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[PattyD]

Hi my name is Patty. I'm 58 years young and live in NV. I was diagnosed with collagenous colitis a couple of years ago after 4 years of diarrhea. I've had one or 2 breaks from WD on my journey with the first one my first time trying budesonide. I relapsed as soon as the taper was done. I trialed and errored for awhile before requesting another round of the steroid and that time I stayed "normal" for a couple of months after I stopped the med. Then I had to have oral surgery which required antibiotics and all went to shi*. That was 2 months ago and I am still struggling but things are improving since I started my chicken/cod/a little red meat/white rice/green beans/sweet tater/banana diet a few days ago. The pain is pretty much gone but no formed stools yet. I'm traveling to Ireland for the first time ever on Sept 5th so the timing of this flare really sucks! I have an appt with my GI guy on the 1st to see if he thinks I should test for BAM. My diarrhea episodes are the worst early in the morning. I tried cholestramine very early on and it didn't seem to work but I also don't know if I gave it a fair shake in the beginning because I was so very desperate for answers back then. I just ordered Tex's book so I can learn more about this condition; or is it a disease? I am very stubborn and determined but alas, I think I have surrendered to the idea that this is incurable. Thanks so much for having this site <3

[tex]

Without the proper diet changes, published research shows that over 80% of patients who respond to budesonide typically relapse. And additional published research shows that each time budesonide is stopped and restarted, it becomes less effective, until eventually it may provide no benefit. Budesonide taken while following a careful diet usually works for most of us, and is good insurance for trips abroad, but of course, there are no guarantees.

I've written an article that addresses treating difficult cases of MC, and it includes a discussion about BAM. It will probably appear in a future newsletter published by the Microscopic Colitis Foundation, but the article hasn't even been edited yet, so it will surely be months before it's published. Please be aware that the dose experimentation usually required to determine the proper dose of bile acid sequestrant for treating BAM usually takes weeks or months. With that in mind, here's a copy of the part that discusses BAM:

If everything else checks out, consider BAM.
If nothing suspicious can be tracked down, after carefully considering everything that goes into our mouth, or on our skin, and we don't currently have any major stress issues, it may be time to consider another possibility, namely, bile acid malabsorption (BAM). Published research shows that in a trial involving 27 collagenous colitis patients who were refractive to conventional treatment, 78% of them achieved prompt remission after they were treated with a bile acid sequestrant (Ung, Gillberg, Kilander, and Abrahamsson, 2000).1

And now, there's a simple blood test to detect BAM.
Until now, doctors have had no medical diagnostic test capable of detecting diarrhea due to bile acid malabsorption. Now, however, researchers at the University of Copenhagen, in Denmark, have developed a blood test that will detect BAM (Lewinska, et al., 2023).2 They refer to the issue as bile acid diarrhea (BAD), but it's the same problem that we refer to as BAM.

Why not treat BAM initially?
The reason we don't recommend attempting to treat BAM initially (for MC patients), as some gastroenterologists attempt to do, is because unless gluten has been avoided for six or eight weeks, in order to allow the antigliadin antibody level to decline to levels below the threshold at which a reaction is triggered, treating BAM prematurely, in most cases, will not be successful, because the immune system will be dominated by the antigliadin antibodies, so that it continues to react against them. But after 6 to 8 weeks of faithfully following a gluten-free diet, gluten should no longer be dominating the immune system, so if no improvements in diarrhea symptoms are noted, then there is a very good chance that treating BAM will bring remission (assuming that BAM is the issue preventing remission).

Treating BAM is not always easy.
Although BAM sometimes responds to the labeled dose recommended on the bile acid sequestrant that our doctor prescribes, in many cases (probably most cases) the ideal dose will have to be determined experimentally, by trial and error. Too much will cause cramps and constipation, and too little, will not resolve the diarrhea. It takes approximately two weeks for the effects of an adjusted dose of bile acid sequestrant to completely stabilize, but estimates of how well the dose is going to work can usually be seen sooner than that. An ineffective, or partially effective dose is usually too small, and by continuing to experiment with the dose, we can eventually find a dose that controls our diarrhea to our satisfaction.

For the worst cases of BAM, a specific brand may be required.
Many of the members of our discussion and support forum who need to use a bile acid sequestrant, seem to have the best results using a cholestyramine product that was originally sold under the brand name Sandoz, and is now branded Epic. Apparently, Epic was manufacturing these products for Sandoz, prior to the name change. For anyone who might need to seek out these particular products, they are:

42806-266-95 Orange 60 USP packets

42806-267-97 Orange Can

42806-270-95 Light Orange 60 USP packets

42806-271–97 Light Orange Can

Typically, those who are unable to successfully find a dose of cholestyramine that will resolve BAM, either haven't waited long enough for their antigliadin antibody level to decline sufficiently before attempting to treat BAM, or the dose of bile acid sequestrant they are using is insufficient. As many as eight packets, or the equivalent dose, may be required in severe cases.

Ignore label recommendations to take bile acid sequestrants with meals.
Use of a bile acid sequestrant carries a relatively low risk of any adverse outcomes.. When bile acid sequestrants are prescribed in order to lower cholesterol levels, they are recommended to be taken with meals. However, when using bile acid sequestrants to treat BAM, that rule should be ignored.

Nutrient malabsorption is already a problem with either active MC, or diarrhea caused by BAM, and bile acid sequestrants will only further reduce the absorption of nutrients. So we definitely don't want to take bile acid sequestrants with meals (unless we're also trying to treat high cholesterol levels). Since bile acid sequestrants also tend to significantly reduce the effectiveness of certain medications, and they tend to prevent the normal absorption of folic acid, and fat soluble vitamins, such as A, D, E, and K, we need to be careful about the timing of when we take a bile acid sequestrant.

In order to minimize the risk of losing nutrients or deactivating medications, bile acid sequestrants should either be taken at least 4 to 6 hours before eating or taking any medications or supplements; or at least an hour or two after eating, or taking medications or supplements. If it becomes necessary to bend those rules a little, that shouldn't cause any major problems, we just won't get optimal results.

Here are the references for the part of the article used in this quote:

1. Ung, K.-A., Gillberg, R., Kilander, A., and Abrahamsson, H. (2000). Role of bile acids and bile acid binding agents in patients with collagenous colitis. Gut, 46(2), pp 170–175. Retrieved from https://gut.bmj.com/content/46/2/170.full

2. Lewinska, M., Kårhus, M. L., Ellegaard, A-M. G., Romero-Gómez, M., Macias, R. I. R., Anderson, J. B., . . . Knop, F. K. (2023). Serum lipidome unravels a diagnostic potential in bile acid diarrhoea. Gut, Published Online First. Retrieved from https://gut.bmj.com/content/early/2023/ ... 022-329213

I hope this helps,

Tex

[PattyD]

Without the proper diet changes, published research shows that over 80% of patients who respond to budesonide typically relapse.
I've written an article that addresses treating difficult cases of MC, and it includes a discussion about BAM. It will probably appear in a future newsletter published by the Microscopic Colitis Foundation, but the article hasn't even been edited yet, so it will surely be months before it's published. Please be aware that the dose experimentation usually required to determine the proper dose of bile acid sequestrant for treating BAM usually takes weeks or months. With that in mind, here's a copy of the part that discusses BAM:

If everything else checks out, consider BAM.
If nothing suspicious can be tracked down, after carefully considering everything that goes into our mouth, or on our skin, and we don't currently have any major stress issues, it may be time to consider another possibility, namely, bile acid malabsorption (BAM). Published research shows that in a trial involving 27 collagenous colitis patients who were refractive to conventional treatment, 78% of them achieved prompt remission after they were treated with a bile acid sequestrant (Ung, Gillberg, Kilander, and Abrahamsson, 2000).1

And now, there's a simple blood test to detect BAM.
Until now, doctors have had no medical diagnostic test capable of detecting diarrhea due to bile acid malabsorption. Now, however, researchers at the University of Copenhagen, in Denmark, have developed a blood test that will detect BAM (Lewinska, et al., 2023).2 They refer to the issue as bile acid diarrhea (BAD), but it's the same problem that we refer to as BAM.

Why not treat BAM initially?
The reason we don't recommend attempting to treat BAM initially (for MC patients), as some gastroenterologists attempt to do, is because unless gluten has been avoided for six or eight weeks, in order to allow the antigliadin antibody level to decline to levels below the threshold at which a reaction is triggered, treating BAM prematurely, in most cases, will not be successful, because the immune system will be dominated by the antigliadin antibodies, so that it continues to react against them. But after 6 to 8 weeks of faithfully following a gluten-free diet, gluten should no longer be dominating the immune system, so if no improvements in diarrhea symptoms are noted, then there is a very good chance that treating BAM will bring remission (assuming that BAM is the issue preventing remission).

Treating BAM is not always easy.
Although BAM sometimes responds to the labeled dose recommended on the bile acid sequestrant that our doctor prescribes, in many cases (probably most cases) the ideal dose will have to be determined experimentally, by trial and error. Too much will cause cramps and constipation, and too little, will not resolve the diarrhea. It takes approximately two weeks for the effects of an adjusted dose of bile acid sequestrant to completely stabilize, but estimates of how well the dose is going to work can usually be seen sooner than that. An ineffective, or partially effective dose is usually too small, and by continuing to experiment with the dose, we can eventually find a dose that controls our diarrhea to our satisfaction.

For the worst cases of BAM, a specific brand may be required.
Many of the members of our discussion and support forum who need to use a bile acid sequestrant, seem to have the best results using a cholestyramine product that was originally sold under the brand name Sandoz, and is now branded Epic. Apparently, Epic was manufacturing these products for Sandoz, prior to the name change. For anyone who might need to seek out these particular products, they are:

42806-266-95 Orange 60 USP packets

42806-267-97 Orange Can

42806-270-95 Light Orange 60 USP packets

42806-271–97 Light Orange Can

Typically, those who are unable to successfully find a dose of cholestyramine that will resolve BAM, either haven't waited long enough for their antigliadin antibody level to decline sufficiently before attempting to treat BAM, or the dose of bile acid sequestrant they are using is insufficient. As many as eight packets, or the equivalent dose, may be required in severe cases.

Ignore label recommendations to take bile acid sequestrants with meals.
Use of a bile acid sequestrant carries a relatively low risk of any adverse outcomes.. When bile acid sequestrants are prescribed in order to lower cholesterol levels, they are recommended to be taken with meals. However, when using bile acid sequestrants to treat BAM, that rule should be ignored.

Nutrient malabsorption is already a problem with either active MC, or diarrhea caused by BAM, and bile acid sequestrants will only further reduce the absorption of nutrients. So we definitely don't want to take bile acid sequestrants with meals (unless we're also trying to treat high cholesterol levels). Since bile acid sequestrants also tend to significantly reduce the effectiveness of certain medications, and they tend to prevent the normal absorption of folic acid, and fat soluble vitamins, such as A, D, E, and K, we need to be careful about the timing of when we take a bile acid sequestrant.

In order to minimize the risk of losing nutrients or deactivating medications, bile acid sequestrants should either be taken at least 4 to 6 hours before eating or taking any medications or supplements; or at least an hour or two after eating, or taking medications or supplements. If it becomes necessary to bend those rules a little, that shouldn't cause any major problems, we just won't get optimal results.

Here are the references for the part of the article used in this quote:

1. Ung, K.-A., Gillberg, R., Kilander, A., and Abrahamsson, H. (2000). Role of bile acids and bile acid binding agents in patients with collagenous colitis. Gut, 46(2), pp 170–175. Retrieved from https://gut.bmj.com/content/46/2/170.full

2. Lewinska, M., Kårhus, M. L., Ellegaard, A-M. G., Romero-Gómez, M., Macias, R. I. R., Anderson, J. B., . . . Knop, F. K. (2023). Serum lipidome unravels a diagnostic potential in bile acid diarrhoea. Gut, Published Online First. Retrieved from https://gut.bmj.com/content/early/2023/ ... 022-329213

I hope this helps,

Tex

The only diet advice I received from my GI was a Mediterranean diet. I didn't expect much more though. I jumped down the nutrition rabbit hole decades ago and know not many docs know much of food/nutrition and its effects on the body.
Thank you so much for sharing the info on BAM. <3