It went better than I thought it would but I didn't say a lot of what I would have liked to have said. (I did take Diazepam before my appointment.)
The bad: She did make a little dig about the validity of EL. She also said my disease could progress. I wanted to say why would it if I take out the offending gluten? Am I wrong about this? Maybe I'm making a bad assumption.
The good: She wants me to be a test patient in regards to being GF. She'd be interested in not having all her MC patients taking meds if they aren't necessary!
I'll see her again in 6 months.
My first GI appointment
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
My first GI appointment
DISCLAIMER: I am not a doctor and don't play one on TV.
LDN July 18, 2014
Joan
LDN July 18, 2014
Joan
Joan,
Here's your gold star:
Most GI docs still don't recognize the validity of stool tests - it's hard to fault them for this, when that's what they are taught in med school, and that's what most of their peers claim is true. There are so many "quacks" and "bogus treatment programs" in the medical world, that doctors are naturally leery of any "new" treatment methods, ("new" to most doctors, is anything that has happened in the last 10 to 20 years).
As far is your disease getting worse over time is concerned: Many medical "experts" believe that MC is a precursor to Crohn's disease or Ulcerative Colitis. That proposition is stated in numerous locations in the literature. I have yet to see any substantive evidence, however, to justify that claim. This board is now over three years old. Many of us were on Sally's old board for three or fours prior to that, (I'm a relative newbie, since I was only a member of Sally's board for about a year), and a few even subscribed to Judy Malinowski's newsletter, before Sally created her board. So far, out of all those hundreds of members, I am aware of one member who was first diagnosed with MC, and subsequently diagnosed with UC. In her case, the UC diagnosis came only 62 days after the MC diagnosis, so I suspect that the UC was simply overlooked, when the initial diagnosis was made. I know of no one who has been diagnosed with Crohn's, since being diagnosed with MC, (I'm not saying that it's not possible, I'm just saying that I'm not personally aware of any case where this has happened).
Having MC does not make us immune to anything, as far as I am aware, so we are therefore probably susceptible to approximately the same risks of developing any other GI disease, as anyone in the general population. IOW, I would say that it is almost certain that somewhere in the world, someone with MC has probably subsequently developed either UC or Crohn's, after developing MC. But so what - it's obviously a very rare occurrence, and I see no evidence that indicates that patients with MC have any greater risk of developing any other IBD, than anyone in the general population, for all practical purposes. IOW, until proven wrong, I claim that the "popular" medical "hunch" that MC leads to more serious IBDs, is totally unfounded, and not substantiated by the facts. MC is indeed linked with an increased risk of developing other autoimmune diseases in general, but the evidence indicates that in most cases, the additional autoimmune conditions that develop are not IBDs, and in most cases, when gluten is removed from the diet, those other autoimmune issues either disappear, improve significantly, or never appear in the first place.
Many of us have a nagging suspicion that MC may be a precursor to celiac sprue, but again, the evidence indicates otherwise. We have a few members whose first diagnosis was celiac disease, and they were later diagnosed with MC, but I know of no examples the other way around. Personally, I suspect that if a person with MC is gluten sensitive, and chooses not to treat that sensitivity, then there might eventually be a risk of developing celiac sprue, but it would be in addition to MC, not in place of it. Even so, I believe that risk is very low, because I'm not aware of anyone who has experienced this.
Good going! You've found a great GI doc!
Tex
Wow! That's an awesome accomplishment! Either you did an incredible job of "selling" her, or she is one to the very few GI docs in the world who are truly open minded, and willing to learn from their patients. Probably both explanations apply, because I don't believe that any of us have ever heard such words from any of our GI docs prior to this, (or anything even close to that). Good for you.Joan wrote:The good: She wants me to be a test patient in regards to being GF. She'd be interested in not having all her MC patients taking meds if they aren't necessary!
Here's your gold star:
Well, I wouldn't hold this against her, since the good part was so incredibly good. It takes ten "Attagirl!s" to make up for one "Aw Sh*t!", but in this case, her willingness to consider a diet change as a legitimate treatment for MC, is clearly worth at least ten "Attagirl!s", and probably many more.Joan also wrote:The bad: She did make a little dig about the validity of EL. She also said my disease could progress. I wanted to say why would it if I take out the offending gluten? Am I wrong about this? Maybe I'm making a bad assumption.
Most GI docs still don't recognize the validity of stool tests - it's hard to fault them for this, when that's what they are taught in med school, and that's what most of their peers claim is true. There are so many "quacks" and "bogus treatment programs" in the medical world, that doctors are naturally leery of any "new" treatment methods, ("new" to most doctors, is anything that has happened in the last 10 to 20 years).
As far is your disease getting worse over time is concerned: Many medical "experts" believe that MC is a precursor to Crohn's disease or Ulcerative Colitis. That proposition is stated in numerous locations in the literature. I have yet to see any substantive evidence, however, to justify that claim. This board is now over three years old. Many of us were on Sally's old board for three or fours prior to that, (I'm a relative newbie, since I was only a member of Sally's board for about a year), and a few even subscribed to Judy Malinowski's newsletter, before Sally created her board. So far, out of all those hundreds of members, I am aware of one member who was first diagnosed with MC, and subsequently diagnosed with UC. In her case, the UC diagnosis came only 62 days after the MC diagnosis, so I suspect that the UC was simply overlooked, when the initial diagnosis was made. I know of no one who has been diagnosed with Crohn's, since being diagnosed with MC, (I'm not saying that it's not possible, I'm just saying that I'm not personally aware of any case where this has happened).
Having MC does not make us immune to anything, as far as I am aware, so we are therefore probably susceptible to approximately the same risks of developing any other GI disease, as anyone in the general population. IOW, I would say that it is almost certain that somewhere in the world, someone with MC has probably subsequently developed either UC or Crohn's, after developing MC. But so what - it's obviously a very rare occurrence, and I see no evidence that indicates that patients with MC have any greater risk of developing any other IBD, than anyone in the general population, for all practical purposes. IOW, until proven wrong, I claim that the "popular" medical "hunch" that MC leads to more serious IBDs, is totally unfounded, and not substantiated by the facts. MC is indeed linked with an increased risk of developing other autoimmune diseases in general, but the evidence indicates that in most cases, the additional autoimmune conditions that develop are not IBDs, and in most cases, when gluten is removed from the diet, those other autoimmune issues either disappear, improve significantly, or never appear in the first place.
Many of us have a nagging suspicion that MC may be a precursor to celiac sprue, but again, the evidence indicates otherwise. We have a few members whose first diagnosis was celiac disease, and they were later diagnosed with MC, but I know of no examples the other way around. Personally, I suspect that if a person with MC is gluten sensitive, and chooses not to treat that sensitivity, then there might eventually be a risk of developing celiac sprue, but it would be in addition to MC, not in place of it. Even so, I believe that risk is very low, because I'm not aware of anyone who has experienced this.
Good going! You've found a great GI doc!
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.
Bravo for you, Joan! You must have made an impression on your GI for her to designate you as a test patient. That's great news!
No surprise about the EL reaction, though. Not too many GIs have even heard of it, much less endorse it. Hopefully Dr. Fine will publish someday and that will change, but I wouldn't hold my breath. We've been waiting several years for that to happen.
Gloria
No surprise about the EL reaction, though. Not too many GIs have even heard of it, much less endorse it. Hopefully Dr. Fine will publish someday and that will change, but I wouldn't hold my breath. We've been waiting several years for that to happen.
Gloria
You never know what you can do until you have to do it.
I'm so proud to receive a gold star because I want to be like Xet......
I wanted to tell my GI where to find more MC patients controlling their symptoms with diet but I guess she'd better not read here. NOT that she would have the time. I'd like to tell her I learned it right HERE from a special group of people who are my new family.
I wanted to tell my GI where to find more MC patients controlling their symptoms with diet but I guess she'd better not read here. NOT that she would have the time. I'd like to tell her I learned it right HERE from a special group of people who are my new family.
DISCLAIMER: I am not a doctor and don't play one on TV.
LDN July 18, 2014
Joan
LDN July 18, 2014
Joan
Joan,
Those gold stars under the avatars represent years of membership. IOW, xet has been a member for at least three years. The system automatically adds a star each year on the anniversary of registration for membership.
Tex
Those gold stars under the avatars represent years of membership. IOW, xet has been a member for at least three years. The system automatically adds a star each year on the anniversary of registration for membership.
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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MaggieRedwings
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