Susanne and Teri, I'm at a loss. This disease has driven me MAD! I am tired of fighting and I have fought the good fight before with other diseases and just about won, but not this disease. It's kicking me to the curb over and over. My TOTO toilet has become my only friend and I talk to it. Can you believe that? I'm talking to my toilet. I think my husband has given up. Y'all are my only friend.
Part of my problem is being diabetic. I can't drink anything acidic. It sends me to TOTO. I'm trying to figure out how to maintain diabetes and MC. It ain't easy. I do believe I have Mast Cell problems - I agree with you on that. I just took two Zyrtec. Sometimes it helps, sometimes not. I think the acid drink - Ocean Spray Cranberry Drink is killing me. So what do I do for diabetic lows? Diabetic lows can kill you. Let's talk about depression. Let's talk about brain fog. Let's talk about the GI Medical community (GI doctors) who could give a damn. Yes, I'm having a bad time. Yes, it could be worse - cancer, but this disease is the Roger Dangerfield of diarrhea diseases. We get no respect. I am lost. I am angry. I am tired. I am sick of talking to TOTO. AIDS has only been around since the 1990's and it's nearly been cured. This disease has been around forever and doctors ignore it. Just like Type 1 diabetes. They don't want a cure. They make too much money off us.
Terri, I am surprised that Potassium does not help your spasms.
I'm glad I got y'all for help. Plus Gabes and Tex. I am lucky to have them. Like I've said before, misery loves company. But the big D is doing it's job. I can tell my hair is thinning again and I feel isolated from society. Afraid to leave TOTO. Dorothy
I tried a different path and it didn't work out
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Hi all,
I'm happy the site is back up and running and I'm breathing a sigh of relief.
I ordered the Thorne Methyl Guard plus, zinc/copper and vitamin C. I don't know, I took the Methyl Guard Plus Saturday morning with breakfast and by Saturday night and all day Sunday, had D, big time. It must of hit 30 to 40 times at least. I hadn't eaten anything different that day and in the almost 8 years of dealing with this "benign chronic nuisance disease" (that's what my GI Dr calls it) CC, I have never had D so badly. Can the Methyl Guard Plus cause that kind of reaction? I haven't taken another one and haven't started with the Vitamin C or zinc/copper. I'm afraid to introduce anything new right now. I also stopped taking the psyllium.
Well, I'm not diabetic and I have great blood circulation, yet, my toes are still numb and I still have the pinching pain in my left butt cheek. I agree with Perserve, I think it's sciatica and I'm not going for anymore tests right now, I'm just going to stick with the stretches. and see how it goes.
I'm on a really bland diet and I started taking budesonide. I haven't had any D today but the intestines are still on a roller coaster ride.
TM - I have osteoporosis and for 8 years the Dr had me take Fosamax. I have had 3 Reclast infusions. I recently went for my bone density scan but haven't gotten the results yet. I'm sure I have malabsorption, leaky gut, mast cells and sensitivity to high histamine foods. I do take an antihistamine every day.
Any one with MC have vision problems? I have floaters in both eyes that are causing me blurry vision at the most inopportune times, while I'm driving. I have one in the left eye for well over a year and another one in the right eye for about 8 months. There is nothing they can do for me right now, I'm told they will go away. At this point I blame everything on the many causes of MC.
Thanks for your comments and for listening.
Thanks,
Susanne
I'm happy the site is back up and running and I'm breathing a sigh of relief.
I ordered the Thorne Methyl Guard plus, zinc/copper and vitamin C. I don't know, I took the Methyl Guard Plus Saturday morning with breakfast and by Saturday night and all day Sunday, had D, big time. It must of hit 30 to 40 times at least. I hadn't eaten anything different that day and in the almost 8 years of dealing with this "benign chronic nuisance disease" (that's what my GI Dr calls it) CC, I have never had D so badly. Can the Methyl Guard Plus cause that kind of reaction? I haven't taken another one and haven't started with the Vitamin C or zinc/copper. I'm afraid to introduce anything new right now. I also stopped taking the psyllium.
Well, I'm not diabetic and I have great blood circulation, yet, my toes are still numb and I still have the pinching pain in my left butt cheek. I agree with Perserve, I think it's sciatica and I'm not going for anymore tests right now, I'm just going to stick with the stretches. and see how it goes.
I'm on a really bland diet and I started taking budesonide. I haven't had any D today but the intestines are still on a roller coaster ride.
TM - I have osteoporosis and for 8 years the Dr had me take Fosamax. I have had 3 Reclast infusions. I recently went for my bone density scan but haven't gotten the results yet. I'm sure I have malabsorption, leaky gut, mast cells and sensitivity to high histamine foods. I do take an antihistamine every day.
Any one with MC have vision problems? I have floaters in both eyes that are causing me blurry vision at the most inopportune times, while I'm driving. I have one in the left eye for well over a year and another one in the right eye for about 8 months. There is nothing they can do for me right now, I'm told they will go away. At this point I blame everything on the many causes of MC.
Thanks for your comments and for listening.
Thanks,
Susanne
Hi Susanne,
Yes, it's possible that the Methyl-Guard Plus caused those problems. In fact, some of us have to stop taking supplements while our MC is active.
You are probably already aware that one of the side effects of taking a corticosteroid is cataracts, so it's probably possible that they may cause other eye issues as well.
Tex
Yes, it's possible that the Methyl-Guard Plus caused those problems. In fact, some of us have to stop taking supplements while our MC is active.
You are probably already aware that one of the side effects of taking a corticosteroid is cataracts, so it's probably possible that they may cause other eye issues as well.
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 Tex,
Thank you for that information. I'm still taking the antihistamine, D3, P5P and L Glutamine but stopped any others. Perhaps I should stop them all?
I didn't know that one of the many side effects of corticosteroids was cataracts. The eye doctor told me that I have the start of cataracts but are nowhere to the point of cataract surgery. However, if I did have previous cataract surgery, the treatment for floaters would be to laser them.
Thanks again,
Susanne
Thank you for that information. I'm still taking the antihistamine, D3, P5P and L Glutamine but stopped any others. Perhaps I should stop them all?
I didn't know that one of the many side effects of corticosteroids was cataracts. The eye doctor told me that I have the start of cataracts but are nowhere to the point of cataract surgery. However, if I did have previous cataract surgery, the treatment for floaters would be to laser them.
Thanks again,
Susanne
Yikes.....floaters can be treated with laser! I have a couple of them hanging out in my eyes and bugs me at times too, in fact my eye dr just asked me if they were bothering me too much yet....as far as cataracts I didn't give it much thought that our MC could help that along....my mom never took any corticosteroids or at least not enough during her life at any one time to really count and she has cataracts and is going in soon to have them removed so not sure if that is genetic for me or what at this point. Or if she may have leaky gut and that is what sent her to have diverticulitis removed 2 yrs ago so she was prone to getting the cataracts anyway.
Dorothy.....my MIL is diabetic type 2....I know she takes a weekly shot I believe of Trulicity? I think she gets sweet items into her system such as Glycerna products and one of them may be a glucose tab that you suck on....as far as drinking, koolaid powder might be an option where you can add your own sugar/glucose, or just plain sugared water (no citric acid in that). I know MC is active for you, so you will need to find an acceptance of this right now and eat blandly, with minimal foods. For how long I'm not certain. Jello may be another option you can try in place of sugared items for the diabetes. I do know that once you start getting the VitD and Magnesium into your cells (and this will take some time) really powerful healing begins to take place. You don't know it is happening until you notice less pain, brain fog, bathroom trips are not as many per day, you might be sleeping better too.
Take care everyone :-)
E
Dorothy.....my MIL is diabetic type 2....I know she takes a weekly shot I believe of Trulicity? I think she gets sweet items into her system such as Glycerna products and one of them may be a glucose tab that you suck on....as far as drinking, koolaid powder might be an option where you can add your own sugar/glucose, or just plain sugared water (no citric acid in that). I know MC is active for you, so you will need to find an acceptance of this right now and eat blandly, with minimal foods. For how long I'm not certain. Jello may be another option you can try in place of sugared items for the diabetes. I do know that once you start getting the VitD and Magnesium into your cells (and this will take some time) really powerful healing begins to take place. You don't know it is happening until you notice less pain, brain fog, bathroom trips are not as many per day, you might be sleeping better too.
Take care everyone :-)
E
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
Brandy,
That’s pretty frightening and demoralizing about the K-2 (MK-4) research. At $45 monthly I wasted an awful Lot of $—I probably took it for at least 5 years.
The main MK-7 studies (re: bone density/strength and cardiovascular stiffness) were done at a university in The Netherlands, so hopefully their results are credible. Have you heard anything negative about the MK-7 research? I’d been thinking of starting that again.
Teri
That’s pretty frightening and demoralizing about the K-2 (MK-4) research. At $45 monthly I wasted an awful Lot of $—I probably took it for at least 5 years.
The main MK-7 studies (re: bone density/strength and cardiovascular stiffness) were done at a university in The Netherlands, so hopefully their results are credible. Have you heard anything negative about the MK-7 research? I’d been thinking of starting that again.
Teri
TeriM
“Sometimes the light’s all shining on me,
other times I can barely see.” Robert Hunter
“Sometimes the light’s all shining on me,
other times I can barely see.” Robert Hunter
Susanne,
Sorry to see your latest update. Hope things are at least beginning to improve. Can’t tell you how may times I’ve stopped and restarted various supplements trying to identify possible “culprits.” Sometimes its best to take a break from just about everything for awhile—even food—particularly during a nasty flare like yours. Do you take Ranitidine—generic Zantac? I find that it helps. I take it in addition to Zyrtec. Have you been taking L-Glutamine long enough to know if its helped? Its one of many digestive supplements/ remedies that I've been advised to take by naturopaths. All were super expensive, none helped, and quite a few made things worse.
Could mold be a trigger in your home or surroundings? I was surprised to find that my sensitivity to mold (which is plentiful here in the NW rainforest) had increased—a lot. Started sneezing every time I watered certain houseplants.
I’ve had floaters for years, but they worsened—got bigger and darker—early last year. Vision has been getting blurrier and lenses thicker every exam, but I was also told my cataracts weren’t ready for surgery.
Re: Mast cells: The first step doesn’t require additional testing. You just have to request that your colonoscopy slides be re-examined using the special stain necessary for a mast cell count. My PCP agreed to do this after multiple specialists opted out. It was done a few days later, despite the slides being a few years old. There was no additional charge—the pathologist just issued an addendum. Turns out that my count was elevated, which leant credibility for further testing.
Here’s a recent meta-analysis linking Mast Cells and osteoporosis:
https://www.researchgate.net/publicatio ... teoporosis
The Role of Mast Cells in Osteoporosis
“Mast cells appear to be relevant in the pathogenesis of bone turnover. Their deficiency has been associated with low remodeling states, while their excess is associated with accelerated bone loss. Even their byproducts are responsible for increased bone resorption. Inhibiting mast cells and/or their products may be a novel therapy for treating osteoporosis in the future.”
I lasted less than six months on Fosamax, then Actonel, and was gullible enough to add PPI’s for the escalating GERD and esophageal issues that they aggravated. Next mistake was Bio-Identical hormones for 10 years, which ended abruptly with a breast cancer DX in 2015. At least the hormones slowed the bone loss significantly. Of course bone density plummeted w/o the hormones, and I’ve had 2 Reclast infusions since. I was due for another in 2 weeks, but postponed it a month and have been considering cancelling it. Last year sodium, chloride and potassium were so low that I had to be infused with those before the Reclast, so it took forever. Have your prior infusions been effective for you?
Hope things calm down.
Teri
Sorry to see your latest update. Hope things are at least beginning to improve. Can’t tell you how may times I’ve stopped and restarted various supplements trying to identify possible “culprits.” Sometimes its best to take a break from just about everything for awhile—even food—particularly during a nasty flare like yours. Do you take Ranitidine—generic Zantac? I find that it helps. I take it in addition to Zyrtec. Have you been taking L-Glutamine long enough to know if its helped? Its one of many digestive supplements/ remedies that I've been advised to take by naturopaths. All were super expensive, none helped, and quite a few made things worse.
Could mold be a trigger in your home or surroundings? I was surprised to find that my sensitivity to mold (which is plentiful here in the NW rainforest) had increased—a lot. Started sneezing every time I watered certain houseplants.
I’ve had floaters for years, but they worsened—got bigger and darker—early last year. Vision has been getting blurrier and lenses thicker every exam, but I was also told my cataracts weren’t ready for surgery.
Re: Mast cells: The first step doesn’t require additional testing. You just have to request that your colonoscopy slides be re-examined using the special stain necessary for a mast cell count. My PCP agreed to do this after multiple specialists opted out. It was done a few days later, despite the slides being a few years old. There was no additional charge—the pathologist just issued an addendum. Turns out that my count was elevated, which leant credibility for further testing.
Here’s a recent meta-analysis linking Mast Cells and osteoporosis:
https://www.researchgate.net/publicatio ... teoporosis
The Role of Mast Cells in Osteoporosis
“Mast cells appear to be relevant in the pathogenesis of bone turnover. Their deficiency has been associated with low remodeling states, while their excess is associated with accelerated bone loss. Even their byproducts are responsible for increased bone resorption. Inhibiting mast cells and/or their products may be a novel therapy for treating osteoporosis in the future.”
I lasted less than six months on Fosamax, then Actonel, and was gullible enough to add PPI’s for the escalating GERD and esophageal issues that they aggravated. Next mistake was Bio-Identical hormones for 10 years, which ended abruptly with a breast cancer DX in 2015. At least the hormones slowed the bone loss significantly. Of course bone density plummeted w/o the hormones, and I’ve had 2 Reclast infusions since. I was due for another in 2 weeks, but postponed it a month and have been considering cancelling it. Last year sodium, chloride and potassium were so low that I had to be infused with those before the Reclast, so it took forever. Have your prior infusions been effective for you?
Hope things calm down.
Teri
TeriM
“Sometimes the light’s all shining on me,
other times I can barely see.” Robert Hunter
“Sometimes the light’s all shining on me,
other times I can barely see.” Robert Hunter
Hi Teri,
I've taken the MK-7 and I've had no problems. I think the problems that seem to be reported on the osteo forums are
heart palpitations but did not experience that. I think I took the 90 or 100 micrograms.
I'm still taking the MK-4.
I think I took the MK-7 for about 6 months and then changed to the MK-4 for about 18 months until my next dexa
which came out ok.
My functional med doc still likes vitamin K-2 but I'm not sure which one. He is in his 80's, fell down and broke
his shoulder while dressing and really credits K-2 for his rapid healing.
I've taken the MK-7 and I've had no problems. I think the problems that seem to be reported on the osteo forums are
heart palpitations but did not experience that. I think I took the 90 or 100 micrograms.
I'm still taking the MK-4.
I think I took the MK-7 for about 6 months and then changed to the MK-4 for about 18 months until my next dexa
which came out ok.
My functional med doc still likes vitamin K-2 but I'm not sure which one. He is in his 80's, fell down and broke
his shoulder while dressing and really credits K-2 for his rapid healing.
Regarding cataracts and floaters, I've never taken a corticosteroid, and I have cataracts and floaters. The cataracts are probably due to old injuries (metal grinding particles that had to be surgically removed), and the floaters probably come from 30+ years of drusen.
Tex
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.
Heck, the boyfriend had to have cataract surgery at age 55. He thinks it is from doing farmwork during the summers in Ohio without sunglasses. I serious thought I was going to die when he was driving at night prior to diagnosis.
Something was really off with his driving and I made him pull over so I could drive.
No one in his age bracket has cataract surgery. He thought he was going blind before he saw the eye doctor.
This is a very, very routine procedure in Florida and I think the cataract surgeons make the most money in town.
Something was really off with his driving and I made him pull over so I could drive.
No one in his age bracket has cataract surgery. He thought he was going blind before he saw the eye doctor.
This is a very, very routine procedure in Florida and I think the cataract surgeons make the most money in town.
Is this side effects from budesonide or something else?
Hi all,
I've been taking budesonide for the latest flare for almost a month. I responded to it very quickly, so instead of taking the 9 mg for 1 month as prescribed, I started the 4th week tapering from 9 mg to 6 mg , alternating days. The beginning of this week I noticed I was having stomach pains & feeling nauseous after eating, headaches and terrible fatigue and I've had alternating picture perfect normans to very soft stools. Are these side effects or something else? The last time I called into the GI dr. it took 2 days to get back to me. I'm going to adjust my food to just bone broth for a couple of days to see how I feel. I've also considered stopping the budesonide but I've made progress and I'm afraid to stop. I guess I really need to call in to the Dr., ugh!
I'm tired of always taking one day at a time. I spend a lot of time inside by myself because I'm miserable from the CC. I've been trying to take a toning class, 3 x's a week but it's in the am and mornings are usually the time of day that I have problems. I missed my Tai Chi classes this week and they are in the afternoon because of whatever is going on now.
Any suggestions?
As always, thank you for any advice/comments.
Thanks,
Susanne
I've been taking budesonide for the latest flare for almost a month. I responded to it very quickly, so instead of taking the 9 mg for 1 month as prescribed, I started the 4th week tapering from 9 mg to 6 mg , alternating days. The beginning of this week I noticed I was having stomach pains & feeling nauseous after eating, headaches and terrible fatigue and I've had alternating picture perfect normans to very soft stools. Are these side effects or something else? The last time I called into the GI dr. it took 2 days to get back to me. I'm going to adjust my food to just bone broth for a couple of days to see how I feel. I've also considered stopping the budesonide but I've made progress and I'm afraid to stop. I guess I really need to call in to the Dr., ugh!
I'm tired of always taking one day at a time. I spend a lot of time inside by myself because I'm miserable from the CC. I've been trying to take a toning class, 3 x's a week but it's in the am and mornings are usually the time of day that I have problems. I missed my Tai Chi classes this week and they are in the afternoon because of whatever is going on now.
Any suggestions?
As always, thank you for any advice/comments.
Thanks,
Susanne
Look very, very carefully at everything that goes into your mouth, and make sure it is pure. Keep a food/reaction journal. Something you are ingesting is causing you to have continuing inflammation. And it's probably something that you are ingesting every day. We tend to assume that things that we have been eating or drinking every day for a long time are safe. Look at everything carefully. It might be in your food, your supplements, toothpaste, skincare, or some medication. But something is either cross-contaminated (probably with gluten), or it's causing you to react because you're sensitive to it.
Tex
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 Tex,
Thank you for the suggestions. I had a handle on my medications but 3 pharmacies later, I think it got goofed up. The budesonide I'm taking is Amneal and the website says "Contains corn starch. Corn contains gluten, but NOT gliaden gluten, the type associated with celiac sprue disease, and is generally considered harmless to those with gluten allergies." The levothyroxine is Mylan, their website says that it is not certified gluten free. I looked on a gluten free medication lists, I can't find budesonide at all but find Entocort EC. One list had Mylan listed for levothyroxine as gluten free. I believe that Lannett levothroxine is gluten free. I'm going to need refills soon so I will research a little more to make sure I get the gluten free ones. I recently stopped taking cyclobenzaprine and diazepam, I was way overtired the next day and I don't think they were helping me anymore. I did a check on my personal care products, I think I have to find a need hair conditioner but everything else seems to be gluten free. I do not have a gluten free kitchen so there is probably some cross contamination going on there. There isn't any wheat flour in the house but there is wheat bread in the freezer. I do not use the toaster and I try to prepare my meals away from the area that my husband makes his sandwiches. Any dinner that I prepared is always gluten free, whether my husband likes it or not. He eats out a lot, I stay home. I try to make simple dinners, not many ingredients, lunch lately has been bone broth. I think I have to ditch the Corn chex that I have for breakfast, I bought Cream of Rice, which is horrible. I do need to get dedicated gluten free pot/pans, I have dedicated gluten free utensils. Everything gets washed in the dishwasher, is that good or bad? I was keeping a food journal when I worked with the nutritionist but I stopped. I'll start it up again.
Thanks again, Tex.
Susanne
Thank you for the suggestions. I had a handle on my medications but 3 pharmacies later, I think it got goofed up. The budesonide I'm taking is Amneal and the website says "Contains corn starch. Corn contains gluten, but NOT gliaden gluten, the type associated with celiac sprue disease, and is generally considered harmless to those with gluten allergies." The levothyroxine is Mylan, their website says that it is not certified gluten free. I looked on a gluten free medication lists, I can't find budesonide at all but find Entocort EC. One list had Mylan listed for levothyroxine as gluten free. I believe that Lannett levothroxine is gluten free. I'm going to need refills soon so I will research a little more to make sure I get the gluten free ones. I recently stopped taking cyclobenzaprine and diazepam, I was way overtired the next day and I don't think they were helping me anymore. I did a check on my personal care products, I think I have to find a need hair conditioner but everything else seems to be gluten free. I do not have a gluten free kitchen so there is probably some cross contamination going on there. There isn't any wheat flour in the house but there is wheat bread in the freezer. I do not use the toaster and I try to prepare my meals away from the area that my husband makes his sandwiches. Any dinner that I prepared is always gluten free, whether my husband likes it or not. He eats out a lot, I stay home. I try to make simple dinners, not many ingredients, lunch lately has been bone broth. I think I have to ditch the Corn chex that I have for breakfast, I bought Cream of Rice, which is horrible. I do need to get dedicated gluten free pot/pans, I have dedicated gluten free utensils. Everything gets washed in the dishwasher, is that good or bad? I was keeping a food journal when I worked with the nutritionist but I stopped. I'll start it up again.
Thanks again, Tex.
Susanne
Hi Susanne,
I doubt that the levothyroxine is a problem, but I have no experience with it (I take Armour). Yes, corn gluten does not contain the amino acid sequences (peptides) that celiacs react to in wheat gluten, so it would be safe from that viewpoint. You are correct, though, that corn might be a problem, because many of us seem to react to it when we are recovering. I had to avoid it when I was recovering, but I can handle corn just fine now that I've been in remission for years. As long as you don't have any wheat flour in the house, your kitchen should be fine, as long as you are both careful. That is, as long as you wipe any counter tops to remove the crumbs, and wash your hands, before preparing your own food, there shouldn't be any problems.
I agree that Corn Chex might possibly be a problem while you are recovering. Generally, it's fine for most of us (as long as we're not permanently sensitive to corn) after we're in remission, but not necessarily while we are still recovering.
You know, I really don't know about dishwashers. I've never used one, personally. Theoretically, they should do a good job, especially if dishes that contained gluten are prerinsed manually. On the other hand, they can expose everything to gluten if they're not working correctly. I wonder if any other members have caught their dishwasher misbehaving, or if they just don't trust it.
Tex
I doubt that the levothyroxine is a problem, but I have no experience with it (I take Armour). Yes, corn gluten does not contain the amino acid sequences (peptides) that celiacs react to in wheat gluten, so it would be safe from that viewpoint. You are correct, though, that corn might be a problem, because many of us seem to react to it when we are recovering. I had to avoid it when I was recovering, but I can handle corn just fine now that I've been in remission for years. As long as you don't have any wheat flour in the house, your kitchen should be fine, as long as you are both careful. That is, as long as you wipe any counter tops to remove the crumbs, and wash your hands, before preparing your own food, there shouldn't be any problems.
I agree that Corn Chex might possibly be a problem while you are recovering. Generally, it's fine for most of us (as long as we're not permanently sensitive to corn) after we're in remission, but not necessarily while we are still recovering.
You know, I really don't know about dishwashers. I've never used one, personally. Theoretically, they should do a good job, especially if dishes that contained gluten are prerinsed manually. On the other hand, they can expose everything to gluten if they're not working correctly. I wonder if any other members have caught their dishwasher misbehaving, or if they just don't trust 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.