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I have been doing pretty well since the doc put me on Entecort in April. I am now weaning myself off and taking 2 a day. I have only had two flares and that was when I ate french fries and some pills I was taking that contained milk. I am egg free, DF, and pretty much SF. I was tested for celiac by both blood test and biopsy and both were negative. Gluten does not seem to bother me at all. Fiber does seem to be a problem and eat very little. I also try to avoid sugar and rice. Last night I grilled a bunch of veggies, cooked them well, and ate more than I usually do. This morning I did not have D, but felt a little off. I do take a good multi-vitamin, fish oil, Co-enzyme Q10, Vit. C, K, and D, calcium w/magnesium. Without eating salads and many vegetables, should I be concerned about not getting enough nutrients that I would normally get from them? Or, any suggestions on what I could eat that would give me what I need.
Nancy
Getting the right nutrients
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Nancy,
I take a GF/DF/SF B-vitamin complex, plus extra B-12. (I don't know whether you need to do that... but I think I should keep it up.)
I am amazed you don't seem to react to gluten - I thought I remembered your Enterolab testing coming back decisively high for anti-gliadin antibodies.
I think your first priority is healing, and you'll be better able to adjust either to new foods and/or supplements when you're a little farther down the road. So I wouldn't add too much while you're tapering your Entocort down. (But I always say that - so you have to take it with a grain of salt!)
Glad to hear you're doing well. I wonder whether it was the potatoes themselves, or the oil, that you reacted to in the french fries? I had some frozen sweet-potato fries that were coated with some kind of starch, and I have heard that some are coated with flour...
All my best,
Sara
I take a GF/DF/SF B-vitamin complex, plus extra B-12. (I don't know whether you need to do that... but I think I should keep it up.)
I am amazed you don't seem to react to gluten - I thought I remembered your Enterolab testing coming back decisively high for anti-gliadin antibodies.
I think your first priority is healing, and you'll be better able to adjust either to new foods and/or supplements when you're a little farther down the road. So I wouldn't add too much while you're tapering your Entocort down. (But I always say that - so you have to take it with a grain of salt!)
Glad to hear you're doing well. I wonder whether it was the potatoes themselves, or the oil, that you reacted to in the french fries? I had some frozen sweet-potato fries that were coated with some kind of starch, and I have heard that some are coated with flour...
All my best,
Sara
Sara,
My testing for anti-gliadin antibodies was 40. I have been normal everyday since April as long as I keep to my diet. I think it had to be the oil because I eat both white and sweet potatoes all the time with no issues. I had my gallbladder removed several years ago and have always had to watch fried foods, but usually could eat more than I do now, which is zero. I have been able to gain a few pounds and have my energy back. I was fortunate not to suffer from joint pain, cramps, brain fog, and only fatigue when I had the D. If I am stressed I will also have a problem, but I have something to help with that if needed, which isn't often.
Nancy
My testing for anti-gliadin antibodies was 40. I have been normal everyday since April as long as I keep to my diet. I think it had to be the oil because I eat both white and sweet potatoes all the time with no issues. I had my gallbladder removed several years ago and have always had to watch fried foods, but usually could eat more than I do now, which is zero. I have been able to gain a few pounds and have my energy back. I was fortunate not to suffer from joint pain, cramps, brain fog, and only fatigue when I had the D. If I am stressed I will also have a problem, but I have something to help with that if needed, which isn't often.
Nancy
Nancy,
I don't understand your approach to your treatment. Here are your test results:
Fecal Anti-gliadin IgA 40 Units (Normal Range is less than 10 Units)
Fecal Anti-casein (cow’s milk) IgA 14 Units (Normal Range is less than 10 Units)
Fecal Anti-ovalbumin (chicken egg) IgA 21 Units (Normal Range is less than 10 Units)
Fecal Anti-soy IgA 33 Units (Normal Range is less than 10 Units)
You seem to be concerned about the two weakest test results, (casein and egg), but you say that gluten doesn't bother you, and you are mostly soy-free, (even though gluten and soy had the highest test scores). Are you still eating gluten? With an anti-gliadin score of 40, there is absolutely no doubt that you are sensitive to gluten. Since you don't feel that you react to it, you are probably asymptomatic, (just as many celiacs are asymptomatic to gluten-sensitivity), and the same might possibly be true for soy, in your case.
I realize that each of has to determine our own treatment program, based on our needs, but here's what concerns me:
Unfortunately, just because you seem to be asymptomatic to gluten-sensitivity, does not mean that the gluten is not damaging your intestines. The damage continues, (just as the damage continues to accrue for asymptomatic celiacs) - it causes cellular damage, (on a microscopic level), even though it does not cause clinical symptoms. However, that damage can make you sensitive to other foods, (and of course, it can make you vulnerable to other autoimmune issues, in the long run). It's a shame that you didn't order the anti-tissuetransglutaminase antibody test, because that would have told you whether or not you are experiencing an autoimmune reaction from the gluten, (despite being asymptomatic).
The other way to look at this is that it would be very, very unusual to be asymptomatic to gluten-sensitivity, and still react to casein and/or eggs, since those are lower order peptides that mimic gluten. IOW, it seems very strange that you would be sensitive to casein and/or eggs, if you are not sensitive to gluten and/or soy.
Anyway, I'm just thinking out loud here, and trying to find a reason why you're still having reactions. I'm not trying to claim that your reactions are directly due to gluten, (because you seem to be asymptomatic to gluten), but those reactions may well be indirectly caused by gluten, because of the residual damage that it causes to your intestines.
You may recall that I've mentioned at least several times on the board, that even though I kept a food diary, I was never able to determine that gluten ever caused me to have a reaction. Instead, everything else always seemed to make me sick, in a random, disorganized fashion. That was probably due to all the damage that the gluten did to my body. An Enterolab test, done 3 years after I had adopted the GF diet, still showed some residual damage to my intestines, that had not yet healed. After most of the damage healed, I could eat virtually anything I wanted, (except gluten, and a few minor items), without any problems.
My main concern is that as your doc requires you to wean off the Entocort, if your diet is not "up to snuff", you may end up back at square one.
Tex
I don't understand your approach to your treatment. Here are your test results:
Fecal Anti-gliadin IgA 40 Units (Normal Range is less than 10 Units)
Fecal Anti-casein (cow’s milk) IgA 14 Units (Normal Range is less than 10 Units)
Fecal Anti-ovalbumin (chicken egg) IgA 21 Units (Normal Range is less than 10 Units)
Fecal Anti-soy IgA 33 Units (Normal Range is less than 10 Units)
You seem to be concerned about the two weakest test results, (casein and egg), but you say that gluten doesn't bother you, and you are mostly soy-free, (even though gluten and soy had the highest test scores). Are you still eating gluten? With an anti-gliadin score of 40, there is absolutely no doubt that you are sensitive to gluten. Since you don't feel that you react to it, you are probably asymptomatic, (just as many celiacs are asymptomatic to gluten-sensitivity), and the same might possibly be true for soy, in your case.
I realize that each of has to determine our own treatment program, based on our needs, but here's what concerns me:
Unfortunately, just because you seem to be asymptomatic to gluten-sensitivity, does not mean that the gluten is not damaging your intestines. The damage continues, (just as the damage continues to accrue for asymptomatic celiacs) - it causes cellular damage, (on a microscopic level), even though it does not cause clinical symptoms. However, that damage can make you sensitive to other foods, (and of course, it can make you vulnerable to other autoimmune issues, in the long run). It's a shame that you didn't order the anti-tissuetransglutaminase antibody test, because that would have told you whether or not you are experiencing an autoimmune reaction from the gluten, (despite being asymptomatic).
The other way to look at this is that it would be very, very unusual to be asymptomatic to gluten-sensitivity, and still react to casein and/or eggs, since those are lower order peptides that mimic gluten. IOW, it seems very strange that you would be sensitive to casein and/or eggs, if you are not sensitive to gluten and/or soy.
Anyway, I'm just thinking out loud here, and trying to find a reason why you're still having reactions. I'm not trying to claim that your reactions are directly due to gluten, (because you seem to be asymptomatic to gluten), but those reactions may well be indirectly caused by gluten, because of the residual damage that it causes to your intestines.
You may recall that I've mentioned at least several times on the board, that even though I kept a food diary, I was never able to determine that gluten ever caused me to have a reaction. Instead, everything else always seemed to make me sick, in a random, disorganized fashion. That was probably due to all the damage that the gluten did to my body. An Enterolab test, done 3 years after I had adopted the GF diet, still showed some residual damage to my intestines, that had not yet healed. After most of the damage healed, I could eat virtually anything I wanted, (except gluten, and a few minor items), without any problems.
My main concern is that as your doc requires you to wean off the Entocort, if your diet is not "up to snuff", you may end up back at square one.
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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MBombardier
- Rockhopper Penguin
- Posts: 1523
- Joined: Thu Oct 14, 2010 10:44 am
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I was asymptomatic to gluten until I was GF for about three weeks and accidentally ingested some. I was 53, and had never had any reaction to gluten whatsoever that I knew of. But my fecal fat absorption numbers show the damage from it.
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
Tex and Marliss,
You bring up some very good points for me to look at. It would not be hard to eliminate gluten as I eat very small amounts of it now. Soy is something I have stayed away from for years because I have had breast cancer and the NP at the Beth Israel Breast Care Clinic had warned me to watch my soy intake. The eggs made me nauseous, but did not cause diarrhea. Looking back, eating ice cream usually sent me to the bathroom within a couple of days and during my flares I only had to drink 1/4 cup of milk and I would be in the bathroom. I actually didn't have much of a reaction today as I thought I was going to. Just felt a little off early this morning, but fine the rest of the day. Norman has visited everyday since April except for the french fry incident and the pills containing milk. Sometimes, I think feeling a little off would not have earned a second thought before this. Perhaps we can feel a little off that it quite normal.
As always, thanks for your input.
Nancy
You bring up some very good points for me to look at. It would not be hard to eliminate gluten as I eat very small amounts of it now. Soy is something I have stayed away from for years because I have had breast cancer and the NP at the Beth Israel Breast Care Clinic had warned me to watch my soy intake. The eggs made me nauseous, but did not cause diarrhea. Looking back, eating ice cream usually sent me to the bathroom within a couple of days and during my flares I only had to drink 1/4 cup of milk and I would be in the bathroom. I actually didn't have much of a reaction today as I thought I was going to. Just felt a little off early this morning, but fine the rest of the day. Norman has visited everyday since April except for the french fry incident and the pills containing milk. Sometimes, I think feeling a little off would not have earned a second thought before this. Perhaps we can feel a little off that it quite normal.
As always, thanks for your input.
Nancy
Nancy,
You're right, of course. Everyone has "off" days, now and then, and everyone has D, once in a while. We tend to immediately attribute any such symptoms to MC, but the fact is, we're subject to the same issues as anyone in the general population, including stomach or intestinal viruses, eating too much spicy food, etc. Every GI issue, is not due to MC, (though many of them can lead to MC, if they last long enough to get the inflammation going again).
Of course, just because most people seem "normal", doesn't mean that they actually are. Research shows that for each case of diagnosed celiac disease, there are about a hundred undiagnosed cases out there, and the same, (or worse), is probably true of MC. From that viewpoint, maybe it's not just a coincidence that "just about everyone" gets sick, once in a while - maybe there's a reason - maybe they're just in the early stages of disease due to gluten-sensitivity.
Tex
You're right, of course. Everyone has "off" days, now and then, and everyone has D, once in a while. We tend to immediately attribute any such symptoms to MC, but the fact is, we're subject to the same issues as anyone in the general population, including stomach or intestinal viruses, eating too much spicy food, etc. Every GI issue, is not due to MC, (though many of them can lead to MC, if they last long enough to get the inflammation going again).
Of course, just because most people seem "normal", doesn't mean that they actually are. Research shows that for each case of diagnosed celiac disease, there are about a hundred undiagnosed cases out there, and the same, (or worse), is probably true of MC. From that viewpoint, maybe it's not just a coincidence that "just about everyone" gets sick, once in a while - maybe there's a reason - maybe they're just in the early stages of disease due to gluten-sensitivity.
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.