Hello,
I haven't posted since being newly diagnosed in early March. Since then, I have completed a month of Entocort, which reduced frequency and severity of D but did not stop it. Saw my GI doc last week and she switched me to Colazal, 4 pills/2x day. Immediately after, BIG flare, and it is impossible to know whether it was the new med or food. Severe, watery, dark gradually going to bright yellow D as it went on, very acidic feeling stomach w/ abdominal pain, leg pain and leg/toe cramping. Has anyone else had this reaction when starting Colazal? Thankfully, it has subsided somewhat.
I'm off Fosamax, Celebrex. Switched to calcium citrate.
She advised me to try gluten-free until my next visit in 3 mos. Have already gone lactose free (exc. for hard cheese and yogurt, which don't seem to bother me) and cut out coffee in favor of tea. I am constantly hungry, as soon as one hour after eating. I am having all kinds of trouble identifying other triggers, but it's clear from what I read on this site that I need to be patient and methodical about that.
There was discussion about going for an auto-immune workup. Does having LC spur other auto-immune conditions?
Another question I have is: I had mononucleosis when I was in my 20's. The Epstein-Barr virus apparently never really leaves the system, and I have had episodes over the intervening years of what I called "mono relapses." Now lymphocytes show up in my GI tract and all the aches and pains that are very reminiscent of mono. I don't know what to make of that, so I'm wondering whether any other of the "regulars" have also had mono in the past.
On the up side, my doctor seems to be great. When I saw her initially, my description of symptoms led her to biopsy immediately, confirming the LC diagnosis--there was no dancing around the IBS issue. She spent LOTS of time on the followup visit discussing management options, and was very respectful of my questions, and the fact that I had done some research and kept a food diary for a month prior to the followup. She was trained at Mt. Sinai Hospital in NY, which my daughter, who works at a different NY hospital, tells me is a good treatment center for colitis of all kinds.
I know this post is sort of all over the place, but I hope to hear what folks have to say about any or all of my wonderings.[/size]
early treatment med and diet questions
Moderators: Rosie, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Suze,
Your doctor does sound knowledgeable about MC, especially if she is suggesting that you go gluten-free. The only question I have is why she would take you off Entocort, especially if you were eating gluten while taking it.
I don't know anything about Colazal. If Entocort reduced your symptoms, but didn't stop the D, it's very likely that you have additional food intolerances that you need to address. IMHO, you should stay on the Entocort, eliminate gluten entirely, and see if your D is reduced. Entocort helps with symptoms, but it doesn't remove the causes of the D. We use Entocort to get our lives back while we are trying to determine which foods are causing our D.
Most of us find that we need to eliminate more than gluten. You have eliminated a lot of casien, which is the second most common intolerance for us. We usually recommend eliminating all foods containing our intolerances. When we are healed, we can test them again. Soy is the third most common intolerance. About half of us are intolerant to soy.
Gloria
Your doctor does sound knowledgeable about MC, especially if she is suggesting that you go gluten-free. The only question I have is why she would take you off Entocort, especially if you were eating gluten while taking it.
I don't know anything about Colazal. If Entocort reduced your symptoms, but didn't stop the D, it's very likely that you have additional food intolerances that you need to address. IMHO, you should stay on the Entocort, eliminate gluten entirely, and see if your D is reduced. Entocort helps with symptoms, but it doesn't remove the causes of the D. We use Entocort to get our lives back while we are trying to determine which foods are causing our D.
Most of us find that we need to eliminate more than gluten. You have eliminated a lot of casien, which is the second most common intolerance for us. We usually recommend eliminating all foods containing our intolerances. When we are healed, we can test them again. Soy is the third most common intolerance. About half of us are intolerant to soy.
Interesting. I also had mononucleosis when I was in my 20's. I have never considered any connection between mononucleosis and MC. Now I'm wondering. Perhaps we should do a survey to determine how many of us have had mononucleosis.I had mononucleosis when I was in my 20's.
Gloria
You never know what you can do until you have to do it.
Hi Suze,
I agree with everything that Gloria wrote, and I'm also puzzled about why your doctor, (who appears to be far above normal in her understanding of treating this disease), would take you off Entocort so soon. It takes a while for the mesalamine-based meds to work, so I would assume that your flare occurred because once the budesonide in the Entocort cleared your system, the casein and/or soy in your diet promptly escalated your symptoms, and the Colazal has not had time to begin providing much benefit.
It's possible that you might be sensitive to the Colazal, but I'm guessing that casein is probably your current problem, since casein tends to cause what we call "battery-acid" D, which sort of fits your description of your symptoms.
Yes, MC does open the door to an increased chance of developing other autoimmune issues. I have no idea whether or not mononucleosis might be causing some of the issues that you describe, but I can tell you that I never had mono, but whenever my MC was active, I felt as though I had a world-class case of the flu. My joints ached, my muscles ached, my neck was so stiff that I could barely turn my head, and it interfered with sleeping at night. I had arthritis in my knees so bad that I had to use a cane to walk, sometimes, and a couple of my fingers had joints so swollen and sore that they grew crooked. To say nothing of the headaches and migraines, that sometimes were so bad that I couldn't go to work.
All those aches and pains, (outside of the GI system), are caused by the leaky gut syndrome, that comes with MC, for many of us, (though not every one has these symptoms - believe it or not, some people have no pain associated with MC).
FWIW, most of us have found that if we are going to use Entocort as part of our treatment, there is no point in taking it, if you can't continue taking it for at least 6 months to a year, because it takes at least that long for the inflammation to subside to the point where the diet, (or even mesalamine, for some patients), can take over and maintain remission. IOW, if your doctor doesn't understand that Entocort has to be used longer than just a month or so, she definitely is not up to speed on using it to treat MC. Most doctors don't have the foggiest idea how long it takes the gut to heal from the damage caused by MC. They incorrectly assume that as soon as the D subsides, significant healing has already occurred, but that is not the case, unfortunately. It takes a year or two, in most cases. This is true for celiac disease, also - most adults with celiac disese require an average of 4 years on the GF diet, for small intestinal histology to return to normal. With MC, if all food sensitivities are carefully avoided, colonic histology will usually return to normal in 5 to 10 years. Kids heal much faster, of course.
Tex
I agree with everything that Gloria wrote, and I'm also puzzled about why your doctor, (who appears to be far above normal in her understanding of treating this disease), would take you off Entocort so soon. It takes a while for the mesalamine-based meds to work, so I would assume that your flare occurred because once the budesonide in the Entocort cleared your system, the casein and/or soy in your diet promptly escalated your symptoms, and the Colazal has not had time to begin providing much benefit.
It's possible that you might be sensitive to the Colazal, but I'm guessing that casein is probably your current problem, since casein tends to cause what we call "battery-acid" D, which sort of fits your description of your symptoms.
Yes, MC does open the door to an increased chance of developing other autoimmune issues. I have no idea whether or not mononucleosis might be causing some of the issues that you describe, but I can tell you that I never had mono, but whenever my MC was active, I felt as though I had a world-class case of the flu. My joints ached, my muscles ached, my neck was so stiff that I could barely turn my head, and it interfered with sleeping at night. I had arthritis in my knees so bad that I had to use a cane to walk, sometimes, and a couple of my fingers had joints so swollen and sore that they grew crooked. To say nothing of the headaches and migraines, that sometimes were so bad that I couldn't go to work.
All those aches and pains, (outside of the GI system), are caused by the leaky gut syndrome, that comes with MC, for many of us, (though not every one has these symptoms - believe it or not, some people have no pain associated with MC).
FWIW, most of us have found that if we are going to use Entocort as part of our treatment, there is no point in taking it, if you can't continue taking it for at least 6 months to a year, because it takes at least that long for the inflammation to subside to the point where the diet, (or even mesalamine, for some patients), can take over and maintain remission. IOW, if your doctor doesn't understand that Entocort has to be used longer than just a month or so, she definitely is not up to speed on using it to treat MC. Most doctors don't have the foggiest idea how long it takes the gut to heal from the damage caused by MC. They incorrectly assume that as soon as the D subsides, significant healing has already occurred, but that is not the case, unfortunately. It takes a year or two, in most cases. This is true for celiac disease, also - most adults with celiac disese require an average of 4 years on the GF diet, for small intestinal histology to return to normal. With MC, if all food sensitivities are carefully avoided, colonic histology will usually return to normal in 5 to 10 years. Kids heal much faster, of course.
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 and Gloria,
Thanks for your input. I, too, was surprised at her readiness to switch off the Entocort. She seemed to be thinking that she didn't want to use a steroid for the longer term. If I continue to feel lousy on the colazal, I'll be calling her.
In reality, I now think I have been having "mini-flares" for several years, but was so busy with my job/life that I just toughed them out--they were never bad enough to cause me to seek treatment. Now my body is telling me it needs my attention.
As one who is newly diagnosed, I am still in disbelief that no sooner did I retire from teaching than my body went haywire, impeding enjoyment of my retirement. I'm actually pretty angry about it. So I need to be working toward some level of acceptance, i guess.
Thanks for your input. I, too, was surprised at her readiness to switch off the Entocort. She seemed to be thinking that she didn't want to use a steroid for the longer term. If I continue to feel lousy on the colazal, I'll be calling her.
In reality, I now think I have been having "mini-flares" for several years, but was so busy with my job/life that I just toughed them out--they were never bad enough to cause me to seek treatment. Now my body is telling me it needs my attention.
As one who is newly diagnosed, I am still in disbelief that no sooner did I retire from teaching than my body went haywire, impeding enjoyment of my retirement. I'm actually pretty angry about it. So I need to be working toward some level of acceptance, i guess.
Suze
I hear you. I came down with MC about 1 1/2 years before I retired. Thankfully, I was no longer teaching at that time. I don't know if I could have taught with it.Suze wrote:I am still in disbelief that no sooner did I retire from teaching than my body went haywire, impeding enjoyment of my retirement.
You can still enjoy retirement once your symptoms are under control. I recently took a trip to Hawaii for a week and am taking a trip to Utah tomorrow morning. Sure, travelling takes a lot of preparation now, but I'm thankful that I can still travel.
You will get your life back and you will be able to enjoy most of the things you used to. Hang in there - it gets better.
Gloria
You never know what you can do until you have to do it.
Dear Suze,
Just wanted to say welcome from Hong Kong.
I have been on Entocort for about a year and three quarters (with a 7 weeks break from it before major relapse). With diet and gradual tapering down I have moved from "no life" to pretty much back to normal, except that I need to be very careful about food, making social and business planning very complicated.
Just want to say you will get your life back, best ant
Just wanted to say welcome from Hong Kong.
I have been on Entocort for about a year and three quarters (with a 7 weeks break from it before major relapse). With diet and gradual tapering down I have moved from "no life" to pretty much back to normal, except that I need to be very careful about food, making social and business planning very complicated.
Just want to say you will get your life back, best ant
----------------------------------------
"Softly, softly catchee monkey".....
"Softly, softly catchee monkey".....
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Sheila
- Rockhopper Penguin
- Posts: 1150
- Joined: Wed May 18, 2011 5:10 am
- Location: Palm Beach Gardens, Fl
I'm another newbie. About 10 years ago my mother had major diarrhea that wasn't being addressed by her doctor. I found a website (can't remember the woman's name) that recommended the Pepto Bismol "cure" and also referred people to EnteroLab. Mom was eventually diagnosed with microscopic colitis. Here it is, 10 years later and I've just been diagnosed with collaganeous colitis. I've probably had it, off and on, for a few years but had a major flare cause by infection with C. diff after taking antibiotics. Had a terrible 3 months of chronic, night time diarrhea and 7 weeks on Flagyl. After a colonoscopy, I had 4 weeks completely free of diarrhea. I've been taking probiotics and Boswellia. I modified my diet slightly but am now realizing that I probably need to make major changes in what I eat. I think the first step would be to get tested for gluten sensitivity. My Mom did it and did not have celiac. She made up her own diet and never was free of the diarrhea for the rest of her life until age 92. Do we suddenly become sensitive to foods we have always eaten? I know I have to be careful with chocolate and dairy products. I thought I was doing a good thing by eating Boca Burgers and whole wheat, lactaid and tofutti ice cream. I am coming down with a cold and took Nyquil last night and this a.m. had severe diarrhea. My doctor prescribed Asacol and I did not want to take it. I thought I could "treat" the C.C. myself with herbs and probiotics. Silly me. I found this website this morning and am happy to have fellow sufferers to learn from. I am going on vacation on Friday morning so I took the Asacol, immodium and am praying the vacation won't be ruined. I once had a "disaster" in the train station in Rome when I didn't have the correct euros to get into the paid bathroom. I'm wandering all over the place but I'm happy to find a place where I can get information, ask questions and vent. Thank you all. Sheila
Hi Sheila,
Welcome to the board. Was the name you can't remember either Judy Malinowski or Sally Read? Both were pioneers in the area of support for sufferers of microscopic colitis.
According to research by Dr. Kenneth Fine, (the founder of Enterolab), when the genes that predispose us to microscopic colitis are triggered, for many/most of us, the genes that predispose us to certain food sensitivities are also triggered at the same time, thus explaining why we suddenly find ourselves sensitive to certain foods that never seemed to bother us previously.
It almost always takes several weeks for Asacol to begin working, and for many of us, it seems to make our symptoms worse, (presumably because it contains lactose), so you may have to rely on help from taking Imodium as needed on your upcoming trip. Entocort, (prescription only), is a much more effective treatment for MC, but it usually takes at least a few days to begin working. Entocort is as effective as prednisone, but it has a far lower risk of side effects, and it can be safely taken on a long-term basis, whereas the other corticosteroids cannot.
Theoretically, Boswellia might help, and one of our members tried it for an extended period, but it appears that very large doses are needed for therapeutic effects, which tends to make it prohibitively expensive.
Some of us control our symptoms by diet alone, but it takes a while for the diet to work, and we have to eliminate all foods to which we are sensitive, even in trace amounts, in order to control the disease by diet alone. Many of us use a combination of diet and medications in order to get good control of our symptoms.
Again, welcome aboard, and please feel free to ask anything. Good luck on your upcoming trip.
Tex (Wayne)
Welcome to the board. Was the name you can't remember either Judy Malinowski or Sally Read? Both were pioneers in the area of support for sufferers of microscopic colitis.
According to research by Dr. Kenneth Fine, (the founder of Enterolab), when the genes that predispose us to microscopic colitis are triggered, for many/most of us, the genes that predispose us to certain food sensitivities are also triggered at the same time, thus explaining why we suddenly find ourselves sensitive to certain foods that never seemed to bother us previously.
It almost always takes several weeks for Asacol to begin working, and for many of us, it seems to make our symptoms worse, (presumably because it contains lactose), so you may have to rely on help from taking Imodium as needed on your upcoming trip. Entocort, (prescription only), is a much more effective treatment for MC, but it usually takes at least a few days to begin working. Entocort is as effective as prednisone, but it has a far lower risk of side effects, and it can be safely taken on a long-term basis, whereas the other corticosteroids cannot.
Theoretically, Boswellia might help, and one of our members tried it for an extended period, but it appears that very large doses are needed for therapeutic effects, which tends to make it prohibitively expensive.
Some of us control our symptoms by diet alone, but it takes a while for the diet to work, and we have to eliminate all foods to which we are sensitive, even in trace amounts, in order to control the disease by diet alone. Many of us use a combination of diet and medications in order to get good control of our symptoms.
Again, welcome aboard, and please feel free to ask anything. Good luck on your upcoming trip.
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.
Welcome Sheila!! 
It sounds like you have inherited your mother's genetic sensitivities. How sad that she lived the remainder of her life, until age 92, with diarrhea. Hopefully you will be able to avoid the same fate by learning from some of our experiences here.
Whew! You are leaving for a trip to Rome in two days? I would suggest that you try Pepto Bismol since your mother seemed to have success with it. Perhaps it would be enough of a boost to get you through the trip. Some of us, including myself, aren't able to tolerate it, but for those who can, it seems to help quite a bit. You'll know immediately if it you can't handle it.
Good luck with your trip. I hope it goes smoothly.
Gloria
It sounds like you have inherited your mother's genetic sensitivities. How sad that she lived the remainder of her life, until age 92, with diarrhea. Hopefully you will be able to avoid the same fate by learning from some of our experiences here.
Whew! You are leaving for a trip to Rome in two days? I would suggest that you try Pepto Bismol since your mother seemed to have success with it. Perhaps it would be enough of a boost to get you through the trip. Some of us, including myself, aren't able to tolerate it, but for those who can, it seems to help quite a bit. You'll know immediately if it you can't handle it.
Good luck with your trip. I hope it goes smoothly.
Gloria
You never know what you can do until you have to do it.
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Sheila
- Rockhopper Penguin
- Posts: 1150
- Joined: Wed May 18, 2011 5:10 am
- Location: Palm Beach Gardens, Fl
Thank you
Thank you Tex and Gloria.
Judy Malinowski was the lady I found on line a number of years ago. My mother did the pepto bismol treatment a few times until it stopped working. She ended up on Entocort and got fair relief up until about a year before she died. Last year I tried the Pepto "cure" and it did stop the diarrhea for about 3 months. My mother's colitis and my colitis both seem to have been triggered by C. diff contracted through antibiotic use. I got it the first time 2 years ago and after that the diarrhea became problematic. After this latest bout, by far much worse, I had the biopsy done and found I have collagenous colitis.
I have so many questions, I hope you don't mind the following barrage.
What do we do when we are sick and have to take an antibiotic? Do others with CC have a problem with antibiotics causing severe diarrhea?
Can I take too much immodium? I take Celebrex. I stopped taking it after my CC diagnosis but had to go back on it. I have a spinal fusion and a lot of arthritis in my back. The Celebrex is really necessary for quality of life reasons. Do you know others who take Celebrex and do you know if it exacerbates the CC? Boswellia is also used for arthritis and I hoped that it would help both conditions. Thanks for the info about the dosage
needed to relieve symptoms. I doubt that I take enough to make much of a difference. I take Parazyme and Florastor daily. My doctor says it won't hurt but he doubts that it helps much. Do you know if probiotics help?
I am very thankful for this forum. CC is not a pleasant topic to discuss with friends and family. My mother would give me graphic descriptions of her colitis problems and I vowed never to do that to my children. It is good to know that I'm not alone with this crappy problem and that there is hope that I will be able to control it at least somewhat.
We leave for Seattle and then a cruise to Alaska tomorrow a.m. I will have a large supply of immodium in my bag, lots of extra undies and pray I don't embarrass myself or my husband. I don't want a repeat of the problems I had at the Rome train station.
Thank you again for your help.
Sheila
Judy Malinowski was the lady I found on line a number of years ago. My mother did the pepto bismol treatment a few times until it stopped working. She ended up on Entocort and got fair relief up until about a year before she died. Last year I tried the Pepto "cure" and it did stop the diarrhea for about 3 months. My mother's colitis and my colitis both seem to have been triggered by C. diff contracted through antibiotic use. I got it the first time 2 years ago and after that the diarrhea became problematic. After this latest bout, by far much worse, I had the biopsy done and found I have collagenous colitis.
I have so many questions, I hope you don't mind the following barrage.
What do we do when we are sick and have to take an antibiotic? Do others with CC have a problem with antibiotics causing severe diarrhea?
Can I take too much immodium? I take Celebrex. I stopped taking it after my CC diagnosis but had to go back on it. I have a spinal fusion and a lot of arthritis in my back. The Celebrex is really necessary for quality of life reasons. Do you know others who take Celebrex and do you know if it exacerbates the CC? Boswellia is also used for arthritis and I hoped that it would help both conditions. Thanks for the info about the dosage
needed to relieve symptoms. I doubt that I take enough to make much of a difference. I take Parazyme and Florastor daily. My doctor says it won't hurt but he doubts that it helps much. Do you know if probiotics help?I am very thankful for this forum. CC is not a pleasant topic to discuss with friends and family. My mother would give me graphic descriptions of her colitis problems and I vowed never to do that to my children. It is good to know that I'm not alone with this crappy problem and that there is hope that I will be able to control it at least somewhat.
We leave for Seattle and then a cruise to Alaska tomorrow a.m. I will have a large supply of immodium in my bag, lots of extra undies and pray I don't embarrass myself or my husband. I don't want a repeat of the problems I had at the Rome train station.
Thank you again for your help.
Sheila
Dear Sheila
Welcome. This a difficult disease physically and socially. Since you are going traveling I will re-post my "to the chef card" which (adapted) could be useful away from home.
Best, ant
Welcome. This a difficult disease physically and socially. Since you are going traveling I will re-post my "to the chef card" which (adapted) could be useful away from home.
If you adapt to what you judge your intolerances to be and print it out or email it to places in advance, they may take your intolerances more seriouslyTo The Chef…. I suffer from Celiac & Microscopic Colitis causing multiple food intolerances.
CAN EAT:
• (Unprocessed) meat, fish, shellfish - grilled, roasted, fried or baked.
• Rice – boiled, steamed or fried in olive oil, rice noodles. Rice or water chestnut flour.
• Salt, pepper, herbs, garlic, onion, dried coconut.
• Vinegar (EXCEPT NO malt vinegar).
• Olive oil (not other vegetable oils), pure coconut oil, pure balsamic oil (not artificially coloured since that contains gluten).
• Well-cooked peeled vegetables (EXCEPT NO: bean, pea, tomato, potato, bell pepper and corn).
• Mushroom, banana, olive, avocado, nuts (EXCEPT NO peanuts and cashew nuts), cooked fruit.
• Wine, spirits, coconut milk (no guar gum added), green tea, pure coco, black coffee, tea.
CAN EAT IN SMALL AMOUNTS:
• Cane Sugar, glucose, fructose, pure maple syrup, honey, raw fruit.
CANNOT EAT
• Gluten (and similar) – wheat, rye, oat, corn, semolina/tapioca – that is in flour, bread, cake, biscuit, wheat pasta, cuscus, tapioca, beer, malt vinegar.
• Soy, Soya/Tofu, Soy lechtin, Worcester source or MSG.
• Dairy – milk, cream, butter, cheese.
• Bean, pea, guar gum, peanut or cashew nut
• Egg
• Potato, tomato, eggplant, bell pepper
• Raw vegetables (e.g. salad)
• Cashew nut and peanut.
• High fructose corn syrup, aspartame.
• Vegetable oils – except Olive Oil, which is fine.
Best, ant
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"Softly, softly catchee monkey".....
"Softly, softly catchee monkey".....
Sheila,
Yes, antibiotics are a significant problem for anyone with CC, and most antibiotics will trigger diarrhea in such a situation. The following link will take you to some information about taking antibiotics:
http://www.perskyfarms.com/phpBB2/viewtopic.php?t=870
I'm not aware of any member here who takes Celebrex, because NSAIDs are a very high risk trigger for CC, LC, and any other form of MC. I too had severe arthritis problems back when I was still reacting. After I adopted the GF diet, and allowed time for my gut to heal, my arthritis symptoms mostly disappeared, and while I still occasionally have very minor signs of arthritis, the symptoms are never serious enough to warrant any treatment. Though the medical profession doesn't realize it, (at least they refuse to acknowledge it), arthritis, (and in fact, all autoimmune diseases), appears to be a side effect of gluten sensitivity. I assume the medical community is not interested in pursuing that line of research, because they would hate to lose all that repeat business, and obviously the pharmaceutical industry is going to do anything they can to hang onto all those profitable sales, as well.
Most of the damage done by rheumatoid arthritis, of course, is not reversible, so once the damage is done, some symptoms are going to linger. Removing all gluten from the diet can stop the damage from progressing, and greatly reduce the clinical symptoms, for most of us. I truly believe, that if we were to cut gluten out of our diet early in life, (or never be exposed to it, in the first place), arthritis would be a non-issue.
I can't say with 100% certainty that in your particular case, the Celebrex is causing or exacerbating your CC, but the probability of that is very high, based on research and past experience. The only painkillers that do not impose a risk of triggering a flare for someone with CC, seem to be acetaminophen and/or narcotic-based painkillers.
Probiotics are an interesting topic. Theoretically, (according to research), they should be very helpful for treating this disease. Unfortunately, the reality is that we are all different, and it turns out to be very difficult to find a probiotic that provides any benefits. Everyone seems to have different results, and different probiotic "needs". For some of us, many/most probiotics just make our symptoms worse, while some individuals find that certain probiotics seem to help, or at least not make the situation worse. A handful of members have found certain probiotics to be very beneficial for them, but most of us are left scratching our head, and wondering why they don't seem to work for us. Contrary to claims by most "experts", products that contain prebiotics, (not probiotics), (such as inulin, FOS, etc.), virtually always cause problems for someone with this disease, because in reality, they promote the propagation and growth of "bad" bacteria at least as much as they promote the growth of "good" bacteria.
One of the sad truths about this disease is that no one truly understands it, unless they actually have it. Some members find adult diapers to be a good "security blanket" and/or emergency backup defense, when they are in a flare, and they absolutely have to be out and about. Depends, and similar products, won't win any fashion awards, but they can definitely help to prevent extremely embarrassing incidents, and they can help to preserve a sense of self-confidence when the chips are down.
You're very welcome, and I hope that your trip is most enjoyable.
Tex
Yes, antibiotics are a significant problem for anyone with CC, and most antibiotics will trigger diarrhea in such a situation. The following link will take you to some information about taking antibiotics:
http://www.perskyfarms.com/phpBB2/viewtopic.php?t=870
I'm not aware of any member here who takes Celebrex, because NSAIDs are a very high risk trigger for CC, LC, and any other form of MC. I too had severe arthritis problems back when I was still reacting. After I adopted the GF diet, and allowed time for my gut to heal, my arthritis symptoms mostly disappeared, and while I still occasionally have very minor signs of arthritis, the symptoms are never serious enough to warrant any treatment. Though the medical profession doesn't realize it, (at least they refuse to acknowledge it), arthritis, (and in fact, all autoimmune diseases), appears to be a side effect of gluten sensitivity. I assume the medical community is not interested in pursuing that line of research, because they would hate to lose all that repeat business, and obviously the pharmaceutical industry is going to do anything they can to hang onto all those profitable sales, as well.
Most of the damage done by rheumatoid arthritis, of course, is not reversible, so once the damage is done, some symptoms are going to linger. Removing all gluten from the diet can stop the damage from progressing, and greatly reduce the clinical symptoms, for most of us. I truly believe, that if we were to cut gluten out of our diet early in life, (or never be exposed to it, in the first place), arthritis would be a non-issue.
I can't say with 100% certainty that in your particular case, the Celebrex is causing or exacerbating your CC, but the probability of that is very high, based on research and past experience. The only painkillers that do not impose a risk of triggering a flare for someone with CC, seem to be acetaminophen and/or narcotic-based painkillers.
Probiotics are an interesting topic. Theoretically, (according to research), they should be very helpful for treating this disease. Unfortunately, the reality is that we are all different, and it turns out to be very difficult to find a probiotic that provides any benefits. Everyone seems to have different results, and different probiotic "needs". For some of us, many/most probiotics just make our symptoms worse, while some individuals find that certain probiotics seem to help, or at least not make the situation worse. A handful of members have found certain probiotics to be very beneficial for them, but most of us are left scratching our head, and wondering why they don't seem to work for us. Contrary to claims by most "experts", products that contain prebiotics, (not probiotics), (such as inulin, FOS, etc.), virtually always cause problems for someone with this disease, because in reality, they promote the propagation and growth of "bad" bacteria at least as much as they promote the growth of "good" bacteria.
One of the sad truths about this disease is that no one truly understands it, unless they actually have it. Some members find adult diapers to be a good "security blanket" and/or emergency backup defense, when they are in a flare, and they absolutely have to be out and about. Depends, and similar products, won't win any fashion awards, but they can definitely help to prevent extremely embarrassing incidents, and they can help to preserve a sense of self-confidence when the chips are down.
You're very welcome, and I hope that your trip is most enjoyable.
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 Sheila,
RE: the Celebrex question, my GI doc said absolutely no NSAIDS with MC. There are, apparently, other alternatives, but I have found that I'm not feeling any worse without it, and am happy to be done with some of the meds I had been taking routinely, including, as mentioned at the beginning of the thread, Fosamax, and now an SSRI. I have a bone density test upcoming and will be curious to see what it shows. Interestingly, TMJ issues that were present for me have disappeared since stopping NSAIDS and Fosamax.
I can't say for sure yet that eating GF has contributed to my lack of needing an alternative arthritis drug, but I know several people who do not have MC who have gone GF and report drastic lessening of joint pain. I have recently been "testing" gluten, and don't notice that it makes me feel any worse. But, having gotten into the GF habit, I'm finding that it's not so bad, and so would say I'm GF 95% of the time.
RE: probiotics, I have recently had to take antibiotics for an infection, and will keep up the Culturelle for a while to try to get some good bacteria back into
the GI tract. But I plan to stop that shortly also, just to see what happens. I have taken both Align and Culturelle over the course of this, and haven't noted any great benefit.
RE: the Celebrex question, my GI doc said absolutely no NSAIDS with MC. There are, apparently, other alternatives, but I have found that I'm not feeling any worse without it, and am happy to be done with some of the meds I had been taking routinely, including, as mentioned at the beginning of the thread, Fosamax, and now an SSRI. I have a bone density test upcoming and will be curious to see what it shows. Interestingly, TMJ issues that were present for me have disappeared since stopping NSAIDS and Fosamax.
I can't say for sure yet that eating GF has contributed to my lack of needing an alternative arthritis drug, but I know several people who do not have MC who have gone GF and report drastic lessening of joint pain. I have recently been "testing" gluten, and don't notice that it makes me feel any worse. But, having gotten into the GF habit, I'm finding that it's not so bad, and so would say I'm GF 95% of the time.
RE: probiotics, I have recently had to take antibiotics for an infection, and will keep up the Culturelle for a while to try to get some good bacteria back into
the GI tract. But I plan to stop that shortly also, just to see what happens. I have taken both Align and Culturelle over the course of this, and haven't noted any great benefit.
Suze
I believe some members have used Culturelle (we each have our unique tolerances and sensitivities). Right now I'm using a probiotic from Megafoods (Megaflora Plus) - can't tell if it's helping, but it is not messing me up ;) I did some intense label-scanning for suspect ingredients when I chose it.
I believe those two antibiotics are less likely to worsen MC symptoms. Hopefully you'll get advice from someone who's taken one of them recently. And I hope you're feeling great and won't need the antibiotic ;)
--Sara
I believe those two antibiotics are less likely to worsen MC symptoms. Hopefully you'll get advice from someone who's taken one of them recently. And I hope you're feeling great and won't need the antibiotic ;)
--Sara