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I'm New- glad I found you- I have CC
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
I'm New- glad I found you- I have CC
Hi, I am new and very happy to have found you. I had previously been diagnosed with IBS-D many years ago and have been living with it. In the end of 2010, the symptoms changed and last week I was diagnosed with CC and put on Entocort. I am also being treated for osteoporsis (since 2003), fibromyalgia (since 2009) and underactive thyroid (since 2009). I also previously had a bad flair up of oral lichen planus (2005). Can anyone tell me if these are all related? The Dr. sure didn't. The Entocort has to be a temporary treatment for me because of my osteoporsis. The Dr. also never mentioned diet. I believe I have previously been tested for celiac but the outcome was negative but from reading some of your posts, I could still be gluten sensitive. I am looking to change my diet with the hope that it will help with the symptoms.
Hi Suzie,
Welcome to our internet family. Your history seems pretty typical, and is similar to what many of us here have experienced.
Yes, those issues are all related, because CC is almost always associated with other autoimmune diseases, and many of us here have, (or have had in the past), the same, (or similar), problems. The number of issues that you have already developed, suggests that you have been sensitive to gluten for quite a number of years, (the osteoporosis is extremely strong evidence of a long history of gluten-sensitivity). Your food sensitivities probably began before your "IBS" symptoms. "IBS" does not exist, of course - but that's another story. "IBS" is the default diagnosis that a doctor gives to a patient when he or she fails to take biopsies during a colonoscopy, and what it really means, is that they don't have the foggiest idea what is causing a patient's symptoms.
Once we develop MC, most of us who are gluten-sensitive, are also sensitive to casein, (the primary protein in all dairy products), and at least half of us are sensitive to soy, and all it's derivatives. Some of us have various other additional food sensitivities, but gluten is almost always the primary issue, that starts the process of developing food-sensitivities. The good news is that by avoiding our food-sensitivities, many/most of us are able to control our symptoms, and enjoy good health, again. For some of us, meds, (such as Entocort), are very helpful to bring remission faster than diet alone, so that we don't have to deal with reacting constantly, while we're trying to sort out our diet.
Most GI specialists have a long way to go, to get up to speed with learning how to treat this disease, but they are slowly making progress - at least they're doing a better job of diagnosing it, theses days. For decades they considered it to be a rare disease, so they never bothered to look for it, and it's impossible to diagnose MC, unless it is specifically tested for.
Their biggest obstacle, of course, is overcoming the long-held misconception that MC has nothing to do with diet. This came about, over the years, because no researcher ever bothered to prove that MC is diet-connected, (until recently), so GI docs mistakenly assumed that the disease has nothing to do with diet. (Of course, no one ever proved that MC was not diet-connected, either, so why would supposedly well-educated scientists, (doctors), make such a stupid assumption?)
Anyway, welcome to the board, and please feel free to ask anything.
Tex
Welcome to our internet family. Your history seems pretty typical, and is similar to what many of us here have experienced.
Yes, those issues are all related, because CC is almost always associated with other autoimmune diseases, and many of us here have, (or have had in the past), the same, (or similar), problems. The number of issues that you have already developed, suggests that you have been sensitive to gluten for quite a number of years, (the osteoporosis is extremely strong evidence of a long history of gluten-sensitivity). Your food sensitivities probably began before your "IBS" symptoms. "IBS" does not exist, of course - but that's another story. "IBS" is the default diagnosis that a doctor gives to a patient when he or she fails to take biopsies during a colonoscopy, and what it really means, is that they don't have the foggiest idea what is causing a patient's symptoms.
Once we develop MC, most of us who are gluten-sensitive, are also sensitive to casein, (the primary protein in all dairy products), and at least half of us are sensitive to soy, and all it's derivatives. Some of us have various other additional food sensitivities, but gluten is almost always the primary issue, that starts the process of developing food-sensitivities. The good news is that by avoiding our food-sensitivities, many/most of us are able to control our symptoms, and enjoy good health, again. For some of us, meds, (such as Entocort), are very helpful to bring remission faster than diet alone, so that we don't have to deal with reacting constantly, while we're trying to sort out our diet.
Most GI specialists have a long way to go, to get up to speed with learning how to treat this disease, but they are slowly making progress - at least they're doing a better job of diagnosing it, theses days. For decades they considered it to be a rare disease, so they never bothered to look for it, and it's impossible to diagnose MC, unless it is specifically tested for.
Their biggest obstacle, of course, is overcoming the long-held misconception that MC has nothing to do with diet. This came about, over the years, because no researcher ever bothered to prove that MC is diet-connected, (until recently), so GI docs mistakenly assumed that the disease has nothing to do with diet. (Of course, no one ever proved that MC was not diet-connected, either, so why would supposedly well-educated scientists, (doctors), make such a stupid assumption?)
Anyway, welcome to the board, and please feel free to ask anything.
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
Welcome, Suzie!
When I first found this group, I was astounded at how many other little symptoms turned out to be related. (I went through a phase of Googling 'whatever symptom' + gluten - I don't recommend this time-consuming activity, but WOW.)
The great news is that many people have had all kinds of seemingly unrelated symptoms improve when they get their diet figured out. That has been true for me, in just a few months. I hope the same will be true for you. I would guess that the longer we've had a particular issue, the longer it might take for things to begin to repair themselves (so don't be discouraged if you don't have instant improvement). I've had improvement in some hand numbness (which I was ignoring, thought it must be too much keyboard - but now believe it was gluten-induced peripheral neuropathy), in balance (again, just thought I was middle-aged and out of shape), and energy, as well as itchy ears and a couple of patches of itchy or rough skin.
The combo of Entocort and diet adjustment has been helpful to many here. I have been lucky so far to be able to get things under control with diet alone, as others here have, too. I started with 'severe' diet restrictions because my symptoms were so severe - in addition to relentless diarrhea, crushing fatigue and brain fog, weight loss, and - maybe memory loss because I don't remember that first week very well ;) Since your doctor is concerned about Entocort's effect on your bone density, you are wise to embrace diet change. That will give Entocort the best chance at getting you back on track, with the least risk of your symptoms coming back when you wean off it.
Wishing you speedy healing,
Sara
When I first found this group, I was astounded at how many other little symptoms turned out to be related. (I went through a phase of Googling 'whatever symptom' + gluten - I don't recommend this time-consuming activity, but WOW.)
The great news is that many people have had all kinds of seemingly unrelated symptoms improve when they get their diet figured out. That has been true for me, in just a few months. I hope the same will be true for you. I would guess that the longer we've had a particular issue, the longer it might take for things to begin to repair themselves (so don't be discouraged if you don't have instant improvement). I've had improvement in some hand numbness (which I was ignoring, thought it must be too much keyboard - but now believe it was gluten-induced peripheral neuropathy), in balance (again, just thought I was middle-aged and out of shape), and energy, as well as itchy ears and a couple of patches of itchy or rough skin.
The combo of Entocort and diet adjustment has been helpful to many here. I have been lucky so far to be able to get things under control with diet alone, as others here have, too. I started with 'severe' diet restrictions because my symptoms were so severe - in addition to relentless diarrhea, crushing fatigue and brain fog, weight loss, and - maybe memory loss because I don't remember that first week very well ;) Since your doctor is concerned about Entocort's effect on your bone density, you are wise to embrace diet change. That will give Entocort the best chance at getting you back on track, with the least risk of your symptoms coming back when you wean off it.
Wishing you speedy healing,
Sara
thanks so much
Hi Tex and Sara,
Thank you so much for replying, I now feel that I'm not crazy and there is hope. I remembered a few other things. In my 20's I had allergy testing done and the Dr. told me of some seasonal allergies I had but he also told me that I was allergic to egg whites, I eat eggs all of the time. So, the eggs are going. I also remember a few "IBS" episodes that were accompanying by a itching rash that the Dr. never really diagnosed as anything and I was given an ointment that did help clear it up. I haven't had the rash in a while though.
I am going to start by going gluten and diary free and hopefully it's going to help. I know I'm going to miss alot of foods that I enjoy but it's going to be worth it in the long run.
Thanks so much,
Susanne
Thank you so much for replying, I now feel that I'm not crazy and there is hope. I remembered a few other things. In my 20's I had allergy testing done and the Dr. told me of some seasonal allergies I had but he also told me that I was allergic to egg whites, I eat eggs all of the time. So, the eggs are going. I also remember a few "IBS" episodes that were accompanying by a itching rash that the Dr. never really diagnosed as anything and I was given an ointment that did help clear it up. I haven't had the rash in a while though.
I am going to start by going gluten and diary free and hopefully it's going to help. I know I'm going to miss alot of foods that I enjoy but it's going to be worth it in the long run.
Thanks so much,
Susanne
Dear Susanne,
Welcome!
I very much understand your concern about steriods and Osteoporosis. I am worried about this issue especially since I have gone back to taking one Entocort a day and have Osteoporosis.
If you can control the D with diet alone that is best, but if not I am not sure which is worse for thinning bones, lack of nutrition or the approx 10% of the Entocort that get into your system.
Also there seems to be a correlation between vitamin D deficiency and osteoporosis and autoimmune diseases like MC and Celiac. If you have not already done so you might want to have your vitamin D checked.
Best wishes on your journey to better health, ant
P.S. Here are two threads you might find of interest
http://www.perskyfarms.com/phpBB2/viewt ... teoporosis
http://www.perskyfarms.com/phpBB2/viewt ... teoporosis
Welcome!
I very much understand your concern about steriods and Osteoporosis. I am worried about this issue especially since I have gone back to taking one Entocort a day and have Osteoporosis.
If you can control the D with diet alone that is best, but if not I am not sure which is worse for thinning bones, lack of nutrition or the approx 10% of the Entocort that get into your system.
Also there seems to be a correlation between vitamin D deficiency and osteoporosis and autoimmune diseases like MC and Celiac. If you have not already done so you might want to have your vitamin D checked.
Best wishes on your journey to better health, ant
P.S. Here are two threads you might find of interest
http://www.perskyfarms.com/phpBB2/viewt ... teoporosis
http://www.perskyfarms.com/phpBB2/viewt ... teoporosis
----------------------------------------
"Softly, softly catchee monkey".....
"Softly, softly catchee monkey".....
Re: thanks so much
Great points, Ant.
Good for you. I hope it's worth it for you even in the short-to-medium run. It was for me. My husband was feeling very sorry for me because I was saying "NO thanks!" to so many things, but I was so happy about feeling better, I really wasn't sad about much of anything. As a friend of mine said, "You know, I've eaten a lot of cheese, and it was great." It's surprising what you don't miss when you find out it's out to get you
You're off to a great start,
Sara
Susanne,suzieq wrote:it's going to be worth it in the long run.
Good for you. I hope it's worth it for you even in the short-to-medium run. It was for me. My husband was feeling very sorry for me because I was saying "NO thanks!" to so many things, but I was so happy about feeling better, I really wasn't sad about much of anything. As a friend of mine said, "You know, I've eaten a lot of cheese, and it was great." It's surprising what you don't miss when you find out it's out to get you
You're off to a great start,
Sara
thanks for the welcome, ant
Hi Ant,
I read the information in the two links that you sent. I found them very interesting, thank you.
I took Fosamax from 2003 to 2010 and there was no significant improvement and in Dec. 2010 and Jan. 2011 had Reclast infusions. I have bone density scans every year. I see an endocrinologist for the osteoporosis and underactive thyroid. I do believe that bloodwork was done to test vitamin D levels. I will ask him at my next follow up appointment though, which is in 2 weeks. I take 1,200 mg of calcium a day and 1,600 iu vitamin D3 a day. I probably should take more calcium now that the entocort has a negative effect on bone density.
Thank you again,
Susanne
I read the information in the two links that you sent. I found them very interesting, thank you.
I took Fosamax from 2003 to 2010 and there was no significant improvement and in Dec. 2010 and Jan. 2011 had Reclast infusions. I have bone density scans every year. I see an endocrinologist for the osteoporosis and underactive thyroid. I do believe that bloodwork was done to test vitamin D levels. I will ask him at my next follow up appointment though, which is in 2 weeks. I take 1,200 mg of calcium a day and 1,600 iu vitamin D3 a day. I probably should take more calcium now that the entocort has a negative effect on bone density.
Thank you again,
Susanne
thanks for the encouragement
Sara,
Thank you for the encouragement, I'm looking forward to feeling better!! I will post my progress.
Susanne
Thank you for the encouragement, I'm looking forward to feeling better!! I will post my progress.
Susanne
Hello Susanne, welcome here, also from Jordan. I am sorry you're suffering from so many different diseases. I find dealing with MC only almost a day task. Like you I also struggled with bowel problems for almost 10 years (did not even bother seeing doctor was sure he would tell me IBS), until very quick it became much worse and in the end I was diagnosed with MC. I think I have had MC from the moment my bowel problems started.
Also like you I have osteoporoses (early stage osteopenia). I agree with Tex, I am almost 100% sure that this is caused by a gluten intolerance. Also like you and Ant, I am on entocort, one a day, I can't tolerate a higher dosage. Actually I am not that worried about this steroid and osteo. With entocort only 10 to 15% of the active ingredient reach the bloodstream, mostly only works local. But of course the higher the dosage, the higher the risk.
There are many many many people here that benefit from diet, gluten free, dairy free, soy free and a view have to avoid other things. It is really amazing how big the influence of food is. I have been in flare since early April (gradually getting worse), until it got really bad. I took really radical measurements in my diet (and I hope only temporary), it's only rice, fish, chicken, tea and olive oil. But it works I have my flair under control now (struggling with the C now). So I would really encourage you to start trying out what effect food changes will have on your MC, not as extreme I do at the moment, but what Tex and other have adviced you earlier.
And interesting you have Lichen Planus, I don't have it, but my father has it (recently discovered first my sister told me it was lupus, but she was wrong it is lichen planus). Probably we share to the auto immune genes (or better said I got them from my father).
Well I hope this board will be helpful for you and again welcome
Also like you I have osteoporoses (early stage osteopenia). I agree with Tex, I am almost 100% sure that this is caused by a gluten intolerance. Also like you and Ant, I am on entocort, one a day, I can't tolerate a higher dosage. Actually I am not that worried about this steroid and osteo. With entocort only 10 to 15% of the active ingredient reach the bloodstream, mostly only works local. But of course the higher the dosage, the higher the risk.
There are many many many people here that benefit from diet, gluten free, dairy free, soy free and a view have to avoid other things. It is really amazing how big the influence of food is. I have been in flare since early April (gradually getting worse), until it got really bad. I took really radical measurements in my diet (and I hope only temporary), it's only rice, fish, chicken, tea and olive oil. But it works I have my flair under control now (struggling with the C now). So I would really encourage you to start trying out what effect food changes will have on your MC, not as extreme I do at the moment, but what Tex and other have adviced you earlier.
And interesting you have Lichen Planus, I don't have it, but my father has it (recently discovered first my sister told me it was lupus, but she was wrong it is lichen planus). Probably we share to the auto immune genes (or better said I got them from my father).
Well I hope this board will be helpful for you and again welcome
"As the sense of identity shifts from the imaginary person to your real being as presence awareness, the life of suffering dissolves like mist before the rising sun"
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Joefnh
- Rockhopper Penguin
- Posts: 2478
- Joined: Wed Apr 21, 2010 8:25 pm
- Location: Southern New Hampshire
Hi Suzie and welcome from New Hampshire, like you I had several small issues before the MC started about 13 months ago. I had several years of intermittent D but not enough of an issue to pursue. I also was Dxd in the late 90s with FMS of which I am finding out now was just gluten and soy intolerance.
Entocort works fairly well and is not too much of concern for short to moderate term dosing as it does not have the same systemic potency of something like prednisone, so certainly for a few months at a time should be fine.
I have been tested for celiac disease as well twice using a blood test and both times it came back negative, yet I cannot tolerate gluten at all. Along with the gluten soy and dairy are also problems. I would say that soy for me is actually worse than gluten.
Like many here I also have other autoimmune conditions including Crohns disease and several allergies.
Overall this can be managed fairly well with diet alone for many and some from time to time take meds to make it through a flare up. You should keep in mind that a diet that avoids your sensitive foods is far more important than any meds.
I look forward to more of your posts Suzie
Joe
Entocort works fairly well and is not too much of concern for short to moderate term dosing as it does not have the same systemic potency of something like prednisone, so certainly for a few months at a time should be fine.
I have been tested for celiac disease as well twice using a blood test and both times it came back negative, yet I cannot tolerate gluten at all. Along with the gluten soy and dairy are also problems. I would say that soy for me is actually worse than gluten.
Like many here I also have other autoimmune conditions including Crohns disease and several allergies.
Overall this can be managed fairly well with diet alone for many and some from time to time take meds to make it through a flare up. You should keep in mind that a diet that avoids your sensitive foods is far more important than any meds.
I look forward to more of your posts Suzie
Joe
Joe
Susanne,
It might not be more calcium that you need (I am the fairy godmother of "add nothing, just subtract" - till your symptoms settle). Maybe when your gut begins to heal, you'll absorb better. Of course, Vitamin D is a big part of the story as calcium absorption goes, and this is a common issue for us... as is magnesium deficiency. But magnesium can have a laxative effect, so... postpone for now, is my advice. BUT that is always my advice, so you must take me with a grain of salt. (Sea salt - it's higher in magnesium!)
I am using a transdermal/topical magnesium now - just put that thought in the back of your mind for now! I truly hope that resolving diet offenders may bring you not only symptom relief, but osteoporosis help as well. My mother had terrible osteoporosis, and I suspect I inherited my celiac gene from her... So fingers crossed for both of us that our bones will rally and carry us on through many healthy years,
Sara
It might not be more calcium that you need (I am the fairy godmother of "add nothing, just subtract" - till your symptoms settle). Maybe when your gut begins to heal, you'll absorb better. Of course, Vitamin D is a big part of the story as calcium absorption goes, and this is a common issue for us... as is magnesium deficiency. But magnesium can have a laxative effect, so... postpone for now, is my advice. BUT that is always my advice, so you must take me with a grain of salt. (Sea salt - it's higher in magnesium!)
I am using a transdermal/topical magnesium now - just put that thought in the back of your mind for now! I truly hope that resolving diet offenders may bring you not only symptom relief, but osteoporosis help as well. My mother had terrible osteoporosis, and I suspect I inherited my celiac gene from her... So fingers crossed for both of us that our bones will rally and carry us on through many healthy years,
Sara
Hi Susanne 
I also have osteoporosis and was taking various dosages of Entocort for 4 years. In addition, I took Fosamax intermittently for a few years. I'm presently off Entocort and am hoping to maintain by diet alone. I take 1900 IUs of calcium per day and 2400 IUs of vitamin D in the summer, 4400 IUs in the winter.
You might find these threads helpful:
http://www.perskyfarms.com/phpBB2/viewtopic.phpt=9485
http://www.perskyfarms.com/phpBB2/viewtopic.php?t=9562
http://www.perskyfarms.com/phpBB2/viewtopic.php?p=69971
Oregon State University has designed an exercise program called "Better Bones and Balance" for persons with osteoporosis: http://extension.oregonstate.edu/physicalactivity/bbb One of our members is a retired faculty member from the university and uses the program for her osteopenia.
I tried taking Strontium, but it gave me headaches, so I stopped it. Some have reported great results from it.
Gloria
I also have osteoporosis and was taking various dosages of Entocort for 4 years. In addition, I took Fosamax intermittently for a few years. I'm presently off Entocort and am hoping to maintain by diet alone. I take 1900 IUs of calcium per day and 2400 IUs of vitamin D in the summer, 4400 IUs in the winter.
You might find these threads helpful:
http://www.perskyfarms.com/phpBB2/viewtopic.phpt=9485
http://www.perskyfarms.com/phpBB2/viewtopic.php?t=9562
http://www.perskyfarms.com/phpBB2/viewtopic.php?p=69971
Oregon State University has designed an exercise program called "Better Bones and Balance" for persons with osteoporosis: http://extension.oregonstate.edu/physicalactivity/bbb One of our members is a retired faculty member from the university and uses the program for her osteopenia.
I tried taking Strontium, but it gave me headaches, so I stopped it. Some have reported great results from it.
Gloria
You never know what you can do until you have to do it.
Susanne - Your history is so familiar. I was amazed when I found this website at how many health problems we all have in common. IBS, fibromyalgia, low thyroid, osteoporosis and MC all seem to go hand in hand. As do many other ailments. I asked the same question..are all of these things related in some way? I was sure that they had to be. It was through this website and all the wonderful people here that I found the answer. Every one of us have gluten intolerance and many of us also have various other food intolerances. My GI doesn't believe MC is related to food at all. I haven't been back to him since I had the Enterolab tests, but I plan to bring my results with me. I expect he'll shrug them off, but luckily I have an Internal Med. Dr. that looked at them and said that he thought I should get gluten out of my diet. I have, along with soy, dairy and eggs, which the tests showed I was reacting to. I feel so much better! I am also taking Entocort, which I know has helped calm things down. What is amazing to me is how the aches, fatigue and brain fog are lifting. I have more energy than I've had in many years.
I hope you are feeling better soon! Keep us posted.
Hugs,
Denise
"Be the change you want to see in this world."
Mahatma Gandhi
"Be the change you want to see in this world."
Mahatma Gandhi
There is also good bone-density info here: http://www.womentowomen.com/bonehealth/default.aspx - a friend has been helped quite a lot by these folks, both the articles and in person...
Thanks for this link - I'm glad to know about the program at Oregon State. My mother had severe osteoporosis, and though my bone density has been OK in the past, I am guessing that my chances of losing ground in this area have always been great, even before MC flared up.
I was taking a supplement that contained strontium at one point, and was tolerating it - but I do not have definitive bone density "before/after" measures to know that it helped, and am currently taking a very cautious approach to re-adding supplements.
Thanks for this link - I'm glad to know about the program at Oregon State. My mother had severe osteoporosis, and though my bone density has been OK in the past, I am guessing that my chances of losing ground in this area have always been great, even before MC flared up.
I was taking a supplement that contained strontium at one point, and was tolerating it - but I do not have definitive bone density "before/after" measures to know that it helped, and am currently taking a very cautious approach to re-adding supplements.