Hello everyone!
I am a great lurker on this site but now I could use your help. I have had MCC for a few years with several flare ups. I am now down to two 800mg of Asacol daily. My problem is a pain on my right side just above the hip bone. I also have very bad osteoarthritis and will need a knee replacement.... Anyway, yesterday my legs were really achy, I felt very tired and sure enough later that night D started... My Gastro said there is absolutely no connection with leg pain, arthritis, and my type of colitis. Have any of you experienced similar issues and your flares?
Numerous questions!!
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Hi Margaret,
To cut to the chase, I have to point out that your GI doc apparently knows very little about the real world issues associated with microscopic colitis. Medical articles published as far back as 30 years ago (soon after the disease was originally described), pointed out that arthritis and various autoimmune diseases are associated with the disease. And most of us here (though not everyone), have experienced arthritis and other autoimmune-type symptoms when our MC was/is active. Your doctor is in desperate need of upgrading his education about MC. He is doing his patients a grave disservice by spreading incorrect information about the disease, and then charging for his advice as if he is actually an expert on the disease.
In my own case, when I began to react, my arthritis symptoms became so bad that on some days I had to use a cane in order to be able to walk. After I changed my diet, all my symptoms slowly went away (both MC and arthritis, and the symptoms of a couple of other autoimmune diseases, also). That was roughly 10 years ago, and I haven't had any need for a cane at any time since.
If you are still eating gluten, please be aware that in addition to being the number one trigger for microscopic colitis, untreated gluten sensitivity also appears to be the number one cause of osteoporosis.
If you are trying to treat your MC with Asacol, rather than with diet changes, then the reason for the return of your symptoms is probably associated with reducing your dosage of Asacol. Anti-inflammatory drugs can control the symptoms of MC for some patients, but as soon as the dosage is reduced or discontinued, the symptoms will return, because as long as the foods that are causing the inflammation remain in the diet, the drugs have to be taken continuously, at a dosage level high enough to suppress most of the inflammation. In other words without diet changes, the inflammation continues to be generated, so the drugs have to be continued in order to mask the symptoms.
Tex
To cut to the chase, I have to point out that your GI doc apparently knows very little about the real world issues associated with microscopic colitis. Medical articles published as far back as 30 years ago (soon after the disease was originally described), pointed out that arthritis and various autoimmune diseases are associated with the disease. And most of us here (though not everyone), have experienced arthritis and other autoimmune-type symptoms when our MC was/is active. Your doctor is in desperate need of upgrading his education about MC. He is doing his patients a grave disservice by spreading incorrect information about the disease, and then charging for his advice as if he is actually an expert on the disease.
In my own case, when I began to react, my arthritis symptoms became so bad that on some days I had to use a cane in order to be able to walk. After I changed my diet, all my symptoms slowly went away (both MC and arthritis, and the symptoms of a couple of other autoimmune diseases, also). That was roughly 10 years ago, and I haven't had any need for a cane at any time since.
If you are still eating gluten, please be aware that in addition to being the number one trigger for microscopic colitis, untreated gluten sensitivity also appears to be the number one cause of osteoporosis.
If you are trying to treat your MC with Asacol, rather than with diet changes, then the reason for the return of your symptoms is probably associated with reducing your dosage of Asacol. Anti-inflammatory drugs can control the symptoms of MC for some patients, but as soon as the dosage is reduced or discontinued, the symptoms will return, because as long as the foods that are causing the inflammation remain in the diet, the drugs have to be taken continuously, at a dosage level high enough to suppress most of the inflammation. In other words without diet changes, the inflammation continues to be generated, so the drugs have to be continued in order to mask the symptoms.
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.
Numerous questions...
Thank you so much, Tex!! I really thought I might be loosing my mind over all these ailments hitting at the same time! Guess it's time to start a gluten free diet!!! It's so strange this Doctor thinks the symptoms don't go hand in hand!! May be time for a new Doctor!!!
Wow! I would hate to think that I can barely get up and down stairs because of some other ailment I have that is unrelated to my MC! I cannot believe that doctors are such ostriches about how things relate to one another. If you have been working with this disease for several years and your doctor has mentioned nothing about diet, IMO (and you didn't ask for it 
) you should start looking for another doctor. The problem is that the docs who understand this disease are few and far between. I suggest that you look at the list of good docs Tex has compiled and see if there is one close to you.
) you should start looking for another doctor. The problem is that the docs who understand this disease are few and far between. I suggest that you look at the list of good docs Tex has compiled and see if there is one close to you.Jane
Diagnosed with Lymphocytic Colitis 12/19/12
"When it gets dark enough,you can see the stars."
Charles A. Beard
Diagnosed with Lymphocytic Colitis 12/19/12
"When it gets dark enough,you can see the stars."
Charles A. Beard
Margaret,
The link below will take you to the list that Jane is referring to, if you click on it:
List Of Doctors Who Are Very Helpful For Treating MC, CC, LC
Tex
The link below will take you to the list that Jane is referring to, if you click on it:
List Of Doctors Who Are Very Helpful For Treating MC, CC, LC
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.
In church last week I noticed a not-that-old woman come in with unhealthy looking white hair and definite osteoporosis. She seemed to have an issue focusing.untreated gluten sensitivity also appears to be the number one cause of osteoporosis.
The first thing that ran through my head was, "I wonder if she eats gluten?"
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wmonique2
- Rockhopper Penguin
- Posts: 1048
- Joined: Fri Aug 03, 2012 9:06 am
- Location: Georgia, U.S
- Contact:
numerous questions
Tex,
You told Margaret the following:
"If you are trying to treat your MC with Asacol, rather than with diet changes, then the reason for the return of your symptoms is probably associated with reducing your dosage of Asacol. Anti-inflammatory drugs can control the symptoms of MC for some patients, but as soon as the dosage is reduced or discontinued, the symptoms will return, because as long as the foods that are causing the inflammation remain in the diet, the drugs have to be taken continuously, at a dosage level high enough to suppress most of the inflammation. In other words without diet changes, the inflammation continues to be generated, so the drugs have to be continued in order to mask the symptoms. "
Not in my case. I've been GF for more than a year, added SF and many more restrictions this last year and I still have to take mesalamine. I reduced from 3 pills/day to 2 then 1. On 2 I did OK then when I reduced to 1, I had to add an anti-histamine. Then eliminated that last pill to zero for 24 hours and all my stomach cramps and more bm's returned. So now I am back on 2 mesalamine. No anti histamine.
I am fanatic about my diet so it's not the food I eat. I want to say that inflammation is hard to control sometimes EVEN IF YOU DO ALL THE RIGHT THINGS. Or maybe I haven't had sufficient healing yet. Any ideas, Tex?
(Also, am I EVER gonna know how to use your "quote" thing? When I try it, I get all of the text copied. What am I doing wrong? Maybe you'll reiterate it again for my benefit and those who are too stubborn to learn it
)
Love,
Monique
You told Margaret the following:
"If you are trying to treat your MC with Asacol, rather than with diet changes, then the reason for the return of your symptoms is probably associated with reducing your dosage of Asacol. Anti-inflammatory drugs can control the symptoms of MC for some patients, but as soon as the dosage is reduced or discontinued, the symptoms will return, because as long as the foods that are causing the inflammation remain in the diet, the drugs have to be taken continuously, at a dosage level high enough to suppress most of the inflammation. In other words without diet changes, the inflammation continues to be generated, so the drugs have to be continued in order to mask the symptoms. "
Not in my case. I've been GF for more than a year, added SF and many more restrictions this last year and I still have to take mesalamine. I reduced from 3 pills/day to 2 then 1. On 2 I did OK then when I reduced to 1, I had to add an anti-histamine. Then eliminated that last pill to zero for 24 hours and all my stomach cramps and more bm's returned. So now I am back on 2 mesalamine. No anti histamine.
I am fanatic about my diet so it's not the food I eat. I want to say that inflammation is hard to control sometimes EVEN IF YOU DO ALL THE RIGHT THINGS. Or maybe I haven't had sufficient healing yet. Any ideas, Tex?
(Also, am I EVER gonna know how to use your "quote" thing? When I try it, I get all of the text copied. What am I doing wrong? Maybe you'll reiterate it again for my benefit and those who are too stubborn to learn it
)Love,
Monique
Diagnosed 2011 with LC. Currently on Low Dose Naltrexone (LDN)
I don't know how to do the "quote thing" either.... I'm horrible with the computer ( eye roll)
Sorry to hear Monique, that you still have not found relief yet :( Maybe there is some sort of protein that is causing it. There are a few on this board that find they are reacting to chicken or beef?????? I also noticed that you are still eating dairy. Could that be it? Eggs? Did you do Enterolab testing? I can't remember.
I think for you Margaret, a gluten free diet is in order. It may take a while to see results so hang in there. Gluten's antibodies stay in the system for months. It seems the longer you are GF, the better you feel. Remember to read all labels. It's hidden in everything!
Hope you feel better soon
Leah
Sorry to hear Monique, that you still have not found relief yet :( Maybe there is some sort of protein that is causing it. There are a few on this board that find they are reacting to chicken or beef?????? I also noticed that you are still eating dairy. Could that be it? Eggs? Did you do Enterolab testing? I can't remember.
I think for you Margaret, a gluten free diet is in order. It may take a while to see results so hang in there. Gluten's antibodies stay in the system for months. It seems the longer you are GF, the better you feel. Remember to read all labels. It's hidden in everything!
Hope you feel better soon
Leah
Well, nothing is chiseled in stone, but the odds are very high that something in your diet is tripping up your recovery efforts. The last piece of the puzzle can often be extremely difficult to track down. It could be low-level gluten cross-contamination, or some other food, a supplement, a seasoning, or???.Monique wrote:I am fanatic about my diet so it's not the food I eat. I want to say that inflammation is hard to control sometimes EVEN IF YOU DO ALL THE RIGHT THINGS. Or maybe I haven't had sufficient healing yet. Any ideas, Tex?
I thought that I was avoiding gluten, but a little over a year ago when I ordered an EnteroLab test, I found that cross-contamination was obviously a regular problem for me. I had to make some more changes to avoid it. Whenever researchers study celiacs who are refractory to treatment, they always find that in roughly 70 % or better of cases, enough gluten is creeping into their diet to prevent remission. A lot of foods that are thought to be GF, are not — they contain enough gluten to cause those of us who are more sensitive than average, to react.
Edit:
I see that Leah has already beat me to the casein issue before I got around to finishing my post, but rather than to redo my post, I'll just add this note.
Have you ever had an EnteroLab test to rule out casein sensitivity? It appears that in some cases, cross-reactivity can be a problem. IOW, I believe that we can develop a tolerance to a certain food, but we continue to produce antibodies to it, and those antibodies can cause us to react to some secondary food or foods.
For years, I thought that I was not sensitive to dairy, because it didn't seem to cause any clinical symptoms. I found that I was producing antibodies to it, though, so obviously I had merely developed a tolerance for it.
Concerning quoting text, what you describe is the way that the quote button in someone else's post works. Just cut out (delete) all of the text that you do not want in the quote, and leave the part that you want to quote. But be sure to also leave the bulletin board code (BBCode) for the start and end of the quote, namely, the [*quote] and the [*/quote] code that the system adds to your text. Note that I had to add a "*" in each example of code, to prevent everyone's browser from interpreting all the text between them as a quote, instead of displaying the code that I listed. When you format a quote, the "*" will not be there.
The second way to use a quote is to use the "copy" option in your browser for any text you want to use in a quote, and paste it into your message-composing window. Then highlight it with your mouse (by placing your mouse cursor at one end of the text, holding down the left mouse button, and dragging the cursor across all the text that you want to quote). Then release the mouse button, and click on the "Quote" button above the message-composing window, and the system will automatically add the proper BBCode to your text.
The third way to use a quote is to add the text that you wish to quote, and then manually add the BBCode to convert it into a quote. IOW, add [*quote] in front of the text to be quoted, and add [*/quote] at the end of the text to be quoted. BUT, as I mentioned above, omit the "*" in the code, so that browsers will correctly interpret it as a quote.
This is how a quote will appear in your message-composing window before you submit it (except that it won't be in a separate box as I've displayed it here, and it won't be green). I posted this as code, (using the "Code" button above the window) so that it will display properly without a need for an asterisk (any other character will also work in place of an asterisk, to prevent browsers from interpreting the code):
Code: Select all
[quote]The text that you want to display as a quote will be here.[/quote]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.
Dear Monique
Here is how I do it (I use and Apple computer and the Firefox browser, but think it is the same for most other software and browsers.)
1. Press the return button on your keyboard to create a space from what you are typing....
2. highlight the text you want to quote.
3. go to the top of the computer screen and click "Edit"
4. When you click "Edit" a number of choices will appear including "Copy". Click "Copy" (this stores the text you highlighted in your computer's memory
5. Now click the "Quote" button on the Potty People screen. You can see it above the text box you are writing in. The word "quote" with [ ] around it will appear in the text box.
6. go to the top of the computer screen and click "Edit" and this time click "Paste" (it will paste the text you had highlighted in the text box after the word "quote")
7. Now click the "Quote*" button on the Potty People screen. It is in the same place as the "Quote" button (but automatically now has a * to indicate it is used to end the quote). The word "quote" with [/ ] around it will appear in the text box after the text you want to quote.
8. Press the return button on your keyboard to create a space and continue your typing....
I hope that works for you.
Best Ant
EDIT Just saw Tex answered as I was still typing......
(Also, am I EVER gonna know how to use your "quote" thing? When I try it, I get all of the text copied. What am I doing wrong? Maybe you'll reiterate it again for my benefit and those who are too stubborn to learn it Laughing )
Here is how I do it (I use and Apple computer and the Firefox browser, but think it is the same for most other software and browsers.)
1. Press the return button on your keyboard to create a space from what you are typing....
2. highlight the text you want to quote.
3. go to the top of the computer screen and click "Edit"
4. When you click "Edit" a number of choices will appear including "Copy". Click "Copy" (this stores the text you highlighted in your computer's memory
5. Now click the "Quote" button on the Potty People screen. You can see it above the text box you are writing in. The word "quote" with [ ] around it will appear in the text box.
6. go to the top of the computer screen and click "Edit" and this time click "Paste" (it will paste the text you had highlighted in the text box after the word "quote")
7. Now click the "Quote*" button on the Potty People screen. It is in the same place as the "Quote" button (but automatically now has a * to indicate it is used to end the quote). The word "quote" with [/ ] around it will appear in the text box after the text you want to quote.
8. Press the return button on your keyboard to create a space and continue your typing....
I hope that works for you.
Best Ant
EDIT Just saw Tex answered as I was still typing......
----------------------------------------
"Softly, softly catchee monkey".....
"Softly, softly catchee monkey".....
-
wmonique2
- Rockhopper Penguin
- Posts: 1048
- Joined: Fri Aug 03, 2012 9:06 am
- Location: Georgia, U.S
- Contact:
numerous questions
Tex,
My last attempt to eliminate mesalamine was last month. I weaned myself slowly but soon as I stayed without it for 24 hours, cramps and more bm's returned en masse which tells me that I am not healed YET. I take 2 of them a day. I was taking 3 + entecort + elavil when I was in full flare when I joined this board. Now I take 2/day which is what I took when I was first diagnosed and up until that awful flare I had (thanks to those who advised to eat lots of fruits and vegies to someone like me)
I have a theory. I think that it's taking me longer than the average person because of diabetes. For everything that I have ever had, it has taken twice as long to heal then normal people. When I get sick, I get REALLY sick, no half measures. And when I start healing, it takes twice as long. Just a theory.
Leah---thanks for your concern. I just responded here to your questions. Any thoughts?
Ant--thanks for your instructions. We'll find out whether it works :-)
Love,
Monique
Thanks for your comment but I have no idea why I am still on mesalamine 20 months after diagnosis. I did the enterolab test a few months ago when I tested positive for gluten and soy. I didn't test positive on anything else including dairy, chicken, tuna. I actually was abstaining from dairy when I found out that I could have it. I am positively GF, I don't even buy mixed spices, I mix my own. Since I have hardly no fruits or vegies (one a day for each) I find that I eat more dairy (like one yoghurt or cottage cheese a day). I don't know that enterolab tested for casein...I need to read that report again.Well, nothing is chiseled in stone, but the odds are very high that something in your diet is tripping up your recovery efforts. The last piece of the puzzle can often be extremely difficult to track down. It could be low-level gluten cross-contamination, or some other food, a supplement, a seasoning, or???.
I thought that I was avoiding gluten, but a little over a year ago when I ordered an EnteroLab test, I found that cross-contamination was obviously a regular problem for me. I had to make some more changes to avoid it. Whenever researchers study celiacs who are refractory to treatment, they always find that in roughly 70 % or better of cases, enough gluten is creeping into their diet to prevent remission. A lot of foods that are thought to be GF, are not — they contain enough gluten to cause those of us who are more sensitive than average, to react.
My last attempt to eliminate mesalamine was last month. I weaned myself slowly but soon as I stayed without it for 24 hours, cramps and more bm's returned en masse which tells me that I am not healed YET. I take 2 of them a day. I was taking 3 + entecort + elavil when I was in full flare when I joined this board. Now I take 2/day which is what I took when I was first diagnosed and up until that awful flare I had (thanks to those who advised to eat lots of fruits and vegies to someone like me)
I have a theory. I think that it's taking me longer than the average person because of diabetes. For everything that I have ever had, it has taken twice as long to heal then normal people. When I get sick, I get REALLY sick, no half measures. And when I start healing, it takes twice as long. Just a theory.
Leah---thanks for your concern. I just responded here to your questions. Any thoughts?
Ant--thanks for your instructions. We'll find out whether it works :-)
Love,
Monique
Diagnosed 2011 with LC. Currently on Low Dose Naltrexone (LDN)
Hmmm. What about sugar and sugar alcohols? I think I am pretty intolerant to doses of both of these. One time, I ate about 3 servings of coconut sorbet and had the runs bad! Now, I notice when I eat more then a little of either sweetener.
Your Enterolab should have tested Casein on panel A. I think I remember you being so happy that your number was low, but maybe you should check it... or maybe you developed the sensitivity later?
Leah
Your Enterolab should have tested Casein on panel A. I think I remember you being so happy that your number was low, but maybe you should check it... or maybe you developed the sensitivity later?
Leah
-
wmonique2
- Rockhopper Penguin
- Posts: 1048
- Joined: Fri Aug 03, 2012 9:06 am
- Location: Georgia, U.S
- Contact:
numerous questions
Leah,
yeah, I did test for casein -----7 (out of 10). I wonder if, indeed, I did develop an allergy AFTER I tested. Is that possible?
I tested good on eggs too so I eat them occasionally, not often.
lots of people can't have sugar alcohols. I have very little of those. I have stevia only sometimes for tea. nothing else. No sodas ever. When I want something sweet I usually have yoghurt already sweetened or dry fruits like raisins or cranberries or dried cherries.
Love,
Monique
yeah, I did test for casein -----7 (out of 10). I wonder if, indeed, I did develop an allergy AFTER I tested. Is that possible?
I tested good on eggs too so I eat them occasionally, not often.
lots of people can't have sugar alcohols. I have very little of those. I have stevia only sometimes for tea. nothing else. No sodas ever. When I want something sweet I usually have yoghurt already sweetened or dry fruits like raisins or cranberries or dried cherries.
Love,
Monique
Diagnosed 2011 with LC. Currently on Low Dose Naltrexone (LDN)
I'm sure your right. That never occurred to me, but yes, anyone who has diabetes has trouble mounting the proper inflammatory response in order to initiate healing (the first stage of healing is inflammation). And hyperglycemia has been correlated with impaired wound healing.Monique wrote:I have a theory. I think that it's taking me longer than the average person because of diabetes. For everything that I have ever had, it has taken twice as long to heal then normal people. When I get sick, I get REALLY sick, no half measures. And when I start healing, it takes twice as long. Just a theory.
The reason why MC exists, is because instead of all the inflammation that's associated with the disease leading to healing (as it normally would), the intestinal mucosa gets stuck in the first stage of the healing process (presumably because of the presence of too many T cells ), resulting in perpetual inflammation. And without intervention, it can't break out of the gridlock, no matter how much time passe. So with that in mind, it's easy to see why diabetes could compound the problem, and make healing even more difficult.
And the problem with anti-inflammatory drugs is that they retard healing by suppressing inflammation. So healing becomes a very complex problem, with all these things going on.
That may be possible, because casein sensitivity may be a molecular mimicry problem. That would mean that the longer a reaction to gluten continues, and the more damage accrues, the more likely additional sensitivities may develop, because of molecular mimicry.Monique wrote:yeah, I did test for casein -----7 (out of 10). I wonder if, indeed, I did develop an allergy AFTER I tested. Is that possible?
It's also possible that you might be sensitive to one of the other proteins in dairy products, such as whey protein, for example. ELISA tests are very specific, so EnteroLab only tests for the protein most likely to cause most people to react, and that is casein. They don't test for whey protein, or any of the others.
Love,
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.
-
wmonique2
- Rockhopper Penguin
- Posts: 1048
- Joined: Fri Aug 03, 2012 9:06 am
- Location: Georgia, U.S
- Contact:
numerous questions
Tex,
Thanks for your response and for expanding on the topic. I know that diabetes is my Achilles' heel...
I might try to go without dairy since it is the last frontier in my regimen and then I'll go and visit Leah in SFO and jump off that bridge
Love,
Monique
Thanks for your response and for expanding on the topic. I know that diabetes is my Achilles' heel...
I might try to go without dairy since it is the last frontier in my regimen and then I'll go and visit Leah in SFO and jump off that bridge
Love,
Monique
Diagnosed 2011 with LC. Currently on Low Dose Naltrexone (LDN)