Visit the Microscopic Colitis Foundation Website
Hello Everyone,
You have restored my hope. I found you two days ago which was exactly one year to the day that I woke up at 2:00 am with horrible D and have lived with it every day since. Initially referred to surgeon for gall bladder removal. Before scheduled appointment, went to ER, hospitalized, gall bladder ruled out, dx with MC. I was on Entocort for 11 months with very limited results. After research, I asked Gastroenterologist if gluten could be related to MC and was told "NO....allergies not related." Intolerance or stool test was not discussed.
I've had every symptom discussed in your posts. I was not diagnosed with endometriosis, but did have fibroids. Glad to read comments concerning stress and Fibromyalgia b/c I suspected to be related. If it walks like a duck and quacks like a duck.... Dad was diagnosed with LC before he died in '09 of "Failure To Thirve," and he had Alzheimer's so Dr did not want to treat LC as both result in failure to thrive.
Previously outgoing, I would normally "take the bull by the horns" and just handle things, don't like to whine. But, I rarely leave home unless absolutely necessary. Feel like something has caught up with me and won't let go. In recent years, it's become a push to do things and then often become ill afterward. Also, I have sleep deprivation due to being up so many times at night - often every 20 minutes for several hours (just about the time I dose off).
Everything I eat or drink causes D almost immediately, even water. I keep crushed ice handy. I Suspect I may be GI, DI and who know's what else. Uncertain on which Enterolab test to do or appropriate next step??? I'll appreciate any suggestions.
Thanks to all for sharing your knowledge, experience and dedication.
Brenda
Hopeful!
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Brenda!!You've certainly been through a lot. Have your doctors already tested you for celiac disease with blood tests and/or biopsies? Most here test negative, but it's good to rule out a full-blown case of celiac (since most insurance will cover it). Enterolab testing was the smartest thing I did after my GI refused to test e for celiac.
Back then, I did the complete panel for gluten, dairy, soy, eggs and yeast, plus the gene test for the HLA DQ genes. I understand there are more tests available now, but none are as helpful as this initial panel. I'm in remission after 1.5 years on the GF/DF, mostly soy free diet, and I never used a single prescription, only Pepto Bismol. You can get your life back. Just read everything you can here and know it takes time to heal.
Thanks, Zizzle, for the colorful Welcome! Only biopsies a year ago for MC. Your comment is helpful on complete panel and gene test, will proceed.
Congrats on your remission! I'm so proud you never used a prescription. I've used many prescriptions for Fibromyalgia, arthritis, thyroid, GERD, etc. Prefer proper diet and walking my four-legged pals!
Congrats on your remission! I'm so proud you never used a prescription. I've used many prescriptions for Fibromyalgia, arthritis, thyroid, GERD, etc. Prefer proper diet and walking my four-legged pals!
Hi Brenda,
Welcome to our internet family. For such highly-educated individuals, most GI specialists never cease to amaze me with their assumption that diet has nothing to do with MC. I know that it's nothing more than an assumption, because there have never been any scientific studies that proved that diet does not affect MC. So why do they make such a dumb assumption? Claiming that what we eat has nothing to do with digestive system problems, is like insisting that the quality of the air we breathe has nothing to do with asthma, hay fever, emphysema, lung diseases, etc.
Diet actually has almost everything to do with MC. For most of us, the inflammation that is associated with the disease is caused by an autoimmune reaction triggered by sensitivities to certain foods. Virtually all of us are sensitive to gluten and casein, (the primary protein in all dairy products), and about half of us are also sensitive to soy and most other legumes. Some of us have other food-sensitivities as well. The longer we continue to react, the more likely we are to develop additional food-sensitivities, and the more likely we are to develop additional autoimmune diseases. Anti-inflammatory drugs can help to suppress the inflammation, but they cannot prevent it from redeveloping, as long as we continue to eat the foods to which we are sensitive. That's why everyone relapses, as soon as the drugs are discontinued, but the gastroenterologists just can't seem to get it.
The only exception to food-sensitivities as the driving force behind MC, is for those with drug-induced MC. For some people whose MC was triggered by a drug, in many cases, just avoiding the drug in the future will bring remission. Not everyone is so lucky, though, especially those who have been reacting for a long time before discontinuing the drug. They often develop food-sensitivities, also.
If you have been taking a PPI for GERD, please be aware that it is one of the common causes of MC, and in cases of drug-induced MC, diet usually won't bring remission as long as the drug is still being used. Other common drug triggers include NSAIDS, SSRIs, SNRIs, statins, bisphosphonates, beta-blockers, etc.
Again, welcome aboard, and please feel free to ask anything.
Tex (Wayne)
Welcome to our internet family. For such highly-educated individuals, most GI specialists never cease to amaze me with their assumption that diet has nothing to do with MC. I know that it's nothing more than an assumption, because there have never been any scientific studies that proved that diet does not affect MC. So why do they make such a dumb assumption? Claiming that what we eat has nothing to do with digestive system problems, is like insisting that the quality of the air we breathe has nothing to do with asthma, hay fever, emphysema, lung diseases, etc.
Diet actually has almost everything to do with MC. For most of us, the inflammation that is associated with the disease is caused by an autoimmune reaction triggered by sensitivities to certain foods. Virtually all of us are sensitive to gluten and casein, (the primary protein in all dairy products), and about half of us are also sensitive to soy and most other legumes. Some of us have other food-sensitivities as well. The longer we continue to react, the more likely we are to develop additional food-sensitivities, and the more likely we are to develop additional autoimmune diseases. Anti-inflammatory drugs can help to suppress the inflammation, but they cannot prevent it from redeveloping, as long as we continue to eat the foods to which we are sensitive. That's why everyone relapses, as soon as the drugs are discontinued, but the gastroenterologists just can't seem to get it.
The only exception to food-sensitivities as the driving force behind MC, is for those with drug-induced MC. For some people whose MC was triggered by a drug, in many cases, just avoiding the drug in the future will bring remission. Not everyone is so lucky, though, especially those who have been reacting for a long time before discontinuing the drug. They often develop food-sensitivities, also.
If you have been taking a PPI for GERD, please be aware that it is one of the common causes of MC, and in cases of drug-induced MC, diet usually won't bring remission as long as the drug is still being used. Other common drug triggers include NSAIDS, SSRIs, SNRIs, statins, bisphosphonates, beta-blockers, etc.
Again, welcome aboard, and please feel free to ask anything.
Tex (Wayne)
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.
Concerning the Enterolab tests, my favorite panel is Panel B, since it includes the gene test, but if you can afford it, Panel A is more extensive, (except that it doesn't include the gene test), and while the results of panel C are not as specific as the other tests, it can be helpful to pin down additional food-sensitivities, if you can afford it. The most common sensitivities are gluten, casein, soy, and eggs, but other than gluten and casein, (to which almost all of us are sensitive), additional food-sensitivities can be very different, from one member to the next.
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.
-
humbird753
- Rockhopper Penguin
- Posts: 1014
- Joined: Mon Nov 28, 2011 4:44 pm
- Location: Wisconsin
Welcome, Brenda...
I am glad you found this group. My first visit was Nov. 28, 2011, and I am very grateful I found it.
Sorry to hear you've been having a very hard time. The good news is that with the diet changes and all the wisdom you will receive here, improvements will come. I have had extreme D for 2-1/2 years, but since going on a GF/DF/SF diet about 5 weeks ago I am already seeing positive changes. I have not had the Enterolab testing yet, but am considering that too. I know I have a long way to go, but I already find that when I go shopping I don't even look for a bathroom; whereas, I was ALWAYS mapping out where bathrooms were. I am also feeling more energy and stamina.
Paula
I am glad you found this group. My first visit was Nov. 28, 2011, and I am very grateful I found it.
Sorry to hear you've been having a very hard time. The good news is that with the diet changes and all the wisdom you will receive here, improvements will come. I have had extreme D for 2-1/2 years, but since going on a GF/DF/SF diet about 5 weeks ago I am already seeing positive changes. I have not had the Enterolab testing yet, but am considering that too. I know I have a long way to go, but I already find that when I go shopping I don't even look for a bathroom; whereas, I was ALWAYS mapping out where bathrooms were. I am also feeling more energy and stamina.
Paula
Paula
"You'll never know how strong you are until being strong is the only choice you have."
"Life is not about waiting for the storm to pass... It's learning to dance in the rain."
"You'll never know how strong you are until being strong is the only choice you have."
"Life is not about waiting for the storm to pass... It's learning to dance in the rain."
Y'all are a wealth of information, and I hope I can contribute back as I learn more. You may have already seen this, but want to post a link just in case.
http://www.glutenfreerestaurants.org/
My son invited me out to dinner this evening, and I declined as I'm not feeling up to it. However, the invitation did spur me to look further for a restaurant to visit in the future.
Brenda
http://www.glutenfreerestaurants.org/
My son invited me out to dinner this evening, and I declined as I'm not feeling up to it. However, the invitation did spur me to look further for a restaurant to visit in the future.
Brenda
It is important to be able to sacrifice what we are for what we can become.
unk
unk
-
draperygoddess
- Rockhopper Penguin
- Posts: 558
- Joined: Mon Aug 29, 2011 6:49 am
- Location: Tennessee
Hi, Brenda!
Welcome to the forum! I will second everything said here, plus add that you can eliminate gluten right away, even if you intend to do Enterolab testing later, because the gluten antibodies stick around much longer than those for other foods. It will probably go a long way to helping you feel better.
I am one of those whose symptoms were induced by a drug (Zoloft in my case), but by the time I got really sick I had been taking it for 6 or 7 years, and I had already developed several intolerances. The good thing is that eliminating both the Zoloft and my food triggers got me to remission. It's worth considering.
Hope you find the answers you're looking for, and if you can't, ask!
Welcome to the forum! I will second everything said here, plus add that you can eliminate gluten right away, even if you intend to do Enterolab testing later, because the gluten antibodies stick around much longer than those for other foods. It will probably go a long way to helping you feel better.
I am one of those whose symptoms were induced by a drug (Zoloft in my case), but by the time I got really sick I had been taking it for 6 or 7 years, and I had already developed several intolerances. The good thing is that eliminating both the Zoloft and my food triggers got me to remission. It's worth considering.
Hope you find the answers you're looking for, and if you can't, ask!
Cynthia
"Can we fix it? YES WE CAN!" -Bob the Builder
"Can we fix it? YES WE CAN!" -Bob the Builder
Welcome Brenda! I was in total despair when I found this forum. I had D 24/7, and was exhausted, couldn't keep anything in me, couldn't go out of the house, and was feeling like I was dying.
I am sure my MC was drug induced because I have been on many, many meds over the years, and have had horrible GERD for which I used PPIs, also for years. I am also on pain pills for my back injury, and a variety of others for a variety of ills.
I have numerous sensitivities, and continue to struggle with pain and mostly C, but I am certainly better than I was, and am MORE than thankful for the guys here.
so ask questions, report on progress and you will get support and advice for going forward.
I am sure my MC was drug induced because I have been on many, many meds over the years, and have had horrible GERD for which I used PPIs, also for years. I am also on pain pills for my back injury, and a variety of others for a variety of ills.
I have numerous sensitivities, and continue to struggle with pain and mostly C, but I am certainly better than I was, and am MORE than thankful for the guys here.
so ask questions, report on progress and you will get support and advice for going forward.
Welcome, Brenda.
My doctor, too, told me that diet was not involved. So not true. Entocort worked for me, but I relapsed a month after going off it, just as he told me I would. He also told me that coconut macaroons helped one of his patients with MC, so that sent me on a hunt for information. I found this forum, and decided, what did I have to lose?
I went gluten free in October 2010, and dairy and soy free two months later, after Enterolab tests. I now control my MC by diet, with an occasional Imodium. I just did the basic tests for gluten, dairy, soy, egg, and yeast. I didn't to the gene tests, although I kind of wish now that I had, so I'd have more of a starting point to talk to my sons about their chances of gluten sensitivity.
I hope you are successful in finding what works for you.
Martha
My doctor, too, told me that diet was not involved. So not true. Entocort worked for me, but I relapsed a month after going off it, just as he told me I would. He also told me that coconut macaroons helped one of his patients with MC, so that sent me on a hunt for information. I found this forum, and decided, what did I have to lose?
I went gluten free in October 2010, and dairy and soy free two months later, after Enterolab tests. I now control my MC by diet, with an occasional Imodium. I just did the basic tests for gluten, dairy, soy, egg, and yeast. I didn't to the gene tests, although I kind of wish now that I had, so I'd have more of a starting point to talk to my sons about their chances of gluten sensitivity.
I hope you are successful in finding what works for you.
Martha
Martha
Martha,
The gene test just requires rubbing a cotton swab inside the cheek, to get a DNA sample, and it can be mailed in an envelope, (I would assume that overnight delivery is not required, since it doesn't need to be frozen), so it's an easy test, if you should ever want to do it.
Tex
The gene test just requires rubbing a cotton swab inside the cheek, to get a DNA sample, and it can be mailed in an envelope, (I would assume that overnight delivery is not required, since it doesn't need to be frozen), so it's an easy test, if you should ever want to do 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.
Tex,
Each day this week is a little worse than the one before. So, today is rough. I typed an intended post. Guessing I was not logged in, maybe used link in my email. (Dehydrated thinking) It was somewhat longer and I shared something that I prefer not to retype.
How may I retreive content?
Brenda
Each day this week is a little worse than the one before. So, today is rough. I typed an intended post. Guessing I was not logged in, maybe used link in my email. (Dehydrated thinking) It was somewhat longer and I shared something that I prefer not to retype.
How may I retreive content?
Brenda
It is important to be able to sacrifice what we are for what we can become.
unk
unk
Hi Brenda,
I'm sorry things aren't going very well - I hope that changes soon. You may have accidentally clicked on the "Save as Draft" button, instead of clicking on the "Submit" button when you tried to post that message. To see if that's what happened, go to the Index page, (there's a link below), and read the information that I posted in the Site News block, (below the Fact of the Day block. It will tell you how to find it, if you accidentally saved it as a draft.
If you entered a message after accessing the board from an outside link, and the system presented you with a message-composing window, then that should mean that you were successfully logged in, because message-composing windows are not visible to anyone not logged in. Hopefully, you'll find the post in your "saved drafts".
Usually, when you realize that a post was not successfully entered, if you simply hit the "Back" button on your browser, it will take you back to the message, and you can try to post it again. Sometimes you have to go back more than one page. However, if you navigate to another page by any means other than the "forward" or "back" buttons on your browser navigation bar, then the post will be lost, because the browser will update the "sessions" log anytime navigation by any other means takes place. If the message was saved as a draft, it will be saved permanently, or until you edit it to post it, or otherwise change the status. Here's a link to the index page:
http://www.perskyfarms.com/phpBB2/index ... 56c8d664fc
Tex
I'm sorry things aren't going very well - I hope that changes soon. You may have accidentally clicked on the "Save as Draft" button, instead of clicking on the "Submit" button when you tried to post that message. To see if that's what happened, go to the Index page, (there's a link below), and read the information that I posted in the Site News block, (below the Fact of the Day block. It will tell you how to find it, if you accidentally saved it as a draft.
If you entered a message after accessing the board from an outside link, and the system presented you with a message-composing window, then that should mean that you were successfully logged in, because message-composing windows are not visible to anyone not logged in. Hopefully, you'll find the post in your "saved drafts".
Usually, when you realize that a post was not successfully entered, if you simply hit the "Back" button on your browser, it will take you back to the message, and you can try to post it again. Sometimes you have to go back more than one page. However, if you navigate to another page by any means other than the "forward" or "back" buttons on your browser navigation bar, then the post will be lost, because the browser will update the "sessions" log anytime navigation by any other means takes place. If the message was saved as a draft, it will be saved permanently, or until you edit it to post it, or otherwise change the status. Here's a link to the index page:
http://www.perskyfarms.com/phpBB2/index ... 56c8d664fc
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.