As far as I'm aware, the half-life of antibodies don't have a (known) direct association with symptoms. It simply means that in 120 days after exposure, only half the antibodies created from that exposure will still be active. The problem is, the immune system continues to produce antibodies at a slowly declining rate, after a reaction, so it's not a straight-line antibody decay. If it didn't do this, vaccines would not work. The immune system has to continue to produce antibodies in order to detect the pathogens that it has built up immunity for so that it can launch an attack if any antigens are detected.
By the same token, laboratory diagnostic levels (of intraepithelial lymphocytes) don't appear to have any association with clinical symptoms for MC.
To the best of my knowledge, the reason why you never see an explanation of how Pepto works is because no one actually knows how it works. We know that it coats the mucosa with a protective film (to protect it against any pathogens in the luminal flow). We also know that it has weak antibiotic action, but I'm not aware that anyone has ever measured and reported on the amount of that capability.
Yes, you can use magnesium lotion or magnesium oil to get at least a part of your magnesium, depending on how much you use. The vitamin patches should be a good solution because they've been tested and shown to work reliabily at the labeled levels.
Tex
Figuring out food triggers.
Hi Tex and All,
I have read your book and I am absolutely astounded at the amount of information and overwhelmed by the amount of work which obviously went into it. I commend you for such an achievement. I'm reading it for the second time.
I have ordered the vitamin patch and the Mg lotion.
Of course I have more questions.
1. If budesonide never made ANY difference in my symptoms, (I've been on it exactly 8 weeks now) why would I have to taper off it? Should I be on a higher dose? Is that unusual to be on a higher dose?
2. I started on the elimination diet in earnest 4 weeks ago. Meat, rice, (potatoes of any kind kill me) weak tea, olive oil. I was eating Turkey, pork & cornish hens. Now Turkey and pork cause a flare. Sigh. Is that my gut making antibodies against them now? If this goes on I won't be able to eat ANYTHING. Kinda freaking out here.
I had wanted to make the bone broth out of Turkey and pork bones but that is out. Now I am eating cornish hens and am about to try chicken. So far cornish hens have always been ok. I thought as long as I consumed well cooked meats it was ok. Guess not.
I did try the trick of watching your pulse when you put a food in your mouth - it works.
3. Do you or anyone on the board know anyone who tried the pepto - 8 tabs/day for 8 weeks - treatment? I am curious what to expect if I do it. What to expect day to day etc. I have searched the posts and don't see one about pepto.
Everytime I think I'm getting someplace with this - I crash and burn. Literally. The frustrating thing for me is I eat the same thing I did the day before and I crash and burn anyway. I'd cry but I'm so dehydrated I have no tears.
I think allegra has helped the most - which is surprising to me. I'm guessing Mast cell involvement?
Makes your head spin.
Thanks again for any suggestions. You can't imagine my gratitude.
Colleen
I have read your book and I am absolutely astounded at the amount of information and overwhelmed by the amount of work which obviously went into it. I commend you for such an achievement. I'm reading it for the second time.
I have ordered the vitamin patch and the Mg lotion.
Of course I have more questions.
1. If budesonide never made ANY difference in my symptoms, (I've been on it exactly 8 weeks now) why would I have to taper off it? Should I be on a higher dose? Is that unusual to be on a higher dose?
2. I started on the elimination diet in earnest 4 weeks ago. Meat, rice, (potatoes of any kind kill me) weak tea, olive oil. I was eating Turkey, pork & cornish hens. Now Turkey and pork cause a flare. Sigh. Is that my gut making antibodies against them now? If this goes on I won't be able to eat ANYTHING. Kinda freaking out here.
I had wanted to make the bone broth out of Turkey and pork bones but that is out. Now I am eating cornish hens and am about to try chicken. So far cornish hens have always been ok. I thought as long as I consumed well cooked meats it was ok. Guess not.
I did try the trick of watching your pulse when you put a food in your mouth - it works.
3. Do you or anyone on the board know anyone who tried the pepto - 8 tabs/day for 8 weeks - treatment? I am curious what to expect if I do it. What to expect day to day etc. I have searched the posts and don't see one about pepto.
Everytime I think I'm getting someplace with this - I crash and burn. Literally. The frustrating thing for me is I eat the same thing I did the day before and I crash and burn anyway. I'd cry but I'm so dehydrated I have no tears.
I think allegra has helped the most - which is surprising to me. I'm guessing Mast cell involvement?
Makes your head spin.
Thanks again for any suggestions. You can't imagine my gratitude.
Colleen
Hi Colleen,
I believe that you are the first I've ever been aware of who reacted to turkey. That leaves lamb, and other wild type meats such as venison, rabbit, duck, goose, pheasant, quail, etc. as possibilities. Bison are usually off limits, as virtually all of them have DNA from domestic beef cattle these days.
After only eight weeks of budesonide you could probably safely stop taking it cold turkey, but I believe that I would do a fast taper of the dose over about a two-week period, just to be on the safe side. Here's why: All corticosteroids affect adrenal output of cortisol. They have to adjust to the amount supplemented by the corticosteroid. Eventually, they begin to rely on the corticosteroid to supply part of the cortisol that they used to produce, and they get "lazy", so to speak. If you stop the corticosteroid treatment abruptly, and your adrenals don't immediately resume their original production rate of cortisol, it can really ruin your day (bigtime).
We have a member in Belgium whose stupid (for want of a better word) doctor told her to stop taking it abruptly, after she had been taking budesonide for over a year. She had a severe, life-threatening reaction that took several weeks to resolve, and now she has to take a cortisol supplement for the rest of her life. As I recall, she was in her late 20's when this happened. Her life will never be the same.
Normally, since only about 18 % of the budesonide is absorbed into the bloodstream, it usually takes at least six months to a year before the adrenals become unable to automatically resume full production when the budesonide is stopped. But as I mentioned, the consequences can be so severe if the adrenal function is compromised that I would be very cautious about stopping abruptly. It would probably be safe, but just in case you might be an exception to the rule, I would try to err on the safe side. Uceris is an exception to this rule. None of it is absorbed into the bloodstream, so it seems to be safe to stop abruptly.
Be sure any chicken you consume was either quick-frozen, or it's very fresh. Otherwise, chicken is almost as bad as fish as far as histamine production is concerned. Storing chicken or fish at refrigerator temperatures won't work — histamines continue to increase. It has to be frozen at zero degrees or below to keep the histamine level from increasing.
Many members here have successfully used the Pepto treatment. According to the original (published) research trial, it's about 85 % effective (which is better than budesonide and most other meds). And we've generally found that to be true. Be aware that some people's bodies are unable to purge the excess, and the bismuth can build up to cause neurological problems, such as tinnitus, balance issues, etc., so those individuals are unable to keep taking it. It usually brings remission within about two weeks.
Thanks for the kind words. You're very welcome.
Tex
I believe that you are the first I've ever been aware of who reacted to turkey. That leaves lamb, and other wild type meats such as venison, rabbit, duck, goose, pheasant, quail, etc. as possibilities. Bison are usually off limits, as virtually all of them have DNA from domestic beef cattle these days.
After only eight weeks of budesonide you could probably safely stop taking it cold turkey, but I believe that I would do a fast taper of the dose over about a two-week period, just to be on the safe side. Here's why: All corticosteroids affect adrenal output of cortisol. They have to adjust to the amount supplemented by the corticosteroid. Eventually, they begin to rely on the corticosteroid to supply part of the cortisol that they used to produce, and they get "lazy", so to speak. If you stop the corticosteroid treatment abruptly, and your adrenals don't immediately resume their original production rate of cortisol, it can really ruin your day (bigtime).
We have a member in Belgium whose stupid (for want of a better word) doctor told her to stop taking it abruptly, after she had been taking budesonide for over a year. She had a severe, life-threatening reaction that took several weeks to resolve, and now she has to take a cortisol supplement for the rest of her life. As I recall, she was in her late 20's when this happened. Her life will never be the same.
Normally, since only about 18 % of the budesonide is absorbed into the bloodstream, it usually takes at least six months to a year before the adrenals become unable to automatically resume full production when the budesonide is stopped. But as I mentioned, the consequences can be so severe if the adrenal function is compromised that I would be very cautious about stopping abruptly. It would probably be safe, but just in case you might be an exception to the rule, I would try to err on the safe side. Uceris is an exception to this rule. None of it is absorbed into the bloodstream, so it seems to be safe to stop abruptly.
Be sure any chicken you consume was either quick-frozen, or it's very fresh. Otherwise, chicken is almost as bad as fish as far as histamine production is concerned. Storing chicken or fish at refrigerator temperatures won't work — histamines continue to increase. It has to be frozen at zero degrees or below to keep the histamine level from increasing.
Many members here have successfully used the Pepto treatment. According to the original (published) research trial, it's about 85 % effective (which is better than budesonide and most other meds). And we've generally found that to be true. Be aware that some people's bodies are unable to purge the excess, and the bismuth can build up to cause neurological problems, such as tinnitus, balance issues, etc., so those individuals are unable to keep taking it. It usually brings remission within about two weeks.
Thanks for the kind words. You're very welcome.
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.
Colleen,
A number of folks have used pepto. It used to be the preferred treatment before budesonide came along.
Your tongue will turn black and your stool will turn black when you take it.
I like the round lozenges and would usually take them after a meal.
I had no side effects other than black stool and black tongue (temporarily until you swallow).
It works. (I've also used budesonide and cholestyramine at different times.)
We have not had discussions about it recently but since I've been on the forum a number of folks have had
it work for them.
PS, the foundation has good info on it too. https://www.microscopiccolitisfoundation.org/
A few people have got tinnitus. I'd stop at once if you start getting tinnitus from it. I think there are
less side effects from the pepto protocol than from budesonide.
Good luck, keep us posted.
A number of folks have used pepto. It used to be the preferred treatment before budesonide came along.
Your tongue will turn black and your stool will turn black when you take it.
I like the round lozenges and would usually take them after a meal.
I had no side effects other than black stool and black tongue (temporarily until you swallow).
It works. (I've also used budesonide and cholestyramine at different times.)
We have not had discussions about it recently but since I've been on the forum a number of folks have had
it work for them.
PS, the foundation has good info on it too. https://www.microscopiccolitisfoundation.org/
A few people have got tinnitus. I'd stop at once if you start getting tinnitus from it. I think there are
less side effects from the pepto protocol than from budesonide.
Good luck, keep us posted.
Thank you all. When I get off the budesonide, which should be 1 more week, I'm going to give it a go. I will keep you posted on my progress.
Will the D just taper off? Stop? Change to more solid stool? I don't know what to expect.
When I get to remission then I can add safe foods slowly? I'm wishful thinking there....
I would like to think I just got some bum turkey. I'm going to buy one of the turkey brands I have read about on this board and give it another go - at least try the mouth trick for 30 sec to see if my heart rate goes up. I'm not willing to give myself another flare! I bought a chicken from Whole Foods that said it was 'Fast air chilled' or something. It was ok for me. Broth from it jelled beautifully in the crockpot and I swear I can feel it helping when I eat it.
Tex mentioned the chicken needs to be frozen at 0 or below. That's not necessary for after it's cooked is it? Cuz I don't have a commercial freezer at home. I fast chill after cooking and freeze immediately for future use.
I've lost 25# and my family is really freaking out. I only weighed 123 to start with. I'm eating every couple hours and adding coconut oil to my rice to increase the calories. The last couple days I've felt better than I have in some weeks. Fingers crossed. Thank you all from the bottom of my heart!
Colleen
Will the D just taper off? Stop? Change to more solid stool? I don't know what to expect.
When I get to remission then I can add safe foods slowly? I'm wishful thinking there....
I would like to think I just got some bum turkey. I'm going to buy one of the turkey brands I have read about on this board and give it another go - at least try the mouth trick for 30 sec to see if my heart rate goes up. I'm not willing to give myself another flare! I bought a chicken from Whole Foods that said it was 'Fast air chilled' or something. It was ok for me. Broth from it jelled beautifully in the crockpot and I swear I can feel it helping when I eat it.
Tex mentioned the chicken needs to be frozen at 0 or below. That's not necessary for after it's cooked is it? Cuz I don't have a commercial freezer at home. I fast chill after cooking and freeze immediately for future use.
I've lost 25# and my family is really freaking out. I only weighed 123 to start with. I'm eating every couple hours and adding coconut oil to my rice to increase the calories. The last couple days I've felt better than I have in some weeks. Fingers crossed. Thank you all from the bottom of my heart!
Colleen
Dear Colleen,
I am sorry that you are having such a rough time. When I was first researching (and found this wonderful forum of caring, supportive folks) I also found the following link. This may or may not be suitable for you, but at least is an option to consider as you had asked about pepto dosages.
https://insitedigestive.com/insite-pati ... c-colitis/
I saved it because it had a GI doc’s alternative treatment to Budesonide, with dosages:
“Antidiarrheal medications such as bismuth subsalicylate (Pepto-Bismol) and loperamide (Imodium) are effective for some patients but used in higher than typical “bottle label” doses. For example, we’ll have patients with mild cases use loperamide 1-3 caplets before meals and bedtime, and take bismuth 2 tablespoons or tablets after meals and bedtime for up to a few weeks at a time and taper down doses when symptoms are better. The bismuth seems to help relieve the inflammation and symptoms may stay cleared up then without treatment for considerable periods.”
I haven’t tried it yet, as Budesonide worked for me. (I currently have tapered down to the the 3 mg/day dosage, along with D3, magnesium lotion and a very limited diet as recommended on this forum.) But I figured that I will need to try an alternative in the future if (when) I relapse.
I hope you feel better very soon.
I am sorry that you are having such a rough time. When I was first researching (and found this wonderful forum of caring, supportive folks) I also found the following link. This may or may not be suitable for you, but at least is an option to consider as you had asked about pepto dosages.
https://insitedigestive.com/insite-pati ... c-colitis/
I saved it because it had a GI doc’s alternative treatment to Budesonide, with dosages:
“Antidiarrheal medications such as bismuth subsalicylate (Pepto-Bismol) and loperamide (Imodium) are effective for some patients but used in higher than typical “bottle label” doses. For example, we’ll have patients with mild cases use loperamide 1-3 caplets before meals and bedtime, and take bismuth 2 tablespoons or tablets after meals and bedtime for up to a few weeks at a time and taper down doses when symptoms are better. The bismuth seems to help relieve the inflammation and symptoms may stay cleared up then without treatment for considerable periods.”
I haven’t tried it yet, as Budesonide worked for me. (I currently have tapered down to the the 3 mg/day dosage, along with D3, magnesium lotion and a very limited diet as recommended on this forum.) But I figured that I will need to try an alternative in the future if (when) I relapse.
I hope you feel better very soon.
Some days there won't be a song in your heart. Sing anyway. —Emory Austin
Dear Harmony,
Thank you for your concern and your wise words. I am reading everything I can get my hands on about this affliction. Knowledge is power. And Lord knows you feel pretty powerless with this. Finding what I can safely eat has been the biggest challenge. Seems like one day it works and the next day it doesn't. I have had the best day yet today. I'm praying it continues. Tomorrow I am planning a trip to the local meat market to find some game meats. It's kind of amusing to me that when my dogs have come up with allergies to foods we turn to oddball game meats their guts won't recognize and react to - and thats what I am doing for myself now.
Its good to know you can increase the dosage of the OTC meds. I have to admit taking 8 pepto per day seems daunting to me. But after a year of this I'm ready to try it.
Hope to be sending good news soon!
Colleen
Thank you for your concern and your wise words. I am reading everything I can get my hands on about this affliction. Knowledge is power. And Lord knows you feel pretty powerless with this. Finding what I can safely eat has been the biggest challenge. Seems like one day it works and the next day it doesn't. I have had the best day yet today. I'm praying it continues. Tomorrow I am planning a trip to the local meat market to find some game meats. It's kind of amusing to me that when my dogs have come up with allergies to foods we turn to oddball game meats their guts won't recognize and react to - and thats what I am doing for myself now.
Its good to know you can increase the dosage of the OTC meds. I have to admit taking 8 pepto per day seems daunting to me. But after a year of this I'm ready to try it.
Hope to be sending good news soon!
Colleen
Colleen,
For some strange reason veterinarians are decades ahead of human doctors (MDs) as far as treating food allergies are concerned.
You might be interested in this website, by John B. Symes, D.V.M. He's a pioneer in treating food sensitivities, and he's had a website for around 20 years. This website probably contains more extensive information on food sensitivities than you can find anywhere else.
http://dogtorj.com/
Here's a link to his blog:
http://www.dogtorj.net/
Tex
For some strange reason veterinarians are decades ahead of human doctors (MDs) as far as treating food allergies are concerned.
You might be interested in this website, by John B. Symes, D.V.M. He's a pioneer in treating food sensitivities, and he's had a website for around 20 years. This website probably contains more extensive information on food sensitivities than you can find anywhere else.
http://dogtorj.com/
Here's a link to his blog:
http://www.dogtorj.net/
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,
Wow! I'm amazed at all the information as applied to dogs. Tho I don't know why I should be surprised since it's common knowledge to dog people what to do if you're dog has allergies! I will be sharing the web site and blog with all my dog friends! We are always comparing notes on dog food. This adds a whole new dimension. Thank you for sharing.
Colleen
Wow! I'm amazed at all the information as applied to dogs. Tho I don't know why I should be surprised since it's common knowledge to dog people what to do if you're dog has allergies! I will be sharing the web site and blog with all my dog friends! We are always comparing notes on dog food. This adds a whole new dimension. Thank you for sharing.
Colleen
I was wondering if you could give me your opinion on my latest developments.
I bought some elk at our local butcher shop. Came home and cooked it. I tried one bite, holding it in my mouth for 30 seconds while watching my pulse rate. My pulse immediately went up from 55 to 66. I thought, how could this be? I've never eaten elk? So i swallowed that 1 bite. Next day I paid with wd all afternoon.
I bought duck also - cooked it in the crockpot, put 1 bite in my mouth and my pulse went up 3-4 bpm. At 1 am had wd. I havent had to get up in the nite for 10 days.
I don't get how I can be allergic to something I've never eaten. Any insights?
I'm on day 2 of the pepto challenge. Ive decided not to try anything new til I'm normal, fingers crossed. I thought these game meats would be safe. Guess not. :(
I bought some elk at our local butcher shop. Came home and cooked it. I tried one bite, holding it in my mouth for 30 seconds while watching my pulse rate. My pulse immediately went up from 55 to 66. I thought, how could this be? I've never eaten elk? So i swallowed that 1 bite. Next day I paid with wd all afternoon.
I bought duck also - cooked it in the crockpot, put 1 bite in my mouth and my pulse went up 3-4 bpm. At 1 am had wd. I havent had to get up in the nite for 10 days.
I don't get how I can be allergic to something I've never eaten. Any insights?
I'm on day 2 of the pepto challenge. Ive decided not to try anything new til I'm normal, fingers crossed. I thought these game meats would be safe. Guess not. :(
That's incredible. I can't explain why that happened. How did you cook the elk? I wonder if the butcher might have sliced the elk with a blade that had been exposed to a product that contains gluten. Steaks are usually cut with a band saw while the hind quarter or shoulder is frozen, so it's not very likely that gluten could get involved there. If they were boneless though, and they were sliced on a circular meat slicer after being thawed, it's certainly a more likely possibility, because the slicer might have been previously used for slicing deli meats that contain gluten.
I have to agree — not adding anything new until you've been in stable remission for a while looks like a good plan.
Tex
I have to agree — not adding anything new until you've been in stable remission for a while looks like a good plan.
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.
If you cannot eat a particular meat - like beef or chicken - is it then NOT safe to make the bone broth from that animal? I read all the posts I could find on bone broth and I couldn't find any reference to this. Or maybe I missed it. I only assumed one could not consume that type of broth, but am I wrong?
I want to get some bones from Whole Foods, but want to be sure I'm getting the right thing.
Thanks,
Colleen
I want to get some bones from Whole Foods, but want to be sure I'm getting the right thing.
Thanks,
Colleen