I Don't Get It - What Is It With Doctors And Gluten?

Post by **tex** » Mon Feb 07, 2011 10:57 am

Hi All,

Smoking is considered to be bad for one's health. Show me a doctor who would recommend smoking, these days.

Non-prescription drugs, (recreational drugs), are considered to be bad for one's health. Show me a doctor who would recommend the use of recreational drugs, (well, a real doctor, anyway).

Obesity is considered to be bad for one's health. Show me a doctor who would recommend that obese patients should eat more.

Alcohol is considered bad for an alcoholic. Show me a doctor who would recommend an alcoholic drink for an alcoholic.

Gluten is known to be bad for the health of anyone who is gluten-sensitive. Show me a doctor who would recommend that gluten-sensitive individuals should eat gluten.

Wait a minute - they're everywhere. Doctors recommend gluten challenges every day, in order to satisfy their own professional curiosity, as a diagnostician. They go out of their way to insist that someone who doesn't have fully-developed celiac disease should continue to eat gluten, (even though the patient might already be producing antibodies, or might have a slight degree of villus atrophy). They urge celiacs to try oats, knowing full well that a certain percentage of them will be sensitive to the avenin in oats, and many others will be exposed to cross-contamination due to wheat in their oats. In short, they don't seem to consider gluten-sensitivity to be the serious health issue that it actually is. They don't seem to understand, nor do they seem to care, what the risks are to a patient, when they recommend continuing to ingest gluten, despite obvious symptoms of gluten-sensitivity.

Why the double standard? Why are all other known medical no-no's staunchly condemned, as targets of official, well-planned campaigns, and yet gluten, which worldwide, may cause far more health issues than all the other issues mentioned here, put together, is treated so cavalierly by the medical community as a whole? I just don't understand their mindset.

Physicians often wonder why so many celiacs fail to take their GF diet seriously enough to meticulously avoid all traces of gluten. They need look no further than themselves, and their inexcusable behavior, for the reasons. Just as children emulate their parents, patients emulate their doctors, and when doctors begin to take gluten-sensitivity seriously, then celiac patients will have a reason to take their diets seriously.

At least, that's the way I see it.

Tex

harma · Post by **harma** » Mon Feb 07, 2011 12:04 pm

I agree with you Tex, I have no idea what it is with the medical world to keep on denying that gluten sensitivity is more than a full blown celiac, like Dr Fine says "when the villi are gone". The seem to be so locked in, in their own world, in their own way of thinking. But it is not only doctors, you also see it with people with gluten antibodies in their blood. Some, even than, keep on eating gluten. Mainly, I think, the doctor didn't tell them not to. So they don't.

Also in general there is a very high resistance of treating any (chronical) disease with diet. I am also a member of Dutch Crohn/UC message board. Talking about diet there, is almost curshing in a church. I don't interfere with Crohn and UC, because I don't have one of those diseases and don't now much about it. But so now and than, somebody with MC shows up. I share all the information I have found here with them. Almost never I am be able to convince them to give a gluten, diary and/or soy free diet a chance. Maybe it is me overwhelm them with all my MC knowlegde and experience (after being an active member for about 1,5 years I think I can say I know something about the disease).

They just don't believe me, because their doctor said "diet has no influence", than I keep on explaining, no doctors don't know much about this disease and that I got my information on a great MC message board (and oh believe I keep repeating and repeating the name of the website and promoting this group). Maybe the English language is a problem for some, but nowadays with one click google translator translate the page in any language you want.

A couple of weeks ago, somebody on that Dutch UC/Crohn board wrote that her doctor told here, that is was a rare disease and in America (US), they were much further with the disease and knew much more about it...sure... BS of course.

If most of the dutch people (some are belgium too, it is a dutch language message board) were doing well with their MC, for my part only on entocort, I couldn't care less. But almost everytime, the stories are so said, wrong medication is prescribed (and not working), people can't leave their houses because of we all know why, get or are depressed, nauseous, really really ill. Than I think, give it a try!!!! And if they don't believe me, than let them take a look over here. It is so said, because I know from all the stories here (and my personal experience) that they can get their life back and their life back on track.

It almost seems like, that they want to anything to get better (read swallow any pill the doctor prescribes them) but not NOT EVER try the diet. We all know it is not always easy, and it is never an instant solution, even I have to admit I was a bit sceptical in the beginning. But what other alternative do we have got?? And do you have to loose??

So I gave up on "spreading the great MC news" in the Netherlands.

TooManyHats · Post by **TooManyHats** » Mon Feb 07, 2011 12:43 pm

When I told my GP I was being tested for Celiac disease back in December, his reaction was, oh I hope not. Like it would be the end of the world! OK, the diet is limiting (eliminating just gluten alone), but there are so many choices now. I'm sure he'd be horrified to learn that I'm now d/f, g/f, and s/f.

Gabes-Apg · Post by **Gabes-Apg** » Mon Feb 07, 2011 1:58 pm

tex

maybe they are looking after their (and the pharmaceutical industry) lively hoods...

we all know that it isnt a condition unless there is a drug to help mask the symptoms, until then they label it a fad...

TooManyHats · Post by **TooManyHats** » Mon Feb 07, 2011 8:01 pm

MaggieRedwings · Post by **MaggieRedwings** » Tue Feb 08, 2011 5:56 am

Boy Gabes - you hit the nail on the head IMHO.

So sad Harma that people will just not listen. However, most look at their medical "practioners" as demi gods and they just aren't.

Love, Maggie

Zizzle · Post by **Zizzle** » Tue Feb 08, 2011 9:36 am

There is a backlash by doctors against the GF diet because of research trends showing that 80% of gluten-free foods are consumed by people with no celiac or gluten intolerance (but is it no "documented" cases?). It's a BOOMING business for food manufacturers, and docs want people to know GF is not "healthier" food. It seems feeling better while GF is not a good enough reason to eat GF food. We must remain sick and tired!!

I'm the on the DC Celiac listserv and there was a recent dicussion about the need to be diagnosed (or not). Some people had bad experiences getting health or life insurance after the diagnosis, so they recommended people not seek a difinitive diagnosis. Others needed the diagnosis to qualify for certain benefits, follow-up tests, etc. I noticed many "self-diagnosed" people in the group, which surprised me.

I'm self diagnosed as gluten intolerant, and I think I'm OK with that. I fought for a diagnosis last year, but now I don't care. My body told me everything I needed to know. Endoscopies, biopsies and gluten challenges come with risks, so why take them, only to be labeled an insurance risk?

Post by **tex** » Tue Feb 08, 2011 10:22 am

Very good points! I've never been "officially" diagnosed with gluten-sensivity, (except by Dr. Fine's remarks on my Enterolab test results), but no one has ever questioned my status at a hospital, or anywhere else, including my doctor's office, (and I told him that I was self-diagnosed), whenever I've mentioned that I am sensitive to gluten. Hospitals have always been very accommodating in response to my request for GF meals, (some of their suggestions sucked - salads, for example, but at least they tried hard to come up with food that I could safely eat.

Tex

Joefnh · Post by **Joefnh** » Tue Feb 08, 2011 10:40 am

My take on this is one of lack of education and awareness to the general medical community. This is a 'new' area that recently appears to be gaining acceptance. Lets keep in mind that many of the doctors just went through CME training in recent years where whole grains were the next wonder food to help cure all ills.

I would be a little cautious of just shooting the messenger. While many of us have had bad experiences with doctors, myself included, as a whole they do care for their patients. Although the point is not lost on me to find the right doctor that is willing to listen to you, that's the hard part it seems

Overall the message of gluten intolerance has to make its way to the researchers and those few who decide on what to present and publish, there is where the true battle is to be fought.

--Joe

harma · Post by **harma** » Tue Feb 08, 2011 10:45 am

Never is it that difficult to maintain a gluten free diet as in a hospital, even when you are offically diagnozed with Celiac. I don't know how it is in other countries, but in the Netherlands you better bring your own gluten free replacements.

Gabes-Apg · Post by **Gabes-Apg** » Tue Feb 08, 2011 12:59 pm

In Australia if i had medically diagnosed (= blood test) celiac and/or crohns then the bone density testing would be subsidised.

because MC is not a condition on their list (i gather the coding discussion of last month explains that one) i had to pay full price for the test (and will have to until i am 55)

it doesnt matter what the doctor may write on the referral as the basis of the test, it has to match up to the guidelines set by the government

harma · Post by **harma** » Tue Feb 08, 2011 1:39 pm

That's bad gabes, that you had to pay for it yourself. Mine was covered by my health insurance. If your GP or GI (or whatever doctor) ask for one, it is covered in the Netherlands. That is a good thing, but don't think that makes it perfect. Before you will get a dexa, you have to convince your doctor you need one. Sometimes having Crohn or Celiac can be enough (although not standard). Taking steroids is a argument to convince your doctor. In my case it was also not that difficult, since I had bulimia for almost 17 years (eating disorders is also one the risk categories).

since we have so many mc'ers here with bone loss, a dexa scan should be a standard thing (along with a test for other auto immune diseases)

Gabes-Apg · Post by **Gabes-Apg** » Tue Feb 08, 2011 2:01 pm

Thanks Harma

I had to have a doctors referral to get the test,

the ironic thing of the situation, is that i am being pro-active about my health and monitoring these types of things so that i am NOT a burdon on the health system in later years,
the current set up means that due to costs people do not seek these tests pro-actively, they wait until they can get them for free, in many cases by then the damage is done

harma · Post by **harma** » Tue Feb 08, 2011 2:53 pm

the ironic thing of the situation, is that i am being pro-active about my health and monitoring these types of things so that i am NOT a burdon on the health system in later years,

Gabes, I hear you, same frustration here even when I don't have to pay for my dexa.