The Gluten Doctors

[lbd]

I found this site some time ago. These doctors believe in gluten sensitivity and alternate forms of identifying gluten sensitivity, such as Enterolab. How I wish they were in my area and not all the way across the country. The first post about neurological effects is interesting, but the second post down is even more so. How dismaying to think that a national celiac organization can be so ignorant.

Open Original Shared Link

Laurie

[Lisa]

This statement, deserves to stand alone: (from the link supplied

We are affiliated with the Celiac Disease Foundation, and generally advise physicians and patients to follow the guidelines for celiac diagnosis and treatment recommended by university celiac disease centers, including those at U.C. San Diego, Columbia University, University of Maryland and University of Chicago. This approach appears to differ in significant ways from the one described on your web sites. For example, the use of Enterolab stool testing, and the dismissal of the intestinal biopsy as a misguided approach advocated by "several" clinicians, is inconsistent with our philosophy (8/26/08 entry in her blog).

While alternative approaches to diagnosis may prove fruitful in the future, we feel we will have the greatest impact in our local medical community at this time by using the resources of universities and peer-reviewed medical journals that mainstream physicians trust. We do, however, strongly support the use of integrative medicine in the treatment of celiac disease and gluten sensitivity.

There is a great deal yet to be discovered about celiac disease and gluten sensitivity, and I wish your colleagues well in the path they have chosen.

....ignorant?, I think not. Honest, forthright and open minded comes to mind.

Please keep in mind that these people are selling something.

[taweavmo3]

Wow......what a novel approach to medicine. I love it, and I'm very dissapointed I don't live in California. Hey, we've always talked about moving to the coast to improve my son's Psoriasis, Sunnyvale sounds good, lol.

[lbd]

Yes, Momma Goose, an "upcoming book" automatically makes this group suspect, just like Enterolab and Dr. Fine who has the audacity to charge for his tests. Yet, blind faith in a conservative medical community, most of whom won't even acknowledge that gluten sensitivity exists, is supported by a national celiac organization. Yes, let's always wait until everyone has such severe damage from gluten that traditional tests that work (maybe) only after the damage is done show the results we want.

Thank goodness there have been doctors (and, yes, the abovementioned ARE medical doctors) in the past who have ventured out of the comfort zone of traditional medicine, otherwise, we would still be using bloodletting and trepanation to cure our ills.

I can assure you that when someone finds a drug that supposedly cures celiac disease, there will be plenty who will plop down their dollars for that, despite the side effects, and they will be happy to ignore the fact that this is a body's reaction to a poison, not a disease.

laurie

[rinne]

I very much agree that the endoscopy, "the gold standard", is unreliable if for no other reason than damage must be present for a diagnosis to be made. My understanding is that the Marsh Scale, which is what they use to read the endoscopy, identifies the damage once it reaches the third degree on a scale that goes to four! At four the damage may be so great as to never heal. How many people are tested when it is at one or two and it is missed? How often are people told that gluten is not a problem for them?

Sure this Doctor is promoting themselves, their motivation to do so arose out of having a daughter ill and finding out that gluten was the problem and their desire to share this knowledge with others. I think it would be wonderful if many other doctors would wake up to this and promote a gluten free diet as a valuable diagnostic tool.

[caek-is-a-lie]

Wow thanks for the link. I love this site. It's nice to see when doctors actually 'get it'. I wish I lived nearby so I could visit them.

[Lisa]

How dismaying to think that a national celiac organization can be so ignorant.

Open Original Shared Link

Laurie

I am one of the first to agree that testing is far from adequate. There is so much we don't know and the field of study is fairly new in the US. rinne makes good points, as always.

But the above quote concerns me. There are many National Celiac Disease organizations and associations that work in partnership with research studies to refine this disease to make our life better. To make reference to them as ignorant, is like biting the hand that feeds you. They have earned my respect.

Listed below is a SMALL indication of what they have done for us and continue to do so:

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

<a href="Open Original Shared Link disease-research.php" target="external ugc nofollow">Open Original Shared Link disease-research.php</a>

My statements are confined to specifically Celiac Disease

[Fiddle-Faddle]

Please keep in mind that these people are selling something.

So are the doctors who want you to have a biopsy. In fact those doctors are selling way more than the "Gluten Doctors" on the website above. The Gluten doctors are selling the idea (with references) that going gluten-free can cure many, many ailments. You don't need to buy their book to try it.

Think how much a doctor earns for a biopsy to confirm positive blood work--it's a lot more than the cost of a book. And they don't say, "you can try a biopsy if you would like, but you don't have to, you can just try the diet and see if it works." No, they say that you MUST have that biopsy as it's the "gold standard" of diagnosis.

Which, as the website above clearly explains, is ridiculous.

[Fiddle-Faddle]

My statements are confined to specially Celiac Disease

What is "specially Celiac Disease?"

[Lisa]

What is "specially Celiac Disease?"

Open Original Shared Link

Celiac Disease Defined

What is Celiac Disease?

Celiac disease (celiac disease) is a genetic disorder. In people with celiac disease, eating certain types of protein, called gluten, sets off an autoimmune response that causes damage to the small intestine. This, in turn, causes the small intestine to lose its ability to absorb the nutrients found in food, leading to malnutrition and a variety of other complications.

The offending protein, gluten, is found in wheat, barley, rye, and to a lesser extent, oats (WBRO). Related proteins are found in triticale, spelt, kamut. Refer to grains and flours Glossary for a more extensive list of both safe and offending grains.

[Fiddle-Faddle]

My statements are confined to specially Celiac Disease

I understand what celiac disease is.

I don't understand your statement.

Your comments are not confined to celiac disease but to "specially Celiac disease?"

I repeat my question. What is "specially Celiac disease?"

[jerseyangel]

I repeat my question. What is "specially Celiac disease?"

I believe Lisa meant "specifically".

[happygirl]

I'm guessing she meant, specifically Celiac Disease.

[Fiddle-Faddle]

I believe Lisa meant "specifically".

Thank you!

[Lisa]

I understand what celiac disease is.

I don't understand your statement.

Your comments are not confined to celiac disease but "specially Celiac disease?"

I repeat my question. What is "specially Celiac disease?"

My spelling ability or lack of, was not meant to creat a concern. I have wonderful spell checkers.

[rinne]

Thanks for your point of view Lisa.

I think sometimes I forget I don't own the Celiac experience. I know that many do have positive experiences and are reassured by the testing procedures offered. I'm not one of them obviously.

I didn't see the quote you referred to but think we are better off to try to build bridges. Whatever can be done to further awareness of the devastating effects of gluten intolerance are positive as far as I am concerned.

However, I am also concerned with the idea of yet another medication being developed which will allow us to consume a toxin. It seems rooted in the idea of the body as machinery that can be tinkered with to operate better with the aid of big pharma. It is this stuck in the "idea" that I have so often encountered in conventional medicine, the idea of proof which is damage.

Falling ill has allowed me to understand that what we call many diseases is really damage. I think when we are first ill, we are ill on a metabolic level and we know that we are ill, I think sometimes this knowledge takes the form of panic attacks, this being our bodies way of trying to alert us to a problem. If we see a doctor with these symptoms most likely we will be prescribed anti-anxiety medication and for a while we will seem okay but in fact we are getting sicker. I think that once our illness manifests physical damage it may be read by the testing that conventional medicine does. Can't we do better than that?

It is my opinion that diet as a diagnostic tool used by all doctors would revolutionize the health care system and bankrupt big pharma.

A girl can dream.

[lbd]

I think that these national organizations do a good job of educating people about celiac, but I do think some are ignorant of other gluten sensitivities. If they had responded that they didn't want to pass on the blog's information because they did not believe in gluten sensitivity, that is their perogative.

From personal experience with family, I certainly do not have blind faith in the medical community - neither its motives nor its competency. My mother was diagnosed with advanced breast cancer 6 months after a normal mammogram and died 18 months later, just scant weeks after her surgeon told her as far as he was concerned she was cancer free. It had spread to her liver. My father died a couple of months after getting the recommended flu shot - he died of the flu. These may seem like silly examples to some, but it has led me to be very skeptical of the medical community, and to question and investigate for myself and not rely completely on what they say.

So, I am influenced by my experiences and also my background in science. Just because someone is a doctor, it does not necessarily mean he/she is more intelligent, less motivated by greed, or keeps more up-to-date on the latest medical knowledge than anyone else. They have their uses, no doubt, but it is up to we, the consumers of this medical knowledge, to learn what we can for ourselves. We need to become active participants in our own care, not rely on standard medical protocol for everything.

I applaud the Gluten Doctors and others like them for thinking outside the box and presenting alternatives to those that want to investigate them.

Laurie

[Jestgar]

Just because someone is a doctor, it does not necessarily mean he/she is more intelligent, less motivated by greed, or keeps more up-to-date on the latest medical knowledge than anyone else. They have their uses, no doubt, but it is up to us, the consumers of this medical knowledge, to learn what we can for ourselves. We need to become active participants in our own care, not rely on standard medical protocol for everything.

Worth repeating

[Lisa]

I think that these national organizations do a good job of educating people about celiac, but I do think some are ignorant of other gluten sensitivities. If they had responded that they didn't want to pass on the blog's information because they did not believe in gluten sensitivity, that is their prerogative.

Laurie

Laura, I am sorry for your family history and your loss. It, no doubt, has influenced you, as is understandable.

I am not certain that the Celiac National Organization chose to pass on the blog because they do not believe in gluten sensitivities, but differ in their approach to achieve a diagnosis. Endorsement requests from these national organizations are frequent.

Upon re-reading the information, it was the opinion of one personal whose organization was in affiliation with the national organization, not a national policy statement.

[lbd]

Thank you, Lisa. Undoubtably we all have different backgrounds that influence our decisions. I think part of the problem or gap that occurs in this community is that some of us think of this as a disease and some of us think this is a response to a poison. I've not terribly interested in a diagnosis - I know I am sensitive to gluten genetically and I believe the tests I did have (enterolab) gave me the reinforcement I need to eliminate the poison from my diet. Certainly the cessation of migraines after 40 + years of them is enough to convince me. In fact, if I had the opportunity for blood tests and endoscopy, I wouldn't take them. What I have is good enough for me. I hope that some day there will be a test that can test for gluten sensitivity early enough that damage does not have to be done to get positive results. I hope that doctors like "The Gluten Doctors" continue their work in this area and spread the word that gluten can cause an entire spectrum of problems.

Laurie

[chb]

Thanks for sharing that blog. As someone who was told by my doctor that I wasn't celiac, but should just avoid gluten if it made me feel better, it is nice to see gluten sensitivities taken seriously. This journey is so hard some days, it helps to have a medical person encouraging me that it IS necessary for me.

[rinne]

Thank you, Lisa. Undoubtably we all have different backgrounds that influence our decisions. I think part of the problem or gap that occurs in this community is that some of us think of this as a disease and some of us think this is a response to a poison. I've not terribly interested in a diagnosis - I know I am sensitive to gluten genetically and I believe the tests I did have (enterolab) gave me the reinforcement I need to eliminate the poison from my diet. Certainly the cessation of migraines after 40 + years of them is enough to convince me. In fact, if I had the opportunity for blood tests and endoscopy, I wouldn't take them. What I have is good enough for me. I hope that some day there will be a test that can test for gluten sensitivity early enough that damage does not have to be done to get positive results. I hope that doctors like "The Gluten Doctors" continue their work in this area and spread the word that gluten can cause an entire spectrum of problems.

Laurie

Well said, thank you for that.

I too am of the "poison school". I passed on the endoscopy, it was scheduled for five months after the doctor asked me if I had heard of Celiac . I found out that day that my sister had been diagnosed with it, I quit eating gluten and there was no way I was ever going to eat it again so I could damage myself so they could see the damage! That still just blows me away, I am at once outraged and appalled that that is the best they can do.

As for my sister, she had been diagnosed with IBS for about ten years when the doctor mentioned to her that she had Celiac too and should avoid wheat, no mention of gluten, no warning of the dangers, no forget the IBS it is Celiac.....She continued to eat gluten for five years until I got sick and learned enough to share the information with her. She is very ill now and it is complicated with other illnesses, she is my baby sister and it breaks my heart.

I have heard that in Italy children are routinely tested for Celiac about the age of five and that if they show a sensitivity they avoid gluten and it is never a problem for them.