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For those who don't now me or my history, my mc started in may 2009, I got my dx in september 2009, started gluten free in october 2009 and after the enterolab testing I went gluten, dairy and soy free in november 2009. Ever since than I have been on a very strict diet, combined with 1 capsule of entocort every day. I react very well on this low dosage. I worked for me instantly.
Despite the entecort and diet, I had a flare up last spring (2011) which I got under control with even a stricter diet of rice meat/fish and tea.
At the moment I am doing quite ok on diet and even a lower dosage of entecort like about 2 mg a day. And that still works.
So that was the long introduction. Now the real issue. Because I am on the diet for so long now, and it was going so well, I thought well lets see what will happen if I totally quit the medication. To make a long story short, on day 3 (what three or four weeks??) my D was back. So conclusion even in an extremely low dosage, entecort is still doing something for me (although my GI does not believe this)
This could mean I am still reacting on something. But for heaven seek on what? I only eat, carrots, broccoli, banana's, canned fruit, all kinds of fish and meat, olive oil, rice, rice milk and fruit juice. Actually I had it a bit with my diet in the sense of skipping more ingredients of the list.
On the other hand, I also think that I am one of the view here (I am a double 3,3 gener here, genes associated with MC according to Dr Fine and multiple food sensitivities according to this message board) who seems not be able to reach remission with diet alone.
I have considered that mast cells might be an issue for me too, but I don't have the impression histamine rich food makes my symptoms worse. For example I eat quite some canned fish (rich of histamine as far as I know) and never make my symptoms worse. And also here I have to admit, gluten, soy, diary free, no night shades, no legumes and than also have to worry about histamine.......it would drive me crazy.
I have thought about the MRT testing, but simple said I don't have the money for it now. Maybe something for the future.
Also inspired on a post of Gloria (I have the idea Gloria we are quite similar in our MC and food issues), it was not about entocort but another medication you use for your mast cell issues. Gloria if I remember it well your conclusion was "if this is working for me, that this is working and I will take it".
Well I have decided that, at least for a while, my goal is no longer to be "to get off of entocort". If the regime that I have now diet and a very low dosage of entocort, than this is what it is going to be for now. And now the tricky part, where I am still a bit reluctant about is, to experiment a bit more with my diet. If will stay of gluten for the full 100%, the same for milk/dairy. But about soy, I wonder would it really hurt if I eat a piece a pure chocolate and there is a little soy lechitin in it.
At the moment I am getting a bit "diet tired". Like said before, will not go back on gluten or dairy but be able to eat out more often, and not worrying so much about the possibility of contamination. And if something happens the entocort will probably surpress any reaction. What if it once in a while does go wrong, so what, if it recovers in a day or two.
On the other hand I have the idea, I am on thin ice, with giving myself permission to experiment a little. But if I once and a while eat something with soy in it, would it really be the end of the world for MC? Or if I get a gluten contamination while going out for dinner? Or I eat something where there is a little milk in it. Seeing this in the light I need my medication anyway it seems.
Is there anyone else here, struggling with the same issue? Others looking for a balance in this issue?
my mc treatment plan, diet and medication, update/questions
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Hi Harma,
Here are my thoughts:
You have a celiac gene, (DQ8), and your small intestine showed significant damage when you did the fecal fat test. There is no research to back this up, but I have a hunch that people with celiac genes, (who are therefore vulnerable to small intestinal villus damage), may also experience the same type of damage from other food-sensitivities besides gluten. IOW, I suspect that casein, soy, and other types of gluten, (such as the zein in corn, and possibly even the orzenin in rice), may cause villus atrophy for those who happen to be sensitive to them, (by virtue of the celiac gene). DogtorJ, (Dr. John Symes, a vet in GB), has made such claims, (not about the genetics involved, but about villus damage from other sources of gluten), but if he has any research data to back them up, I'm not aware of the sources.
Research suggests that for those of us with non-celiac gluten-sensitive genes, villus damage does not normally exceed a Marsh rating of 1, (only lymphocytic infiltration), whereas for those with a celiac gene, the Marsh rating can go all the way up to 4, (total villus flattening), which would be diagnostic evidence of fully-developed celiac disease. Obviously, the more villus damage present, the more likely a patient is to have malabsorption issues, but there doesn't seem to be any correlation between the extent of villus damage and the severity of clinical symptoms.
For you to relapse so quickly upon stopping the use of Entocort is an indication that you are just barely maintaining remission, (by means of Entocort), and you are constantly reacting to something in your diet, (or, possibly, your intestines just haven't done enough healing), which keeps your immue system on high alert. It could be bananas, or fish, or other meat, fruit juice, or even rice. For example, I could never tolerate fruit juice, until after my gut had healed for a couple of years, and I found that I had to limit my intake of bananas, also - half a banana I could tolerate, but a whole banana often caused a reaction, (remember, I never took Entocort). As long as you are taking Entocort, you cannot accurately detect all your food-sensitivities, because it will mask most of the minor ones.
If you were in remission long enough for your gut to heal, so that you didn't need any Entocort, then after a while, you might be able to tolerate soy lecithin, (especially in limited amounts), but I would be afraid that with your immune system still on high alert, soy lecithin in your diet is very likely to make the situation worse. As long as you are taking Entocort, you might be able to tolerate it without any clinical symptoms, but it will probably cause some degree of villus damage, (to your small intestine), which will guarantee that your antibody level will continue to remain high, thus capturing the attention of your immune system.
If I were in your shoes, I would try eliminating some of those potential food-sensitivities, and then try weaning off the Entocort. Obviously, if you are content with taking Entocort indefinitely, then that is the easiest solution, at least for a while. Whether or not you will ever build up a tolerance for Entocort, I have no idea. As long as you continue to take it, you're less likely to develop a tolerance than if you stop, (for long enough to allow all of it to exit your system), and restart taking it, over and over again. Repeatedly stopping and restarting, will eventually lead to a loss of efficacy. That's just my non-professional opinion, of course.
Tex
Here are my thoughts:
You have a celiac gene, (DQ8), and your small intestine showed significant damage when you did the fecal fat test. There is no research to back this up, but I have a hunch that people with celiac genes, (who are therefore vulnerable to small intestinal villus damage), may also experience the same type of damage from other food-sensitivities besides gluten. IOW, I suspect that casein, soy, and other types of gluten, (such as the zein in corn, and possibly even the orzenin in rice), may cause villus atrophy for those who happen to be sensitive to them, (by virtue of the celiac gene). DogtorJ, (Dr. John Symes, a vet in GB), has made such claims, (not about the genetics involved, but about villus damage from other sources of gluten), but if he has any research data to back them up, I'm not aware of the sources.
Research suggests that for those of us with non-celiac gluten-sensitive genes, villus damage does not normally exceed a Marsh rating of 1, (only lymphocytic infiltration), whereas for those with a celiac gene, the Marsh rating can go all the way up to 4, (total villus flattening), which would be diagnostic evidence of fully-developed celiac disease. Obviously, the more villus damage present, the more likely a patient is to have malabsorption issues, but there doesn't seem to be any correlation between the extent of villus damage and the severity of clinical symptoms.
For you to relapse so quickly upon stopping the use of Entocort is an indication that you are just barely maintaining remission, (by means of Entocort), and you are constantly reacting to something in your diet, (or, possibly, your intestines just haven't done enough healing), which keeps your immue system on high alert. It could be bananas, or fish, or other meat, fruit juice, or even rice. For example, I could never tolerate fruit juice, until after my gut had healed for a couple of years, and I found that I had to limit my intake of bananas, also - half a banana I could tolerate, but a whole banana often caused a reaction, (remember, I never took Entocort). As long as you are taking Entocort, you cannot accurately detect all your food-sensitivities, because it will mask most of the minor ones.
If you were in remission long enough for your gut to heal, so that you didn't need any Entocort, then after a while, you might be able to tolerate soy lecithin, (especially in limited amounts), but I would be afraid that with your immune system still on high alert, soy lecithin in your diet is very likely to make the situation worse. As long as you are taking Entocort, you might be able to tolerate it without any clinical symptoms, but it will probably cause some degree of villus damage, (to your small intestine), which will guarantee that your antibody level will continue to remain high, thus capturing the attention of your immune system.
If I were in your shoes, I would try eliminating some of those potential food-sensitivities, and then try weaning off the Entocort. Obviously, if you are content with taking Entocort indefinitely, then that is the easiest solution, at least for a while. Whether or not you will ever build up a tolerance for Entocort, I have no idea. As long as you continue to take it, you're less likely to develop a tolerance than if you stop, (for long enough to allow all of it to exit your system), and restart taking it, over and over again. Repeatedly stopping and restarting, will eventually lead to a loss of efficacy. That's just my non-professional opinion, of course.
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.
Tex, thanks for sharing your vision and thoughts. I really do appreciate it. Especially the theory on reacting to "gluten" in other grains. I know I have a problem with corn, so maybe also with rice? Your reaction does inspire me to maybe take another closer look to my diet and maybe try for a couple of weeks, rule all the grains, including rice (the only grain I still eat at the moment). Go 100% paleo.
"As the sense of identity shifts from the imaginary person to your real being as presence awareness, the life of suffering dissolves like mist before the rising sun"
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Tumbleweed
- Posts: 6
- Joined: Fri Dec 16, 2011 6:58 pm
Have you thought about carrageenan? It's an additive to foods (like milks, yogurts, ice cream) that makes it thicker. One of the books I read about gluten intolerance mentioned it. I am thinking of cutting it out myself as soy milk makes my stomach hurt but tofu doesn't. I would check and if your rice milk has it in there then try a different brand. Good luck!
Tumbleweed wrote:Have you thought about carrageenan? It's an additive to foods (like milks, yogurts, ice cream) that makes it thicker. One of the books I read about gluten intolerance mentioned it. I am thinking of cutting it out myself as soy milk makes my stomach hurt but tofu doesn't. I would check and if your rice milk has it in there then try a different brand. Good luck!
I am aware of carrageenan, and any other thickeners, I don't tolerate them very well. In the Netherlands this is not a problem, Rice Dream rice milk is free of any thickener. Although in Jordan that is a problem, this is a country where you are happy you are able to find rice milk, and not question on "which brand is the best one", sigh. I only use rice milk for my cappucino, and really this ricemilk contains (here we go): guar com, xanthan gum, carob bean gum and carrageenan. One thickener is not enough, no FOUR are needed in this rice milk, its from the brand Pacific. The only brand I have seen here so far (in three different supermarkets)
"As the sense of identity shifts from the imaginary person to your real being as presence awareness, the life of suffering dissolves like mist before the rising sun"
Good luck Harma- I'm interested in how things go for you. I'm struggling with similar issues tapering off prednisone. I'm at 5 mg per day and am supposed to reduce the dose each week by a miligram until I'm off of it. I already have D again but don't plan on calling my GI because he'd just tell me to up it again and I simply can't. I have D 3x in the morning and for now I can live with that. It may become worse but I have my fingers crossed. I've eliminated gluten, dairy, soy, eggs, and legumes from my diet and am hoping that will help. It's too early to tell right now but my daily menu of mainly rice, potatoes, and meat is becoming difficult. I'm concerned about developing sensivities to these foods too then I really won't know what to eat.
I know the feeling of wanting just a little bit of chocolate once in a while and wondering if it would really hurt anything or not. So far, I've been able to reisist the urge because I am nowhere close to being in remission and it's not worth it. I haven't had any additional testing done yet either but am always wondering if I'm causing more problems unintentionally by eating those foods that I'm not sure of.
I know the feeling of wanting just a little bit of chocolate once in a while and wondering if it would really hurt anything or not. So far, I've been able to reisist the urge because I am nowhere close to being in remission and it's not worth it. I haven't had any additional testing done yet either but am always wondering if I'm causing more problems unintentionally by eating those foods that I'm not sure of.
Deb,
My view on food-sensitivities is that if we are sensitive to a food, then if we continue to eat it, we will slowly become more sensitive to it, (because our antibody level will continue to climb, over time, until it exceeds our minimum threshold to trigger a reaction). That is substantiated by research data. However, I have a theory that if we're not sensitive to a food, then we won't produce any antibodies to it, and it won't matter how often, or how much of it, we eat.
I believe that we're sensitive to some foods because of molecular mimicry, however, (IOW, they contain peptides that are similar to certain gluten peptides), and if our digestive system becomes sufficiently inflamed, then our immune system may begin to mistakenly recognize them as allergens, also. The possibility exists, though, that after our intestines heal, our immune system may no longer make that mistake, and we may be able to introduce at least some of those foods back into our diet, again. That's just my theory, and none of that has ever been documented by research, as far as I'm aware.
Tex
My view on food-sensitivities is that if we are sensitive to a food, then if we continue to eat it, we will slowly become more sensitive to it, (because our antibody level will continue to climb, over time, until it exceeds our minimum threshold to trigger a reaction). That is substantiated by research data. However, I have a theory that if we're not sensitive to a food, then we won't produce any antibodies to it, and it won't matter how often, or how much of it, we eat.
I believe that we're sensitive to some foods because of molecular mimicry, however, (IOW, they contain peptides that are similar to certain gluten peptides), and if our digestive system becomes sufficiently inflamed, then our immune system may begin to mistakenly recognize them as allergens, also. The possibility exists, though, that after our intestines heal, our immune system may no longer make that mistake, and we may be able to introduce at least some of those foods back into our diet, again. That's just my theory, and none of that has ever been documented by research, as far as I'm aware.
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 Harma,
Well, as a newbie I have virtually nothing insightful to add other than that one thing I'm learning with this disease is that sometimes you have to randomly try a path and if that does not work try another path.
I wish I had something more profound to say. Your Petra adventures continue to inspire the newbies. Brandy
Well, as a newbie I have virtually nothing insightful to add other than that one thing I'm learning with this disease is that sometimes you have to randomly try a path and if that does not work try another path.
I wish I had something more profound to say. Your Petra adventures continue to inspire the newbies. Brandy