Hello, Im new here although have been reading posts for a while. I'm not sure where I should be posting this so thought that I would post here, knowing that someone will move it if necessary.
I was diagnosed with Lymphocytic Colitis a year ago after having one bad flare ( I was very lucky that my GP had a gastroenterology background and referred me immediately). Since then I have had two more flares. The first one I believe was caused by Ibuprufen, as I have Spondyloarthropathy for which I inject Humira, which often causes severe head and neck pain shortly after injecting. I know that I was taking large doses of Ibuprufen at that time but was desperate. I also take Nexium for Hiatus Hernia so stopped taking that for as long as I was able whilst my bowels settled. I was prescribed Budesonide and then Pentasa. I took the Budesonide but didn't want to start Pentasa as I believed if I stopped the Ibuprufen that might be the aggravating factor and I wouldn't need anything else. That flare settled so I thought that I was right but I've just had another flare. So I'm not sure where to go from here. I tested negative for Coeliac ( although do have Hashimoto's which many find going gluten/wheat free helps). I can't see that a particular food has caused the recent flare. Do any of you think that an elimination diet will help ?
Sorry that I seem to be telling you all my medical history but I know that what seems like little things can all add up for the bigger picture.
Thanks in advance. Clemmie
Do I really need to do the elimination diet?
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Hi Clemmie,
Welcome to the discussion board. Your question is difficult to answer because it appears that your MC is almost surely caused by some or all of the medications that you have been taking. NSAIDs and PPIs are notorious for triggering MC reactions. And we have a few members who were unable to achieve remission because they were taking Humira or one of the other anti-TNF drugs.
In some cases where their MC is caused by medications, members here have been able to achieve remission simply by stopping the use of the medication that was causing them to react, and as long as they totally avoid that medication (or medications), they are fine. But if they continue to use a drug that causes them to react, they will almost always develop food sensitivities also.
After that happens, remission becomes more difficult to accomplish, because both the foods that cause a reaction and any medications that cause an MC reaction will have to be carefully avoided in order to achieve and maintain remission. This is a very complex disease, and the main thing to remember is that reactions against medications trump food reactions every time. That means that as long as someone is taking any medication that triggers an MC reaction for them, diet changes will not help (because unfortunately, the drugs will continue to trigger a reaction).
Again, welcome aboard, and please feel free to ask anything.
Tex
Welcome to the discussion board. Your question is difficult to answer because it appears that your MC is almost surely caused by some or all of the medications that you have been taking. NSAIDs and PPIs are notorious for triggering MC reactions. And we have a few members who were unable to achieve remission because they were taking Humira or one of the other anti-TNF drugs.
In some cases where their MC is caused by medications, members here have been able to achieve remission simply by stopping the use of the medication that was causing them to react, and as long as they totally avoid that medication (or medications), they are fine. But if they continue to use a drug that causes them to react, they will almost always develop food sensitivities also.
After that happens, remission becomes more difficult to accomplish, because both the foods that cause a reaction and any medications that cause an MC reaction will have to be carefully avoided in order to achieve and maintain remission. This is a very complex disease, and the main thing to remember is that reactions against medications trump food reactions every time. That means that as long as someone is taking any medication that triggers an MC reaction for them, diet changes will not help (because unfortunately, the drugs will continue to trigger a reaction).
Again, welcome aboard, 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.
Thanks for your reply, Tex. I can't say that I'm not disappointed - I guess I was hoping that you would say " definitively, do the food elimination and you should be fine" even though I know deep down it probably wouldn't work that way! I will speak to my gastroenterologist about changing from PPI's to something else - do you have any suggestions as I'm not sure what else can work with hiatus hernia? Although when I spoke to him late last year regarding my theory that anti inflammatories had caused the latest flare, he didn't seem convinced that it was caused by medication. I will need to talk to my rheumatologist regarding alternatives to Ibuprufen. I'm reluctant to stop Humira as its the first thing that actually works that doesn't appear to cause any side effects. The LC started 6 months before I started Humira and I know it is sometimes used as a treatment for IBD so I'm hoping that isn't one of the causes of my problems. Incidentally, I take Fexofenadine 180mg daily ( I think it's known as Allegra in the States). I've seen that people on here take it. I take it for itchy skin and have been since about 2000.
I've ordered a copy of your book for when I get back to the UK so once I've read that, I'm sure that I will be back posting, asking for members advice. Thank you once again.
Clemmie
I've ordered a copy of your book for when I get back to the UK so once I've read that, I'm sure that I will be back posting, asking for members advice. Thank you once again.
Clemmie
Clemmie
I wish that there were an easier way to go about treating this disease, but it's a very complex, difficult-to-deal-with disease. If it were easy, more doctors would be able to successfully treat it.
Before PPIs came along, everyone used H2 type antihistamines for the purposes for which PPIs are used today, and they used them successfully. PPIs became instantly popular because they can suppress the production of stomach acid for up to 3 days, whereas H2 blockers only last for a few hours, and therefore they have to be taken several times each day. They are much safer to use than PPIs, however, and they carry a much lower risk of triggering an MC reaction.
And another feature of H2 blockers is that for some of us, they help to control some of our MC symptoms by blocking the activation of histamine in the GI tract. PPIs suppress the production of gastric acid, which should help to reduce the release of histamine in the GI tract, but by blocking the attachment of histamine to H2 histamine receptors in the stomach and intestines, H2 blockers prevent histamine from triggering additional inflammatory events. Here's a link to an article with some general information on H2 blockers:
H2 Blockers
Does the hiatus hernia cause problems such as a feeling of a lump in the throat, or difficulty swallowing? Here's a copy of some information from one of my old posts about a home remedy that usually helps to relieve those symptoms:
There is no medical research that indicates that Humira might be a problem for MC patients. IMO it does not cause MC, but I have a hunch that using it can prevent an MC patient from being able to achieve remission from their symptoms. My remarks about it are simply based on the observation that so far at least, all of the members of this discussion board who use an anti-TNF medication have been unable to stop their MC symptoms. We're only talking about 3 or 4 people though, so this is obviously a very small sample size, as far as scientific studies are concerned.
I will say this though, regarding the elimination diet. Most members here who have cut all of their food sensitivities out of their diet have seen virtually all of their autoimmune issues slowly fade away, including arthritis, psoriasis, asthma, etc. About 15 years ago (before I changed my diet), I had arthritis so bad that some days I had to use 2 canes just to get around. Some of my fingers are crooked and twisted, to show how bad my arthritis symptoms once were. But changing my diet stopped the arthritis, though my fingers are still crooked and twisted (since that damage is permanent), and I have no pain or stiffness or any other indication of arthritis in my joints. If you read some of the posts in the "Member Success Stories" category of this discussion board, you will see that many others have reported the same results.
The point is, most of us have found that if we change our diet, and we are very careful to avoid all of our food sensitivities, we can slowly phase out our medications, and live symptom-free, without those medications. One of the big problems though, is that some of those drugs, such as the PPIs, are very addictive and when we try to stop using them, they cause a rebound effect that can last for weeks, that is worse than the original problem. So we have to go about the transition slowly and methodically. Recovering from MC is best done by taking life a day at a time, and all the while listening to what our body is trying to tell us.
Mast cell issues that result in the release of histamines are a problem for many of us. Bananas accumulate histamine as they ripen. I can eat a small to medium-size (barely ripe) banana maybe every other day or so without any problems. But if I eat a large banana, or eat a banana every day, I have severe itching around my ankles. I have no idea why the itching presents on my ankles, but it does. If the bananas are very ripe, or if I eat more than one, the itching (and a rash) will spread up my legs, and maybe even show up in other places on my body. So if I want to eat a banana without itching, I have to take an antihistamine. I usually use fexofenadine also, because it seems to work OK for me.
You might be interested in some of the information in the short articles at the following links. These articles describe how mast cell issues are often associated with MC, and how they can be treated. Some of the articles also contain links to reference articles, if you would like to read more about this problem.
What are mast cells?
How are mast cells associated with microscopic colitis?
How do I know if mast cells are causing problems for me?
How are mast cell issues treated?
I hope that some of this is more helpful than my last post. And you're very welcome, of course.
Tex
I wish that there were an easier way to go about treating this disease, but it's a very complex, difficult-to-deal-with disease. If it were easy, more doctors would be able to successfully treat it.
Before PPIs came along, everyone used H2 type antihistamines for the purposes for which PPIs are used today, and they used them successfully. PPIs became instantly popular because they can suppress the production of stomach acid for up to 3 days, whereas H2 blockers only last for a few hours, and therefore they have to be taken several times each day. They are much safer to use than PPIs, however, and they carry a much lower risk of triggering an MC reaction.
And another feature of H2 blockers is that for some of us, they help to control some of our MC symptoms by blocking the activation of histamine in the GI tract. PPIs suppress the production of gastric acid, which should help to reduce the release of histamine in the GI tract, but by blocking the attachment of histamine to H2 histamine receptors in the stomach and intestines, H2 blockers prevent histamine from triggering additional inflammatory events. Here's a link to an article with some general information on H2 blockers:
H2 Blockers
Does the hiatus hernia cause problems such as a feeling of a lump in the throat, or difficulty swallowing? Here's a copy of some information from one of my old posts about a home remedy that usually helps to relieve those symptoms:
Ask your rheumatologist about the possibility of using tramadol, or tramadol plus acetaminophen, instead of ibuprofen.The problem is due to a portion of the top of the stomach protruding through the hole where the esophagus passes through the diaphragm. Try drinking a glass of warm water (to relax the muscles and to add some weight to your stomach), and then stand on your tiptoes and suddenly drop your body by dropping your heels to the floor. The inertia of the sudden stop will usually pull the stomach back down, and resolve the problem. If it doesn't work the first time you try it, try again. Of course, this works best on a carpet or soft rug, rather than a hard floor. If you do it on a hard floor, be careful not to hit your heels too hard on the floor, since that could cause an injury to one of your feet.
There is no medical research that indicates that Humira might be a problem for MC patients. IMO it does not cause MC, but I have a hunch that using it can prevent an MC patient from being able to achieve remission from their symptoms. My remarks about it are simply based on the observation that so far at least, all of the members of this discussion board who use an anti-TNF medication have been unable to stop their MC symptoms. We're only talking about 3 or 4 people though, so this is obviously a very small sample size, as far as scientific studies are concerned.
I will say this though, regarding the elimination diet. Most members here who have cut all of their food sensitivities out of their diet have seen virtually all of their autoimmune issues slowly fade away, including arthritis, psoriasis, asthma, etc. About 15 years ago (before I changed my diet), I had arthritis so bad that some days I had to use 2 canes just to get around. Some of my fingers are crooked and twisted, to show how bad my arthritis symptoms once were. But changing my diet stopped the arthritis, though my fingers are still crooked and twisted (since that damage is permanent), and I have no pain or stiffness or any other indication of arthritis in my joints. If you read some of the posts in the "Member Success Stories" category of this discussion board, you will see that many others have reported the same results.
The point is, most of us have found that if we change our diet, and we are very careful to avoid all of our food sensitivities, we can slowly phase out our medications, and live symptom-free, without those medications. One of the big problems though, is that some of those drugs, such as the PPIs, are very addictive and when we try to stop using them, they cause a rebound effect that can last for weeks, that is worse than the original problem. So we have to go about the transition slowly and methodically. Recovering from MC is best done by taking life a day at a time, and all the while listening to what our body is trying to tell us.
Mast cell issues that result in the release of histamines are a problem for many of us. Bananas accumulate histamine as they ripen. I can eat a small to medium-size (barely ripe) banana maybe every other day or so without any problems. But if I eat a large banana, or eat a banana every day, I have severe itching around my ankles. I have no idea why the itching presents on my ankles, but it does. If the bananas are very ripe, or if I eat more than one, the itching (and a rash) will spread up my legs, and maybe even show up in other places on my body. So if I want to eat a banana without itching, I have to take an antihistamine. I usually use fexofenadine also, because it seems to work OK for me.
You might be interested in some of the information in the short articles at the following links. These articles describe how mast cell issues are often associated with MC, and how they can be treated. Some of the articles also contain links to reference articles, if you would like to read more about this problem.
What are mast cells?
How are mast cells associated with microscopic colitis?
How do I know if mast cells are causing problems for me?
How are mast cell issues treated?
I hope that some of this is more helpful than my last post. And you're very welcome, 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.
Hi Tex,
Please don't think that your previous post wasn't helpful because it was. I'm so sorry if the tone of my reply caused you to think that I wasn't grateful. I am grateful for any input, believe me! I will be reading the links you have posted. Obviously over the past year I have done lots of reading but it is good to have particularly relevant information.
Yes, the hiatus hernia does move up into my upper chest and throat - it is a horrible feeling although I haven't had too much of a problem with it over recent years. So I've stopped taking Nexium for the past week and so far I haven't suffered any problems regarding that. But will discuss it with my doctor. I'm not keen on the idea of Tramodol as that makes me nauseated and frankly,I would rather have pain that nausea!
I've decided that I will try the elimination diet because I have nothing to lose and everything to gain. My husband is coeliac so most of our food is gluten free anyway, so that part shouldn't be too bad - apart from the fact that I do love good bread and gluten free bread is rarely good!!!
Anyway, thank you so much for all of your help.
Clemmie
Please don't think that your previous post wasn't helpful because it was. I'm so sorry if the tone of my reply caused you to think that I wasn't grateful. I am grateful for any input, believe me! I will be reading the links you have posted. Obviously over the past year I have done lots of reading but it is good to have particularly relevant information.
Yes, the hiatus hernia does move up into my upper chest and throat - it is a horrible feeling although I haven't had too much of a problem with it over recent years. So I've stopped taking Nexium for the past week and so far I haven't suffered any problems regarding that. But will discuss it with my doctor. I'm not keen on the idea of Tramodol as that makes me nauseated and frankly,I would rather have pain that nausea!
I've decided that I will try the elimination diet because I have nothing to lose and everything to gain. My husband is coeliac so most of our food is gluten free anyway, so that part shouldn't be too bad - apart from the fact that I do love good bread and gluten free bread is rarely good!!!
Anyway, thank you so much for all of your help.
Clemmie
Clemmie,
I apologize for adding that line about hoping that my post was more helpful than the first. I didn't mean to imply that I thought that you weren't grateful for the information. I just didn't feel that my previous post was particularly helpful, after rereading it. I didn't mean to suggest anything else.
Regarding analgesics, some members here have tried some of the topically-applied, or transdermal pain remedies and reported that they had good results without aggravating their colitis.
Good luck with your treatment program.
You are most welcome,
Tex
I apologize for adding that line about hoping that my post was more helpful than the first. I didn't mean to imply that I thought that you weren't grateful for the information. I just didn't feel that my previous post was particularly helpful, after rereading it. I didn't mean to suggest anything else.
Regarding analgesics, some members here have tried some of the topically-applied, or transdermal pain remedies and reported that they had good results without aggravating their colitis.
Good luck with your treatment program.
You are most welcome,
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.