Hello!
I was diagnosed with LC in August, and found this wonderful group in October. I got great advice and was feeling very good by mid December following a gluten, soy, dairy, corn and sugar free diet. I was able to eat some veggies, a lot of protein, fat and a little bit of fruit with no D.
In mid January I had a bad flare (after my first meal out in six months, a "gluten free" restaurant where I only ate a steak), watery D. that took a long time to resolve, even eating only turkey, chicken broth and rice. It did get better, but I have not been able to get back to anywhere near where I was in January. I am eating turkey, chicken, broth, coconut oil. Even rice, which was fine before, is giving me D. Also, I had two very bad, very dramatic reactions to something, possibly glycerin that was in a supplement? Within hours I had D., shivers, horrible pain in my knee and was up all night. Ten hours later, my joint pain was gone and the rest was getting better. Because of how severe my reaction was it seems to me that I'm allergic, or getting more sensitive to certain things. I have been taking an antihistamine, which was working very well, now, not as well.
Today I almost had an incontinent incident for the first time ever with this disease, and I am really freaked out. I have only had turkey in the last few days. I didn't want to take entocourt because I'm 47 and thought it would be hard to wean of off, and I don't want to be on it forever. Also, I tend to have bad reactions to most pharmaceutical drugs (although not all, it's just that if there is a side effect, I often get it.) I am about ready to call my doctor and get the prescription, but wanted to come back here again and see if you kind people have any good thoughts for me. My previous blood work, from August, showed that I am Iga deficient.
Also, I have been supplementing with magnesium and Vt. D since October, and had my D levels checked in January. They were much better than last summer, in the higher end of normal, so I know I'm able to absorb the supplement.
Thank you in advance. The advice I got here last fall was the only thing that helped me at all, and I really appreciate it.
Best,
Adele
Relapse, considering trying medication. Feeling Lost!
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Hi Adele,
I'm so sorry that you're suffering and have had a relapse. How frustrating! Wanted to share that I am 48, was diagnosed in Feb. of 2011 and had great success with Entocort and had no problems weaning off of it. It helped get me past the 15 episodes of WD that I was experiencing daily and really gave me my life back until I had my diet under control. Good luck to you.
I'm so sorry that you're suffering and have had a relapse. How frustrating! Wanted to share that I am 48, was diagnosed in Feb. of 2011 and had great success with Entocort and had no problems weaning off of it. It helped get me past the 15 episodes of WD that I was experiencing daily and really gave me my life back until I had my diet under control. Good luck to you.
Hi Adele,
I'm sorry that you're having continuing problems. Your IgA deficiency really complicates things because not only does it rule out stool or blood tests based on IgA antibody detection, the IgA deficiency itself can have unpredictable effects on health issues. Some people who have IgA deficiency never even notice anything unusual, while others have an increased risk of infections due to various causes.
Do you know if your IgE, IgG, and IgM antibody production capabilities are normal? If they are, then yes, you can have allergic reactions. But if your IgE and IgG production is subnormal then theoretically at least, you couldn't experience normal allergic reactions (though you could still have inflammatory reactions that do not depend on IgE or IgG antibodies).
That said, I suspect that you are correct in thinking that you may have developed additional sensitivities. For one thing the time frame (a couple of months after initial remission) is typical timing for the discovery of additional food sensitivities, according to the experiences of many of us on this discussion forum. IOW, as the antibodies fade away, a month or 2 after the initial reactions to gluten settle down, the immune system is free to turn it's attention to any other antigens that might remain in the diet, and it will begin to react to them.
The reaction that you described (with D, chills, and knee pain) does sound as thought it might have been due to a reaction to a chemical ingredient in a supplement.
For many of us, this time of year causes a surge in symptoms due to the effect that pollen allergies can have on mast cell activity. My mast cell (histamine) activity has increased to a point where (right in line with pollen levels) I have found it necessary to stop eating a banana each day, and a few Enjoy Life GF, DF, SF chocolate cookies (because of their histamine content). There is much more to this disease than meets the eye and it will surely be decades before medical research begins to actually understand it.
As Cathy posted, when needed, budesonide can really help to improve not only one's quality of life, but one's outlook and attitude. If you feel that you need the extra symptom suppression that Entocort can provide, then it might be worth a try. If it doesn't work for you, you can stop taking it immediately during the first few weeks or so without any ill effects. And even if you take it long term, weaning off is rarely accompanied by withdrawal symptoms. The biggest risk is weaning off too quickly, causing a mast cell/histamine rebound effect that can trigger a relapse of MC symptoms. But weaning very slowly, over a much longer time frame than the label suggests, will typically side-step that risk and result in continued remission, as long as your diet is well designed.
IOW, the bottom line is that many of us tend to be more sensitive during the spring and fall pollen seasons. And this extra sensitivity can mean that we are sensitive to certain items in our diet that might not be a problem at other times.
I hope that some of this is helpful.
Tex
I'm sorry that you're having continuing problems. Your IgA deficiency really complicates things because not only does it rule out stool or blood tests based on IgA antibody detection, the IgA deficiency itself can have unpredictable effects on health issues. Some people who have IgA deficiency never even notice anything unusual, while others have an increased risk of infections due to various causes.
Do you know if your IgE, IgG, and IgM antibody production capabilities are normal? If they are, then yes, you can have allergic reactions. But if your IgE and IgG production is subnormal then theoretically at least, you couldn't experience normal allergic reactions (though you could still have inflammatory reactions that do not depend on IgE or IgG antibodies).
That said, I suspect that you are correct in thinking that you may have developed additional sensitivities. For one thing the time frame (a couple of months after initial remission) is typical timing for the discovery of additional food sensitivities, according to the experiences of many of us on this discussion forum. IOW, as the antibodies fade away, a month or 2 after the initial reactions to gluten settle down, the immune system is free to turn it's attention to any other antigens that might remain in the diet, and it will begin to react to them.
The reaction that you described (with D, chills, and knee pain) does sound as thought it might have been due to a reaction to a chemical ingredient in a supplement.
For many of us, this time of year causes a surge in symptoms due to the effect that pollen allergies can have on mast cell activity. My mast cell (histamine) activity has increased to a point where (right in line with pollen levels) I have found it necessary to stop eating a banana each day, and a few Enjoy Life GF, DF, SF chocolate cookies (because of their histamine content). There is much more to this disease than meets the eye and it will surely be decades before medical research begins to actually understand it.
As Cathy posted, when needed, budesonide can really help to improve not only one's quality of life, but one's outlook and attitude. If you feel that you need the extra symptom suppression that Entocort can provide, then it might be worth a try. If it doesn't work for you, you can stop taking it immediately during the first few weeks or so without any ill effects. And even if you take it long term, weaning off is rarely accompanied by withdrawal symptoms. The biggest risk is weaning off too quickly, causing a mast cell/histamine rebound effect that can trigger a relapse of MC symptoms. But weaning very slowly, over a much longer time frame than the label suggests, will typically side-step that risk and result in continued remission, as long as your diet is well designed.
IOW, the bottom line is that many of us tend to be more sensitive during the spring and fall pollen seasons. And this extra sensitivity can mean that we are sensitive to certain items in our diet that might not be a problem at other times.
I hope that some of this is helpful.
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.
Hi Adele,
Sorry you are struggling. As long as you are GF and DF and do a long wean off you should be ok in getting off of Entocort. I was on it for 4.5 months. The last month I was on one pill every 3 days and the second to the last month I was on one pill every other day as an example of slow wean off. An extremely tiny percent have problems getting off of it. I saw your age. My unscientific observation is most of the extremely tiny percent of those having problems getting off of budesonide are older than you, i.e. age 65 plus.
Also suggest switch up your antihistamine before trying budesonide. Sometimes a different antihistamine will kick me out of a flare.
Sorry you are struggling. As long as you are GF and DF and do a long wean off you should be ok in getting off of Entocort. I was on it for 4.5 months. The last month I was on one pill every 3 days and the second to the last month I was on one pill every other day as an example of slow wean off. An extremely tiny percent have problems getting off of it. I saw your age. My unscientific observation is most of the extremely tiny percent of those having problems getting off of budesonide are older than you, i.e. age 65 plus.
Also suggest switch up your antihistamine before trying budesonide. Sometimes a different antihistamine will kick me out of a flare.
Thank you so much for taking the time to respond to my post.
Cathy and Brandy, I so appreciate you words of support and sharing your experience with Entocort. This is what I hoping to hear. Thank you.
Tex: Thank you so much for sharing your expertise, it's very generous of you.
The bloodwork I had done in August shows an IgA of 87. I have been gluten free for several years, but was not overly concerned about possible contamination at the time of LC. My doctor said because I was gluten free at the time of the test, that it's not helpful for diagnosing celiac. But I DID have a gluten exposure in July, about six weeks before the test. I am not clear on weather that would affect the meaning of the lower end number. She didn't talk at all about what a low IgA might mean separate from celiac, although I have learned more about that from this forum. I don't think they tested for IgE or IgG. On my blood test it says the following, after the IgA number: Endomysial Antibody - Negative. EliA Celikey IgA was less than 0.1 and Giadin DP IgA Ab was 0.2. Doc did suggest I have the "genetic blood test" for celiac, which I haven't done yet, but will do soon. I have two kids, so I'd like to know, but I thought the blood test was less than 100% accurate.
Also, oddly, my LDL was elevated for the first time in my life on this bloodwork, LDL -179. HDL was also 71 and triglycerides were 51, VLDL 10. The doc freaked out at me about the LDL, but since all my other markers were very good, I don't think it's indicative a higher risk for heart disease. I wonder if there is a connection to the LC, is high LDL related to inflammation? Doc, of course, did not see any connection between my current health crisis and the cholesterol numbers.
I have a call into her today to talk about entocort. At this point, quality of life is being very much compromised. I actually have a lot of really good things happening the other parts of my life, and I would like to focus on that part more! I guess even "good" stress is still stress.
One more question: I've been taking Claritin redi tabs, I like them because they don't put me to sleep or keep me up at night. Do you think a different antihistamine is worth a shot, and if so, any suggestions? I've the old
chlor-trimeton 4 hour, problem is they put right to sleep, but then I wake up 4 hours later ready to go, so not so good at night or day.
Thank you all. Sending good wishes for everyone's health.
-Adele
Cathy and Brandy, I so appreciate you words of support and sharing your experience with Entocort. This is what I hoping to hear. Thank you.
Tex: Thank you so much for sharing your expertise, it's very generous of you.
The bloodwork I had done in August shows an IgA of 87. I have been gluten free for several years, but was not overly concerned about possible contamination at the time of LC. My doctor said because I was gluten free at the time of the test, that it's not helpful for diagnosing celiac. But I DID have a gluten exposure in July, about six weeks before the test. I am not clear on weather that would affect the meaning of the lower end number. She didn't talk at all about what a low IgA might mean separate from celiac, although I have learned more about that from this forum. I don't think they tested for IgE or IgG. On my blood test it says the following, after the IgA number: Endomysial Antibody - Negative. EliA Celikey IgA was less than 0.1 and Giadin DP IgA Ab was 0.2. Doc did suggest I have the "genetic blood test" for celiac, which I haven't done yet, but will do soon. I have two kids, so I'd like to know, but I thought the blood test was less than 100% accurate.
Also, oddly, my LDL was elevated for the first time in my life on this bloodwork, LDL -179. HDL was also 71 and triglycerides were 51, VLDL 10. The doc freaked out at me about the LDL, but since all my other markers were very good, I don't think it's indicative a higher risk for heart disease. I wonder if there is a connection to the LC, is high LDL related to inflammation? Doc, of course, did not see any connection between my current health crisis and the cholesterol numbers.
I have a call into her today to talk about entocort. At this point, quality of life is being very much compromised. I actually have a lot of really good things happening the other parts of my life, and I would like to focus on that part more! I guess even "good" stress is still stress.
One more question: I've been taking Claritin redi tabs, I like them because they don't put me to sleep or keep me up at night. Do you think a different antihistamine is worth a shot, and if so, any suggestions? I've the old
chlor-trimeton 4 hour, problem is they put right to sleep, but then I wake up 4 hours later ready to go, so not so good at night or day.
Thank you all. Sending good wishes for everyone's health.
-Adele
Adele,
While "normal" ranges can vary among labs, I though that for most labs an IgA result of 87 would fall in the "normal" range. Are you sure that you have selective IgA deficiency?
If you had been gluten free for at least several months before taking the blood test for celiac disease then the test result would be negative, unless your diet was regularly cross-contaminated with gluten. An accidental gluten exposure prior to the test would have no effect. Those blood tests have such poor sensitivity that you would have to eat a significant amount of gluten (such as at least 2 slices of bread) every day for at least 5 or 6 months prior to the test, in order to have a high reliability of receiving a positive test result (if you were a celiac). The DNA test for celiac genes is helpful, because it defines whether or not you can develop "official" celiac disease (according to the medical rules for celiac disease).
A single cholesterol test result is usually nothing to be concerned about (as if any of them are). Results are sometimes skewed for no obvious reason. My last test results were also way up from the usual level, for some reason or other.
I've never tried the Claritin Redi-Tabs, but a couple of years ago I tried the regular Claritin and it didn't seem to do anything for me (I tried it for common pollen allergy symptoms), so I tried Allegra and it seemed to work, so I've stuck with it. It's likely that most of us do better with one brand over the others, but I'm not aware of any way to predict which one would be best other than to just try them and compare the results.
I used to use the 12-hour Chlor-Trimeton regularly and it worked great for me for roughly 24 hours, but the 12 mg formulation is classified as an anticholinergic and as you are probably aware, anticholinergics have been associated with a significantly increased risk of developing Alzheimer's disease or age-related dementia. So I stopped using it. The 4 mg formulation of Chlor-Trimeton is not listed as an anticholinergic (at least it wasn't the last time I checked).
Allegra doesn't seem to affect my sleep, regardless of the time of day when I take it.
Tex
While "normal" ranges can vary among labs, I though that for most labs an IgA result of 87 would fall in the "normal" range. Are you sure that you have selective IgA deficiency?
If you had been gluten free for at least several months before taking the blood test for celiac disease then the test result would be negative, unless your diet was regularly cross-contaminated with gluten. An accidental gluten exposure prior to the test would have no effect. Those blood tests have such poor sensitivity that you would have to eat a significant amount of gluten (such as at least 2 slices of bread) every day for at least 5 or 6 months prior to the test, in order to have a high reliability of receiving a positive test result (if you were a celiac). The DNA test for celiac genes is helpful, because it defines whether or not you can develop "official" celiac disease (according to the medical rules for celiac disease).
A single cholesterol test result is usually nothing to be concerned about (as if any of them are). Results are sometimes skewed for no obvious reason. My last test results were also way up from the usual level, for some reason or other.
I've never tried the Claritin Redi-Tabs, but a couple of years ago I tried the regular Claritin and it didn't seem to do anything for me (I tried it for common pollen allergy symptoms), so I tried Allegra and it seemed to work, so I've stuck with it. It's likely that most of us do better with one brand over the others, but I'm not aware of any way to predict which one would be best other than to just try them and compare the results.
I used to use the 12-hour Chlor-Trimeton regularly and it worked great for me for roughly 24 hours, but the 12 mg formulation is classified as an anticholinergic and as you are probably aware, anticholinergics have been associated with a significantly increased risk of developing Alzheimer's disease or age-related dementia. So I stopped using it. The 4 mg formulation of Chlor-Trimeton is not listed as an anticholinergic (at least it wasn't the last time I checked).
Allegra doesn't seem to affect my sleep, regardless of the time of day when I take it.
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.
Hello,
Thanks so much for your response Tex. I've been packing my family for an upcoming move and haven't been on the computer in days, so I'm sorry for my late post.
I have an appointment with my GI on Friday and I will ask her about the low IgA, I thought the same thing that you pointed out! She said "deficient" but it is at the very low end of "normal". I wonder if this would mean that it would be helpful if I did the Enterolab testing? I haven't done it because I thought it wouldn't be useful, I've just cut most things out of my diet! But now I'm having reactions even to rice and well cooked veggies, so I'm not sure.
I'm going to talk to my doc about Entocort and the IgA result. I'm also wondering, what do I eat once on the Entocort? I can't get more limited than I am right now, which is basically turkey, broth and coconut oil. Some bacon sometimes. Can anyone provide a link to a thread on this, I'm sure it's been discussed a lot! I thought the Entocort gets the D under control while I work on the diet, but I've been doing the diet for six months…maybe the two in combination will get the inflammation under control?
Anyway, thank you so much. Tex, your help is so very appreciated. I hope everyone is having a good day today.
-Adele
Thanks so much for your response Tex. I've been packing my family for an upcoming move and haven't been on the computer in days, so I'm sorry for my late post.
I have an appointment with my GI on Friday and I will ask her about the low IgA, I thought the same thing that you pointed out! She said "deficient" but it is at the very low end of "normal". I wonder if this would mean that it would be helpful if I did the Enterolab testing? I haven't done it because I thought it wouldn't be useful, I've just cut most things out of my diet! But now I'm having reactions even to rice and well cooked veggies, so I'm not sure.
I'm going to talk to my doc about Entocort and the IgA result. I'm also wondering, what do I eat once on the Entocort? I can't get more limited than I am right now, which is basically turkey, broth and coconut oil. Some bacon sometimes. Can anyone provide a link to a thread on this, I'm sure it's been discussed a lot! I thought the Entocort gets the D under control while I work on the diet, but I've been doing the diet for six months…maybe the two in combination will get the inflammation under control?
Anyway, thank you so much. Tex, your help is so very appreciated. I hope everyone is having a good day today.
-Adele
Hi Adele,
I'm starting to feel that you may be reacting to something in your environment and not your food.
Perhaps soy in cosmetics or in a supplement you may be taking. Pollen in the air - histamine can make a real mess of healing so a good antihistamine (Allegra 180mg, Zyrtec, or Claritin redi tab for Day and Benedryl for Night).
The stress of the move you just mentioned can keep an MC flare ongoing until the gut can relax and re-direct its focus back on healing.
If your VitD3 levels are too low and not enough Elemental Magnesium is being added daily you will continue to have D with minimal healing if any at all.
What you are doing with bone broth and turkey and coconut oil all sound very safe, I would think you could add an overcooked carrot or sweet potato in there too. If you do the Enterolab testing that will surely narrow things down while you are on Entocort and will allow healing to begin.
Good luck!
Erica
I'm starting to feel that you may be reacting to something in your environment and not your food.
Perhaps soy in cosmetics or in a supplement you may be taking. Pollen in the air - histamine can make a real mess of healing so a good antihistamine (Allegra 180mg, Zyrtec, or Claritin redi tab for Day and Benedryl for Night).
The stress of the move you just mentioned can keep an MC flare ongoing until the gut can relax and re-direct its focus back on healing.
If your VitD3 levels are too low and not enough Elemental Magnesium is being added daily you will continue to have D with minimal healing if any at all.
What you are doing with bone broth and turkey and coconut oil all sound very safe, I would think you could add an overcooked carrot or sweet potato in there too. If you do the Enterolab testing that will surely narrow things down while you are on Entocort and will allow healing to begin.
Good luck!
Erica
To Succeed you have to Believe in something with such a passion that it becomes a Reality - Anita Roddick
Dx LC April 2012 had symptoms since Aug 2007
Dx LC April 2012 had symptoms since Aug 2007
I agree with everything that Erica mentioned.
The biggest advantage of the EnteroLab test results at this point might be to determine whether you might be able to add some of the foods that you are now avoiding back into your diet without jeopardizing recovery.
Have you looked at the diet guidelines available for download at the Microscopic Colitis Foundation website?
http://www.microscopiccolitisfoundation ... 120615.pdf
Tex
The biggest advantage of the EnteroLab test results at this point might be to determine whether you might be able to add some of the foods that you are now avoiding back into your diet without jeopardizing recovery.
Have you looked at the diet guidelines available for download at the Microscopic Colitis Foundation website?
http://www.microscopiccolitisfoundation ... 120615.pdf
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.
Adele, one more thing that I came across is that most antihistamines contain corn hidden in various forms. Zyrtec childrens is the only one that didn't cause me additional D due to that fact. But like Tex said there's a possibility of dementia later. I only take it when desperate.
Thank you Tex, you've helped me too. I didn't realize the histamine content in the EL cookies. Luckily I'm out of them, but ate them a few days ago. I'm having a time right now, with gas and D. Stopping my duck egg intake too. The pollen here is unreal. Going to try some zyrtec tonight to see if it helps.....so looking forward to the end of spring (sadly)!
Thank you Tex, you've helped me too. I didn't realize the histamine content in the EL cookies. Luckily I'm out of them, but ate them a few days ago. I'm having a time right now, with gas and D. Stopping my duck egg intake too. The pollen here is unreal. Going to try some zyrtec tonight to see if it helps.....so looking forward to the end of spring (sadly)!
Martha E.
Philippians 4:13
Jul 2008 took Clindamycin for a Sinus infection that forever changed my life
Dec 2014 MC Dx
Jul 15, 2015 Elimination Diet
Aug 17, 2015 Enterolab Test
Dec 2015 Reflux
Sept 2016 IC
Philippians 4:13
Jul 2008 took Clindamycin for a Sinus infection that forever changed my life
Dec 2014 MC Dx
Jul 15, 2015 Elimination Diet
Aug 17, 2015 Enterolab Test
Dec 2015 Reflux
Sept 2016 IC
Martha,
Pollen levels are generally declining around here these days (except for pecan trees), but it seems to be worse every year. I had just ordered another half-dozen boxes of the cookies when I decided to stop eating them. I may try them again after pollen season is over (if I can get up the nerve
).
I hope the air soon begins to clear in your part of the world, too.
Tex
Pollen levels are generally declining around here these days (except for pecan trees), but it seems to be worse every year. I had just ordered another half-dozen boxes of the cookies when I decided to stop eating them. I may try them again after pollen season is over (if I can get up the nerve
).I hope the air soon begins to clear in your part of the world, too.
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.
Thank you Erica, Tex and Martha for commenting and sharing your great advice. I'm going to change my antihistamine pronto.
I did see my GI on Friday and she prescribed Busdesonide. She also wanted me to have a whole host of other tests "just to see if anything else is going on" and I said no, I know what's going on. She was somewhat helpful, and also very frustrating. She said my good results from diet changes from Nov. - January had nothing to do with diet, and probably just happened to coincide with a "natural relapse". UGH! I said I didn't think so, and she made the point that my symptoms are back now despite my diet, so how do I know? So if I take a medication now, and they symptoms go away, couldn't we say the same thing? I guess not, I didn't get into with her, but it's so annoying because she's basically saying she doesn't believe anything I say.
Good news: I started the busdesonide on Saturday morning and have had basically no LC symptoms since then. One thing I've noticed, and it's only been a couple of days, is that instead of feeling wired, I'm actually pretty tired and going to bed earlier and sleeping sounder than I have in months. My husband noted that I didn't wake up when he came to bed last night, and that is a first. I'm a light sleeper! Don't know it it's the medication, of course.
Also good (ish) news: My doctor did think that a lot of my symptoms sounded allergic and suggested a Mast cell issue, she said a lot of her patients with that do very well with a low histamine diet and she works with a nutritionist who can help with that. BUT, she said if I do have LC (which I do, because the biopsy showed it) then I probably don't have Mast, if I have Mast, my symptoms aren't from LC. What? I asked her don't they go together sometimes? And she said no. She said if it is a Mast cell issue then I should NOT be on steroids. okay, I understand that, but she said if the meds work for my symptoms then I don't have a mast issue. Hmmmm.
She thinks my diet is way too restricted and wants me to see her nutritionist, I was pretty adamant that I'm not going to eat food that I know makes me sick, but she seemed to understand and talked about getting help slowly bringing more food into my diet. The nutritionist has celiac herself and works with allergy patients, so it's possible that she might be helpful and not just totally useless.
Doc also took blood for a DNA test for celiac gene. She feels that LC and celiac and related and she sees them together a fair amount, she wants to know if that's my issue because she wants to screen me for all kinds of other celiac related medical problems if that's the case.
I'm trying to accept the helpful things she can do for me and ignore the rest, it's still frustrating though. She was horrified that I was taking magnesium (chelated) because she said it's a laxative, I said no, tried to explain, she said "All magnesium supplement are laxatives and should never be taken with LC". Her feeling is that is why I've had a relapse, even though I ran out of the mag. a few weeks ago and haven't been taking it. I just gave up arguing, but it's annoying, to say the least.
Thanks to you all for making me feel less crazy, and for listening. I'm not sure how well the budesonide is going work, but so far so good.
Thanks for reading!
Adele
I did see my GI on Friday and she prescribed Busdesonide. She also wanted me to have a whole host of other tests "just to see if anything else is going on" and I said no, I know what's going on. She was somewhat helpful, and also very frustrating. She said my good results from diet changes from Nov. - January had nothing to do with diet, and probably just happened to coincide with a "natural relapse". UGH! I said I didn't think so, and she made the point that my symptoms are back now despite my diet, so how do I know? So if I take a medication now, and they symptoms go away, couldn't we say the same thing? I guess not, I didn't get into with her, but it's so annoying because she's basically saying she doesn't believe anything I say.
Good news: I started the busdesonide on Saturday morning and have had basically no LC symptoms since then. One thing I've noticed, and it's only been a couple of days, is that instead of feeling wired, I'm actually pretty tired and going to bed earlier and sleeping sounder than I have in months. My husband noted that I didn't wake up when he came to bed last night, and that is a first. I'm a light sleeper! Don't know it it's the medication, of course.
Also good (ish) news: My doctor did think that a lot of my symptoms sounded allergic and suggested a Mast cell issue, she said a lot of her patients with that do very well with a low histamine diet and she works with a nutritionist who can help with that. BUT, she said if I do have LC (which I do, because the biopsy showed it) then I probably don't have Mast, if I have Mast, my symptoms aren't from LC. What? I asked her don't they go together sometimes? And she said no. She said if it is a Mast cell issue then I should NOT be on steroids. okay, I understand that, but she said if the meds work for my symptoms then I don't have a mast issue. Hmmmm.
She thinks my diet is way too restricted and wants me to see her nutritionist, I was pretty adamant that I'm not going to eat food that I know makes me sick, but she seemed to understand and talked about getting help slowly bringing more food into my diet. The nutritionist has celiac herself and works with allergy patients, so it's possible that she might be helpful and not just totally useless.
Doc also took blood for a DNA test for celiac gene. She feels that LC and celiac and related and she sees them together a fair amount, she wants to know if that's my issue because she wants to screen me for all kinds of other celiac related medical problems if that's the case.
I'm trying to accept the helpful things she can do for me and ignore the rest, it's still frustrating though. She was horrified that I was taking magnesium (chelated) because she said it's a laxative, I said no, tried to explain, she said "All magnesium supplement are laxatives and should never be taken with LC". Her feeling is that is why I've had a relapse, even though I ran out of the mag. a few weeks ago and haven't been taking it. I just gave up arguing, but it's annoying, to say the least.
Thanks to you all for making me feel less crazy, and for listening. I'm not sure how well the budesonide is going work, but so far so good.
Thanks for reading!
Adele
Hmmmm. Obviously your doctor doesn't understand how corticosteroids work to suppress intestinal inflammation. She seems to know enough about mast cells to understand that they can cause major digestive system problems, but she's confused because she doesn't understand simple facts that should have been common knowledge in her field for at least 25 years, namely that corticosteroids work by suppressing mast cell numbers in the intestines. Consider the following abstract from a research article published back in 1990. The red emphasis is mine.Adele wrote:BUT, she said if I do have LC (which I do, because the biopsy showed it) then I probably don't have Mast, if I have Mast, my symptoms aren't from LC. What? I asked her don't they go together sometimes? And she said no. She said if it is a Mast cell issue then I should NOT be on steroids. okay, I understand that, but she said if the meds work for my symptoms then I don't have a mast issue. Hmmmm.
Corticosteroid treatment reduces mast cell numbers in inflammatory bowel disease.Abstract
Mast cell degranulation in the gut causes mucus secretion, mucosal edema, and increased gut permeability and may be responsible for some of the symptoms and signs of inflammatory bowel disease. We have used a novel monoclonal antibody (AAI) against tryptase expressed exclusively in the granules of mast cells to enumerate mast cells in rectal biopsies in order to study the effect of inflammatory bowel disease and drug treatment upon rectal mast cell numbers. Rectal mast cell numbers are significantly reduced in inflammatory bowel disease patients taking corticosteroids (mean 4.95 cells/mm2) when compared with control patients (10.1, P less than 0.001) and inflammatory bowel disease patients not taking corticosteroids (9.7, P less than 0.001 Wilcoxon rank sum test). The reduction in mast cell counts was independent of the degree of inflammation or architectural distortion. There was a negative correlation between the dose of corticosteroids and mast cell count (r = 0.53, P less than 0.05 Spearman rank correlation), and the mast cell count was reduced within a few days of treatment and remained low throughout steroid therapy. Mucosal mast cell depletion may be an important mechanism of action of corticosteroids in inflammatory bowel disease.
But at least she seems to be trying to be innovative. She's correct about all magnesium being a laxative. The key is the dosage. Many poisons are used for medicinal purposes. Whether they are a poison or a therapeutic treatment is determined by the dose. Likewise, many minerals are toxic in high doses, but they are essential nutrients (and even vital electrolytes) in smaller doses. Enough sodium will kill us dead as a hammer, but we have to have it in reasonable doses in order to keep our body operating. That's also true of every other electrolyte, including magnesium. The point is, certain forms (compounds) of magnesium are far less likely to cause diarrhea than other forms.
Of all the available magnesium supplements on the market, magnesium oxide is the cheapest, most poorly absorbed, most likely form to cause diarrhea. To demonstrate how ignorant most medical institutions are about this issue, guess which form of magnesium is almost always used when supplementing magnesium in magnesium-deficient patients in hospital settings? You guessed it — magnesium oxide. They select it probably because it's cheap, although of course when it shows up on the patient's bill it will be an incredibly expensive treatment.
But even magnesium glycinate will cause D if we take enough of it. It's less likely to cause D than most forms because we absorb more of it, thus leaving less in the intestines to promote D. But when we increase the dose, the more we take at one time, the lower the percentage we absorb, and so higher doses will eventually reach the point where enough magnesium remains unabsorbed in the intestines to promote D.
IMO, any amount of magnesium (elemental magnesium) supplement in excess of roughly 300 mg should be split up and taken at spaced-out intervals during the day, such as at mealtime. For example, I take 300 mg after breakfast, 100 mag after lunch, and another 100 mg before bedtime. Topically-applied magnesium will not cause D, so as much as desired can be safely used in addition to any oral magnesium supplement program.
But of course this is just my opinion.
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.
I'm right there with you on GI Drs. I changed to a NP GI, only because she typically does what I ask her. Sadly, she's clueless. I think I may have burned a bridge, cause at my follow-up I didn't take the PPI she prescribed. I told her betaine helped and she had no idea what that was. It irritated her, I could tell.
Good luck, your respect of Drs will greatly diminish after a while, sadly. Maybe you could try to find another one or an integrative medicine Dr. They are a little more open!
Everyone on here has trouble with drs, but we still need them and their signature
So glad you are doing better!!
Good luck, your respect of Drs will greatly diminish after a while, sadly. Maybe you could try to find another one or an integrative medicine Dr. They are a little more open!
Everyone on here has trouble with drs, but we still need them and their signature
So glad you are doing better!!
Martha E.
Philippians 4:13
Jul 2008 took Clindamycin for a Sinus infection that forever changed my life
Dec 2014 MC Dx
Jul 15, 2015 Elimination Diet
Aug 17, 2015 Enterolab Test
Dec 2015 Reflux
Sept 2016 IC
Philippians 4:13
Jul 2008 took Clindamycin for a Sinus infection that forever changed my life
Dec 2014 MC Dx
Jul 15, 2015 Elimination Diet
Aug 17, 2015 Enterolab Test
Dec 2015 Reflux
Sept 2016 IC
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Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
i think this was one of the big stressors in my early days of MC/health issues.Everyone on here has trouble with drs, but we still need them and their signature
I was trying to educate the health professionals i was seeing to what we knew about MC...
Now, I tell the doctors what they 'need' to hear. I dont tell them anything that will cause issues ie like the dosage of the Vit D that i do etc
In australia, if they issue a script, there is no way for them to know if I have had it filled, never mind actually taking the tablets.
it is way easier to let them issue the script, i take it from them, and if i get it filled or not is up to me.
I do have a good functional doctor who is great for all my other health issues, but she still struggles with the 'uniqueness' of MC, and my very defensive attitude about making changes to my eating plan.
like any relationship in life, find the happy medium, dont say anything that will trigger unsettlement. We need the doctors for tests etc
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama