List Of Recommended Doctors
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
recommended doctors
You'd think there would be someone in Omaha, NE, but I don't see anyone on the list.
Hi Nancy,
It's possible that there might be someone in Omaha, but we haven't of them yet if they exist. The sad truth is that there are precious few GI specialists in the world who understand this disease well enough to be able to effectively treat it. Most of them deny the diet connection and focus instead on powerful drugs that are not good choices (or even safe choices) for long-term control.
Tex
It's possible that there might be someone in Omaha, but we haven't of them yet if they exist. The sad truth is that there are precious few GI specialists in the world who understand this disease well enough to be able to effectively treat it. Most of them deny the diet connection and focus instead on powerful drugs that are not good choices (or even safe choices) for long-term control.
Tex
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.
Has anyone on the site seen Dr. Jeffrey Fenyves in TN? I see him listed but am not sure where the recommendation comes from. Also, I wonder if anyone else besides jgivens has seen Dr. Crane in Grand Rapids. Jgivens doesn't appear to be on the forum anymore so I am wondering how things turned out under his care (hopefully she is well!).
Unfortunately, I don't recall who recommended that particular doctor (Dr. Jeffrey Fenyves), and I can't find any posts about him, either.
You might try sending an email to Jane (Jgivens), to ask her opinion pf Dr. Crane. I have a hunch she would be happy to help.
Tex
You might try sending an email to Jane (Jgivens), to ask her opinion pf Dr. Crane. I have a hunch she would be happy to help.
Tex
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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TheNutmegger
- Posts: 7
- Joined: Fri Aug 22, 2014 8:31 pm
- Location: Washington, DC
Sure. Of course the lists are quite limited for many parts of the country, because qualified specialists knowledgeable about treating MC seem to be few and far between, but here's what we have so far:
List Of Doctors Who Are Very Helpful For Treating MC, CC, LC
List Of Doctors Very Helpful For Treating Mast Cell Issues
Tex
List Of Doctors Who Are Very Helpful For Treating MC, CC, LC
List Of Doctors Very Helpful For Treating Mast Cell Issues
Tex
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.
Re: List Of Recommended Doctors
Hi Tex,
Was reading you 2011 quote regarding more than an 8 week course on Entocord needed..my CC is completely unknown in South Africa, and the Entocort worked for a while only. As my Specialist had no clue what to do,I made him leave me on the Entocort as there was no other meds.After a year I now have severe secondary osteoporosis..caused by prolonged use of steroids! I am back to the start of this degrading disease....even worse off and no medication to help!
Regards
Noels
Was reading you 2011 quote regarding more than an 8 week course on Entocord needed..my CC is completely unknown in South Africa, and the Entocort worked for a while only. As my Specialist had no clue what to do,I made him leave me on the Entocort as there was no other meds.After a year I now have severe secondary osteoporosis..caused by prolonged use of steroids! I am back to the start of this degrading disease....even worse off and no medication to help!
Regards
Noels
Noels
Hi Noels,
Welcome to our Internet family. I'm sorry to hear that the Entocort no longer works for you, and that it caused an increase in your osteoporosis problem. The reason why I say that it caused an increase in your osteoporosis problem is because it would be almost impossible for Entocort alone to cause a severe osteoporosis problem in only 1 year. Unlike the other corticosteroids, less than 20 % of the active ingredient in Entocort (budesonide) is absorbed into the bloodstream, so it can only add to osteoporosis damage at a very slow rate.
Is wheat flour a part of your diet? My guess is that your osteoporosis is caused by a sensitivity to wheat gluten. Gluten sensitivity is the number 1 cause of osteoporosis. Wheat gluten causes severe damage to the small intestine that prevents our intestines from absorbing calcium, magnesium, and vitamin D needed for bone growth. For those of us who are sensitive to wheat gluten, it takes only a very small amount of it on a regular basis to cause extensive damage to both our intestines and our bones. That's why almost all of us here on this discussion board have to totally avoid all traces of wheat gluten (and also rye, barley, and oats). Most of us also have to avoid milk and all dairy products, and some of us have other food sensitivities.
But if we cut all of those foods that contain gluten or dairy completely out of our diet, we are able to eliminate all of our CC or LC symptoms without any need for any medications. I have been in remission for over 10 years now, by diet changes alone. If you are sensitive to gluten, after you eliminate it from your diet, your intestines will begin to heal. And after that, the progress of your osteoporosis will be reversed, and if you remain careful with your diet, eventually your bones will begin to grow stronger, also.
Again, welcome to the discussion board, and please feel free to ask anything.
Tex
Welcome to our Internet family. I'm sorry to hear that the Entocort no longer works for you, and that it caused an increase in your osteoporosis problem. The reason why I say that it caused an increase in your osteoporosis problem is because it would be almost impossible for Entocort alone to cause a severe osteoporosis problem in only 1 year. Unlike the other corticosteroids, less than 20 % of the active ingredient in Entocort (budesonide) is absorbed into the bloodstream, so it can only add to osteoporosis damage at a very slow rate.
Is wheat flour a part of your diet? My guess is that your osteoporosis is caused by a sensitivity to wheat gluten. Gluten sensitivity is the number 1 cause of osteoporosis. Wheat gluten causes severe damage to the small intestine that prevents our intestines from absorbing calcium, magnesium, and vitamin D needed for bone growth. For those of us who are sensitive to wheat gluten, it takes only a very small amount of it on a regular basis to cause extensive damage to both our intestines and our bones. That's why almost all of us here on this discussion board have to totally avoid all traces of wheat gluten (and also rye, barley, and oats). Most of us also have to avoid milk and all dairy products, and some of us have other food sensitivities.
But if we cut all of those foods that contain gluten or dairy completely out of our diet, we are able to eliminate all of our CC or LC symptoms without any need for any medications. I have been in remission for over 10 years now, by diet changes alone. If you are sensitive to gluten, after you eliminate it from your diet, your intestines will begin to heal. And after that, the progress of your osteoporosis will be reversed, and if you remain careful with your diet, eventually your bones will begin to grow stronger, also.
Again, welcome to the discussion board, and please feel free to ask anything.
Tex
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.
Hi Jeff,
Unfortunately, most of the doctors who have been recommended by members are located on the East Coast. The only listing in Washington so far is:
Dr. Duane Webb
Olympic Medical Physicians Specialty Clinic - Sequim
840 N. 5th Avenue, Suite 1500
Sequim, WA 98382
(360) 582-2840
http://www.olympicmedical.org/default.a ... cianID=233
I'm sorry that we don't have more listings, but to be honest, it seems to be very tough to find GI specialists who actually understand MC and more importantly, understand how to properly treat it.
Tex
Unfortunately, most of the doctors who have been recommended by members are located on the East Coast. The only listing in Washington so far is:
Dr. Duane Webb
Olympic Medical Physicians Specialty Clinic - Sequim
840 N. 5th Avenue, Suite 1500
Sequim, WA 98382
(360) 582-2840
http://www.olympicmedical.org/default.a ... cianID=233
I'm sorry that we don't have more listings, but to be honest, it seems to be very tough to find GI specialists who actually understand MC and more importantly, understand how to properly treat it.
Tex
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.
Jeff,
He's moved to Sequim since our listing was last updated. I just edited and updated my post. I don't know if this new location would be any worse or better for you.
Tex
He's moved to Sequim since our listing was last updated. I just edited and updated my post. I don't know if this new location would be any worse or better for you.
Tex
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.
Found one!
I found one: Charles F Barish of Wake Gastroenterology in Raleigh, NC.
He treats numerous MC patients and other IBDs and is very sympathetic to the plight of us Potty People, unlike my last doc, who was like 'well, you can't stay on Budesonide. I can refer you...'
Turns out I can stay on the Budesonide, since it was working great just 2x/week after a long taper until I ran out and it all came back.
I didn't test him on the food connection, but he certainly seemed smarter than your average doc.
He treats numerous MC patients and other IBDs and is very sympathetic to the plight of us Potty People, unlike my last doc, who was like 'well, you can't stay on Budesonide. I can refer you...'
Turns out I can stay on the Budesonide, since it was working great just 2x/week after a long taper until I ran out and it all came back.
I didn't test him on the food connection, but he certainly seemed smarter than your average doc.
Celiac disease - diagnosed 10/2013
LC - diagnosed 5/2014
LC - diagnosed 5/2014