presents in such varying ways.

None of that matters, however. It only matters what *your* doctor thinks.

So tell us about your doctor.

Male/female?

Young/old?

Where did he/she go to school?

What is his/her specialty?

What is his/her bedside manner?

How has he/she treated your GI problems in the past?

How have your physicals gone in the past?

The idea here is to get a feel for if you have 'a stodgy old doctor who does everything by the book - the published in 1950 by the AMA book' or if you have 'a doctor who learned how to think about the whole human body and continues to learn what medicine has to offer every day'.

Because it doesn't matter what doctors think as a whole, but what your doctor thinks, and then psyching yourself up to get tested already. :P Because yes, you should get tested. :P

Unfortunately I belong to the infamous Kaiser Permanente HMO, and I don't know if they'll view celiac disease as something real, or just a fad diagnoses. They don't like to pay for anything they don't deem medically necessary and I certainly look healthy, so why should they bother with this? The only thing I have in my favor is I can point out this severe enamel hypoplasia and tell them my dentist suggested it (celiac disease) as a possibility.

My doctor is a woman...she seems o.k., but I don't really know her that well. Most HMOs will not do anything for you, especially if you are a healthy looking male, unless you are half dead. Sorry if that offends anyone, but it is my experience.

I may have to go to a private physican to be tested. Should I try a naturopath?

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Unfortunately I belong to the infamous Kaiser Permanente HMO, and I don't know if they'll view celiac disease as something real, or just a fad diagnoses. They don't like to pay for anything they don't deem medically necessary and I certainly look healthy, so why should they bother with this? The only thing I have in my favor is I can point out this severe enamel hypoplasia and tell them my dentist suggested it (celiac disease) as a possibility.

My doctor is a woman...she seems o.k., but I don't really know her that well. Most HMOs will not do anything for you, especially if you are a healthy looking male, unless you are half dead. Sorry if that offends anyone, but it is my experience.

I may have to go to a private physican to be tested. Should I try a naturopath?

First, yes, the entire medical community does accept that celiac disease is definitely a real condition. There is absolutely no question that it is a real condition. The condition was identified decades ago. The genes have been isolated for the majority of cases. And the basic etilogy is known. The prevalence, presentation, and good diagnostic testing is the only 'controversy'. You really don't have to worry that they'll think you're making up a disease.

Second, well, given that you have this insurance, I would go this path first. But I say that being someone who, on the spectrum of easter-western medicine, may appreciate eastern medicine and what it has to offer, also has regular visits with my western medicine doctors. :)

I'm not sure where you're located, but I know that Kaiser, and the doctor's you tend to get in Kaiser vary geographically. (I grew up in an area with a heavy Kaiser representation - and a not so good Kaiser reputation - and my inlaws and other people I know have Kaiser in a few different areas.) The fact that you imply that you're able to see a primary, rather than get bounced around to whoever-the-heck is available is actually a good sign in your favor, and the fact that she's female is a good sign, statistically speaking.

You didn't mention her age, but this actually plays a big role, as the education in the medical schools and continuing education on the subject, and the whole body connection has changed a lot - as has the 'the doctor is god' approach. If she's in the 'under 40' category, your chances are higher, but that's not to say that if she's older than that, you don't have a decent chance either. (The gender difference, according to studies on how doctors interact with and treat patients, is a bigger factor than age difference, by far.)

The fact that your dentist (another health professional) is recommending you get tested, is a HUGE gun in your back pocket. So I *strongly* encourage you to make an appointment with your doctor with that, but go in prepared. List (on paper, don't rely on your memory) any other symptoms that are commonly related to celiac disease. Don't go pulling out ones that are sometimes related or that are anecdotally related - they might be, but you're trying to earn the respect of your doctor and get her to listen, so you have to target your information for your audience very carefully. Focus on those gastro symptoms. (What you think of as 'mild' may actually be more telling than you think.)

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Well, given that you have this insurance, I would go this path first. But I say that being someone who, on the spectrum of easter-western medicine, may appreciate eastern medicine and what it has to offer, also has regular visits with my western medicine doctors. :)

I'm not sure where you're located, but I know that Kaiser, and the doctor's you tend to get in Kaiser vary geographically. (I grew up in an area with a heavy Kaiser representation - and a not so good Kaiser reputation - and my inlaws and other people I know have Kaiser in a few different areas.) The fact that you imply that you're able to see a primary, rather than get bounced around to whoever-the-heck is available is actually a good sign in your favor, and the fact that she's female is a good sign, statistically speaking.

You didn't mention her age, but this actually plays a big role, as the education in the medical schools and continuing education on the subject, and the whole body connection has changed a lot - as has the 'the doctor is god' approach. If she's in the 'under 40' category, your chances are higher, but that's not to say that if she's older than that, you don't have a decent chance either. (The gender difference, according to studies on how doctors interact with and treat patients, is a bigger factor than age difference, by far.)

The fact that your dentist (another health professional) is recommending you get tested, is a HUGE gun in your back pocket. So I *strongly* encourage you to make an appointment with your doctor with that, but go in prepared. List (on paper, don't rely on your memory) any other symptoms that are commonly related to celiac disease. Don't go pulling out ones that are sometimes related or that are anecdotally related - they might be, but you're trying to earn the respect of your doctor and get her to listen, so you have to target your information for your audience very carefully. Focus on those gastro symptoms. (What you think of as 'mild' may actually be more telling than you think.)

Thanks so much for the advice. Jerry

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Its also not like the doctor's can "do" anything once you're diagnosed, so self-diagnosis and treatment is also an option. You could go the Enterolab route, you could try a gluten-free diet (but only if you decide not to pursue the official diagnosis). Actually, even if you do test negative I'd strongly advise a gluten-free trial to see if your gastro issues clear up.

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Its also not like the doctor's can "do" anything once you're diagnosed, so self-diagnosis and treatment is also an option. You could go the Enterolab route, you could try a gluten-free diet (but only if you decide not to pursue the official diagnosis). Actually, even if you do test negative I'd strongly advise a gluten-free trial to see if your gastro issues clear up.

Being a newbie here, I don't know what the Enterolab route is...could you elaborate on that. Thanks!

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If you are going the testing route, be sure that you keep ingesting gluten. Approx. the equivalent of 3 slices of bread a day. If you don't then the tests are scewed. You also need to make sure that she does the full panel instead of one single test. My doctor was from the 60's and did one test only. I was lucky it was positive. He now does the whole panel. You can never get a false positive, but you can get a false negative. Good luck and welcome to the forum.

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Unfortunately I belong to the infamous Kaiser Permanente HMO, and I don't know if they'll view celiac disease as something real, or just a fad diagnoses. They don't like to pay for anything they don't deem medically necessary and I certainly look healthy, so why should they bother with this? The only thing I have in my favor is I can point out this severe enamel hypoplasia and tell them my dentist suggested it (celiac disease) as a possibility.

My doctor is a woman...she seems o.k., but I don't really know her that well. Most HMOs will not do anything for you, especially if you are a healthy looking male, unless you are half dead. Sorry if that offends anyone, but it is my experience.

I may have to go to a private physican to be tested. Should I try a naturopath?

Hi Jerry!

I'm a newbie too.My advice to you is to arm yourself with more knowledge about this disease before you suggest it to your doctor. I have found the book Dangerous Grains to be extremely helpful. You may discover that you have more symptoms than you think. There are a number of symptoms you might have but just don't think they're connected. If you present more than just the enamel hypoplasia to your doctor, she would have a tougher time disregarding your possible dx. Knowledge is power. Good luck!

Margie

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As I posted on one of the other forums, I'm interested in exploring Celiac Disease as a possible cause

of my severe Enamel Hypoplasia. At age 40 I had to have ALL my teeth crowned, because there was no enamel left and I would soon have nothing left to eat with. In like 10 years my teeth went from being granite hard, to soft. I have mile gastro symptoms which could be attributed to celiac disease...who knows.

What I'm interested in knowing is...if I go to my doctor and suggest this as a possiblity are they going to

think I'm nuts? Does medicine view celiac disease as a real illness, or do they think of it more as a quack diagnoses?

To look at me, you'd think I look healthy and for the most part I feel pretty well. I do have episodes of

gastro illness, my family always know's to take immodium where ever they take me. But it's not like I'm sickly and malnourished looking or anything like that.

I do however have severe Enamel Hypoplasia and so does my identical twin brother.

Any thoughts? Is the chance that I have celiac disease enough that I should insist on being tested?.

Thanks, Jerry

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Hi Jerry:

After several visits to different doctors, I am not convinced they are cognizant of patients who present with less apparent symptoms of celiac. I had horrible distention and constipation. I complained to doctors who want to treat the symptoms, Zelnorm, and not the problem. On my own I removed wheat, barley and rye from my diet, and you would not believe the change. I suffered for years. Within a week of removing them, I finally have bowel sounds again. My edema is less, my sinuses and back pain have cleared up significantly. My stomach and bowel distension, which was so bad it often made it difficult to breath, have cleared. I also have very bad teeth problems. They say with celiac you have malabsorption of calcium and everything else. One symptom of mine was I was ravenously hungry even after eating. Now it makes sense. I was not absorbing anything. I guess what I am trying to say, is you do not need a doctor to try removing wheat, etc. from your diet to see if you feel better. It took about a week before I noticed real body changes. Good Luck.

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At a recent conference on celiac disease I had the pleasure of meeting Dr Peter H. R. Green. He is the director of the celiac disease center at columbia uniiversity. His book "Celiac Disease, a Hidden Epidemic" is packed full of info. I recommend it highly. Also I remember our local Kaiser, in Stockton, had a strong celiac support group, at one time. But I do agree with all above answers, most MD's will dig their heals in when approached with "I think I have..." Go in imformed, state your s/s, and ask for the specific screening tests for celiacs disease. Dr. Green recommends tissue transglutaminase TgA & TgG. If these are positive then an upper endoscopy with biopsey of small bowel is indicated. Good luck.

Sue

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I made it seem like my doctor's idea. I went in and said, "I wonder if I have stomach problems because I have problems with certain foods." My doc said, "well, I doubt you have any food allergies, but I'll run a celiac panel and we'll see about that."

Reverse psychology is an awesome thing :P

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I made it seem like my doctor's idea. I went in and said, "I wonder if I have stomach problems because I have problems with certain foods." My doc said, "well, I doubt you have any food allergies, but I'll run a celiac panel and we'll see about that."

Reverse psychology is an awesome thing :P

Yes, I've considering manipulating my doctor in just such a manner ;) Also considering Enterolab...

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