Hi, I am new to this site. I am new to MC. I am having trouble finding a good doctor. I live in Brooklyn, NY.
my story- dr #1 diagnosed me with colitis years ago, all he would say is not UC and i was satisfied with this I got better with dietary changes after seeing a nutritionist (because i had an extreme sedative reaction to pentasa + asacol).
I had a recent flare up and it was worse than anything i could have imagined. i went back to Dr #1 he said i had IBS, i knew this wasn't true and left.
I found Dr #2 he did a sigmoidoscopy & found I had MC + put me on entocort (which helped for a time but stopped when i went off of it) then he put me on another med (same family as pentasa + asacol) although i told him about my reaction + i had a worse reaction than before when i called him repeatedly he never returned my calls (awful).
i found Dr #3 he said it was a parasite and put me on flagyl + i felt wonderful till i went off flagyl then not so wonderful. i told him about dr #2's diagnosis + he said he didn't believe it because it's too rare and would need to give me a colonoscopy + endoscopy to confirm (i think he didn't believe it because he never gives the appropriate test to his patients so he believes it is rare). because of his attitude i don't feel confident in him.
right now i am eating a lot of rice, chicken + fish, just discovered that milk products are a no-no for me (even lactose free yogurt- so sad).
does anyone have a dr in NYC who actually believes that MC exists or at least is not a rare condition or someone who gives the test to his patients regularly because he knows it exists and isn't rare. in other words does anyone have a dr who respects his patients and that works well with his patients.
doctor in NYC
Moderators: Rosie, JFR, Dee, xet, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh, mbeezie
Hello Nat,
Welcome to our Internet family. We consider ourselves a family because no one truly understands this disease unless they actually have it, and unfortunately that includes most physicians.
Wow! You have really encountered some duds in your search for a gastroenterologist. The incompetence of those guys you mentioned would be hard to believe if so many of us hadn't had similar experiences.
Unfortunately MC-knowledgeable gastroenterologists are in rather short supply in NY because so far only 1 has been recommended by other members here. Here is his contact information:
Dr. Paul Pervil
Gastrointestinal Associates
146A Manetto Hill Rd.
Suite 205
Plainview, NY 11803
(516) 822-4404
https://www.northwell.edu/find-care/fin ... d-11310508
Other than the fact that a member here found him to be helpful in treating their MC, we have no information on him. I checked and he is accepting new patients according to the website.
Yes, virtually all of us are sensitive to gluten (despite negative celiac test results), and most of us here are sensitive to casein, the primary protein in all dairy products, so we have to avoid all dairy products. Many of us are also sensitive to soy and all ingredients made from soy. Many of us have additional food sensitivities that we have to avoid.
But by carefully avoiding our food sensitivities (100 %) most of us are able to control our symptoms.
I hope that this is helpful. Again, welcome aboard, and please feel free to ask anything.
Tex
Welcome to our Internet family. We consider ourselves a family because no one truly understands this disease unless they actually have it, and unfortunately that includes most physicians.
Wow! You have really encountered some duds in your search for a gastroenterologist. The incompetence of those guys you mentioned would be hard to believe if so many of us hadn't had similar experiences.
Unfortunately MC-knowledgeable gastroenterologists are in rather short supply in NY because so far only 1 has been recommended by other members here. Here is his contact information:
Dr. Paul Pervil
Gastrointestinal Associates
146A Manetto Hill Rd.
Suite 205
Plainview, NY 11803
(516) 822-4404
https://www.northwell.edu/find-care/fin ... d-11310508
Other than the fact that a member here found him to be helpful in treating their MC, we have no information on him. I checked and he is accepting new patients according to the website.
Yes, virtually all of us are sensitive to gluten (despite negative celiac test results), and most of us here are sensitive to casein, the primary protein in all dairy products, so we have to avoid all dairy products. Many of us are also sensitive to soy and all ingredients made from soy. Many of us have additional food sensitivities that we have to avoid.
But by carefully avoiding our food sensitivities (100 %) most of us are able to control our symptoms.
I hope that this is helpful. Again, welcome aboard, 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.
dr in nyc
Thanks so much for your quick response Tex.
i have found that i am unable to eat gluten, soya and dairy.
often high fat foods (that is usually the way food is prepared in restaurants) have an awful effect on me.
but by restricting my diet my poop is more normal than it has been in a very long time, still i don't feel normal and by that i don't mean normal psychologically, i mean physically. when i was on the flagyl my body felt normal and i was so grateful but that was short lived once off the flagyl i was back to the races (that is racing to the bathroom) and hearing my stomach make awful noises- embarrassing myself at work.
what do people eat?
how do you eat in a restaurant?
i have found that i am unable to eat gluten, soya and dairy.
often high fat foods (that is usually the way food is prepared in restaurants) have an awful effect on me.
but by restricting my diet my poop is more normal than it has been in a very long time, still i don't feel normal and by that i don't mean normal psychologically, i mean physically. when i was on the flagyl my body felt normal and i was so grateful but that was short lived once off the flagyl i was back to the races (that is racing to the bathroom) and hearing my stomach make awful noises- embarrassing myself at work.
what do people eat?
how do you eat in a restaurant?
Thank you,
Nat
Nat
Hi Nat,
With a consistently safe diet, the antibody production will soon cease so that the inflammation will slowly fade away and the digestive system will heal. The loud digestive system noises that are so common with MC will also fade away along with the other symptoms. The fatigue and brain fog take longer to resolve but they too will slowly fade away as the gut heals. It takes a while to completely heal, but the key is to avoid all of our food sensitivities so that the inflammation disappears. And this includes avoiding any medications that are known to trigger MC.
Eating away from home is very difficult for most of us, because despite what they claim, many restaurants cannot provide food that is actually safe for people who have food sensitivities unless they have a dedicated counter space where they can prepare food without cross-contamination, and their chefs truly understand the difficulty of preparing safe food. Cross-contaminated food is a common problem at many of the fast food chains. The better restaurants are more likely to do a better job with safe food preparation because their chefs actually understand the requirements for preventing cross-contamination, and they have more time to devote their attention to doing it right.
You can download a PDF article containing some food guideline suggestions at the link below:
http://www.microscopiccolitisfoundation ... 070516.pdf
You're very welcome,
Tex
With a consistently safe diet, the antibody production will soon cease so that the inflammation will slowly fade away and the digestive system will heal. The loud digestive system noises that are so common with MC will also fade away along with the other symptoms. The fatigue and brain fog take longer to resolve but they too will slowly fade away as the gut heals. It takes a while to completely heal, but the key is to avoid all of our food sensitivities so that the inflammation disappears. And this includes avoiding any medications that are known to trigger MC.
Eating away from home is very difficult for most of us, because despite what they claim, many restaurants cannot provide food that is actually safe for people who have food sensitivities unless they have a dedicated counter space where they can prepare food without cross-contamination, and their chefs truly understand the difficulty of preparing safe food. Cross-contaminated food is a common problem at many of the fast food chains. The better restaurants are more likely to do a better job with safe food preparation because their chefs actually understand the requirements for preventing cross-contamination, and they have more time to devote their attention to doing it right.
You can download a PDF article containing some food guideline suggestions at the link below:
http://www.microscopiccolitisfoundation ... 070516.pdf
You're very welcome,
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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virginianaughton
- Posts: 8
- Joined: Fri Feb 19, 2016 11:41 am
Hello Nat,
I was diagnosed with MC in January 2016 and also live in Brooklyn, NY.
I was diagnosed by Dr. Robert Kodsi. He is very sweet and knowledgeable but also seems not to believe a gluten connection unless the Sprue tests come out positive. However, he at least he admits that "Whatever works is what you should do" and he always does biopsies with any colonoscopy done through his office.
Let me know if you find a good doctor or even a nutritionist and I will do the same for you.
Virginia
I was diagnosed with MC in January 2016 and also live in Brooklyn, NY.
I was diagnosed by Dr. Robert Kodsi. He is very sweet and knowledgeable but also seems not to believe a gluten connection unless the Sprue tests come out positive. However, he at least he admits that "Whatever works is what you should do" and he always does biopsies with any colonoscopy done through his office.
Let me know if you find a good doctor or even a nutritionist and I will do the same for you.
Virginia