There is such a great plethora of information in here that it's really hard to digest it all. Last summer I found out that my B12 and my B6 were quite high because of supplements I had been taking. My doctor who treats holistically said that I probably was not overdosed on vitamin B but I was having a problem with the methylation. Also my homocysteine was high. I am now taking L5MTHF. I was interested in reading about the Metanx. It seems that that would be a very good thing for me to do. I have also increased the amount of vitamin D I am taking. However I am wondering if I possibly could get too much vitamin D because twice a week I take treatments in the UVB light booth for my CTCL.
I am still struggling with the PPI. I have tried a couple times to go off of it but I just cannot stand the acid reflux. I do have a hiatal hernia. I have probably had the MC for most of my life but doctors called it IBS or spastic colon. It wasn't until I have the colonoscopy in 2006 that I found out I had microscopic collagenous colitis. And at that time the G.I. doctor did not even tell me about it. It was two years later that I saw the report and he said it didn't matter what I ate! (Familiar story!). I have been on some type of antacid since I was a teenager and that's been a long time! My brother and my dad also had heartburn so it was probably one of those gene mutations. I went gluten-free in 2008 when I did find out the results and it was through this forum that I found out about the testing at Enterolab. I would really like to be able to get off of the PPI but I just don't know how to do it. I'm thinking that I should do some more testing for food allergies. It is getting harder and harder to eat out because I don't know what I can eat anymore.
I am so thankful for all the wonderful people on this forum!
Jean
Recently diagnosed with MC
Moderators: Rosie, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Vitamins D and B
You might think you understood what I said but what you don't realize is that what I said was not what I meant!
Hi Jean,
Yes, we've accumulated a lot of data in the almost 10 years this board has been active. As you are probably aware, I've been taking Metanx (or the equivalent) for over 5 years now. A few weeks ago my doctor offered to check my vitamin D, B-12, and folate levels (along with other tests). All three results were above the normal range, and because the normal range is apparently the limit of their tests, the lab didn't even show numeric results for them. They simply noted that the results were too high to test. I asked him if I should lower my dosage to bring those numbers down, but he didn't see any problem with them.
But I also requested a homocysteine test, and fortunately the result was normal. If that result had been high, then obviously my high folate level would have been an issue. The problem for those of us who have methylation issues is that so many processed foods have added folate. So if we can't properly methylate folate, it tends to build up and cause high homocysteine problems. IOW, we not only need to use methylfolate, but we need to decrease our intake of folate, so that it doesn't continue to accumulate and lead to an increase in our homocysteine level. Added folate is displayed on labels, so it's possible to figure out where most of it is coming from.
Since it's possible for an extremely high (over150 ng/mL) vitamin D level to cause hypercalcemia issues, I've ordered a vitamin D test kit from ZRT Labs (affiliated with the Vitamin D Council) so that I can hopefully get an actual number. Also, when the blood draw for the tests my doctor ordered was done, I was dehydrated (because it was a fasting test, and we were trying to pinpoint an issue that was causing me to become dehydrated during the night, despite drinking plenty of water during the day). I have a hunch that blood samples drawn during a condition of dehydration may yield exaggerated test results in some cases. So I'm going to check my vitamin D level to make sure that it's actually that high, because last October, the level was 55 ng/mL.
Since you are taking UVB light treatments, you might indeed be getting plenty of vitamin D from those treatments. I would have my vitamin D level tested, if I were in that situation (IOW if I were also taking an oral vitamin D supplement). It's impossible to get too much vitamin D from UBV exposure, but it is possible to get too much from oral supplements.
Discontinuing the use of a PPI after years of use is almost impossible, because of the rebound reflux effect that they cause. However, many people are able to wean off by substituting an H2 blocker for the PPI. Before PPIs were approved for use, H2 blockers were the treatment of choice. The main reasons why PPIs took over that market is because they are somewhat more effective than H2 blockers, and while H2 blockers have to be taken several times each day (because their effect lasts for only a few hours), PPIs continue to have a blocking action on acid production in the stomach that lasts for up to 3 days (so they can be conveniently taken once each day, rather than several times each day). Unfortunately, over long-term use, they tend to cause permanent changes in the cellular characteristics of the parietal cells of the stomach. Discontinuation of PPI use can reverse most of these changes in most cases, but often not all of the changes are completely reversible. The good news is that the remaining damage does not seem to cause any problems for most people, and digestion usually returns to normal, for all practical purposes.
H2 blockers (as you are probably aware) include products such as Zantac, Tagamet, and Pepcid. There are various versions of them available, and some have different strength levels, but as far as I am aware, their use provides the only practical way to wean off PPIs after long-term use. Most people who are able to do this are also eventually able to wean off the H2 blockers, also, after their lower esophageal sphincter has at least a few months to regain some of it's original muscle tone (clamping strength). IOW, the reason why PPIs are so hard to discontinue is because their use weakens the lower esophageal sphincter, and that virtually guarantees that a patient will have acid reflux problems. But the lower esophageal sphincter will slowly strengthen, after PPIs are discontinued, and as it gets stronger, it will eventually be able to hold back stomach acid effectively once again.
One of the reasons why you are having problems finding foods that you can safely eat is probably due to the effectiveness of PPIs at preventing the production of stomach acid. Without adequate stomach acid, it's impossible to digest food normally, because the first step in the process is compromised due to low stomach acid. Stomach acid is essential for beginning the digestive process. As you wean off the PPI you will notice your digestion improving, and eventually it will be much easier to digest a wider variety of foods. It won't happen overnight (because healing the damage that PPIs cause usually takes months), but eventually your digestion will recover as the damage heals.
I hope that some of this is helpful.
You're most welcome,
Tex
Yes, we've accumulated a lot of data in the almost 10 years this board has been active. As you are probably aware, I've been taking Metanx (or the equivalent) for over 5 years now. A few weeks ago my doctor offered to check my vitamin D, B-12, and folate levels (along with other tests). All three results were above the normal range, and because the normal range is apparently the limit of their tests, the lab didn't even show numeric results for them. They simply noted that the results were too high to test. I asked him if I should lower my dosage to bring those numbers down, but he didn't see any problem with them.
But I also requested a homocysteine test, and fortunately the result was normal. If that result had been high, then obviously my high folate level would have been an issue. The problem for those of us who have methylation issues is that so many processed foods have added folate. So if we can't properly methylate folate, it tends to build up and cause high homocysteine problems. IOW, we not only need to use methylfolate, but we need to decrease our intake of folate, so that it doesn't continue to accumulate and lead to an increase in our homocysteine level. Added folate is displayed on labels, so it's possible to figure out where most of it is coming from.
Since it's possible for an extremely high (over150 ng/mL) vitamin D level to cause hypercalcemia issues, I've ordered a vitamin D test kit from ZRT Labs (affiliated with the Vitamin D Council) so that I can hopefully get an actual number. Also, when the blood draw for the tests my doctor ordered was done, I was dehydrated (because it was a fasting test, and we were trying to pinpoint an issue that was causing me to become dehydrated during the night, despite drinking plenty of water during the day). I have a hunch that blood samples drawn during a condition of dehydration may yield exaggerated test results in some cases. So I'm going to check my vitamin D level to make sure that it's actually that high, because last October, the level was 55 ng/mL.
Since you are taking UVB light treatments, you might indeed be getting plenty of vitamin D from those treatments. I would have my vitamin D level tested, if I were in that situation (IOW if I were also taking an oral vitamin D supplement). It's impossible to get too much vitamin D from UBV exposure, but it is possible to get too much from oral supplements.
Discontinuing the use of a PPI after years of use is almost impossible, because of the rebound reflux effect that they cause. However, many people are able to wean off by substituting an H2 blocker for the PPI. Before PPIs were approved for use, H2 blockers were the treatment of choice. The main reasons why PPIs took over that market is because they are somewhat more effective than H2 blockers, and while H2 blockers have to be taken several times each day (because their effect lasts for only a few hours), PPIs continue to have a blocking action on acid production in the stomach that lasts for up to 3 days (so they can be conveniently taken once each day, rather than several times each day). Unfortunately, over long-term use, they tend to cause permanent changes in the cellular characteristics of the parietal cells of the stomach. Discontinuation of PPI use can reverse most of these changes in most cases, but often not all of the changes are completely reversible. The good news is that the remaining damage does not seem to cause any problems for most people, and digestion usually returns to normal, for all practical purposes.
H2 blockers (as you are probably aware) include products such as Zantac, Tagamet, and Pepcid. There are various versions of them available, and some have different strength levels, but as far as I am aware, their use provides the only practical way to wean off PPIs after long-term use. Most people who are able to do this are also eventually able to wean off the H2 blockers, also, after their lower esophageal sphincter has at least a few months to regain some of it's original muscle tone (clamping strength). IOW, the reason why PPIs are so hard to discontinue is because their use weakens the lower esophageal sphincter, and that virtually guarantees that a patient will have acid reflux problems. But the lower esophageal sphincter will slowly strengthen, after PPIs are discontinued, and as it gets stronger, it will eventually be able to hold back stomach acid effectively once again.
One of the reasons why you are having problems finding foods that you can safely eat is probably due to the effectiveness of PPIs at preventing the production of stomach acid. Without adequate stomach acid, it's impossible to digest food normally, because the first step in the process is compromised due to low stomach acid. Stomach acid is essential for beginning the digestive process. As you wean off the PPI you will notice your digestion improving, and eventually it will be much easier to digest a wider variety of foods. It won't happen overnight (because healing the damage that PPIs cause usually takes months), but eventually your digestion will recover as the damage heals.
I hope that some of this is helpful.
You're most 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.
Itamins D and B
Tex,
In regard to the vitamin D, I am taking between 5000 and 7000 IU daily. That is in oral tablets plus whatever I get from the UVB light box. I asked my dermatologist about it and she thought it would be really difficult to tell. I had been up to about 11 minutes twice a week and then I was off of it for a while so now they had to start me over again and I am up to about 4 1/2 minutes twice a week. So I think the best thing I can do is get that tested.
As far is the PPI is concerned when I went off of it a few years ago I immediately started taking ranitidine and that did not help me at all. I ended up going right back on the omeprazole. I really wish that I could go off of the PPI but I'm just not sure how to do it. I have been on so many medications for a lot of years and I don't like it at all. When I told my doctor that I had so much trouble when I went off of the Pantoprazole this last time she told me I should probably go back on it because she's more concerned about the reflux and my esophagus. Perhaps I should try to wean off of the pantoprazole by taking it every other day for a while but I'm not sure if that would work. Sometimes after I take my meds and some of the supplements I feel like I have a touch of heartburn and I'm not sure which pill is doing it.
You certainly have had more than your share of problems!
Blessings!
Jean
In regard to the vitamin D, I am taking between 5000 and 7000 IU daily. That is in oral tablets plus whatever I get from the UVB light box. I asked my dermatologist about it and she thought it would be really difficult to tell. I had been up to about 11 minutes twice a week and then I was off of it for a while so now they had to start me over again and I am up to about 4 1/2 minutes twice a week. So I think the best thing I can do is get that tested.
As far is the PPI is concerned when I went off of it a few years ago I immediately started taking ranitidine and that did not help me at all. I ended up going right back on the omeprazole. I really wish that I could go off of the PPI but I'm just not sure how to do it. I have been on so many medications for a lot of years and I don't like it at all. When I told my doctor that I had so much trouble when I went off of the Pantoprazole this last time she told me I should probably go back on it because she's more concerned about the reflux and my esophagus. Perhaps I should try to wean off of the pantoprazole by taking it every other day for a while but I'm not sure if that would work. Sometimes after I take my meds and some of the supplements I feel like I have a touch of heartburn and I'm not sure which pill is doing it.
You certainly have had more than your share of problems!
Blessings!
Jean
You might think you understood what I said but what you don't realize is that what I said was not what I meant!
Tex,tex wrote:Hi Jean,
Yes, we've accumulated a lot of data in the almost 10 years this board has been active. As you are probably aware, I've been taking Metanx (or the equivalent) for over 5 years now. A few weeks ago my doctor offered to check my vitamin D, B-12, and folate levels (along with other tests). All three results were above the normal range, and because the normal range is apparently the limit of their tests, the lab didn't even show numeric results for them. They simply noted that the results were too high to test. I asked him if I should lower my dosage to bring those numbers down, but he didn't see any problem with them.
But I also requested a homocysteine test, and fortunately the result was normal. If that result had been high, then obviously my high folate level would have been an issue. The problem for those of us who have methylation issues is that so many processed foods have added folate. So if we can't properly methylate folate, it tends to build up and cause high homocysteine problems. IOW, we not only need to use methylfolate, but we need to decrease our intake of folate, so that it doesn't continue to accumulate and lead to an increase in our homocysteine level. Added folate is displayed on labels, so it's possible to figure out where most of it is coming from.
Since it's possible for an extremely high (over150 ng/mL) vitamin D level to cause hypercalcemia issues, I've ordered a vitamin D test kit from ZRT Labs (affiliated with the Vitamin D Council) so that I can hopefully get an actual number. Also, when the blood draw for the tests my doctor ordered was done, I was dehydrated (because it was a fasting test, and we were trying to pinpoint an issue that was causing me to become dehydrated during the night, despite drinking plenty of water during the day). I have a hunch that blood samples drawn during a condition of dehydration may yield exaggerated test results in some cases. So I'm going to check my vitamin D level to make sure that it's actually that high, because last October, the level was 55 ng/mL.
Since you are taking UVB light treatments, you might indeed be getting plenty of vitamin D from those treatments. I would have my vitamin D level tested, if I were in that situation (IOW if I were also taking an oral vitamin D supplement). It's impossible to get too much vitamin D from UBV exposure, but it is possible to get too much from oral supplements.
Discontinuing the use of a PPI after years of use is almost impossible, because of the rebound reflux effect that they cause. However, many people are able to wean off by substituting an H2 blocker for the PPI. Before PPIs were approved for use, H2 blockers were the treatment of choice. The main reasons why PPIs took over that market is because they are somewhat more effective than H2 blockers, and while H2 blockers have to be taken several times each day (because their effect lasts for only a few hours), PPIs continue to have a blocking action on acid production in the stomach that lasts for up to 3 days (so they can be conveniently taken once each day, rather than several times each day). Unfortunately, over long-term use, they tend to cause permanent changes in the cellular characteristics of the parietal cells of the stomach. Discontinuation of PPI use can reverse most of these changes in most cases, but often not all of the changes are completely reversible. The good news is that the remaining damage does not seem to cause any problems for most people, and digestion usually returns to normal, for all practical purposes.
H2 blockers (as you are probably aware) include products such as Zantac, Tagamet, and Pepcid. There are various versions of them available, and some have different strength levels, but as far as I am aware, their use provides the only practical way to wean off PPIs after long-term use. Most people who are able to do this are also eventually able to wean off the H2 blockers, also, after their lower esophageal sphincter has at least a few months to regain some of it's original muscle tone (clamping strength). IOW, the reason why PPIs are so hard to discontinue is because their use weakens the lower esophageal sphincter, and that virtually guarantees that a patient will have acid reflux problems. But the lower esophageal sphincter will slowly strengthen, after PPIs are discontinued, and as it gets stronger, it will eventually be able to hold back stomach acid effectively once again.
One of the reasons why you are having problems finding foods that you can safely eat is probably due to the effectiveness of PPIs at preventing the production of stomach acid. Without adequate stomach acid, it's impossible to digest food normally, because the first step in the process is compromised due to low stomach acid. Stomach acid is essential for beginning the digestive process. As you wean off the PPI you will notice your digestion improving, and eventually it will be much easier to digest a wider variety of foods. It won't happen overnight (because healing the damage that PPIs cause usually takes months), but eventually your digestion will recover as the damage heals.
I hope that some of this is helpful.
You're most welcome,
Tex
I have saved your comment as a Word document. It's very useful! Especially what you say about the homocysteine, and the fact that tests taken after fasting may give a wrong picture.
I have the same problem with being so thirsty during night, I usually have to get up and drink 2-3 times. I wonder why, since I drink a lot during the day, and not only plain water but 50/50 of water and orange juice together with a pinch of unrefined/unbleached sea salt (to make some sort of an electrolyte drink). Maybe it's the Entocort that makes me so thirsty?
Thank you Tex, you're worth your weight in gold (directly translated)
Lilia
Collagenous Colitis diagnosis in 2010
Psoriasis in 1973, symptom free in 2014
GF, CF and SF free since April, 2013
Psoriasis in 1973, symptom free in 2014
GF, CF and SF free since April, 2013
Jean,
I don't know enough about the physical changes that occur when weaning off a PPI to know if slowly reducing the dose would help or not. It continues to have an effect for up to 3 days, but presumably the effect should be reduced each day. If that's the case, then slowly reducing the doses by skipping a day (or 2, after a while) should make it easier to wean off, but as you are well aware, PPIs create a very powerful dependency. And the longer they are used, the tougher it is to wean off them.
Yes, I had a lot of minor issues, but fortunately none that were debilitating. They reminded me of the way that many GI specialists view MC — as a nuisance, but nothing serious.
Tex
I don't know enough about the physical changes that occur when weaning off a PPI to know if slowly reducing the dose would help or not. It continues to have an effect for up to 3 days, but presumably the effect should be reduced each day. If that's the case, then slowly reducing the doses by skipping a day (or 2, after a while) should make it easier to wean off, but as you are well aware, PPIs create a very powerful dependency. And the longer they are used, the tougher it is to wean off them.
Yes, I had a lot of minor issues, but fortunately none that were debilitating. They reminded me of the way that many GI specialists view MC — as a nuisance, but nothing serious.
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.
Lilia,
I was concerned that I might be developing diabetes, since excessive/frequent thirst is a symptom of diabetes. So I was relieved to see that it is also a symptom of hyperthyroidism or overtreated hypothyroidism. If your fasting blood glucose level is in the normal range though, then diabetes is not causing your thirst. Imbalances of other hormones can also cause this problem, but the problem might still be due to the thyroid, because the thyroid controls the production of many other hormones.
And thank you for your kind words.
Tex
I was concerned that I might be developing diabetes, since excessive/frequent thirst is a symptom of diabetes. So I was relieved to see that it is also a symptom of hyperthyroidism or overtreated hypothyroidism. If your fasting blood glucose level is in the normal range though, then diabetes is not causing your thirst. Imbalances of other hormones can also cause this problem, but the problem might still be due to the thyroid, because the thyroid controls the production of many other hormones.
And thank you for your kind words.
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.