Why Does The Medical Establishment Stonewall Dr. Fine?

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tex
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Post by tex »

Cara,

I'm not sure, but I suspect that the problem that you had with the system incorrectly displaying that URL, may be due to your browser. This board operates on php code, (like yours), and, of course, our browsers have to interpret that code, and properly display it, in order for us to correctly see the posts, (and everything else, that is here). I am guessing that you may use Internet Explorer. I use Firefox. When your browser displays the site address, it shows the characters following the word "chron", to be 's,ibd,ibs. My browser shows it to be %27s,ibd,ibs. The problem, of course, is that the %27 is a php instruction, which tells the interpreter to increment the function by 27 units. Since that "code" is in an URL, it obviously should not be executed, but simply displayed as part of the URL description, which Firefox correctly does. I'll bet that your browser is either trying to execute that code, or it is altering those characters for some other reason, and when it does, of course, it displays a corrupted URL. FWIW, that's just my best guess - I could be all wet. Anyway, as you can see, I edited your post, and added the corrected URL, (as displayed by Firefox).

Polly is our guiding light, a dear friend, and our connection with the "sane" side of the medical world. :wink: As she mentioned, all soy lecithin seems to be troublesome for any of us who are sensitive to soy. The lecithin issue is especially cruel for chocolate lovers, (IOW, for everyone, :lol: ), since virtually all chocolate on the market contains soy lecithin. There are one or two safe brands available, but it takes some research to locate them. One of our members achieved remission virtually overnight, when she discovered that the "safe" chocolate that she was eating every day, was mislabeled in the U. S. version, and it actually contained soy lecithin, even though it did not appear on the label. The German label was correct, and that is how she tracked down the problem.

It is also claimed, (by "experts"), that soy oils should be safe, (as should all other oils, as well, since the proteins are supposedly removed during the refining process). Unfortunately, many/most of us have found that this is not correct, and we are indeed adversely affected by oils.

Yes, we have discussed DogtorJ's work at various times in the past. He is not only a great friend of dogs and cats, but he has also contributed a lot of valuable insight into food sensitivities of humans, also.

http://www.dogtorj.net/id1.html

It's obvious that you have done a lot of research, and you seem to have a knack for finding the "good stuff".

I believe that quite a few members have done IgG food allergy testing, with mixed results. Personally, I haven't had any experience with it.

You know, I thought your username looked familiar - I came across your board just a couple of days ago, while trying to track down something, that I can't even recall, right now.

http://glutenfreeandbeyond.org/forum/index.php

I have to say that I really like the looks of your board. I'm especially impressed by the fact that your site is ad-free, something that is dear to my heart, and a characteristic that seems to be somewhat of a rare bird these days.

Tex

P. S. Also, I couldn't help but notice that anyone in the world can access your membership list, member profiles, e-mails, etc. Spambots crawl the web constantly, trawling for e-mail addresses, for example, and any other contact information that they can garner. I have no idea how you administrate your board, but if you have server access, by FTP, and you would be interested, I would be happy to show you how to make some code changes, so that all that information will only be visible to logged-in members, and you can even set the number of posts necessary before a new registrant will be able to view that information. If you have any problems with spambot registrations, I can show you how to totally prevent that, by some minor code modifications to the registration process, (you probably noticed what we do here, when you registered). We haven't had a single spambot registration, since I made that change. Before, we spent a lot of time deleting spambot accounts.
:cowboy:

It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
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Post by jcc »

I'm not sure, but I suspect that the problem that you had with the system incorrectly displaying that URL, may be due to your browser. This board operates on php code, (like yours), and, of course, our browsers have to interpret that code, and properly display it, in order for us to correctly see the posts, (and everything else, that is here). I am guessing that you may use Internet Explorer.

YES... that must be it! I do use IE much to my husband's dismay. He's a linux guy.
I use Firefox. When your browser displays the site address, it shows the characters following the word "chron", to be 's,ibd,ibs. My browser shows it to be %27s,ibd,ibs. The problem, of course, is that the %27 is a php instruction, which tells the interpreter to increment the function by 27 units. Since that "code" is in an URL, it obviously should not be executed, but simply displayed as part of the URL description, which Firefox correctly does. I'll bet that your browser is either trying to execute that code, or it is altering those characters for some other reason, and when it does, of course, it displays a corrupted URL. FWIW, that's just my best guess - I could be all wet. Anyway, as you can see, I edited your post, and added the corrected URL, (as displayed by Firefox).
I think you have it figured out...!
Polly is our guiding light, a dear friend, and our connection with the "sane" side of the medical world. :wink: As she mentioned, all soy lecithin seems to be troublesome for any of us who are sensitive to soy. The lecithin issue is especially cruel for chocolate lovers, (IOW, for everyone, :lol: ), since virtually all chocolate on the market contains soy lecithin. There are one or two safe brands available, but it takes some research to locate them. One of our members achieved remission virtually overnight, when she discovered that the "safe" chocolate that she was eating every day, was mislabeled in the U. S. version, and it actually contained soy lecithin, even though it did not appear on the label. The German label was correct, and that is how she tracked down the problem.

It is also claimed, (by "experts"), that soy oils should be safe, (as should all other oils, as well, since the proteins are supposedly removed during the refining process). Unfortunately, many/most of us have found that this is not correct, and we are indeed adversely affected by oils.
All really good to know...and I am going to pass some of this info along. I thought I had read that soy lecithin should be ok.... but, I know what I read isn't always so! You are lucky to have Polly. I had to really clean up my negativity about the medical profession (present company excluded, of course!) when my now DIL entered medical school. She just finished her second year at Mayo, and at least understands gluten sensitivity now! My sister is a nurse, and my (deceased) FIL was a pathologist... so, of course, I know not to generalize. As you all seem to relate... it can just be a tough journey. One of the doctors in our pediatric group has fully accepted my daugher's gluten sensitivity, and when the other docs in the group asked her if she really believed it... she said YES! And then, she was kind enough to tell me she told them so ;). I'd been given a rough time by the others in the group who were very dismissive. WHen my daughter presented with seizures, it was suggested she was just acting! Thank goodness the EEG, and I had to insist on seeing a neurologist, showed seizures. But, even the enlightened doc is not so sure about the pyroluria. That's ok.
Yes, we have discussed DogtorJ's work at various times in the past. He is not only a great friend of dogs and cats, but he has also contributed a lot of valuable insight into food sensitivities of humans, also.

http://www.dogtorj.net/id1.html

It's obvious that you have done a lot of research, and you seem to have a knack for finding the "good stuff".
I entered the world of gluten sensitivity in 2001. I've been at it ever since.. but my pace has slowed considerably. In the beginning, I was spending 12-16 hour days online :shock: Now I'm down to 1-3 on a slow day. I don't do as much freelancing as I used to ;).
I believe that quite a few members have done IgG food allergy testing, with mixed results. Personally, I haven't had any experience with it.

I'd have to say there has been mixed results, too, but a few members swear it pinpointed exactly what they had to remove.
You know, I thought your username looked familiar - I came across your board just a couple of days ago, while trying to track down something, that I can't even recall, right now.

http://glutenfreeandbeyond.org/forum/index.php

I have to say that I really like the looks of your board. I'm especially impressed by the fact that your site is ad-free, something that is dear to my heart, and a characteristic that seems to be somewhat of a rare bird these days.


Thanks! It looks uncanningly similar to your board... but you have more bells and whistles :cool: .

I had originally been at the BrainTalk boards. I kept asking them for over a year to open up a gluten board and they finally did. We definitely had an emphasis on neurology, and non-celiac gluten sensitivity, absent from many celiac boards. We also talked a lot about broader topics, which is why the new forum is gluten free and beyond. BT GS/CD was a great board for about four years, but it kept crashing... and each time we'd have to rebuild our data... we'd lose all of our valuable threads and personal stories. The last time the board crashed is stayed down for several months. So... three of us decided to create our own board. The first several versions of the gluten file was in a "forum format" with threads all linked together. WHen we had the big crash, I put it to the googlepages (software and space was free). Al is our technial guy who set everything up on the new forum for us. I met him at BT in 2000, but he spends most of his time as a moderator at celiacforums. He agreed to help Anne and I as a personal favor. I also met Anne at BT around 2001-2.

It was EXTREMELY important to me that we not have ads on our forum. I love that I've been able to find everything I have on the internet through a free exchange of information. My pet peeve is that everyone seems to want to turn a buck. I realize there are some legitimate gluten related businesses and services... but I'm not in this gluten information business to make $$. I'm in it to help people connect to resources and find answers to their health issues. So, we just cover it. I consider keeping the gluten file and the forum as my hobby, and I tell people it costs me less than ceramics or scrapbooking would. And it does. It's my gift back.

I read your mission statement last night... and again, felt like I might be reading my own.

Tex
P. S. Also, I couldn't help but notice that anyone in the world can access your membership list, member profiles, e-mails, etc. Spambots crawl the web constantly, trawling for e-mail addresses, for example, and any other contact information that they can garner. I have no idea how you administrate your board, but if you have server access, by FTP, and you would be interested, I would be happy to show you how to make some code changes, so that all that information will only be visible to logged-in members, and you can even set the number of posts necessary before a new registrant will be able to view that information. If you have any problems with spambot registrations, I can show you how to totally prevent that, by some minor code modifications to the registration process, (you probably noticed what we do here, when you registered). We haven't had a single spambot registration, since I made that change. Before, we spent a lot of time deleting spambot accounts
Al added spambot protection by using a registration process that asks the registrant to choose all the pictures of animals out of a group of photos of animals and cars. Something like that. It has worked to keep out the spambots. But, I'll ask Al and Anne (my other partner) whether we should consider putting our membership list and profiles out of open view. That seems like it might be a good idea. We are also working with the older version software, too.

Thanks again for your warm welcome... All of you!

Cara

P.S. What I really like is that you don't show how often someone edits their posts :oops: Al hasn't had the time to take that off. I go back and fix typos like crazy... and can work myself up to the teens :oops:
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Post by tex »

You're right - we're so very lucky that Polly puts up with us. I'm sure that we probably embarrass her at times. :roll:

I remember the BrainTalk stability issues, and that big crash that you mentioned. That was sad.

I'm absolutely amazed at how similarly we view so many issues.

To be honest, the reason why I stuck with phpBB2, rather than converting to phpBB3, is because we probably have at least a couple of hundred MODs on this board, and I just didn't want to lose them, and have to start over, (IOW, I'm lazy, :lol: ). Also, this code is much easier to understand, and much easier to troubleshoot and modify, than version 3, for someone who is not a php programmer, (such as myself).

It's interesting that you should bring up the post editing messages. That also bugged me, but I never got around to doing anything about it. For some reason or other, I decided to change that just a few days ago, (last Sunday, in fact). :lol: Could that have been ESP? Did I somehow "know" that you were coming? Anyway, it's one of the simplest MODs ever written, and I don't have the foggiest idea why I didn't make the change years ago. :shrug: I'll PM you a copy of the MOD, and you can pass it on to Al.
Cara wrote:I go back and fix typos like crazy... and can work myself up to the teens :oops:
:lol: That's me - maybe we're twins, who were separated at birth. LOL.

Tex
:cowboy:

It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
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Post by jcc »

To be honest, the reason why I stuck with phpBB2, rather than converting to phpBB3, is because we probably have at least a couple of hundred MODs on this board, and I just didn't want to lose them, and have to start over, (IOW, I'm lazy, :lol: ). Also, this code is much easier to understand, and much easier to troubleshoot and modify, than version 3, for someone who is not a php programmer, (such as myself).
That may be why Al is reluctant to change, and what we have is working just fine for us. Would love to have the edit mod, though ;). And, also the mod to keep the memberlist private. Thanks!
It's interesting that you should bring up the post editing messages. That also bugged me, but I never got around to doing anything about it. For some reason or other, I decided to change that just a few days ago, (last Sunday, in fact). :lol: Could that have been ESP? Did I somehow "know" that you were coming? Anyway, it's one of the simplest MODs ever written, and I don't have the foggiest idea why I didn't make the change years ago. :shrug: I'll PM you a copy of the MOD, and you can pass it on to Al.

:lol: That's me - maybe we're twins, who were separated at birth. LOL.
Well... I've always meant to visit a psychic to see if I am psychic.. because all I have to do is think of a family member, and they call me. Its happened my whole life ;). I'm just not sure if I'm transmitting or they are recieving... but maybe both. How you knew I was coming here when I didn't know... that is really gifted! As far as twins separated at birth... I was telling my husband last night that running into you all here was like meeting distant relatives you never knew you had!
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Post by JLH »

My younger daughter reports that, too, only with long lost friends not relatives.......
DISCLAIMER: I am not a doctor and don't play one on TV.

LDN July 18, 2014

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Post by jcc »

I've had it happen with old friends, too. Sometimes it makes you wonder!
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more coincidences :)

Post by suzil »

Well Tex & Cara,

At the height of our frustration with my daughter's medical issues would you folks believe that I found BOTH of your terrific forums around the same time. I have been educating myself (and my daughter) ever since.

Feeling now like I should have introduced you two! :lol:

Many thanks to both of you for all your hard work.

Sue
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Post by tex »

Sue,

Thank you for your post. We appreciate the kind words.

How is your daughter doing these days?

Tex
:cowboy:

It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
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Post by suzil »

She's doing great with the GF/CF diet-now we pray no other intolerances appear! She just graduated college & is getting mighty nervous about finding a "real" job.

Thanks for asking :grin:


Cara...have you & your daughter ever tried hemp milk? It's very nutritious-my daughter really likes it. She's been alternating it with DariFree. I don't think either one of them contain soy.

Sue
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Post by jcc »

Hi Sue!
I almost missed your post, as I was so excited to repost what Laurie posted for us today (below). But, no.. we have not tried hemp milk, but I think I've seen it. I am most certainly going to make sure soy is out during our food holiday..I'm thinking I better set a date before summer comes and goes.

Has anyone else seen this posted elsewhere? It was posted at GFAB today. Not sure where it originated but I hope it is true!! Looks like the day may have come!

This was a post in the other forum posted today:

"FYI, after doing more research and spending much time writing and editing, Dr. Fine has completed his research paper and has submitted it for publication. Yeah!"
ANNA

Her reply to someone who questioned how she knew:

"Because I do work for them.
Before I posted, I did get permission from the lab to share the fact that he has completed the paper."
ANNA

My reply:

"That is wonderful news, Anna! I can't wait to read it! Do you know where it may ultimately appear? Please pass my congratulations and thanks to Dr. Fine. Because of his work, both my sister and I had the impetus we needed to pursue and benefit greatly from a gluten free diet, despite negative results from conventional testing. Hopefully, this will open up a new option to many and convince doctors that there are other testing options.

May I share this information on another gluten free forum which has several members that have benefitted from Dr. Fine's work?"

Laurie

Her reply to me:
"Hi Laurie,

I think it would be fine to share this on the other forum. I do not know yet where it will ultimately appear. I plan to shout it to the mountaintops when I know that answer ."

Anna
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Post by JLH »

Woohoo, I sure hope it is true. :shock: THANKS.

BTW, more than several........ http://www.perskyfarms.com/phpBB2/viewtopic.php?t=2645
DISCLAIMER: I am not a doctor and don't play one on TV.

LDN July 18, 2014

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Post by tex »

Cara,

Awesome!

Many thanks.

Tex
:cowboy:

It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
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Post by starfire »

:grin: :grin: :grin: :grin: :grin:
Many Thanks!!
When the eagles are silent, the parrots begin to jabber"
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Post by thedell19 »

That is so sad. Really, these DRs are turning people off of the only thing that has worked for so many. DRs couldnt see that I had an intollerance to gluten through their awesome and foolproof tests but Dr Fine's caveman like tests sure did the trick for me and a lot of you. This is truely upsetting.
Dr Fine test shows positive for gluten and casien but negative for soy, eggs, and yeast
Maybe its UC maybe its MC? Who knows at this point, but at least I know my intollerances now... so heres to the road to healing!
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Post by Lucy »

Mary Beth,

Just as an FYI, I don't think any doc should have any problem with Enterolab's method of doing the genetic testing, it's mainly the stool testing with which some disagree. Matter of fact, I think they "farm" out that testing to another lab, but their methodology would be just like any other lab that did the cheek swab test, I'm pretty sure.
What you may find is that some celiac docs may not understand why anything other than HLA DQ2 or 8 is worth reporting, since they don't equate the other genes to celiac or even gluten sensitivity.

Some have even told their patients (from our support group) the genetic reports don't make sense, and that's simply because they are not up on the genetics nomenclature.

Seems as though I read that Promethius, the most reliable lab of those that test for antibodies in the blood at that time, would do further testing if it was ordered which may include some of the other HLA genes that Enterolab will report to you at the same time as the DQ2 and 8 HLA genes.

Also, wasn't there another breakdown of the DQ2 gene that Promethius can do, and one of the type of DQ2 that may show up on that additional test is an even stronger indication for celiac? Does anyone remember that or any thing like that being discussed in this group before? I suppose it may just be stronger for the traditional diagnosis, but not eliminate the possibility of the other forms predisposing to gluten sensitivity of other types than biopsy proven celiac disease.

I just think that ultimately genetics is going to be THE biggest indicator for which foods the sensitive are sensitive to.

Well, I seem to be a bit tangential tonight, but then, it's late.

It's so nice to have a dietician on board to argue our case with fellow professionals. We sure need to get these folks up to speed so they can educate all the newly diagnosed folks who are having a touch time complying with the diet when patients barely understand it.

Yours. Luce
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