need info for PCP visit--rough % of us who use diet vs drugs

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bevfromwa
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need info for PCP visit--rough % of us who use diet vs drugs

Post by bevfromwa »

Do we have a approximate percentage of members who've used changes in diet rather than drugs? I want to have a discussion with PCP Thursday during my physical. Do we also have an estimate of those who have used Enterolab?

Also, I seem to remember a figure of about 20% of us have thyroid problems, and wonder if I'm remembering correctly. I think I should be tested, and wanted ammunition for this request.

Many thanks,

Beverly
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tex
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Post by tex »

Hi Beverly,

I can answer your last question based on actual data. Approximately 58 % of us have been diagnosed with either hypothyroidism (48 %) or hyperthyroidism (10 %), according to the results of our poll.

Poll About Thyroid Issues

But I can only guess at the answers to your other questions. So here are my best guesses:

While probably at least 75–80 % of new members here use an anti-inflammatory medication early on in their treatment, I get the impression that at least 90–95 % also change their diet almost immediately. And of those who don't change their diet (the first time around), many return a year or 2 later, ready to make the necessary diet changes so that they can get their life back.

Actually, I am personally aware of only 3 or 4 members here who do not follow a restricted diet in order to prevent relapses. And to the best of my knowledge, even they use diet changes when they are in a flare, in order to get their symptoms under control again.

I would guess that probably at least 75 % of those who use an anti-inflammatory medication, use Entocort (or generic budesonide). There is some overlap though, because some GI docs prescribe both Entocort and a mesalamine-based medication to be used concurrently (even though that's usually not a good idea). Since Uceris has become available in the last couple of years, maybe 5–10 % of new members have tried it. But Uceris is also based on budesonide, so it's still a corticosteroid.

Those are just guesses, based on the posts I see here. Obviously there are many members who never post, so it's impossible to guess what they might be doing (though I have received many emails over the years from non-posting members thanking me because they were able to get their life back by reading posts on the board, and/or reading the book, and changing their diet accordingly). But I would venture a guess that many of them choose not to post because they are not willing to commit to the diet changes. Without any diet changes though, the odds are very high that they would have to rely on medications for the rest of their life to control their symptoms. But of course that is the standard medical approach to treating IBDs.

You're very welcome. I hope that some of this is helpful. But maybe someone else has some better estimates. :shrug:

Tex
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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.
bevfromwa
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Post by bevfromwa »

thank you, Tex, that's very helpful. I guess the next logical question then is whether you have a poll or approx. number of people who have had testing through Enterolab? Since so many PCPs are unfamiliar with them, that might be good ammunition also.

Thanks again,

Beverly
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tex
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Post by tex »

The problem is, I doubt that very many doctors will be favorably impressed just because we choose to order tests that they don't endorse. But . . . I'll be happy to set up a poll.

Tex
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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.
bevfromwa
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Post by bevfromwa »

well, there is that! thanks for the good ammo for my appointment tomorrow. If anything interesting happens I'll be sure to report.

Beverly
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tex
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Post by tex »

Hi Beverly,

I assume that you found the poll. If not, it's at the link below:

http://www.perskyfarms.com/phpBB2/viewtopic.php?t=20674

The poll is running at 82 % happy users right now, and 5 % disappointed users, for a total of 87 % of the members who have voted. I believe that we can safely assume that everyone who ordered the tests changed their diet, and obviously many who did not order the tests also changed their diet (many follow an elimination diet rather than to order the tests), so my estimate of 90–95 % is probably a safe ballpark figure (though it appears that I may have guessed too low).

Good luck with the appointment.

Tex
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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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Gabes-Apg
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Post by Gabes-Apg »

Beverly
have you tried googling for any published studies regarding Diet helping IBD's, not just MC?

Regarding the thyroid issues, i think the number is actually higher. My TSH has tested 'in range' for the past 8 years. I had the symptoms of hypothyroid, so I paid $55 for iodine level test (urine based) I was moderately deficient, close to severely deficient. which is direct link to thyroid issues.

Ask for the iodine level test.

Good luck with the visit....
Gabes Ryan

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Post by Gabes-Apg »

PS - i didnt do the tests, as I couldnt afford them, based on the knowledge shared here I used elimination method to identify major triggers, and most of the medium type food based triggers, Used strict diet (with acupuncture, bone broth and good quality supplements) to attain remission within 2 years
Gabes Ryan

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