Presentation and looking for advice
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Presentation and looking for advice
Hello everyone, My name is David.
I am a 35 years old guy from Spain. I've following this wonderful community since I got my MC diagnosis in June 2017, only reading, never writing until now. So the first thing I would like to do is thank you for such a valuable information and support, I really appreciate your devotion, specially Wayne's.
Despite being so rookie as a forum participant, I've been trying to read and learn as much as possible during this time, and of course I read several times your main work, Persky. Your book is always in my shelf and I'm used to look up every doubt I have on it. On top of that, I can't forget to mention the newsletter which I'm always looking forward to. Very up to date.
As most of you, I hold the opinion about GI's limited understanding of the disease, so here I am, on my sixth series of budesonide, with some important questions with no sort of answer, yet.
Thus, I want to share with all of you an abridged version of my story, because I've learned nobody will have a better point of view than a sufferer has.
------
Everything started to get really wrong on my first year at university, on my nineteen's. It was a very stressful moment with a lot of changes for me. I remember I was obsessed with working out, physical appearance, my first girlfriend etc.
As a consequence, I guess, I developed such a strong insomnia, and I met every benzo out there, always accompained by an SSRI (I remember sertraline among others). They prescribed these as candies...
My twenties went by on this situation, combined with therapy of course, and as far as I remember, in some moment in between I started experiencing daily diahrrea.
In 2014 I bottomed out, I only slept a couple of hours every other day, my anxiety blown up almost to the the sky, eccemas on different parts of my body, addicted to benzos and I'd been suffering diahrreas everyday for years. So my family invested money we didn't have on a clinic of reputation here in Spain... They put me on different SSRI and more benzos... But they added the tetracycle mirtazapine.
Such a improvement on my gut! After only 3 or 4 days, my watery diahrrea started to improve as never before during the last years. I knew that SSRI changes on brain takes longer... But at that moment I didn't pay to much attention, I started to feel amazing, and not only my gut. My sleep was good enough, my strength increased, my pains lessened. This lasted two years, It was unforgettable after so many years suffering.
That dream came to an end, and my gut syntoms and anxiety returned. This time my family doctor, at long last, sent me to GI specialist and they made some test on me: lactose intolerance and gluten antibodies, nothing was found. Finally they looked at my colon throught biopsy and found Lymphocytic MC. The diagnosis was in 2017. I was expecting some diet changes or tips but they just put me on endocort.
With budesonide I improved, no more diahrrea. But some months after quitting it, the symptoms came back. So, on my own, encouraged by this community, I quitted gluten (even today I continue eating GF).
After some more budesonide series, they recommended me trying prebiotics, and probiotics. It was even worse, so they ended up putting me on Imurel (azathioprine).
I was on that drug one year and a half. I was totally drained, no energy at all, I could hardly workout, or even going upstairs without feeling exhausted. Also my blood analysis showed my liver transaminases very high, also my cholesterol skyrocketed. The worst part: My diahrrea continued and I got an infection in my foot, which lasted months (I didn't want to take more antibiotics so I was stuck to topical ones). At this point I decided quiting azathioprine on my own.
That was on June 2021. Next I did was starting vit D, doctor best Mg, I quitted eggs and dairy. Basically I put myself on stage 1 diet, which I continue on so far.
I feel that It helps, but at this point I don't tolerate small quantities of rice any more, and the joint pain (very occasional before) is now on my daily basis (fingers, knees) and the worst is that I experience some sort of tendonitis or enthesitis in arms and shoulders. Besides, I cannot tolerate high histamine food items at all, my whole body itches. I feel like this is getting worse.
One thought of mine is that, mirtazapine as H1, generated kind of tolerance some years ago, I clearly noticed like my seasonal fever during first two years on Mirta was a piece of cake but this year was like hell on earth (same as before). By the way: my DAO in blood is perfect.
Last week I went back to another doctor. She put me on endocort followed by mesalazine, trying to keep effects from the first along the time...
At this moment I continue taking fluvoxamine(SSRI), mirtazapine and quetiapine. Each time I ask a doctor about a possible relationship with MC they just shrug, really...
I've already tried quitting, at least SSRI, twice! But I failed despite doing it slowly. Doing that on my own is hard. Without any support by the GI specialists, and even against their opinion (family doctor). I got really scared, because I experienced insomnia again and diahrrea during the process. I realized I've never really quitted totally, after more than a decade.
----
As additional info, my sister (4 years younger) was diagnosed with celiac disease 3 years ago and this month with Lupus. I've never drunk alcohol or smoke any drug. Maybe all of this is not related at all, but I like to mention it, just in case.
So, all in all, here I am opening my life to all of you and practicing my English
What is your opinion?. Is there somebody with a similar story on SSRI drugs? I really don't know if they are hurting me or not, but I tried everything but this, and doctors look at me as If they didn't know what I'm talking about. It's unbelievable the lack of knowledge about MC, at least in Madrid (Spain).
Is there any other option for me out there? Something to consider? I'm totally open minded and any advice is welcome.
For real, thank you so much to all of you.
By the way, during last years I've always kept an eye on drug induced MC and this year this meta-analysis came out: https://pubmed.ncbi.nlm.nih.gov/36067746/
Another interesting articles related to serotonin:
- https://www.researchgate.net/publicatio ... testinales
- https://pubmed.ncbi.nlm.nih.gov/32967429/
I am a 35 years old guy from Spain. I've following this wonderful community since I got my MC diagnosis in June 2017, only reading, never writing until now. So the first thing I would like to do is thank you for such a valuable information and support, I really appreciate your devotion, specially Wayne's.
Despite being so rookie as a forum participant, I've been trying to read and learn as much as possible during this time, and of course I read several times your main work, Persky. Your book is always in my shelf and I'm used to look up every doubt I have on it. On top of that, I can't forget to mention the newsletter which I'm always looking forward to. Very up to date.
As most of you, I hold the opinion about GI's limited understanding of the disease, so here I am, on my sixth series of budesonide, with some important questions with no sort of answer, yet.
Thus, I want to share with all of you an abridged version of my story, because I've learned nobody will have a better point of view than a sufferer has.
------
Everything started to get really wrong on my first year at university, on my nineteen's. It was a very stressful moment with a lot of changes for me. I remember I was obsessed with working out, physical appearance, my first girlfriend etc.
As a consequence, I guess, I developed such a strong insomnia, and I met every benzo out there, always accompained by an SSRI (I remember sertraline among others). They prescribed these as candies...
My twenties went by on this situation, combined with therapy of course, and as far as I remember, in some moment in between I started experiencing daily diahrrea.
In 2014 I bottomed out, I only slept a couple of hours every other day, my anxiety blown up almost to the the sky, eccemas on different parts of my body, addicted to benzos and I'd been suffering diahrreas everyday for years. So my family invested money we didn't have on a clinic of reputation here in Spain... They put me on different SSRI and more benzos... But they added the tetracycle mirtazapine.
Such a improvement on my gut! After only 3 or 4 days, my watery diahrrea started to improve as never before during the last years. I knew that SSRI changes on brain takes longer... But at that moment I didn't pay to much attention, I started to feel amazing, and not only my gut. My sleep was good enough, my strength increased, my pains lessened. This lasted two years, It was unforgettable after so many years suffering.
That dream came to an end, and my gut syntoms and anxiety returned. This time my family doctor, at long last, sent me to GI specialist and they made some test on me: lactose intolerance and gluten antibodies, nothing was found. Finally they looked at my colon throught biopsy and found Lymphocytic MC. The diagnosis was in 2017. I was expecting some diet changes or tips but they just put me on endocort.
With budesonide I improved, no more diahrrea. But some months after quitting it, the symptoms came back. So, on my own, encouraged by this community, I quitted gluten (even today I continue eating GF).
After some more budesonide series, they recommended me trying prebiotics, and probiotics. It was even worse, so they ended up putting me on Imurel (azathioprine).
I was on that drug one year and a half. I was totally drained, no energy at all, I could hardly workout, or even going upstairs without feeling exhausted. Also my blood analysis showed my liver transaminases very high, also my cholesterol skyrocketed. The worst part: My diahrrea continued and I got an infection in my foot, which lasted months (I didn't want to take more antibiotics so I was stuck to topical ones). At this point I decided quiting azathioprine on my own.
That was on June 2021. Next I did was starting vit D, doctor best Mg, I quitted eggs and dairy. Basically I put myself on stage 1 diet, which I continue on so far.
I feel that It helps, but at this point I don't tolerate small quantities of rice any more, and the joint pain (very occasional before) is now on my daily basis (fingers, knees) and the worst is that I experience some sort of tendonitis or enthesitis in arms and shoulders. Besides, I cannot tolerate high histamine food items at all, my whole body itches. I feel like this is getting worse.
One thought of mine is that, mirtazapine as H1, generated kind of tolerance some years ago, I clearly noticed like my seasonal fever during first two years on Mirta was a piece of cake but this year was like hell on earth (same as before). By the way: my DAO in blood is perfect.
Last week I went back to another doctor. She put me on endocort followed by mesalazine, trying to keep effects from the first along the time...
At this moment I continue taking fluvoxamine(SSRI), mirtazapine and quetiapine. Each time I ask a doctor about a possible relationship with MC they just shrug, really...
I've already tried quitting, at least SSRI, twice! But I failed despite doing it slowly. Doing that on my own is hard. Without any support by the GI specialists, and even against their opinion (family doctor). I got really scared, because I experienced insomnia again and diahrrea during the process. I realized I've never really quitted totally, after more than a decade.
----
As additional info, my sister (4 years younger) was diagnosed with celiac disease 3 years ago and this month with Lupus. I've never drunk alcohol or smoke any drug. Maybe all of this is not related at all, but I like to mention it, just in case.
So, all in all, here I am opening my life to all of you and practicing my English
What is your opinion?. Is there somebody with a similar story on SSRI drugs? I really don't know if they are hurting me or not, but I tried everything but this, and doctors look at me as If they didn't know what I'm talking about. It's unbelievable the lack of knowledge about MC, at least in Madrid (Spain).
Is there any other option for me out there? Something to consider? I'm totally open minded and any advice is welcome.
For real, thank you so much to all of you.
By the way, during last years I've always kept an eye on drug induced MC and this year this meta-analysis came out: https://pubmed.ncbi.nlm.nih.gov/36067746/
Another interesting articles related to serotonin:
- https://www.researchgate.net/publicatio ... testinales
- https://pubmed.ncbi.nlm.nih.gov/32967429/
Scientia potentia est
Re: Presentation and looking for advice
Hello David,
Welcome to the group. You've been reacting, and taking powerful medications, for so many years, that it's going to be very difficult to get your health back on track. SSRIs and antidepressants trigger microscopic colitis reactions for many of us. Also, the joint pain you mentioned is a listed side effect of quetiapine. However, it's difficult to say whether you would be able to wean off of all, or any of those medications. It can be done, but it's usually quite difficult, and requires extreme dedication and perseverance.
Looking at all the health problems you've had over all the years, I'm guessing that your original problem was a chronic magnesium deficiency, because magnesium deficiency is associated with every problem that you mentioned. Magnesium deficiency causes poor sleep patterns, anxiety, depression, and related complications, and every disease known to medical science is associated with magnesium deficiency. Yet doctors never diagnose magnesium deficiency, because they don't understand how to diagnose it (or maybe they don't want to diagnose a magnesium deficiency, because it can cause so many diseases, and treating disease pays their salary). When they test for magnesium deficiency, they order a serum magnesium test which measures the magnesium level in the blood. But that level is automatically regulated by the body, because magnesium is an electrolyte, and the blood level of electrolytes is critical for proper cardiovascular functioning, and other vital body functions. The proper test that doctors should be ordering is the red blood cell (RBC) magnesium test.
We get magnesium from the meals we eat during the day, but as we use up that magnesium, then the body draws previously-stored magnesium from muscles and bones, in order to keep the blood magnesium level as constant as possible. That's why you're probably developing leg or foot cramps during the wee hours of the morning (as you run out of magnesium), and you have difficulty sleeping. Published medical research shows that anxiety and depression can be treated by taking a magnesium supplement. Magnesium relaxes the muscles of the body and the brain, so that we can get good, quality sleep. And yet, instead of prescribing magnesium, doctors always prescribe powerful antidepressants, because they're much more expensive, and therefore more profitable for the industry.
The problem at this point, is that if you been magnesium deficient for that long, trying to rebuild your magnesium reserves will be difficult. It will have to be done slowly, and carefully. Magnesium is used as a cofactor to allow insulin to transport nutrients from the blood to the cells where they are needed, during meal digestion. This implies that even magnesium will not be properly absorbed and transported to the cells where it's needed, if a chronic magnesium deficiency has compromised the ability of insulin to transport nutrients properly. It will take a while for insulin to regain its ability to function normally, so that magnesium reserves can be slowly rebuilt. The body can only absorb limited amounts of magnesium at any given time, anyway, even when insulin is functioning normally. Therefore, magnesium supplements have to be divided up and taken with or after meals, during the day. Too much magnesium, or too much at one time, can cause diarrhea. Therefore, restoring magnesium reserves often requires a careful balancing act, because some of us are more sensitive to magnesium than others.
Also, please be aware that published medical research shows that budesonide becomes less effective every time a treatment is stopped, and then restarted. This implies that for most individuals, at some point, budesonide will eventually completely lose its effectiveness.
Re: the gluten-free diet. Treating microscopic colitis by diet changes requires that all food sensitivities must be removed from the diet, in order for dietary control to be effective. Removing some of them, won't usually bring remission — all food sensitivities must be removed from the diet. This means that all foods that are causing our immune system to produce antibodies against them must be eliminated from the diet. Also, any and all medications that might be causing our immune system to produce antibodies must be removed from the diet, before admission can be attained. For most of us, that means gluten, all dairy products, all products that include ingredients derived from soy or legumes, and for many of us, this list also includes chicken eggs. When we react for many years, we become sensitive to other foods, which may have to be minimized or avoided until remission can be achieved. The only laboratory in the world that is capable of accurately and consistently detecting food sensitivities, is EnteroLab, but their stool tests kits can be ordered from anywhere in the world, by phone, or over the Internet. Their test results are not essential for designing a recovery diet, but those results can greatly simplify designing a safe diet that will bring remission, because they can pinpoint exactly which foods are safe, and which foods are not, based on the stool sample submitted to them.
I hope some of this helps. Again, welcome aboard, and please feel free to ask anything.
Tex
Welcome to the group. You've been reacting, and taking powerful medications, for so many years, that it's going to be very difficult to get your health back on track. SSRIs and antidepressants trigger microscopic colitis reactions for many of us. Also, the joint pain you mentioned is a listed side effect of quetiapine. However, it's difficult to say whether you would be able to wean off of all, or any of those medications. It can be done, but it's usually quite difficult, and requires extreme dedication and perseverance.
Looking at all the health problems you've had over all the years, I'm guessing that your original problem was a chronic magnesium deficiency, because magnesium deficiency is associated with every problem that you mentioned. Magnesium deficiency causes poor sleep patterns, anxiety, depression, and related complications, and every disease known to medical science is associated with magnesium deficiency. Yet doctors never diagnose magnesium deficiency, because they don't understand how to diagnose it (or maybe they don't want to diagnose a magnesium deficiency, because it can cause so many diseases, and treating disease pays their salary). When they test for magnesium deficiency, they order a serum magnesium test which measures the magnesium level in the blood. But that level is automatically regulated by the body, because magnesium is an electrolyte, and the blood level of electrolytes is critical for proper cardiovascular functioning, and other vital body functions. The proper test that doctors should be ordering is the red blood cell (RBC) magnesium test.
We get magnesium from the meals we eat during the day, but as we use up that magnesium, then the body draws previously-stored magnesium from muscles and bones, in order to keep the blood magnesium level as constant as possible. That's why you're probably developing leg or foot cramps during the wee hours of the morning (as you run out of magnesium), and you have difficulty sleeping. Published medical research shows that anxiety and depression can be treated by taking a magnesium supplement. Magnesium relaxes the muscles of the body and the brain, so that we can get good, quality sleep. And yet, instead of prescribing magnesium, doctors always prescribe powerful antidepressants, because they're much more expensive, and therefore more profitable for the industry.
The problem at this point, is that if you been magnesium deficient for that long, trying to rebuild your magnesium reserves will be difficult. It will have to be done slowly, and carefully. Magnesium is used as a cofactor to allow insulin to transport nutrients from the blood to the cells where they are needed, during meal digestion. This implies that even magnesium will not be properly absorbed and transported to the cells where it's needed, if a chronic magnesium deficiency has compromised the ability of insulin to transport nutrients properly. It will take a while for insulin to regain its ability to function normally, so that magnesium reserves can be slowly rebuilt. The body can only absorb limited amounts of magnesium at any given time, anyway, even when insulin is functioning normally. Therefore, magnesium supplements have to be divided up and taken with or after meals, during the day. Too much magnesium, or too much at one time, can cause diarrhea. Therefore, restoring magnesium reserves often requires a careful balancing act, because some of us are more sensitive to magnesium than others.
Also, please be aware that published medical research shows that budesonide becomes less effective every time a treatment is stopped, and then restarted. This implies that for most individuals, at some point, budesonide will eventually completely lose its effectiveness.
Re: the gluten-free diet. Treating microscopic colitis by diet changes requires that all food sensitivities must be removed from the diet, in order for dietary control to be effective. Removing some of them, won't usually bring remission — all food sensitivities must be removed from the diet. This means that all foods that are causing our immune system to produce antibodies against them must be eliminated from the diet. Also, any and all medications that might be causing our immune system to produce antibodies must be removed from the diet, before admission can be attained. For most of us, that means gluten, all dairy products, all products that include ingredients derived from soy or legumes, and for many of us, this list also includes chicken eggs. When we react for many years, we become sensitive to other foods, which may have to be minimized or avoided until remission can be achieved. The only laboratory in the world that is capable of accurately and consistently detecting food sensitivities, is EnteroLab, but their stool tests kits can be ordered from anywhere in the world, by phone, or over the Internet. Their test results are not essential for designing a recovery diet, but those results can greatly simplify designing a safe diet that will bring remission, because they can pinpoint exactly which foods are safe, and which foods are not, based on the stool sample submitted to them.
I hope some of this helps. 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: Presentation and looking for advice
Thanks, Tex for such a fast reply, every word of you helps.
I am aware of the dedication it takes, perseverance has never been a problem for me, we are used to suffering and waiting, however, being so lost and with no support on the medical side, it was impossible for me not to feel bad, unsure and scared about taking any decision on my own, I didn't see any clear path. That's why your wise opinion is so important to me, it helps on making things a little clearer.
I totally agree with you about the root of my initial problems. My diet was bad during my teenage years (few veggies), My workouts were hard and made me sweat a looooooot (something unbelievable, I never saw something similar) and I had frequent muscle cramps and tightness, then the sleep problems, anxiety... I got a perfect vicious cycle.
I've been taking Doctor's Best Magnesium consistently for several months now, one tablet with food, three times a day.
So, first of all, I want to start figuring out my priorities, I want to plan this and not fail again, to be confident about what I'm doing, and thus, to be able to be strong during tough moments of the process.
I think the most important here is to quit Fluvoxamine (SSRI) entirely, before thinking about quetiapine or mirtazapine, since those made improvements on my gut symptoms, and they are not SSRI ended. What do you think?
The other thing a see as a priority is to get Enterolab test, I've always thought that they didn't send it to Spain. This makes me wonder how is it possible that a stool specimen can travel all over the world without losing its validity. It has to be refrigerated, hasn't it? How much will that cost? I didn't hear any nearly similar experience from any members. Could you make this straight to me?
I don't know how Enterolab tests work, but I've been eating tons of chicken during a year but any beef, so, is this scenario valid before taking those tests? I mean, If I've not eaten gluten or beef at all for months, I'm not expecting to see any sensitivity to them, but it's just the opposite for chicken. Am I right?
By the way, does budesonide interfere with test results or alter them in some way?
Next doubt is a little difficult for me to explain, I'll try: Is it possible for SSRI to be the initial trigger for me and then, once there is an uncontrolled sensitivity, could this lead to more sensitivies? Does it make sense? Does MC/immune system work like this? What is the main trigger then, the first one, or all of them?
One last question. What's your point about trying mesalazine after this series of Budesonide, just to buy some time in between testing, quitting meds, etc? Does it worth it?
I am aware of the dedication it takes, perseverance has never been a problem for me, we are used to suffering and waiting, however, being so lost and with no support on the medical side, it was impossible for me not to feel bad, unsure and scared about taking any decision on my own, I didn't see any clear path. That's why your wise opinion is so important to me, it helps on making things a little clearer.
I totally agree with you about the root of my initial problems. My diet was bad during my teenage years (few veggies), My workouts were hard and made me sweat a looooooot (something unbelievable, I never saw something similar) and I had frequent muscle cramps and tightness, then the sleep problems, anxiety... I got a perfect vicious cycle.
I've been taking Doctor's Best Magnesium consistently for several months now, one tablet with food, three times a day.
So, first of all, I want to start figuring out my priorities, I want to plan this and not fail again, to be confident about what I'm doing, and thus, to be able to be strong during tough moments of the process.
I think the most important here is to quit Fluvoxamine (SSRI) entirely, before thinking about quetiapine or mirtazapine, since those made improvements on my gut symptoms, and they are not SSRI ended. What do you think?
The other thing a see as a priority is to get Enterolab test, I've always thought that they didn't send it to Spain. This makes me wonder how is it possible that a stool specimen can travel all over the world without losing its validity. It has to be refrigerated, hasn't it? How much will that cost? I didn't hear any nearly similar experience from any members. Could you make this straight to me?
I don't know how Enterolab tests work, but I've been eating tons of chicken during a year but any beef, so, is this scenario valid before taking those tests? I mean, If I've not eaten gluten or beef at all for months, I'm not expecting to see any sensitivity to them, but it's just the opposite for chicken. Am I right?
By the way, does budesonide interfere with test results or alter them in some way?
Next doubt is a little difficult for me to explain, I'll try: Is it possible for SSRI to be the initial trigger for me and then, once there is an uncontrolled sensitivity, could this lead to more sensitivies? Does it make sense? Does MC/immune system work like this? What is the main trigger then, the first one, or all of them?
One last question. What's your point about trying mesalazine after this series of Budesonide, just to buy some time in between testing, quitting meds, etc? Does it worth it?
Scientia potentia est
Re: Presentation and looking for advice
Yes, you must have confidence in your plan, because there will be good days and bad days, as your digestive system begins to heal. Look at your progress on a monthly basis, not a daily basis.David wrote:So, first of all, I want to start figuring out my priorities, I want to plan this and not fail again, to be confident about what I'm doing, and thus, to be able to be strong during tough moments of the process.
I agree. Data on quetiapine and mirtazapine, with regard to MC haven't been researched extensively, but SSRIs are clearly a problem for many MC patients.David wrote:I think the most important here is to quit Fluvoxamine (SSRI) entirely, before thinking about quetiapine or mirtazapine, since those made improvements on my gut symptoms, and they are not SSRI ended. What do you think?
EnteroLab will ship a sample collection kit directly to you, and you will collect the sample, freeze it, and return it by common carrier to the lab, using overnight express services. Don't worry about the sample spoiling during shipment. Stool samples don't spoil. If the delivery service doesn't get it to the lab soon enough, it will simply smell bad. That's their tough luck.David wrote:The other thing a see as a priority is to get Enterolab test, I've always thought that they didn't send it to Spain. This makes me wonder how is it possible that a stool specimen can travel all over the world without losing its validity. It has to be refrigerated, hasn't it? How much will that cost? I didn't hear any nearly similar experience from any members. Could you make this straight to me?
The lab recommends that you continue to eat what you're reading now, at least until you collect the sample.David wrote:I don't know how Enterolab tests work, but I've been eating tons of chicken during a year but any beef, so, is this scenario valid before taking those tests? I mean, If I've not eaten gluten or beef at all for months, I'm not expecting to see any sensitivity to them, but it's just the opposite for chicken. Am I right?
If you've been taking budesonide for half a year or better, it may have a slight effect on the test results. If you've been taking budesonide for a year or longer, it will almost surely have a significant effect on the results, and the tests may fail to detect some of the food sensitivities. It was sure false negative results, instead. Gluten antibodies can be detected up to a year after gluten is removed from the diet, but that's not true for most of the food sensitivities. If you want to be sure, either call the lab on the phone, or email them, with the details of your budesonide treatment, for an opinion on whether your budesonide treatment will affect the test results. The lab is located here in Texas, and in Texas, most businesses are able to communicate in either English or Spanish.David wrote:By the way, does budesonide interfere with test results or alter them in some way?
The answer to your question is not simple, so I'll copy a "canned" explanation below:David wrote:Next doubt is a little difficult for me to explain, I'll try: Is it possible for SSRI to be the initial trigger for me and then, once there is an uncontrolled sensitivity, could this lead to more sensitivies? Does it make sense? Does MC/immune system work like this? What is the main trigger then, the first one, or all of them?
Microscopic colitis (MC), once diagnosed, is a lifetime disease. The disease is caused by chronic inflammation. There are two ways the symptoms can be controlled.
1. Medications such as budesonide. Unfortunately, published medical research shows that 85% of patients who respond to budesonide, relapse soon after the treatment is ended. Therefore, medications are only temporary treatments. They only address the symptoms, not the cause of MC.
2. Diet changes that eliminate the foods that are causing the inflammation. This is the only known way to safely provide reliable, long-term control of the disease.
The disease is caused by chronic inflammation of the mucosal lining of the intestines, but in many cases, the inflammation can be found at any point in the digestive tract, from mouth to anus, including any and all organs in the digestive system. The initial inflammation can come from infection, parasites, stress, certain medications, and a few other things. But once the inflammation triggers the disease, then the disease tends to perpetuate itself, due to the food sensitivities that are created as a result of the inflammation. To stop the inflammation from recurring with each meal, we have to avoid every food, medication, and supplement that's causing our immune system to produce antibodies. MC, including collagenous colitis (CC), lymphocytic colitis (LC), and at least 10 other known types of the disease, is usually not caused by food sensitivities, but food sensitivities tend to develop after the disease begins. Research shows that when the genes that predispose to microscopic colitis are triggered, the genes that predispose to gluten sensitivity are also triggered. The molecules of which food is composed, are long chains of amino acids. Normally, proper digestion reduces those long chains of amino acids to individual amino acids, or short chains of them, so that our body can then use them as nutrition, or building materials for new cells.
Peptides are simply medium-length chains of amino acids that are the result of incomplete digestion of a food molecule. No one can completely digest gluten, for example. But usually that doesn't matter. It only matters if a person has increased intestinal permeability (commonly known as leaky gut). But gluten sensitivity can cause leaky gut and this can allow partially-digested peptides from certain foods to enter the bloodstream, which provokes an immune system response (because those peptides are obviously not supposed to be in the blood). The immune system then begins to react to certain proteins in those foods every time they are eaten, thus causing chronic inflammation . This is why some of the foods that we have been eating for most of our life can suddenly begin to cause chronic inflammation by provoking our immune system to produce antibodies against them. Believe it or not, all of us with this condition are sensitive to gluten, which means that we have to totally avoid all foods that contain wheat, rye, barley, and for most of us, also oats. About two-thirds of us a are also sensitive to cow's milk, which means that we have to avoid all dairy products. Over half of us are sensitive to soy and/or chicken eggs.
Similar to food sensitivities, certain drugs can also cause the immune system to produce antibodies that trigger MC symptoms. In some cases, just stopping the use of those drugs can bring remission of the MC symptoms. These drugs include antibiotics, NSAIDs, PPIs, SSRIs, SNRIs, statins, bisphosphonates, ACE inhibitors, beta blockers, and others. But in many cases, food sensitivities develop before the use of the drug is stopped, so the diet must also be changed in addition to avoiding the drug that causes the inflammation. But the bottom line is that if we stop the antibodies from being produced by avoiding the offending foods or drugs, then we can stop the inflammation from being produced and the symptoms will begin to fade away, as our digestive system heals. And the symptoms will stay away as long as we are very careful with our diet (and the medications we use).
There is no one-size-fits-all diet that will control the disease, but contrary to the claims of the medical "experts", virtually every MC patient is sensitive to gluten. For most, it's a form of non-celiac gluten sensitivity, so that the celiac screening tests used by doctors are worthless for detecting the type of gluten sensitivity that is typically associated with MC or other IBDs. But non-celiac gluten sensitivity causes basically the same symptoms as celiac disease. Every patient has to customize their diet to fit their own specific food sensitivities. And note that stress (whether physical, chemical, or mental/psychological) has a major effect on MC. Very intense stress, or in many cases, chronic stress. can even trigger a relapse of symptoms in many cases. Therefore it's also important to find ways to minimize stress, otherwise stress can perpetuate the symptoms.
Many, many doctors have mistakenly informed many, many MC patients that they are not sensitive to gluten based on a negative celiac blood test result. The claim that a negative celiac test result means that a patient cannot be sensitive to gluten simply is not true, because doctors have no way to officially diagnose non-celiac gluten sensitivity. A positive celiac test result can confirm gluten sensitivity, but a negative celiac test result cannot rule out gluten sensitivity. Many doctors mistakenly believe that a negative celic blood test result rules out gluten sensitivity, but there is no medical justification for making that assumption, it's simply incorrect.
in a nutshell, if taking an SSRI triggers microscopic colitis, then gluten sensitivity is also triggered, and this causes leaky gut, which leads to additional food sensitivities. The longer we react, usually, the more sensitive our immune system becomes, and the more food sensitivities we develop.
Mesalazine is an old treatment that's usually slow to work, and not very effective for most MC patients. Budesonide is the medical treatment of choice. It's doubtful that you will derive much benefit from mesalazine.David wrote:One last question. What's your point about trying mesalazine after this series of Budesonide, just to buy some time in between testing, quitting meds, etc? Does it worth it?
I hope this helps.
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: Presentation and looking for advice
First things first: I'm going to start planning the withdrawal of SSRI. I have the support from my family and can plan a session with my therapist. Your words and the other member's experiences give me something real to base my decision on.
About Enterolab, since I'm in the middle of budesonide treatment I prefer just to finish it and go for the test with all the guarantees. Anyway, I'm going to ask them about my doubts.
I have to research the time needed for the antidepressant withdrawal, being very conservative. I think I remember some member mentioned Kelly Brogan, I'll look at her work.
The problem with the health care system, at least in Spain, is that if a ask a GI specialist about SSRI and colitis, they say: ask your psychiatrist. But if ask the psychiatrist about colitis they say, ask your Gi...
That so, I am without any communication between "body parts", I feel abandoned. The current health care system is, many times, a little nonsense and useless.
I wonder if at some moment MC will be better understood by everyone.
Thanks for everything again, Tex.
I'll post updates about my process, because, in the end, information and real experiences are the most valuable thing for everyone in this situation and that could be helpful to other members.
Ah, I forgot it, what do you think about the meta-analysis? and what about serotonin in the gut, with higher levels seem in all IBD. I want to understand (roughly) the link between both and the mechanism why SSRI result harmful to the digestive system, specially in the long term, I find this very interesting.
About Enterolab, since I'm in the middle of budesonide treatment I prefer just to finish it and go for the test with all the guarantees. Anyway, I'm going to ask them about my doubts.
I have to research the time needed for the antidepressant withdrawal, being very conservative. I think I remember some member mentioned Kelly Brogan, I'll look at her work.
The problem with the health care system, at least in Spain, is that if a ask a GI specialist about SSRI and colitis, they say: ask your psychiatrist. But if ask the psychiatrist about colitis they say, ask your Gi...
That so, I am without any communication between "body parts", I feel abandoned. The current health care system is, many times, a little nonsense and useless.
I wonder if at some moment MC will be better understood by everyone.
Thanks for everything again, Tex.
I'll post updates about my process, because, in the end, information and real experiences are the most valuable thing for everyone in this situation and that could be helpful to other members.
Ah, I forgot it, what do you think about the meta-analysis? and what about serotonin in the gut, with higher levels seem in all IBD. I want to understand (roughly) the link between both and the mechanism why SSRI result harmful to the digestive system, specially in the long term, I find this very interesting.
Scientia potentia est
Re: Presentation and looking for advice
David,
When it comes to understanding, and successfully treating MC, most gastroenterologists in the US are no more helpful than those in Spain. They won't admit that they don't understand the disease, but their advice is only occasionally helpful. That said, there are a few gastroenterologists scattered here and there at various medical facilities, who do have a better understanding of the disease than most of their peers. Most of the members of this forum understand MC, and how to control it, better than many gastroenterologists.
That meta-analysis matches other studies that I've seen, and agrees with my opinions of those medications.
Tex
When it comes to understanding, and successfully treating MC, most gastroenterologists in the US are no more helpful than those in Spain. They won't admit that they don't understand the disease, but their advice is only occasionally helpful. That said, there are a few gastroenterologists scattered here and there at various medical facilities, who do have a better understanding of the disease than most of their peers. Most of the members of this forum understand MC, and how to control it, better than many gastroenterologists.
That meta-analysis matches other studies that I've seen, and agrees with my opinions of those medications.
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: Presentation and looking for advice
Hello everyone,
This is an update of my journey.
I've been tappering fluvoxamine (SSRI) from 100mg to 75mg during 4 weeks. So far so good...
I continue with Budesonide 9mg and doctor has added Colestyramine, and I think it´s doing well on me.
I'm thinking of extending 9mg another 4 weeks, since the medicine prescripcion is already loaded on my profile, I can do that.
Would be advisable? You always say that doctors usually prescribe 4 weeks and it's not enough time.
Apart from that I've continued suffering from itching and being unable to eat anything with histamine (same story during last 2 years).
But I have a question, how is it posible if my blood analysis says that serum DAO levels are at the maximum possible: 83HDU/mL.
I guess there's something I don't understand. Maybe DAO serum levels don't correlate with intestinal ones?
Or is there something more here?
Thanks a lot as usual!
This is an update of my journey.
I've been tappering fluvoxamine (SSRI) from 100mg to 75mg during 4 weeks. So far so good...
I continue with Budesonide 9mg and doctor has added Colestyramine, and I think it´s doing well on me.
I'm thinking of extending 9mg another 4 weeks, since the medicine prescripcion is already loaded on my profile, I can do that.
Would be advisable? You always say that doctors usually prescribe 4 weeks and it's not enough time.
Apart from that I've continued suffering from itching and being unable to eat anything with histamine (same story during last 2 years).
But I have a question, how is it posible if my blood analysis says that serum DAO levels are at the maximum possible: 83HDU/mL.
I guess there's something I don't understand. Maybe DAO serum levels don't correlate with intestinal ones?
Or is there something more here?
Thanks a lot as usual!
Scientia potentia est
- Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
Re: Presentation and looking for advice
Regarding how long to take the budesonide - listen to your body
there is no exact time frame that suits everybody. once you start to have constipation type bowel motions that is the time to start to taper the dosage
regarding the histamine - B6 and magnesium are essential for managing histamine levels in the body
zinc and Vit C also help
medications deplete magnesium in the body, are you taking Vit D3 and magnesium?
there is no exact time frame that suits everybody. once you start to have constipation type bowel motions that is the time to start to taper the dosage
regarding the histamine - B6 and magnesium are essential for managing histamine levels in the body
zinc and Vit C also help
medications deplete magnesium in the body, are you taking Vit D3 and 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
Re: Presentation and looking for advice
I might add that the DAO isn't the last word in histamine tolerance regulation. There are other enzymes involved. In my own situation, I find that during pollen season, for example I have to watch my histamine intake much more carefully, and keep it at a lower level. Elevated skin temperatures, as a result of a hot shower, or a vigorous exercise session, tend to make my itching significantly worse.
Gabes is quite correct about the association between magnesium deficiency and histamine levels. Consider the article at the following link, for example:
https://pubmed.ncbi.nlm.nih.gov/3111814/
Tex
Gabes is quite correct about the association between magnesium deficiency and histamine levels. Consider the article at the following link, for example:
https://pubmed.ncbi.nlm.nih.gov/3111814/
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: Presentation and looking for advice
Thanks Gabe, for the recommendation about budesonide, I'm near to that moment.
Regarding the histamine I'm taking 5000U of vitaminc D and 300mg of magnesium glycinate (Doctor's Best) divided on three meals, and three days ago I also started 500mg liposomal vit C.
During following days I also will add 25mg of zinc with the correct proportion with copper.
However, if I understand, these nutrients are always quoted for supporting DAO production, but levels of mine are totally fine.
As you say Tex, my worst time is during pollen season.
So I can only make two hypotesis:
- Whether I'm producing way too much histamine (so there is not enough DAO)
- Or the other enzyme in charge of histamine degradation, HNMT, is deficient.
Am I wrong? Any other idea?
You've mentioned several times that one of the corticoids's mechanisims is suppression of mast cells.
Given the facts: mirtazapine did wonders on me, and your mention of cromoglycate in your book, Is is worth the try it?
By the way, Gabes, I knew I read something from you in the past. Does this post continue being valid nowadays? https://www.perskyfarms.com/phpBB/viewt ... p?p=187611
Regarding the histamine I'm taking 5000U of vitaminc D and 300mg of magnesium glycinate (Doctor's Best) divided on three meals, and three days ago I also started 500mg liposomal vit C.
During following days I also will add 25mg of zinc with the correct proportion with copper.
However, if I understand, these nutrients are always quoted for supporting DAO production, but levels of mine are totally fine.
As you say Tex, my worst time is during pollen season.
So I can only make two hypotesis:
- Whether I'm producing way too much histamine (so there is not enough DAO)
- Or the other enzyme in charge of histamine degradation, HNMT, is deficient.
Am I wrong? Any other idea?
You've mentioned several times that one of the corticoids's mechanisims is suppression of mast cells.
Given the facts: mirtazapine did wonders on me, and your mention of cromoglycate in your book, Is is worth the try it?
By the way, Gabes, I knew I read something from you in the past. Does this post continue being valid nowadays? https://www.perskyfarms.com/phpBB/viewt ... p?p=187611
Scientia potentia est
Re: Presentation and looking for advice
I believe you're correct. Cromoglycate helps in some cases, but since we're all different, many people do not see any benefit from it.
I find that if I use a DAO supplement regularly, it doesn't take very many months before it begins to cause the very symptoms that it's supposed to prevent. That's true of H2 antihistamines, also, for virtually all of us, so I suspect that this applies to most medications and supplements in this category, and most likely, it applies to many medications in other categories, as well. They are typically only effective on a short-term basis, and eventually the immune system begins to initiate a reaction against them, compounding the original problem. This even happens with medications in the biologicals class, also. The best thing I ever did for my histamine problem was to stop taking a DAO supplement.
Tex
I find that if I use a DAO supplement regularly, it doesn't take very many months before it begins to cause the very symptoms that it's supposed to prevent. That's true of H2 antihistamines, also, for virtually all of us, so I suspect that this applies to most medications and supplements in this category, and most likely, it applies to many medications in other categories, as well. They are typically only effective on a short-term basis, and eventually the immune system begins to initiate a reaction against them, compounding the original problem. This even happens with medications in the biologicals class, also. The best thing I ever did for my histamine problem was to stop taking a DAO supplement.
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: Presentation and looking for advice
Omg, that's very interesting.
So is it feasible to be reacting to H1 and DAO... I didn't know that.
Did you experience histamine reactions as consequence of taking DAO supplement? How is that possible? Isn't it an enzyme already present in the body, targeted to degrade histamine?
So I understand that you lessened your itching and all histamine symptoms only thanks to VitC,Mg,Zn,Cu and low histamine diet?
How long did it take to you applying this approach?
So is it feasible to be reacting to H1 and DAO... I didn't know that.
Did you experience histamine reactions as consequence of taking DAO supplement? How is that possible? Isn't it an enzyme already present in the body, targeted to degrade histamine?
So I understand that you lessened your itching and all histamine symptoms only thanks to VitC,Mg,Zn,Cu and low histamine diet?
How long did it take to you applying this approach?
Scientia potentia est
- Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
Re: Presentation and looking for advice
I resolved life long allergy issues once I fixed nutritional deficiencies and followed low inflammation lifestyle (eating and lifestyle)
for first 40 years of my life - horses and cats would cause asthma attacks, hives, runny nose etc
I could not walk into a house that had a cat
now I own one!
It took me about 6-9 months to correct nutritional deficiencies that I no longer reacted to previous chronic triggers
B6 - via P5P
Magnesium
Vit C
Zinc
Vit D3
these days, if I start to have mild symptoms I increase P5P and magnesium
https://mthfrsupport.com.au/2016/09/dao ... onnection/
Vitamin C is well-known for its antihistaminic working. In a lot of cases, blood histamine levels are directly correlated to the vitamin C levels, and intake of vitamin C will lead to less histamine in a matter of days. It functions as a cofactor of DAO, just like vitamin B6 does. Vitamin C can be taken at doses of up to 3,000 mg to reduce histamine levels. Taking large amount of vitamin C is known as Megadosing.
DAO depends on vitamin B6 to function. If there is shortage of B6, the enzyme is practically useless. The intake of vitamin B6 often leads to a higher DAO activity. According to the NIH, doses of up to 2 mg should suffice for lactating mothers.
Magnesium is important in the histamine metabolism. A shortage increases the activity of histidine decarboxylase in some tissues. Histidine decarboxylase is the enzyme that makes histamine from histidine. While at the same time, a lack of magnesium intake leads to reduced DAO. The NIH recommends doses of up to 400 mg and Magnesium can be bought over the counter as 500 mg tablets.
Copper is another cofactor of DAO and able to reduce histamine levels. It’s not often recommended to supplement.
Zinc inhibits the release of histamine from mast cells. Supplementation is recommended.
for first 40 years of my life - horses and cats would cause asthma attacks, hives, runny nose etc
I could not walk into a house that had a cat
now I own one!
It took me about 6-9 months to correct nutritional deficiencies that I no longer reacted to previous chronic triggers
B6 - via P5P
Magnesium
Vit C
Zinc
Vit D3
these days, if I start to have mild symptoms I increase P5P and magnesium
https://mthfrsupport.com.au/2016/09/dao ... onnection/
Vitamin C is well-known for its antihistaminic working. In a lot of cases, blood histamine levels are directly correlated to the vitamin C levels, and intake of vitamin C will lead to less histamine in a matter of days. It functions as a cofactor of DAO, just like vitamin B6 does. Vitamin C can be taken at doses of up to 3,000 mg to reduce histamine levels. Taking large amount of vitamin C is known as Megadosing.
DAO depends on vitamin B6 to function. If there is shortage of B6, the enzyme is practically useless. The intake of vitamin B6 often leads to a higher DAO activity. According to the NIH, doses of up to 2 mg should suffice for lactating mothers.
Magnesium is important in the histamine metabolism. A shortage increases the activity of histidine decarboxylase in some tissues. Histidine decarboxylase is the enzyme that makes histamine from histidine. While at the same time, a lack of magnesium intake leads to reduced DAO. The NIH recommends doses of up to 400 mg and Magnesium can be bought over the counter as 500 mg tablets.
Copper is another cofactor of DAO and able to reduce histamine levels. It’s not often recommended to supplement.
Zinc inhibits the release of histamine from mast cells. Supplementation is recommended.
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
Re: Presentation and looking for advice
I agree with Gabe's post, but despite taking all the supplements and eating no high histamine foods, I continued to react (itch) every day, until I stopped taking the DAO supplement. The reason we can react to enzyme supplements such as that is because even though they mimic natural body enzymes, they're not identical, and the immune system detects that difference, and doesn't appreciate it. After a while, it begins to react against that supplement.
I take the vitamins and minerals that Gabes is recommending in her post (every day), but even so, it took a few weeks or so after stopping the DAO supplement for the high histamine symptoms to fade away.
Tex
I take the vitamins and minerals that Gabes is recommending in her post (every day), but even so, it took a few weeks or so after stopping the DAO supplement for the high histamine symptoms to fade away.
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: Presentation and looking for advice
Hi,
Continuing with the histamine topic, I want to explain something that makes doctors look at me like if I were crazy. But for sure this community will undestand:
Anything that causes fermentation in my colon equals pain in my joints and tendons. And evacuation reliefs that pain. Even being currently on budesonide, no diahrrea at all, when I eat cauliflower, brocoli, or kale, my body aches and itches.
Note that gas production levels are totally normal and I can handle them without any problem.
Could I being reacting to my own microbiota?
Notes:
- I don´t have SIBO, Candida or any other parasite.
- Rifaximine did relief me in the past
- Probiotics (even low histamine) hurt me in the past
This is a mast cell problem? I think they are too picky... xD
Connecting with your recommendations, I guess if mast cells are releasing too much histamine, even normal levels of DAO aren't enough. So I believe that, for my case, the stabilization issue is very important, do you guys agree? I think both of you are going on that direction, aren't you?
Gabe, you pointed that Vit C, Mg, Zn, Cu, Mn and b6 have a stabilization role. What are your current recommendations about quantities? I think I read about huge Mg doses.
I'm confused because any of my blood analysis have ever shown any deficiencies on B group, Zn or Cu... Do you recommend b6 any way?
Another point is that I'm taking cholestyramine now, and I don't know which is the best posology, since doctor doesn't take into account the rest of the medicines or vitamins, and because It interferes with vit D or K absortion (maybe Mg also).
Right now I take 4g of Cholestyramine with breakfast and 4g during dinner, so I moved vitamin D to the midday meal and antidepressants 1.5h before breakfast. I bought dermal magnesium but I don't know how this translates to mg absorbed.
Thanks so much and sorry for such a long text.
Continuing with the histamine topic, I want to explain something that makes doctors look at me like if I were crazy. But for sure this community will undestand:
Anything that causes fermentation in my colon equals pain in my joints and tendons. And evacuation reliefs that pain. Even being currently on budesonide, no diahrrea at all, when I eat cauliflower, brocoli, or kale, my body aches and itches.
Note that gas production levels are totally normal and I can handle them without any problem.
Could I being reacting to my own microbiota?
Notes:
- I don´t have SIBO, Candida or any other parasite.
- Rifaximine did relief me in the past
- Probiotics (even low histamine) hurt me in the past
This is a mast cell problem? I think they are too picky... xD
Connecting with your recommendations, I guess if mast cells are releasing too much histamine, even normal levels of DAO aren't enough. So I believe that, for my case, the stabilization issue is very important, do you guys agree? I think both of you are going on that direction, aren't you?
Gabe, you pointed that Vit C, Mg, Zn, Cu, Mn and b6 have a stabilization role. What are your current recommendations about quantities? I think I read about huge Mg doses.
I'm confused because any of my blood analysis have ever shown any deficiencies on B group, Zn or Cu... Do you recommend b6 any way?
Another point is that I'm taking cholestyramine now, and I don't know which is the best posology, since doctor doesn't take into account the rest of the medicines or vitamins, and because It interferes with vit D or K absortion (maybe Mg also).
Right now I take 4g of Cholestyramine with breakfast and 4g during dinner, so I moved vitamin D to the midday meal and antidepressants 1.5h before breakfast. I bought dermal magnesium but I don't know how this translates to mg absorbed.
Thanks so much and sorry for such a long text.
Scientia potentia est