I have just been diagnoised with Collagenous Colitis
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I have just been diagnoised with Collagenous Colitis
I was diagnosed a month ago and I am miserable about every 3 days. I am taking Naltrexone ,pepto and a good probiotic. When will my stomach calm down? Any tricks to feeling good again?
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Joefnh
- Rockhopper Penguin
- Posts: 2478
- Joined: Wed Apr 21, 2010 8:25 pm
- Location: Southern New Hampshire
Hello misslilly and welcome to the group. I'm sorry about the diagnosis but at least now you know what your dealing with.
Overall you can get things settled down it will just take some time to determine what foods may be bothering you. Most of us have several food intolerances which cause the Symptoms to flare up. The most common foods with gluten, soy and dairy. Gluten comes from wheat and is found in a high percentage of foods.
The first thing to do is figure out what your reacting to. You can try an elimation diet where you eliminate 100% of a food type like gluten and see if you improve. The other more direct way is through intolerance testing offerred by Enterolab or MRT testing which will give you a report of the various food types you are showing sensitivities to.
Many are able to control their symptoms with dietary changes long term, and there are medications that can offer relief as well, but they can only mask the true issue of your body reacting to offending food types. As you are still struggling you may very well benefit by a course of a medication called Entocort which is a steroid that mostly stays in the GI tract and allows you time to adjust your diet while calming things down. If you are considering something like the enterolab testing it would be best to have that done before taking a steroid medication as that will alter the results.
Best of wishes misslilly, I hope you can find some relief soon.
Joe
Overall you can get things settled down it will just take some time to determine what foods may be bothering you. Most of us have several food intolerances which cause the Symptoms to flare up. The most common foods with gluten, soy and dairy. Gluten comes from wheat and is found in a high percentage of foods.
The first thing to do is figure out what your reacting to. You can try an elimation diet where you eliminate 100% of a food type like gluten and see if you improve. The other more direct way is through intolerance testing offerred by Enterolab or MRT testing which will give you a report of the various food types you are showing sensitivities to.
Many are able to control their symptoms with dietary changes long term, and there are medications that can offer relief as well, but they can only mask the true issue of your body reacting to offending food types. As you are still struggling you may very well benefit by a course of a medication called Entocort which is a steroid that mostly stays in the GI tract and allows you time to adjust your diet while calming things down. If you are considering something like the enterolab testing it would be best to have that done before taking a steroid medication as that will alter the results.
Best of wishes misslilly, I hope you can find some relief soon.
Joe
Joe
Welcome, MissLilly - Joe has given you an excellenet starting point for info, so I don't have a lot to add other than my good wishes, and the assurance that you can get your health back under your control and get your life back. Each of us has a slightly different path, and different ups and downs - but please let us know what you need, and we'll do our best to help.
Sara
Sara
Hi Lilly,
Welcome to the board. Your digestive system is reacting to food-sensitivities. When collagenous colitis is triggered, the genes that make us susceptible to it, also become sensitive to certain proteins in foods. We can eliminate our symptoms by avoiding those foods, 100%.
Again, welcome aboard, and please feel free to ask anything.
Tex
Welcome to the board. Your digestive system is reacting to food-sensitivities. When collagenous colitis is triggered, the genes that make us susceptible to it, also become sensitive to certain proteins in foods. We can eliminate our symptoms by avoiding those foods, 100%.
Again, welcome aboard, and please feel free to ask anything.
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.
Miss Lilly,
I'm using a probiotic from Enzymedica at the moment, which is GF/SF/DF/etc.F (and I think I like it). I have used a lot of MegaFood products in the past, and really liked them, but the probiotic I had from them had some ingredient that didn't work for me (probably soy). I know they have more than one formulation, and it sounds as though you have your label-reading skills pretty well honed by now
The Schiff isn't 'guaranteed dairy-free' (as I interpret it, anyway), so that could be a factor (it says no lactose - but it could still have another component of dairy, in just enough of a trace that it's troubling you).
Also, when your symptoms are most active, I think the probiotic has trouble staying around long enough to work. It's just my theory, based on what seems to be working for me. So if you stop it for a few days, or a few weeks, and feel better, you can take your time researching a suitable replacement.
Giving up gluten is definitely a project. I had dabbled with it before, too - and in a strange way, it's easier to go hard-core GF than to dabble - at least the way my personality operates. (For some reason, I am the queen of "hard core" restrictions, in this arena and no other.)
Hope you turn the corner soon. If you are tolerating the Pepto, you have a good chance of getting some help slamming the brakes on the worst of the symptoms.
I'm using a probiotic from Enzymedica at the moment, which is GF/SF/DF/etc.F (and I think I like it). I have used a lot of MegaFood products in the past, and really liked them, but the probiotic I had from them had some ingredient that didn't work for me (probably soy). I know they have more than one formulation, and it sounds as though you have your label-reading skills pretty well honed by now
The Schiff isn't 'guaranteed dairy-free' (as I interpret it, anyway), so that could be a factor (it says no lactose - but it could still have another component of dairy, in just enough of a trace that it's troubling you).Also, when your symptoms are most active, I think the probiotic has trouble staying around long enough to work. It's just my theory, based on what seems to be working for me. So if you stop it for a few days, or a few weeks, and feel better, you can take your time researching a suitable replacement.
Giving up gluten is definitely a project. I had dabbled with it before, too - and in a strange way, it's easier to go hard-core GF than to dabble - at least the way my personality operates. (For some reason, I am the queen of "hard core" restrictions, in this arena and no other.)
Hope you turn the corner soon. If you are tolerating the Pepto, you have a good chance of getting some help slamming the brakes on the worst of the symptoms.
MissLilly,
I can't advise you about the naltrexone, but I believe I rushed myself off the PB, and would have benefited by taking it a little longer. I don't believe there's any evidence for this, but do believe you're wise to taper off it gently, rather than drop it.
Congratulations on seeing such a positive result from the GF diet - that's great news, and must be encouraging you that you're on the right track,
Sara
I can't advise you about the naltrexone, but I believe I rushed myself off the PB, and would have benefited by taking it a little longer. I don't believe there's any evidence for this, but do believe you're wise to taper off it gently, rather than drop it.
Congratulations on seeing such a positive result from the GF diet - that's great news, and must be encouraging you that you're on the right track,
Sara