Hello Group,
I just became a member. My story feels long so I will put it in a nutshell:
Intermittent issues with D over the past several years.
BIG issues with D starting last October. Having D 6-8 times per night and an additional 6-10 times during the day. Worst day was 20 times.
Pooped my pants for the first time in my life. Many times. Humiliating.
I was convinced I had an intolerance to magnesium. I have always been athletic, so I had learned the importance of mag when I was 30. So during the last 30 years (now 62) I took mag every day, about 400 mg. No problems. Until a few years ago. So I stopped taking it. But I have wanted to get back on mag. So I experimented this past fall with every type known to man. Each and every time I got D. It would resolve a couple days later. I even tried just high mag food like pumpkin seeds. It gave me D.
So off to the doc. I tell her I seem to be intolerant of mag. I had cleared all possible mag out of my diet. She tested my blood. Mag normal.
Then I got into another flare. Not taking mag, low mag foods. But tons of D and nighttime D. Back to the doc. Stool tests and blood tests all normal. Referred to gastro.
Had my gastro appt two days ago. She does the checkup and looks at my last colonoscopy in Nov 2019. She says to me….”did you know you have CC?” Me: “no, where does it say that”. There was a biopsy of a polyp, the lab reported back that it was not cancerous but it was collagenous colitis. It was an accidental discovery. And no one ever told me.
So, two questions: has anyone with this disease become intolerant of mag when they had no problem taking for 30 years?
Also, I feel a little upset that no one told me. Had I known, I could have been saved a lot of additional tests and a lot of worry and humiliation. Would any of you be upset? Maybe I should let that go.
Please advise.
New Diagnosis
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Re: New Diagnosis
Hello Diane,
We understand your resentment of the slow, inept diagnosis of your CC, but truth be told, most of us have had a similar experience, or worse. Many of us have been misdiagnosed for 10, or 20, or more years, before receiving a correct diagnosis. And that suggests that there are probably more than a few of us out there who have given up after trying to get a correct diagnosis for so many years.
Regardless of what they tell you, most gastroenterologists (for all practical purposes, virtually all of them), simply do not understand this disease, and they absolutely are lost when they attempt to treat it. Some of them are learning, true, but progress is excruciatingly slow, and their learning process is being held back by the oppressive restrictions of the medical profession, itself. So your experiences, in general, are typical of most of us — except for the magnesium situation. However, if the gastroenterologist who did your colonoscopy in 2019 never bothered to tell you that you had CC, he or she is guilty of gross incompetence/malpractice/negligence, and should have their license revoked. At the very least, they shouldn't be pretending to be a gastroenterologist.
Your experience with magnesium is extraordinarily unique. This discussion forum will have been in continuous operation for almost 18 years, next month, and although I have probably failed to read less than a handful of posts during all those years, I have never, ever heard of a case such as yours.
Theoretically, at least, it's impossible to be intolerant of magnesium. That's because all known allergies or intolerances are associated with proteins, with one exception. That exception is mammalian meat allergy,or alpha gal syndrome. Galactose-alpha-1,3-galactose (alpha-gal) is a sugar unique to the tissues of most mammals, and the allergy is created by the bite of the Lone Star tick (Amblyomma americanum) in the US, and the paralysis tick (Ixodes holocyclus) in Australia. That syndrome is still uncommon, but it's prevalence is increasing, especially in certain locations. But the point is, other than this unique situation, food intolerances are triggered by proteins.
That said, I don't doubt that you may be reacting to magnesium, because more than a few of us here have problems tolerating supplemental magnesium when our disease is active, especially oral supplements. Magnesium has laxative effects, and when MC is active, we definitely don't need any laxative stimulants, unless our reactions involve constipation, rather than diarrhea. Constipation dominant reactions are uncommon, but a few people even have normal bowel movements associated with MC. Obviously, those cases normally remain undiagnosed, unless they are diagnosed coincidentally because of some other investigation.
But to get back to your situation, many of those of us who cannot tolerate an oral magnesium supplement while we're reacting (or at all times) utilize frequent foot soaks, or bathwater soaks, in water saturated with Epsom salts. However, a few people are unable to tolerate even those methods, when their MC is active. It's best to use some type of magnesium supplementation, if possible, since MC depletes magnesium, and magnesium is essential for over 300 chemical reactions in the body, including the activation of vitamin D, so that our immune system can use it. And for those of us who are taking budesonide, budesonide depletes magnesium, also, which, of course, leads to osteoporosis, since we can't absorb calcium without adequate vitamin D and magnesium.
I hope this helps, although please bear in mind that this is just my opinion as a student of MC. I'm not a Doctor, so anything I say should not be construed as medical advice.
Again, welcome aboard, and please feel free to ask anything.
Tex
We understand your resentment of the slow, inept diagnosis of your CC, but truth be told, most of us have had a similar experience, or worse. Many of us have been misdiagnosed for 10, or 20, or more years, before receiving a correct diagnosis. And that suggests that there are probably more than a few of us out there who have given up after trying to get a correct diagnosis for so many years.
Regardless of what they tell you, most gastroenterologists (for all practical purposes, virtually all of them), simply do not understand this disease, and they absolutely are lost when they attempt to treat it. Some of them are learning, true, but progress is excruciatingly slow, and their learning process is being held back by the oppressive restrictions of the medical profession, itself. So your experiences, in general, are typical of most of us — except for the magnesium situation. However, if the gastroenterologist who did your colonoscopy in 2019 never bothered to tell you that you had CC, he or she is guilty of gross incompetence/malpractice/negligence, and should have their license revoked. At the very least, they shouldn't be pretending to be a gastroenterologist.
Your experience with magnesium is extraordinarily unique. This discussion forum will have been in continuous operation for almost 18 years, next month, and although I have probably failed to read less than a handful of posts during all those years, I have never, ever heard of a case such as yours.
Theoretically, at least, it's impossible to be intolerant of magnesium. That's because all known allergies or intolerances are associated with proteins, with one exception. That exception is mammalian meat allergy,or alpha gal syndrome. Galactose-alpha-1,3-galactose (alpha-gal) is a sugar unique to the tissues of most mammals, and the allergy is created by the bite of the Lone Star tick (Amblyomma americanum) in the US, and the paralysis tick (Ixodes holocyclus) in Australia. That syndrome is still uncommon, but it's prevalence is increasing, especially in certain locations. But the point is, other than this unique situation, food intolerances are triggered by proteins.
That said, I don't doubt that you may be reacting to magnesium, because more than a few of us here have problems tolerating supplemental magnesium when our disease is active, especially oral supplements. Magnesium has laxative effects, and when MC is active, we definitely don't need any laxative stimulants, unless our reactions involve constipation, rather than diarrhea. Constipation dominant reactions are uncommon, but a few people even have normal bowel movements associated with MC. Obviously, those cases normally remain undiagnosed, unless they are diagnosed coincidentally because of some other investigation.
But to get back to your situation, many of those of us who cannot tolerate an oral magnesium supplement while we're reacting (or at all times) utilize frequent foot soaks, or bathwater soaks, in water saturated with Epsom salts. However, a few people are unable to tolerate even those methods, when their MC is active. It's best to use some type of magnesium supplementation, if possible, since MC depletes magnesium, and magnesium is essential for over 300 chemical reactions in the body, including the activation of vitamin D, so that our immune system can use it. And for those of us who are taking budesonide, budesonide depletes magnesium, also, which, of course, leads to osteoporosis, since we can't absorb calcium without adequate vitamin D and magnesium.
I hope this helps, although please bear in mind that this is just my opinion as a student of MC. I'm not a Doctor, so anything I say should not be construed as medical advice.
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.
Re: New Diagnosis
Hi Diane,
Along with the foot soaks/epsom salt baths that Tex suggested, i used the following two magnesium lotions when i was still recovering, as i wasn't able to tolerate oral magnesium until i was healed.
https://www.amazon.com/Ancient-Minerals ... d_rp_0_1_t
https://www.amazon.com/Life-Flo-Magnesi ... 155&sr=1-4
Jen
Along with the foot soaks/epsom salt baths that Tex suggested, i used the following two magnesium lotions when i was still recovering, as i wasn't able to tolerate oral magnesium until i was healed.
https://www.amazon.com/Ancient-Minerals ... d_rp_0_1_t
https://www.amazon.com/Life-Flo-Magnesi ... 155&sr=1-4
Jen
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dianebarkeridaho
- Posts: 16
- Joined: Fri Mar 31, 2023 5:40 pm
Re: New Diagnosis
Hello Tex. Thank you for your well-reasoned and informative reply.
I have been on 6 tablets per day of Pepto . It is like a miracle drug for me. No nocturnal D, and only 1-2 bm for 2 days now. I guess I will stay on it for two weeks. I also started eating bland since two days ago. Turkey and rice lunch and dinner. French toast in the morning with peaches. Previously my diet consisted of a LOT of nuts, granola, blueberries, beans, hummus, huge kale salads, and more nuts.
So, while I am having normal bm I am going to take small doses of mag glyginate with meals. Maybe 100mg each meal?
By the way, as a big believer in vit D I have taken 5,000 per day since 2007. I had that tested recently wondering if that was causing the D. My blood level was 75.
In addition, I had my first bone scan for osteoporosis a little over a year ago. My score was very good, comparable to a 35 year old woman. I attribute that to the vitamin D and mag I took for so many years as well as dedication to exercise.
I really am back on my heals about the quality of life that would not have been lost had they told me about the diagnosis. I will gingerly approach that subject with the two people who failed to tell me. I would not want that to happen to anyone else. I wonder if those two people would have told me I had cancer if the biopsy had said that? Thank goodness for the doc I saw last week who caught it.
Which brings me to another subject…why was her first reaction to discovering this is to schedule a colonoscopy? I read Dr. Pardi from Mayo. And watched his PowerPoint on YouTube. It seems to me that he is saying…..”try pepto, try budesapine, and only if this don’t work…then do another colonoscopy.” To me, that seems rational. When I returned home to my partner, who is retired veterinarian, he said “why a colonoscopy? We have a diagnosis”. I am on the 5 year plan for colonoscopy because my mom survived colon cancer. My next is due in January. That one is free. If I do one now it is $3,000. It just does not seem necessary.
Thanks for your help and for everyone in this forum. I am so impressed by the communication between the group that is filled with intelligence, sharing, and compassion. I have belonged to other groups….this one stands out.
I have been on 6 tablets per day of Pepto . It is like a miracle drug for me. No nocturnal D, and only 1-2 bm for 2 days now. I guess I will stay on it for two weeks. I also started eating bland since two days ago. Turkey and rice lunch and dinner. French toast in the morning with peaches. Previously my diet consisted of a LOT of nuts, granola, blueberries, beans, hummus, huge kale salads, and more nuts.
So, while I am having normal bm I am going to take small doses of mag glyginate with meals. Maybe 100mg each meal?
By the way, as a big believer in vit D I have taken 5,000 per day since 2007. I had that tested recently wondering if that was causing the D. My blood level was 75.
In addition, I had my first bone scan for osteoporosis a little over a year ago. My score was very good, comparable to a 35 year old woman. I attribute that to the vitamin D and mag I took for so many years as well as dedication to exercise.
I really am back on my heals about the quality of life that would not have been lost had they told me about the diagnosis. I will gingerly approach that subject with the two people who failed to tell me. I would not want that to happen to anyone else. I wonder if those two people would have told me I had cancer if the biopsy had said that? Thank goodness for the doc I saw last week who caught it.
Which brings me to another subject…why was her first reaction to discovering this is to schedule a colonoscopy? I read Dr. Pardi from Mayo. And watched his PowerPoint on YouTube. It seems to me that he is saying…..”try pepto, try budesapine, and only if this don’t work…then do another colonoscopy.” To me, that seems rational. When I returned home to my partner, who is retired veterinarian, he said “why a colonoscopy? We have a diagnosis”. I am on the 5 year plan for colonoscopy because my mom survived colon cancer. My next is due in January. That one is free. If I do one now it is $3,000. It just does not seem necessary.
Thanks for your help and for everyone in this forum. I am so impressed by the communication between the group that is filled with intelligence, sharing, and compassion. I have belonged to other groups….this one stands out.
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dianebarkeridaho
- Posts: 16
- Joined: Fri Mar 31, 2023 5:40 pm
Re: New Diagnosis
Hello Jennifer. I tried to figure out how to message you last night because of something you said about mag quite some time ago. And now there you are!
Anyway… when I tried to reintroduce mag into my life in early 2020, I tried a mag oil. I tried it at least 10 times and it was like my legs were on fire with itchy, hot, feeling. I couldn’t take it. I tried to reintroduce mag because I was getting wicked leg cramps at night…..and I figured it was from lack of mag due not being able to take the pills anymore despite having taken it without incidence for 30 years.
Any thoughts on that reaction to topical mag?
Anyway… when I tried to reintroduce mag into my life in early 2020, I tried a mag oil. I tried it at least 10 times and it was like my legs were on fire with itchy, hot, feeling. I couldn’t take it. I tried to reintroduce mag because I was getting wicked leg cramps at night…..and I figured it was from lack of mag due not being able to take the pills anymore despite having taken it without incidence for 30 years.
Any thoughts on that reaction to topical mag?
Re: New Diagnosis
Hello Dianne,
Yes, your partner is correct. Apparently, colonoscopies are a bread-and-butter item for gastroenterologists, so they take every opportunity to recommend one. Virtually everyone here who has gone to a new gastroenterologist, or their prescribed treatment failed to work, or the moon changed phases, etc., has had their gastroenterologist recommend a repeat colonoscopy. There's no telling how many thousands of unnecessary colonoscopies have been done, but according to the posts on this forum, nothing new has ever been found by a repeat colonoscopy. The problem is always unresolved microscopic colitis that's refractive to the prescribed treatment. And since colonoscopies are not without risk (according to statistics, 3 to 4% of them result in perforations, which require emergency surgery), repeat colonoscopies are rarely justified, after an MC diagnosis. Doctor Pardi appears to be one of the most knowledgeable gastroenterologist in the world, when it comes to understanding MC.
Note that when our MC is active, we can't tolerate significant amounts of fiber in our diet, nor any raw vegetables, especially salads. Iceberg lettuce would turn me inside out, back when I was still reacting. And keep an eye on the French toast, because most of us can't safely tolerate commercially processed gluten-free bread until we're in remission (most of them contain too many ingredients), and if you're using the same toaster that's used for toasting wheat bread, your diet is probably being cross contaminated every morning. Other than that, your diet sounds good.
The Pepto treatment is at least as effective as budesonide, for most of us, as long as we don't develop tinnitus. If you do, it's time to discontinue the medication, before the Tinnitus becomes permanent.
Your vitamin D level should be fine. I try to keep mine between 60 and 80, but it sometimes falls to around 50, because I live in sunny central Texas, so I' I cut my dose from 5000 IU per day to 5000 every other day, during the warmest half of the year.
I take a 100 mg tablet of magnesium glycinate after each meal, but I've been in remission for 18 years. If the diarrhea returns after you've discontinued the Pepto, you may have to reduce the magnesium dose for a while, until your digestive system does more healing.
Tex
Yes, your partner is correct. Apparently, colonoscopies are a bread-and-butter item for gastroenterologists, so they take every opportunity to recommend one. Virtually everyone here who has gone to a new gastroenterologist, or their prescribed treatment failed to work, or the moon changed phases, etc., has had their gastroenterologist recommend a repeat colonoscopy. There's no telling how many thousands of unnecessary colonoscopies have been done, but according to the posts on this forum, nothing new has ever been found by a repeat colonoscopy. The problem is always unresolved microscopic colitis that's refractive to the prescribed treatment. And since colonoscopies are not without risk (according to statistics, 3 to 4% of them result in perforations, which require emergency surgery), repeat colonoscopies are rarely justified, after an MC diagnosis. Doctor Pardi appears to be one of the most knowledgeable gastroenterologist in the world, when it comes to understanding MC.
Note that when our MC is active, we can't tolerate significant amounts of fiber in our diet, nor any raw vegetables, especially salads. Iceberg lettuce would turn me inside out, back when I was still reacting. And keep an eye on the French toast, because most of us can't safely tolerate commercially processed gluten-free bread until we're in remission (most of them contain too many ingredients), and if you're using the same toaster that's used for toasting wheat bread, your diet is probably being cross contaminated every morning. Other than that, your diet sounds good.
The Pepto treatment is at least as effective as budesonide, for most of us, as long as we don't develop tinnitus. If you do, it's time to discontinue the medication, before the Tinnitus becomes permanent.
Your vitamin D level should be fine. I try to keep mine between 60 and 80, but it sometimes falls to around 50, because I live in sunny central Texas, so I' I cut my dose from 5000 IU per day to 5000 every other day, during the warmest half of the year.
I take a 100 mg tablet of magnesium glycinate after each meal, but I've been in remission for 18 years. If the diarrhea returns after you've discontinued the Pepto, you may have to reduce the magnesium dose for a while, until your digestive system does more healing.
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.
Re: New Diagnosis
Hi Diane,
You said you tried magnesium oil and had the issues, the links i sent to you are for magnesium lotion.
I have heard that magnesium oil can sometimes sting.
Maybe you just have thinner or more sensitive skin?
Start with the lotion and let your skin get used to absorbing magnesium.
Also, don't apply it on very dry or broken skin, it will sting.
Best to apply after a warm bath or shower while pores are open.
I found the lotion to be soothing, relaxing and moisturizing, esp when applying before bed.
Hope this helps, good luck!
Jen
You said you tried magnesium oil and had the issues, the links i sent to you are for magnesium lotion.
I have heard that magnesium oil can sometimes sting.
Maybe you just have thinner or more sensitive skin?
Start with the lotion and let your skin get used to absorbing magnesium.
Also, don't apply it on very dry or broken skin, it will sting.
Best to apply after a warm bath or shower while pores are open.
I found the lotion to be soothing, relaxing and moisturizing, esp when applying before bed.
Hope this helps, good luck!
Jen
Re: New Diagnosis
Diane,
I had the same thought as Tex when i read your post.
I would be concerned about the french toast.
Not only the processed bread, but the egg, as well.
Have you done Enterolab by any chance?
Jen
I had the same thought as Tex when i read your post.
I would be concerned about the french toast.
Not only the processed bread, but the egg, as well.
Have you done Enterolab by any chance?
Jen
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dianebarkeridaho
- Posts: 16
- Joined: Fri Mar 31, 2023 5:40 pm
Re: New Diagnosis
Hi Tex and Jennifer,
I have just learned about the Enterolab tests. I went to the website. A bit confusing. But I will read up on it.
I will order the mag lotion.
Yes, I have wondered about eggs….when things got out of control last fall I had been eating almond flour pancakes made with just almond flour and egg whites, topped with blueberries, yogurt, and Brazil nuts or walnuts. After a couple of big flares surrounding the time I had Brazil nuts on hand….I started reading about those nuts. I was eating about 15 nuts each morning AND taking a selenium supplement 200mg. Well….will all of that I was getting WAY too much selenium. So I stopped the Brazil and in about 3 weeks I was better. So until this last flare a few weeks ago, I had thought this all was about selenium toxicity and I had solved it. Not so.
Anyway, thanks so much for engaging with folks on this topic. I am sure that without this resource I would be in a world of hurt. You all are good people. I will read up some more and make changes to my diet. Still in that learning phase.
I have just learned about the Enterolab tests. I went to the website. A bit confusing. But I will read up on it.
I will order the mag lotion.
Yes, I have wondered about eggs….when things got out of control last fall I had been eating almond flour pancakes made with just almond flour and egg whites, topped with blueberries, yogurt, and Brazil nuts or walnuts. After a couple of big flares surrounding the time I had Brazil nuts on hand….I started reading about those nuts. I was eating about 15 nuts each morning AND taking a selenium supplement 200mg. Well….will all of that I was getting WAY too much selenium. So I stopped the Brazil and in about 3 weeks I was better. So until this last flare a few weeks ago, I had thought this all was about selenium toxicity and I had solved it. Not so.
Anyway, thanks so much for engaging with folks on this topic. I am sure that without this resource I would be in a world of hurt. You all are good people. I will read up some more and make changes to my diet. Still in that learning phase.
-
Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
Re: New Diagnosis
hi there
welcome to the group and sympathies for your journey and that you had to find us
my only thoughts to expand to what Tex and Jennifer have replied with
- what brand of Vit D are you taking? make sure you are taking one that is gluten, dairy and soy free
- regarding foods. for some here they will remove a food item (for you it was the Brazil nuts) and they will see improvements for a few weeks and then symptoms return, as another item in our diets is causing issues. This has happened to a few people here.
the first 6 - 9 months is hardest part as you sort out your safe eating, safe supplements and get some good healing happening
breathe, be patient. there is no quick fix.
Re the magnesium oil. - you can reduce it using demineralised water this may reduce the stinging.
another option is Epsom salt foot soaks or magnesium chloride foot soaks, these should not cause issues to the skin
you could do these morning and night and get the daily RDI of magnesium
welcome to the group and sympathies for your journey and that you had to find us
my only thoughts to expand to what Tex and Jennifer have replied with
- what brand of Vit D are you taking? make sure you are taking one that is gluten, dairy and soy free
- regarding foods. for some here they will remove a food item (for you it was the Brazil nuts) and they will see improvements for a few weeks and then symptoms return, as another item in our diets is causing issues. This has happened to a few people here.
the first 6 - 9 months is hardest part as you sort out your safe eating, safe supplements and get some good healing happening
breathe, be patient. there is no quick fix.
Re the magnesium oil. - you can reduce it using demineralised water this may reduce the stinging.
another option is Epsom salt foot soaks or magnesium chloride foot soaks, these should not cause issues to the skin
you could do these morning and night and get the daily RDI of magnesium
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama