Hi All,
I have a couple general questions.
Results of my Enterolab tests showed a score of 6 on Soy. So I mistakenly thought I could consume it without a problem. Not so. It causes the same watery D I fought so hard to get rid of. Any thoughts on why this would be true?
Does anyone know if there is a commercial bread on the market which does NOT contain Soy, Dairy, Eggs or Gluten?
I can't find one, but maybe I'm not looking in the right place. I tried making my own with less than stellar results.
I took cholestyramine after I was doing better and it really helped clear up the last bit of loose stools I was having. How long has anyone remained on cholestyramine? Am I just waiting for my gut to heal enough to start resorbing the bile acids? Is it a matter of trial and error - of just stopping the med and see what happens? Do I cause more damage doing that?
Thanks ever so much!
Coll
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With a score of 6, you should indeed be home free. There must be an issue with the test result. Might you have selective IgA deficiency? IOW, were the other results all relatively low, also? 1 in 300 gluten-sensitive people have selective IgA deficiency, and ELISA tests (such as the EnteroLab stool tests) won't work when a patient has selective IgA deficiency. All the test results will be low, so that some of them may be false negatives. Another possibility is that you may be sensitive to some other protein in soy, but not the main one (soya).
That's the trouble with commercially-produced GF breads, they all contain one or more ingredients that we can't tolerate. I believe there's one that's free of those ingredients, but it contains tapioca flour, which many of us can't handle when we're reacting. But I can't recall the brand, right now.
I doubt that there's a one-size-fits-all time at which we can discontinue taking cholestyramine, as that will depend on individual circumstances. But since there's no inflammation involved with BAM, stopping cholestyramine prematurely shouldn't cause any intestinal damage. If the diarrhea restarts, you should be able to stop it by simply resuming the dose that you had settled on previously. Tapering the dose over a few days might make the transition easier when you stop taking it.
At least, those are my thoughts.
Tex
That's the trouble with commercially-produced GF breads, they all contain one or more ingredients that we can't tolerate. I believe there's one that's free of those ingredients, but it contains tapioca flour, which many of us can't handle when we're reacting. But I can't recall the brand, right now.
I doubt that there's a one-size-fits-all time at which we can discontinue taking cholestyramine, as that will depend on individual circumstances. But since there's no inflammation involved with BAM, stopping cholestyramine prematurely shouldn't cause any intestinal damage. If the diarrhea restarts, you should be able to stop it by simply resuming the dose that you had settled on previously. Tapering the dose over a few days might make the transition easier when you stop taking it.
At least, those are my thoughts.
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 Coll,
Early on I could not tolerate any GF bread. I think there were just too many chemicals and ingredients.
I concentrated on rice, sweet potato and potato when I was healing. It was probably a couple of years before I could tolerate commercial GF bread.
Now I can tolerate GF bread from the grocery.
I was on cholestyramine for awhile. My PCP implied that some of his patients take it indefinitely for D (we were not
talking specifically about MC.)
I found had my gut healed I needed less and less. I was on it about 45 days. At the end I only took about 1/2 teaspoon a day.
I had to stop due to an unrelated side effect.
I suspect as your gut heals you will need less and less to achieve solid stool and at some point probably won't need it since
you are doing diet changes.
Early on I could not tolerate any GF bread. I think there were just too many chemicals and ingredients.
I concentrated on rice, sweet potato and potato when I was healing. It was probably a couple of years before I could tolerate commercial GF bread.
Now I can tolerate GF bread from the grocery.
I was on cholestyramine for awhile. My PCP implied that some of his patients take it indefinitely for D (we were not
talking specifically about MC.)
I found had my gut healed I needed less and less. I was on it about 45 days. At the end I only took about 1/2 teaspoon a day.
I had to stop due to an unrelated side effect.
I suspect as your gut heals you will need less and less to achieve solid stool and at some point probably won't need it since
you are doing diet changes.
Tex and Brandi,
Thank you for your thoughts. Concerning the soy - I am at a loss. I've tried several forms of foods which contain soy. All with the same result. Soy milk, baked crackers with soy, plant based margarine substitute which "may contain soy", even olive oil which was not on the safe list - so I assume it had been mixed w soy. I read labels like a fiend- so no other ingredients were questionable for me.
Prior to the enterolab testing i had strictly avoided soy for probly almost a year. Would that have skewed the result?
I figured the cholestyramine question was entirely subjective. I really don't mind taking it. It's not unpleasant and it works.
One more interesting thing I wanted to share with you - back when I was really suffering thru the hard times I was eating mostly all meat. Any fiber was hard on my gut. So I ate mostly meat 3 meals or more a day. Then I went to my GP for the yearly blood work. My GFR showed I was in stage 4 renal failure. Which the doc didn't even notice til I brought it to his attention. Fast forward 6 months and now I'm eating way less meat. That test was repeated and the kidney values have come up. The other kidney values have come back towards normal also. I never had those issues before.
Add that weirdness to the list of stuff to deal with!
Thanks again for all the brain power!
Colleen
Thank you for your thoughts. Concerning the soy - I am at a loss. I've tried several forms of foods which contain soy. All with the same result. Soy milk, baked crackers with soy, plant based margarine substitute which "may contain soy", even olive oil which was not on the safe list - so I assume it had been mixed w soy. I read labels like a fiend- so no other ingredients were questionable for me.
Prior to the enterolab testing i had strictly avoided soy for probly almost a year. Would that have skewed the result?
I figured the cholestyramine question was entirely subjective. I really don't mind taking it. It's not unpleasant and it works.
One more interesting thing I wanted to share with you - back when I was really suffering thru the hard times I was eating mostly all meat. Any fiber was hard on my gut. So I ate mostly meat 3 meals or more a day. Then I went to my GP for the yearly blood work. My GFR showed I was in stage 4 renal failure. Which the doc didn't even notice til I brought it to his attention. Fast forward 6 months and now I'm eating way less meat. That test was repeated and the kidney values have come up. The other kidney values have come back towards normal also. I never had those issues before.
Add that weirdness to the list of stuff to deal with!
Thanks again for all the brain power!
Colleen
Colleen,
Yes, a high-protein diet will skew your kidney test results toward poor kidney function. I'm not sure if kidney function is actually affected, but it might be, for all I know. There's a good probability that it only skews the test itself, because you can adjust your diet to cut out the high-protein starting about a week before the blood draw, and your kidney function will show a much better result. I doubt that failing kidneys could recover within a week. Most kidney damage is presumably permanent.
Tex
Yes, a high-protein diet will skew your kidney test results toward poor kidney function. I'm not sure if kidney function is actually affected, but it might be, for all I know. There's a good probability that it only skews the test itself, because you can adjust your diet to cut out the high-protein starting about a week before the blood draw, and your kidney function will show a much better result. I doubt that failing kidneys could recover within a week. Most kidney damage is presumably permanent.
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.
Coleen, I noticed that in all the questions about kidney function, your question about soy hasn't been addressed.
Rosie
Yes, indeed! If you were soy free for a year before the test, antibodies would be gone and you would test a false negative (score of 6). But you would still be sensitive to soy, and that explains why you have been reacting. Several years ago I had a flare and did a repeat Enterolab. I wanted to see if I had developed any new sensitivities, and also check if unknowingly getting exposed to one of my known sensitivities. My original soy score was 19, and after avoiding soy for a few years, the repeat test was 5. But I am still very sensitive to soy.Prior to the enterolab testing i had strictly avoided soy for probly almost a year. Would that have skewed the result?
Rosie
Our greatest weakness lies in giving up. The most certain way to succeed is always to try just one more time………Thomas Edison
I thought I had read here in the past about the fact that avoiding a certain food for an extended time would skew the results of a the enterolab test. Which explains my reaction to soy. Really sad since soy is so prevalent in foods.
I appreciate your response Rosie, thank you.
Funny how hindsight is 20/20. Now that I've been thru the Enterolab testing and spent the last 2 years experimenting with different food items, when I discover which foods bother me, I can see why I was so affected at the beginning.
Thanks to all of you,
Colleen
I appreciate your response Rosie, thank you.
Funny how hindsight is 20/20. Now that I've been thru the Enterolab testing and spent the last 2 years experimenting with different food items, when I discover which foods bother me, I can see why I was so affected at the beginning.
Thanks to all of you,
Colleen