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You have all been so helpful and I have gained so much knowledge fom you all I hope you don't mind if I pick your brains one more time.
I went to the GI doc yesterday. I was originally diagnosed in January with LC in a colonoscopy because the Dr. suspected C Diff infection after taking Clyndamiacin for a dental infection. He biopsied slightly pink tissue and was surprised (kinda bewildered) that the results were negative for the infection and positive for MC. I think the antibiotic fired the loaded gun that was in my genetic makeup for MC.
After trying Asacol for 6 weeks with no results I tested for the 4 worst food offenders with Enterolab (thanks to your advice) and found I was solidly sensitive to all 4. I'm still in mourning over my food losses but so-o-o pleased that I seem to have a somewhat mild mild form of the disease that responds well to my gf/df/sf/ef/ diet.
Now the Doc wants me to take Flagyl. I have the script in my wallet but I don't know whether to fill it. 2 tests showed negative for C. diff and I certainly don't want to upset my stable-but-still-touchy colon. So that's question 1. Is there any purpose in trying the antibiotic?
I told the doctor that I had read that there is really no real connection between MC and the other IBDs. He said that because some of the same meds are used for both and because some biopsied colons that have been removed show "indeterminate" colitis that it looks like there is a connection, if not a possible progression. But it is difficult to study the pathology of MC since not many MC colons are removed. Any thoughts?
Finally, unrelated to the doctor, I have a couple of food questions. I notice that some of you casein sensitive people make ghee and that you don't react to it. I'm very tired of soy-less Earth Balance and made some clarified butter. Haven't tried it though. Anyone unable/ able to tolerate it? Also, I read that the proteins are removed from soy oil and soy lecithin. Would I be unreasonable in gently testing products with these ingredients?
Chris
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Hi Chris,
It's good to see that you're making progress. While I certainly am not qualified to advise against following your doctor's instructions regarding taking Flagyl, here are some of my thoughts on C. diff:
Usually, when someone with MC develops a C. diff infection, their symptoms are quite severe, with frequent explosive D, (and often blood in the stool), and they typically have severe, continuous abdominal pain and cramps.
IMO, rather than to prescribe Flagyl, he should have done a third culture test, (what was the point of doing the first two culture tests, if he was going to ignore the results and prescribe Flagyl, anyway?). A third negative result would have been pretty reliable evidence that you don't have a C. diff infection, and if it happened to be positive, then he probably should have prescribed Vancomycin, instead, because many strains of C. diff are resistant to Flagyl, these days.
That implies that by taking Flagyl, (unnecessarily), you run the risk of damaging your gut bacteria population balance, without accomplishing any benefit in the process. If you are feeling better these days, (rather than worse), then you probably don't have a C. diff infection. But remember, I'm not a doctor, and these thoughts are just what I would base my decision on, if I were in your shoes.
I've done a lot of research of medical studies concerning MC and how it may relate to other IBDs, and I can see no evidence that those of us with MC have any significantly increased risk of developing Crohn's disease or UC, above and beyond the risk of anyone in the general population developing the disease. IOW, sure, we can get those IBDs, but MC is at most, an extremely weak risk factor for that development, (IMO). The only reason why I rate it as a weak risk, rather than a zero risk, is because autoimmune diseases tend to promote the development of additional autoimmune diseases. If the symptoms are effectively controlled, however, then additional risk is almost always negligible.
According to my theory, a certain combination of environmental factors set us up for the development of autoimmune disease, and our genetics, (and additional environmental factors), determine which disease/s will actually develop.
Tex
It's good to see that you're making progress. While I certainly am not qualified to advise against following your doctor's instructions regarding taking Flagyl, here are some of my thoughts on C. diff:
Usually, when someone with MC develops a C. diff infection, their symptoms are quite severe, with frequent explosive D, (and often blood in the stool), and they typically have severe, continuous abdominal pain and cramps.
IMO, rather than to prescribe Flagyl, he should have done a third culture test, (what was the point of doing the first two culture tests, if he was going to ignore the results and prescribe Flagyl, anyway?). A third negative result would have been pretty reliable evidence that you don't have a C. diff infection, and if it happened to be positive, then he probably should have prescribed Vancomycin, instead, because many strains of C. diff are resistant to Flagyl, these days.
That implies that by taking Flagyl, (unnecessarily), you run the risk of damaging your gut bacteria population balance, without accomplishing any benefit in the process. If you are feeling better these days, (rather than worse), then you probably don't have a C. diff infection. But remember, I'm not a doctor, and these thoughts are just what I would base my decision on, if I were in your shoes.
I've done a lot of research of medical studies concerning MC and how it may relate to other IBDs, and I can see no evidence that those of us with MC have any significantly increased risk of developing Crohn's disease or UC, above and beyond the risk of anyone in the general population developing the disease. IOW, sure, we can get those IBDs, but MC is at most, an extremely weak risk factor for that development, (IMO). The only reason why I rate it as a weak risk, rather than a zero risk, is because autoimmune diseases tend to promote the development of additional autoimmune diseases. If the symptoms are effectively controlled, however, then additional risk is almost always negligible.
According to my theory, a certain combination of environmental factors set us up for the development of autoimmune disease, and our genetics, (and additional environmental factors), determine which disease/s will actually develop.
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.
Test if you like but I don't touch soy oil if I can help it. I buy canola oil mayo and would buy olive oil mayo if I could find it without a soy additive.
I am not as strict with my diet as a lot of people (not proud of that, but it's the facts). I think a soy reaction is worse than a gluten reaction for me.
Love, Shirley
I am not as strict with my diet as a lot of people (not proud of that, but it's the facts). I think a soy reaction is worse than a gluten reaction for me.
Love, Shirley
When the eagles are silent, the parrots begin to jabber"
-- Winston Churchill
-- Winston Churchill
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MBombardier
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I had a GF cookie with about five regular chocolate chips in it the other day to see if the soy lecithin would bother me. It did.
Marliss Bombardier
Dum spiro, spero -- While I breathe, I hope
Psoriasis - the dark ages
Hashimoto's Thyroiditis - Dec 2001
Collagenous Colitis - Sept 2010
Granuloma Annulare - June 2011
Dum spiro, spero -- While I breathe, I hope
Psoriasis - the dark ages
Hashimoto's Thyroiditis - Dec 2001
Collagenous Colitis - Sept 2010
Granuloma Annulare - June 2011
Chris,
I forgot to address your question about the soy oil and lecithin. Shirley and Marliss are right on target, of course - contrary to what the "experts" claim, virtually all of us who are sensitive to soy, will react to soy oil and soy lecithin. This is one issue where theory, (as claimed by the experts), does not hold up in the real world. Experience trumps theory, any day.
Regarding the clarified butter. I am one who reacted to it, when I was recovering. Whether or not one reacts to it probably depends on how carefully the particulates are separated during the process of making ghee, and on one's sensitivity threshold. Some of us can tolerate trace amounts of certain food-sensitivities, while others cannot.
Tex
I forgot to address your question about the soy oil and lecithin. Shirley and Marliss are right on target, of course - contrary to what the "experts" claim, virtually all of us who are sensitive to soy, will react to soy oil and soy lecithin. This is one issue where theory, (as claimed by the experts), does not hold up in the real world. Experience trumps theory, any day.
Regarding the clarified butter. I am one who reacted to it, when I was recovering. Whether or not one reacts to it probably depends on how carefully the particulates are separated during the process of making ghee, and on one's sensitivity threshold. Some of us can tolerate trace amounts of certain food-sensitivities, while others cannot.
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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Christine.
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Thanks Shirley and Marliss for your input. ( although I was hoping for a resounding "no problem" with soy oil and ghee) 
Tex, I really appreciate your thoughtful and thorough reply. I will not take the Flagl for sure. I think I need to look for a new GI doc. I didn't see any on the Dr. list in So. California.
Chris[/url][/quote]
Tex, I really appreciate your thoughtful and thorough reply. I will not take the Flagl for sure. I think I need to look for a new GI doc. I didn't see any on the Dr. list in So. California.
Chris[/url][/quote]
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Christine.
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Thanks Brandy. I use EVOO all the time with no problem. It's great. It's not that I would actually buy soybean oil but I see it as a possible ingredient in prepared products that list 3 or 4 possible oils that could be in the product, one of them being soy. I wish they would state the oil content with certainty.
But...thanks so much for your input on ghee. Maybe I'll put a little on my potato tonight. I can stay home tomorrow if there is a problem
Chris
But...thanks so much for your input on ghee. Maybe I'll put a little on my potato tonight. I can stay home tomorrow if there is a problem
Chris
Hi Chris,
I wouldn't take the Flagyl if you are improving on the diet. I blame my MC on a combination of Flagyl and Levaquin six years ago when I had diverticulitis. My gut has never fully recovered from that potent combination.
I used to make ghee and loved it, but it seems I can no longer eat it. Everyone is different.
Gloria
I wouldn't take the Flagyl if you are improving on the diet. I blame my MC on a combination of Flagyl and Levaquin six years ago when I had diverticulitis. My gut has never fully recovered from that potent combination.
I used to make ghee and loved it, but it seems I can no longer eat it. Everyone is different.
Gloria
You never know what you can do until you have to do it.
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Christine.
- Gentoo Penguin
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Yipes! Thanks Gloria for sealing the deal. No Flagl for me.
I read on this board somewhere in the past few days that the definition of remission can vary a bit from person to person.
I only had 2 months or so between onset of mc symptoms and diagnosis, as opposed to many of you who have been fighting for years. I changed my diet 2 months ago. Within weeks my mouth sores, constant rumblings, gas and multiple BMs went away. Although I'm not 100% what I was pre mc, I'm at 85 or 90% and my normal life has returned.
I still suspect that if I want to be super-diligent I will test for or eliminate even more foods than the big 4 known sensitivities. Maybe I will get even closer to the 100% status. From a lifestyle point of view I'm darn close to my definition of remission but if I need to become a more of a detective to fit a stricter definition of remission, I will do it. Or.....is just more time and holding the present course a prudent way to go?
Chris
I read on this board somewhere in the past few days that the definition of remission can vary a bit from person to person.
I only had 2 months or so between onset of mc symptoms and diagnosis, as opposed to many of you who have been fighting for years. I changed my diet 2 months ago. Within weeks my mouth sores, constant rumblings, gas and multiple BMs went away. Although I'm not 100% what I was pre mc, I'm at 85 or 90% and my normal life has returned.
I still suspect that if I want to be super-diligent I will test for or eliminate even more foods than the big 4 known sensitivities. Maybe I will get even closer to the 100% status. From a lifestyle point of view I'm darn close to my definition of remission but if I need to become a more of a detective to fit a stricter definition of remission, I will do it. Or.....is just more time and holding the present course a prudent way to go?
Chris