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Gentleheart

Group Letter to Dr. Fine

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From http://www.enabling.org/ia/celiac/cel-hla.html#Q9

HLA Typing and Celiac Disease

The three markers DR3, B8 and DQ2 are all associated with Celiac Disease. The reason for this is that the genes which code for B8, DR3 (also termed DRw17) and DQ2 are in linkage disequilibrium. They are part of a gene segment that is usually maintained as a gene block. This fact has posed a problem in the work to identify which molecules are actually involved in the development of Celiac Disease and which alleles are just associated with celiac disease because the genes coding for these molecules are usually linked with the predisposing genes. In other words: Which of B8, DR3 or DQ2 are actually involved in the development of Celiac Disease and which are just marker molecules?

Those Celiacs who are not DR3 positive very often are DR5/DR7 (DR5 is coded for by genes on the one chromosome and DR7 is coded for by genes on the other chromosome). Individuals who are DR3, almost always also are DQ2 (because the genes coding for DR3 and DQ2 are in linkage disequilibrium - they are in a conserved gene block). The names of the genes in this gene block that jointly code for DQ2 are DQA1*0501 (which codes for the alpha chain) and DQB1*02 (which codes for the beta chain). The DQA1*0501 gene also exists in a gene block that contains the gene coding for DR5, and the DQB1*02 gene exists in a gene block that contains the gene coding for DR7. Individuals who are DR5/DR7 may thus also possess the DQA1*0501 and DQB1*02 genes. In contrast to individuals who are DR3-DQ2 the DQ genes in DR5/DR7 individuals which code for DQ2 are located on two different chromosomes. This explains why DR5/DR7 individuals also have a predisposition to develop Celiac Disease and strongly indicates that it is DQ2 coded for by the DQA1*0501 and DQB1*02 genes that actually are involved in the development of Celiac Disease. About 95% of the Celiac population carry these particular genes.

In addition, another 4-5% of the Celiac population have genes that code for DR4 and DQ8 molecules (the genes coding for DR4 and DQ8 are maintained in block of genes). Probably it is the DQ8 molecule that mediates the disease predisposition in this subgroup of patients. Some very few Celiacs are neither DQ2 nor DQ8 implying that HLA typing is not a perfect predictor of risk for Celiac Disease.

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Alison..............omg.......... :blink:

I'm sure this makes sense to a lot of the scientist on the board.

Can someone summarize for the rest of us :o

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Alison..............omg.......... :blink:

I'm sure this makes sense to a lot of the scientist on the board.

Can someone summarize for the rest of us :o

Well, maybe I'm misreading it, but it looks like there are SEVERAL genetic markers clearly associated with celiac disease, not just 2.

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Well, maybe I'm misreading it, but it looks like there are SEVERAL genetic markers clearly associated with celiac disease, not just 2.

Well that's clear enough :lol: thanks so my Alison.

The longer we stay on the forum the more we learn. :o:)

Judy

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DR5/DR7 combine to form 1 DQ2 gene. I don't see any other genes listed in the article. It says a very few celiacs don't have DQ2 or DQ8, but it doesn't list which genes they are.

neesee

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Thanks so much for the clarification, neesee! This passage was about genetic markers, not genes.

It did say that 4-5 % of the celiac population have neither DQ2 or DQ8 genes, and, as you pointed out, it did not say what genes OR genetic markers that population has.

The way I see it, what they are calling "the celiac population" is a tiny percentage of the people who actually have celiac, because these studies are on biopsy-diagnosed celiacs only, and the studies and doctors seem to agree that most celiacs are undiagnosed.

So it's certainly a possibility that a large number of undiagnosed celiacs may in fact have some totally different genes or genetic markers than those whose damaged villi are screamingly obvious (and whose doctors had the sense to notice).

Hopefully, someday, we'll all know more!

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I corresponded with the originator of this group letter and as of January 17th we have not yet heard from Dr. Fine. Our letter was sent certified and reached his office prior to the Christmas holiday. I want to again thank Gentleheart for her efforts. It was my opinion that the group that initially worked on this letter deserved an update - Gentleheart disagreed - so I'm sorry if I am stepping on toes but I believe in transparency and communication.

There might be a legitimate reason for Dr. Fine's delay in responding so let's not rush to judgment. I personally do not feel that we should send Dr. Fine a 'polite reminder' or contact him in any way as this just gives him the 'out' of claiming that he is simply too busy. Recall that 27 interested parties 'signed' this letter, including former patients, and that we used the name of this forum. I hope that Dr. Fine will respond soon and answer our sincere questions.

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I corresponded with the originator of this group letter and as of January 17th we have not yet heard from Dr. Fine. Our letter was sent certified and reached his office prior to the Christmas holiday. I want to again thank Gentleheart for her efforts. It was my opinion that the group that initially worked on this letter deserved an update - Gentleheart disagreed - so I'm sorry if I am stepping on toes but I believe in transparency and communication.

There might be a legitimate reason for Dr. Fine's delay in responding so let's not rush to judgment. I personally do not feel that we should send Dr. Fine a 'polite reminder' or contact him in any way as this just gives him the 'out' of claiming that he is simply too busy. Recall that 27 interested parties 'signed' this letter, including former patients, and that we used the name of this forum. I hope that Dr. Fine will respond soon and answer our sincere questions.

I was thinking about that letter today! Granted, I didn't sign it, but I am interested in what Dr. Fine has to say. So Gentleheart you are mistaken. The forum does deserve to have an update. Frankly, I'm not at all surprised by Dr. Fine's lack of response.

neesee

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Just to be clear - Gentleheart wants to give Dr. Fine a few more weeks to reply to us before personally attempting to contact him in some fashion. After all of that and at that point I believe she intended on giving us an update. I believe everyone deserved an update right now - it's already been three weeks. I am hoping that Dr. Fine will respond to a certified later from his patients and a popular forum that regularly endorses his company.

Gentleheart has done a great job and I very much appreciate her efforts.

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I think Gentleheart wrote a fantastic letter. She is a true lady. I sincerely hope Dr. Fine responds for her sake. Such a dear person should not be ignored. If he doesn't respond, I think that says everything you need to know about him.

neesee

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Hello everyone,

It can be really difficult to wait sometimes. Those of us who have not yet figured out our own gluten sensitivity, have a particular interest in Dr. Fine's research and what he might have to say to us. So I fully understand our desire to be first on his "To Do List." But if there's anything I have had to learn on my own quest for health, it is patience. This confusing, ever-changing disease can try the most hardy of souls - 3 steps forward and 2 1/2 steps back for many of us, I'm afraid. :)

I sincerely apologize that I waited too long to give you an update. My honest thought was that I didn't have much to say except, "I haven't heard anything yet." But it would have been kind of me to have done that, nevertheless. I ask your forgiveness. It was certainly not my intent to be neglectful or elusive. I was giving Dr. Fine additional time because we chose to send this letter during the busy holiday season.

From the very beginning, it has been my personal goal in this group project of ours to achieve something positive and useful for everyone. Since I have so many of my own, it has never been my desire to dwell on any shortcomings Dr. Fine may or may not have. I would love it if Dr. Fine had fired a letter right back to all of us saying all the things we long to hear. But for what could be many legitimate reasons, he didn't.

The holiday season is usually a time for rest and relaxation. Perhaps he has been taking some time off. He could be traveling. Perhaps he has indeed been having a few momentary problems with his research and needs to be temporarily quiet until it is resolved. Since he knows that we plan to do our own form of "publishing" by sharing his response on this very influential forum, perhaps he is spending extra time formulating a wonderful letter for us. I do not claim to know anything about the intense work involved with a long term science research project of this magnitude. Maybe it is honestly grueling on a daily basis and leaves him very little time for reflection or personal correspondence. And we must not ignore the human side of this. Maybe he is just a bit of a procrastinator. Many brilliant people are.

I have personally chosen to believe that Dr. Fine is an honorable, talented man, with noble aspirations to benefit us all. It will sadden me greatly if this project ends up casting doubt on his integrity or his work. I will not back away from any truth. But I sincerely hope that the truth ends up being "great news."

I will promise to update you frequently. A wise person who knows Dr. Fine has suggested that I do eventually contact him personally. They have indicated that he is indeed a very nice man and there is likely a very good explanation. I want to give him every chance to turn this into a positive exercise and will try to do whatever I have to do to help that happen.

Would you prefer that I update you on this same thread or produce another?

Thank you for your patience with me! :)

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Gentleheart,

I think your post is awesome. I was dismayed to see the posts regarding the lack of response automatically condemning Dr. Fine. He may be very busy as you said, or he may not feel that he is responsible for answering a letter out of the blue. I was confused by some of the statements that said he got a letter from his "patients" because as far as I know, Dr. Fine does not have patients - he provides a service to people. I used his service and don't feel like I am his patient because of it.

I hope you do get a response and it is positive. But for the life of me, I cannot fathom why some people are so vehement in their negative response to Dr. Fine. It's not like anyone has been forced to use his service. Yet, these same people will sing the praises of tests and doctors that use them that lead some people to believe they have no problems with gluten when, in fact, they may actually do. That, to me, is far more dangerous.

So, I praise your intelligent and polite method of contacting Dr. Fine and awaiting his response, and not drawing conclusions on no response. Good for you!

Lauire

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We share a common denominator as we have come to this place, but we have arrived with varied different attitudes about the health care we have experiences. Many have had wonderful experiences and others, quite the opposite.

Some times we need to remember this when we post on a forum directed to everyone. I need to remind myself quite often. ;)

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I was dismayed to see the posts regarding the lack of response automatically condemning Dr. Fine. He may be very busy as you said, or he may not feel that he is responsible for answering a letter out of the blue. I was confused by some of the statements that said he got a letter from his "patients" because as far as I know, Dr. Fine does not have patients - he provides a service to people.

Hi Laurie!

I thought I would respond because you seem confused by my post. I referred to customers of Dr. Fine's company as 'patients' because when I receive 'services' from my doctor they refer to me as a patient. I think you are correct, however, in that customers is more accurate in this case because, as we both know, Dr. Fine doesn't do any diagnosing. He simply charges for a lab test and then leaves it up to his customers to come here to interpret the results. I am confused by your contention that Dr. Fine perhaps feels he has no responsibility to answer a letter out of the blue. This was a certified letter from his customers with questions about the service he provided. I am also confused by your comment regarding multiple statements condemning Dr. Fine due to his lack of response. I am sure you are not referring to my posts because I did not condemn the good doctor.

I would think that anyone involved with this letter would say it is fair to use the doctor's response or non-response in an evaluation of his services. If we are not going to come to any conclusions based on his response or non-response, then there was no purpose to sending the letter in the first place.

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I would think that anyone involved with this letter would say it is fair to use the doctor's response or non-response in an evaluation of his services. If we are not going to come to any conclusions based on his response or non-response, then there was no purpose to sending the letter in the first place.

I was very involved with this letter, as I wrote the first draft (which Gentleheart vastly improved, for which we should all be grateful!), and I strongly disagree with you.

It is always foolish to make assumptions.

You know the old saying: Never ^SSUME--because you make an ^SS out of U and ME. :lol:

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It is always foolish to make assumptions. You know the old saying: Never ^SSUME--because you make an ^SS out of U and ME. :lol:

Sorry, fidster - I did not mean to make an ^SS of U. :lol:

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I think my reference was to the remarks that said a non-response by Dr. Fine automatically confirms his work cannot be defended. I disagree with that premise. It can mean that or many other things, like he is busy, or he doesn't care to answer, or he feels attacked, etc. The only thing it would prove is that he didn't answer the letter. :P

I hope he does answer positively so it can all be settled. But, for me, I have no qualms with his testing.

Laurie

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I think my reference was to the remarks that said a non-response by Dr. Fine automatically confirms his work cannot be defended. I disagree with that premise. It can mean that or many other things, like he is busy, or he doesn't care to answer, or he feels attacked, etc. The only thing it would prove is that he didn't answer the letter. :P

Exactly.

Send a similar letter to any other company and see what response you get.

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He could also be preparing a response. Such a well-written inquiry deserves a well-thought out response!

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I think my reference was to the remarks that said a non-response by Dr. Fine automatically confirms his work cannot be defended.

Laurie

No....that's not what I said. I said if he doesn't respond that's all you need to know about him. You obviously mean nothing to him. Do you allow other people to treat you that way when you ask them a question? If you asked your own dr a question and you know he hears you but he ignores you and walks away, would you continue to see him? I seriously doubt it. Dr Fine is doing the equivalent if he doesn't respond soon.

You all practically worship this guy and I just plain don't get it.

neesee

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You all practically worship this guy and I just plain don't get it.

I think he gives some people hope about their condition and/or treatment, particularly after he has made an effort to connect directly with the gluten-intolerant community through lectures and essays.

I've never been fond of the practice, myself, as I'm extremely jaded and I've known specialists in other fields that people worship that are actually manipulative and two-faced egomaniacs. But I do understand why some people put such hope in Dr. Fine's work. And, of course, he's probably a very nice man. I was not implying that he is 'just like all the rest', by any means.

I would like to respectfully submit that this incessant speculation about Dr. Fine is kind of creeping me out, but I check back here periodically because I am curious to see what his response is after all the discussion about this letter. It is unfortunate that it has taken so long. Have you confirmed that he actually received it?

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Have you confirmed that he actually received it?

I believe he was sent a registered letter. That means he had to sign for it.

I would love to be wrong about the guy. I hope he responds to Gentleheart soon. How can you mistreat someone who is as kind and trusting as she is? It's just wrong.

neesee

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