Hi Everyone, how are you doing all? I hope well. It has been quite a long time I have posted here. A lot has happened in the last years, I am already back in the Netherlands now for almost 4 years now, after three years in Jordan. I would not say my adventure failed, it only went different than I expected. And now back in Holland building up a life here.
I have a question. At the moment I am in the middle of a severe flare up. The worst actually since my disease started in 2009. The medication Entecort has no effect anymore and also my other treatment tool my chicken (or fish) and rice diet is not working. So I am looking for other alternatives. I know what the answer will be if I am going to see my gastro-enterologist: a higher dose of Entecort what is not a suitable option for me due to side effects or other types of medication which I am not a big fan of. Another option I am exploring now with me general practitioner is elemental diet if that is the right word in English (normal food is replaced by medical liquid nutrition). It is a proven effective treatment for Crohn's disease but as far as I know only used in treatment for children (why I don't know). So connecting one with the other, since I have had good experiences in the past with chicken and rice diet, I thought maybe this elemental diet might also work for CC. I am in the exploring phase at the moment (talking to the doctor, talking to the pharmacist, browsing internet etc.) and for sure plan to do it, and if/when I start for sure I will share my experiences here. But also any input on knowledge or other experiences are very welcome.
checking in after a long time and a question
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
checking in after a long time and a question
"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"
Hi Harma,
I'm sorry that you're in a flare, but it's good to see a post from you again. Experience (based on EnteroLab stool testing) shows that many of us are sensitive to chicken and fish, and some of us are sensitive to rice. Virtually no one is sensitive to turkey or lamb, so I would try one or both of those. Other safe protein options are rabbit, goose, duck, quail, pheasant, partridge, grouse, venison, antelope, etc.
Chicken is often a high histamine food, and it can cause intestinal inflammation by increasing mast cell activity and provoking additional mast cell degranulation which can perpetuate intestinal inflammation independently of the usual T cell-based inflammation. Fish is also a high-histamine food. So this makes me very suspicious that you may have a mast cell problem that is causing your inflammation.
If you notice any symptoms such as runny nose, watery eyes, facial flush, itching, throat congestion, increased heart rate, or rash soon after beginning to eat, you may have mast cell activation disorder (MCAD). Many of us do, especially during a flare. The treatment is to limit intake of high-histamine foods and take an antihistamine. If taking an antihistamine helps, then you probably have MCAD. Here are links to a few short articles that may be helpful:
What are mast cells?
How are mast cells associated with microscopic colitis?
How do I know if mast cells are causing problems for me?
How are mast cell issues treated?
Thinking back, we have 1, maybe 2 members who I can recall mentioning that they have tried an elemental diet. For 1, it did not work, and I'm not sure about the other because I don't recall a followup post. The first one even allowed her doctors to perform an ileostomy after the elemental diet did not work. And the ileostomy did not help either. But that's not surprising because if an elemental diet does not work, then the inflammation is being generated in the small intestine, so there is no reason why an ileostomy would help. Unfortunately her doctors couldn't understand that.
The problem with an elemental diet is that most people who have MC have too many sensitivities to tolerate an elemental diet mixture. There are many, many, ingredients in those medical foods, and we only have to react to 1 in order for the treatment to fail.
Yes, if you decide to try it, please post about your results, because every bit of information helps when others are making decisions in the future.
The other option is to order stool tests from EnteroLab to pinpoint your food sensitivities. But I am guessing that you may be sensitive to every food that they test, so those tests probably would not tell you anything that you do not already know.
I believe that I would try changing my diet to base it on one or more of the proteins I listed above, and if I didn't improve after a few days to a week, I would stop the rice and substitute some overcooked carrots, squash, cauliflower, etc., for a few days to see if that helps.
Good luck in stopping this flare, and please keep us updated. It's the most difficult cases that teach us the most about this disease.
Tex
I'm sorry that you're in a flare, but it's good to see a post from you again. Experience (based on EnteroLab stool testing) shows that many of us are sensitive to chicken and fish, and some of us are sensitive to rice. Virtually no one is sensitive to turkey or lamb, so I would try one or both of those. Other safe protein options are rabbit, goose, duck, quail, pheasant, partridge, grouse, venison, antelope, etc.
Chicken is often a high histamine food, and it can cause intestinal inflammation by increasing mast cell activity and provoking additional mast cell degranulation which can perpetuate intestinal inflammation independently of the usual T cell-based inflammation. Fish is also a high-histamine food. So this makes me very suspicious that you may have a mast cell problem that is causing your inflammation.
If you notice any symptoms such as runny nose, watery eyes, facial flush, itching, throat congestion, increased heart rate, or rash soon after beginning to eat, you may have mast cell activation disorder (MCAD). Many of us do, especially during a flare. The treatment is to limit intake of high-histamine foods and take an antihistamine. If taking an antihistamine helps, then you probably have MCAD. Here are links to a few short articles that may be helpful:
What are mast cells?
How are mast cells associated with microscopic colitis?
How do I know if mast cells are causing problems for me?
How are mast cell issues treated?
Thinking back, we have 1, maybe 2 members who I can recall mentioning that they have tried an elemental diet. For 1, it did not work, and I'm not sure about the other because I don't recall a followup post. The first one even allowed her doctors to perform an ileostomy after the elemental diet did not work. And the ileostomy did not help either. But that's not surprising because if an elemental diet does not work, then the inflammation is being generated in the small intestine, so there is no reason why an ileostomy would help. Unfortunately her doctors couldn't understand that.
The problem with an elemental diet is that most people who have MC have too many sensitivities to tolerate an elemental diet mixture. There are many, many, ingredients in those medical foods, and we only have to react to 1 in order for the treatment to fail.
Yes, if you decide to try it, please post about your results, because every bit of information helps when others are making decisions in the future.
The other option is to order stool tests from EnteroLab to pinpoint your food sensitivities. But I am guessing that you may be sensitive to every food that they test, so those tests probably would not tell you anything that you do not already know.
I believe that I would try changing my diet to base it on one or more of the proteins I listed above, and if I didn't improve after a few days to a week, I would stop the rice and substitute some overcooked carrots, squash, cauliflower, etc., for a few days to see if that helps.
Good luck in stopping this flare, and please keep us updated. It's the most difficult cases that teach us the most about this disease.
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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Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
welcome back Harma
but hugs and sympathies that you are having bad flare and had to post....
And my personal learnings and observations of others that have shared here, various treatment approaches, (herbal, supplements, acupuncture etc) what works for Crohns does not work for MC
another key observation we have seen over the past few years is that medications have a limited scope of success during a big flare, if you are deficient in Vit D3 and magnesium, and given your life journeys to Jordon and back to the Netherlands etc, there is a high probability that you are deficient in these.
since you were last active, quite a few members have had great success using cholestryamine for MC.
here are some links to discussions
http://www.perskyfarms.com/phpBB2/viewt ... light=bile
http://www.perskyfarms.com/phpBB2/viewt ... t=questran
I also agree with Tex, I would suggest swapping across to grass fed type meat sources.
things like Chicken are fed lots of grain (wheat and soy based) do you have affordable grass fed meat options readily available?
hope this helps
hugs
but hugs and sympathies that you are having bad flare and had to post....
Tex has summed up my main concern with elemental diet.The problem with an elemental diet is that most people who have MC have too many sensitivities to tolerate an elemental diet mixture. There are many, many, ingredients in those medical foods, and we only have to react to 1 in order for the treatment to fail.
And my personal learnings and observations of others that have shared here, various treatment approaches, (herbal, supplements, acupuncture etc) what works for Crohns does not work for MC
another key observation we have seen over the past few years is that medications have a limited scope of success during a big flare, if you are deficient in Vit D3 and magnesium, and given your life journeys to Jordon and back to the Netherlands etc, there is a high probability that you are deficient in these.
since you were last active, quite a few members have had great success using cholestryamine for MC.
here are some links to discussions
http://www.perskyfarms.com/phpBB2/viewt ... light=bile
http://www.perskyfarms.com/phpBB2/viewt ... t=questran
I also agree with Tex, I would suggest swapping across to grass fed type meat sources.
things like Chicken are fed lots of grain (wheat and soy based) do you have affordable grass fed meat options readily available?
hope this helps
hugs
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
Sorry you are having a bad flare, but good to see an update from you.