Hello all,
I'm new to this forum and have discovered that I have many things in common with this group- but I'm not certain I have gluten or dairy intolerances and would like some feedback.
Four years ago I had a three month bout of D. I had a colonoscopy at that time and the GI tested for MC but results were negative. After three months the D just stopped and I had been fine until this past February. The D started again, slowly at first-but by the middle of March number of Ds and pain were debilitating.
I had a sig-flex (sp) in April and was diagnosed with MC. I was put on 9mg of Entocort for 30 days which stopped the D immediately. I have now been off the Entocort for 30 days and have been doing well for the most part. I've had a few soft Ds, a little pain and a rumbly stomach- but only occasionally. I've taken imodium a few times and nothing else.
I have not noticed any difference between eating gluten and leaving it out of my diet. I understand that most of you do not eat any gluten.
Question--are there people like me who have occasional flare-ups-every 4 years and can continue eating whatever they like?
Any help would be appreciated as I would like to keep my digestive system calm.
Thank You
Newbie
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draperygoddess
- Rockhopper Penguin
- Posts: 558
- Joined: Mon Aug 29, 2011 6:49 am
- Location: Tennessee
Hi there, and welcome to the forum!
I'm sure Tex and others who know more than I do will weigh in, but as far as gluten and dairy intolerance goes, here are a couple of things to keep in mind:
1. nearly all of us who have been diagnosed with MC are gluten-intolerant, and most are dairy-intolerant as well.
2. absence of symptoms does not equal absence of damage. Some people do have "spontaneous remission," by which I mean that the symptoms go away on their own for a period of time, but it never lasts without either medication or dietary changes (or both). You are actually a prime example. Four years ago, your colonoscopy results did not show MC. Now, not only do you have officially diagnosed MC, you yourself said that this time around you're in more pain, and the disease is more debilitating. Tex has a theory that MC is just the end result of a lifetiime of gluten damage. I agree with him wholeheartedly. By the time we get a positive diagnosis, most of us have been suffering for years without any answers.
It's true that removing gluten and dairy from your diet doesn't always make a difference overnight (or even over several weeks or months). However, that doesn't mean the damage isn't there, and it doesn't mean your body isn't healing. It just takes time to reverse. Depending on which study you read, it's estimated that gluten damage takes anywhere from 2 to 5 years to heal.
I used to think I wasn't gluten-intolerant because I would avoid it for a week or two and not notice any difference. The problem there was twofold: one, gluten is in EVERYTHING, and you must be vigilant to really eliminate it. Two, I wasn't giving myself enough time. After my colonoscopy last year (which, incidentally, showed inflammation and edema, but not a high enough lymphocyte count to warrant a diagnosis of MC), I went GF/DF and mostly SF for two months before ordering Enterolab tests (if you haven't read about them yet, just search the forum). The tests showed I was definitely producing gluten antibodies, even though I hadn't had any gluten for over two months! I also had high-normal results for dairy and soy. My point is that you may not immediately notice the affects of eliminating these things from your diet, but over time your body will slowly start to heal, and your symptoms will improve. It doesn't happen overnight, but hundereds of us here will confirm that it DOES HAPPEN.
I would really encourage you to stay GF, and probably DF too, for at least a couple of months before deciding it doesn't make a difference. You can always change your mind later. You are fortunate that you've caught your MC early enough that you haven't had the more severe flares that some of the members here have had--give yourself the best chance not to go there!
As Tex would say, "Feel free to ask anything." We've all been there! Best of luck!
I'm sure Tex and others who know more than I do will weigh in, but as far as gluten and dairy intolerance goes, here are a couple of things to keep in mind:
1. nearly all of us who have been diagnosed with MC are gluten-intolerant, and most are dairy-intolerant as well.
2. absence of symptoms does not equal absence of damage. Some people do have "spontaneous remission," by which I mean that the symptoms go away on their own for a period of time, but it never lasts without either medication or dietary changes (or both). You are actually a prime example. Four years ago, your colonoscopy results did not show MC. Now, not only do you have officially diagnosed MC, you yourself said that this time around you're in more pain, and the disease is more debilitating. Tex has a theory that MC is just the end result of a lifetiime of gluten damage. I agree with him wholeheartedly. By the time we get a positive diagnosis, most of us have been suffering for years without any answers.
It's true that removing gluten and dairy from your diet doesn't always make a difference overnight (or even over several weeks or months). However, that doesn't mean the damage isn't there, and it doesn't mean your body isn't healing. It just takes time to reverse. Depending on which study you read, it's estimated that gluten damage takes anywhere from 2 to 5 years to heal.
I used to think I wasn't gluten-intolerant because I would avoid it for a week or two and not notice any difference. The problem there was twofold: one, gluten is in EVERYTHING, and you must be vigilant to really eliminate it. Two, I wasn't giving myself enough time. After my colonoscopy last year (which, incidentally, showed inflammation and edema, but not a high enough lymphocyte count to warrant a diagnosis of MC), I went GF/DF and mostly SF for two months before ordering Enterolab tests (if you haven't read about them yet, just search the forum). The tests showed I was definitely producing gluten antibodies, even though I hadn't had any gluten for over two months! I also had high-normal results for dairy and soy. My point is that you may not immediately notice the affects of eliminating these things from your diet, but over time your body will slowly start to heal, and your symptoms will improve. It doesn't happen overnight, but hundereds of us here will confirm that it DOES HAPPEN.
I would really encourage you to stay GF, and probably DF too, for at least a couple of months before deciding it doesn't make a difference. You can always change your mind later. You are fortunate that you've caught your MC early enough that you haven't had the more severe flares that some of the members here have had--give yourself the best chance not to go there!
As Tex would say, "Feel free to ask anything." We've all been there! Best of luck!
Cynthia
"Can we fix it? YES WE CAN!" -Bob the Builder
"Can we fix it? YES WE CAN!" -Bob the Builder
Hi K,
Welcome to the board. Cynthia appears to have done a good job of covering a lot of relevant information, so I won't reiterate that.
For unusual cases such as yours, IMO, there are two basic possibilities:
1. You are not gluten-sensitive, which implies that there is a good chance that you also might not be sensitive to casein and/or soy.
2. You have developed a tolerance for gluten, which means that you are automatically asymptomatic.
The surest way to determine your status is by means of a stool test at EnteroLab, to check for antibodies.
The second best way is to do a strict elimination diet for at least a few weeks (preferably for a month or two), and then do a gluten challenge to see if you react. Many people who were previously asymptomatic will react strongly to a challenge following an extended elimination diet.
While the first method (the EnteroLab tests) always works, the second method doesn't work for everyone. For example, I'm sensitive to casein (that is to say, I show a strong positive antibody result to a stool test at EnteroLab) and yet I seem to be asymptomatic in every way to casein, as far as clinical symptoms are concerned. I have eliminated it for months at a time, but a challenge yields no noticeable clinical symptoms. In addition, I can eat it virtually every day for an extended period, and never notice any symptoms.
Since I show a positive EnteroLab result, though, I have eliminated it from my diet and don't plan to ever check it again.
Yes, spontaneous periods of remission are certainly possible, and they do happen to a few lucky individuals (though for most of us that's a mighty rare event).
Be aware that contrary to what most doctors believe, MC is not just a diarrhea-based issue. Many of us (myself included) have alternating diarrhea and constipation, and a few people have constipation-predominant MC. With constipation-predominant MC, food sensitivities are also involved, except that they cause C rather than D. Many people with C-predominant MC wouldn't even know that they have MC were it not for the pain involved, and the characteristic loud gurgling noises.
Tex
Welcome to the board. Cynthia appears to have done a good job of covering a lot of relevant information, so I won't reiterate that.
For unusual cases such as yours, IMO, there are two basic possibilities:
1. You are not gluten-sensitive, which implies that there is a good chance that you also might not be sensitive to casein and/or soy.
2. You have developed a tolerance for gluten, which means that you are automatically asymptomatic.
The surest way to determine your status is by means of a stool test at EnteroLab, to check for antibodies.
The second best way is to do a strict elimination diet for at least a few weeks (preferably for a month or two), and then do a gluten challenge to see if you react. Many people who were previously asymptomatic will react strongly to a challenge following an extended elimination diet.
While the first method (the EnteroLab tests) always works, the second method doesn't work for everyone. For example, I'm sensitive to casein (that is to say, I show a strong positive antibody result to a stool test at EnteroLab) and yet I seem to be asymptomatic in every way to casein, as far as clinical symptoms are concerned. I have eliminated it for months at a time, but a challenge yields no noticeable clinical symptoms. In addition, I can eat it virtually every day for an extended period, and never notice any symptoms.
Since I show a positive EnteroLab result, though, I have eliminated it from my diet and don't plan to ever check it again.
Yes, spontaneous periods of remission are certainly possible, and they do happen to a few lucky individuals (though for most of us that's a mighty rare event).
Be aware that contrary to what most doctors believe, MC is not just a diarrhea-based issue. Many of us (myself included) have alternating diarrhea and constipation, and a few people have constipation-predominant MC. With constipation-predominant MC, food sensitivities are also involved, except that they cause C rather than D. Many people with C-predominant MC wouldn't even know that they have MC were it not for the pain involved, and the characteristic loud gurgling noises.
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.
I agree with Cynthia, I've been GF & DF for about six months and SF & EF for about five months and I am not one of those lucky people who notice a difference in two weeks. I still struggle everyday with feeling fatiuged, eye pain & burning, and in general just not well. However, I would not change the course I'm on because I have seen improvements, they're just very slow. For months, I had no idea what I was sensitive to but I am beginning to relate specific foods with certain symtoms. If I eat Nutella or chocolate covered nuts I get an immediate stomach ache either from the dairy or soy. It is encouraging since previously I just "got sick" EVERY time I ate. I don't often have D as an indicator, which seems odd to me, although I'm not complaining. 
This weekend I ate from a Chinese buffet and immediately got a mild stomach ache and a very tired/fatigued feeling that lasted for almost two days. I've eaten the same limited foods before at the buffet and didn't get sick but I figure it was either a soy contamination on my chicken or the peanutbutter chicken I craved had some sort of wheat in the crunchy outside that I thought was just PB (I believe I have mast cell issues so should have avoided the PB but thought it'd be safe in a small portion). I didn't say much about feeling sick since it was my own fault for straying from the rice, potatoes, and meat diet. Oh well.
I would be cautious about eating just anything. I worry about unnoticed damage occuring when I get away with eating foods that I probably shouldn't even if it's once in a while. I have a long ways to go in healing so I haven't tried adding many new foods back to my diet. At this point, I don't want to loose ground but do experience set backs regularly.
It might be helpful to look into the Enterolab testing if that's an option for you. It was hard for me to limit my diet without seeing the numbers to confirm that I'm headed in the right direction. Best of luck to you.
Deb
This weekend I ate from a Chinese buffet and immediately got a mild stomach ache and a very tired/fatigued feeling that lasted for almost two days. I've eaten the same limited foods before at the buffet and didn't get sick but I figure it was either a soy contamination on my chicken or the peanutbutter chicken I craved had some sort of wheat in the crunchy outside that I thought was just PB (I believe I have mast cell issues so should have avoided the PB but thought it'd be safe in a small portion). I didn't say much about feeling sick since it was my own fault for straying from the rice, potatoes, and meat diet. Oh well.
I would be cautious about eating just anything. I worry about unnoticed damage occuring when I get away with eating foods that I probably shouldn't even if it's once in a while. I have a long ways to go in healing so I haven't tried adding many new foods back to my diet. At this point, I don't want to loose ground but do experience set backs regularly.
It might be helpful to look into the Enterolab testing if that's an option for you. It was hard for me to limit my diet without seeing the numbers to confirm that I'm headed in the right direction. Best of luck to you.
Deb
The chinese meals WILL have contained gluten. No ifs, buts or maybes.
Most soy sauce on the market contains wheat as part of it's manufacture, so unless you are very careful to find one which doesn't you will get glutened. (AYAM brand seems good or check the labels on Tamari - a Japanese style soy sauce which seldom has wheat). In addition, most of the packaged sauces that are used in Chinese cuisine, such as black bean, pepper sauce, hoisin etc are based on wheat starch, unless you get a brand which specifically says gluten free.
Thai food is often a better choice. The stir fry's all have oyster sauce which includes wheat, but basic red and green curry pastes are not based on wheat. That doesn't mean all brands of commercial paste are safe - you really need to check - or that the chef hasn't added a dash of soy sauce etc during cooking. But you should be able to find a safe curry paste to cook at home. Just watch out for satay, as most commercial satay sources also contain dairy.
It takes all of us a long time to learn the hidden sources of gluten to get them out of our diets. Until then we get symptoms and wonder why....
Lyn
Most soy sauce on the market contains wheat as part of it's manufacture, so unless you are very careful to find one which doesn't you will get glutened. (AYAM brand seems good or check the labels on Tamari - a Japanese style soy sauce which seldom has wheat). In addition, most of the packaged sauces that are used in Chinese cuisine, such as black bean, pepper sauce, hoisin etc are based on wheat starch, unless you get a brand which specifically says gluten free.
Thai food is often a better choice. The stir fry's all have oyster sauce which includes wheat, but basic red and green curry pastes are not based on wheat. That doesn't mean all brands of commercial paste are safe - you really need to check - or that the chef hasn't added a dash of soy sauce etc during cooking. But you should be able to find a safe curry paste to cook at home. Just watch out for satay, as most commercial satay sources also contain dairy.
It takes all of us a long time to learn the hidden sources of gluten to get them out of our diets. Until then we get symptoms and wonder why....
Lyn
Welcome K. Everyone here has said what I would have. I was dx with MC this February. I didn't think I was gluten intolerant either because those foods were not giving me problems ( dairy was though) After I ate them.. But the more I read here the more I realized that as long as I am not healed, I need to do what is necessary to heal and listen to all of these good people. My way of thinking is that I would eliminate most of the suspect foods for a few months and then when I felt better, I would "test" them again. And this plan is working very well. Besides the "big four", it's also a good idea to not eat fresh fruits and veggies ( or salads) while you are in a flare. Also maybe peppers and tomato products. These can all be added back in later. All of us are different and if you want to know for sure and can afford to, then get the Enterolab tests.
Like everyone has said, you don't want to keep damaging your intestines. Things will only get worse if you do. Other autoimmune diseases can also pop up if you don't eliminate the inflammatory offenders. Give it some thought and keep us posted on your progress
Leah
Like everyone has said, you don't want to keep damaging your intestines. Things will only get worse if you do. Other autoimmune diseases can also pop up if you don't eliminate the inflammatory offenders. Give it some thought and keep us posted on your progress
Leah
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MaggieRedwings
- King Penguin
- Posts: 3865
- Joined: Tue May 31, 2005 3:16 am
- Location: SE Pennsylvania
Welcome K,
Well everyone has pretty well covered the information you need to head down the road to healing. I spent many years being GF, SF, DF, etc. and am just seeing the results of it. It is different healing methods for everyone but I strongly suggest going GF and DF so the body can heal itself.
Maggie
Well everyone has pretty well covered the information you need to head down the road to healing. I spent many years being GF, SF, DF, etc. and am just seeing the results of it. It is different healing methods for everyone but I strongly suggest going GF and DF so the body can heal itself.
Maggie
Maggie Scarpone
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Resident Birder - I live to bird and enjoy life!
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Resident Birder - I live to bird and enjoy life!
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Deanna in CO
- Adélie Penguin
- Posts: 220
- Joined: Mon Feb 20, 2012 2:16 pm
- Location: Colorado
Agreeing with others here. I've been dealing with the WD for a long time, maybe 10 years. Several years ago I tried an elimination/rotation diet, something I read about in a book - a few days off this, a few days off that. Nothing helped, so I concluded it wasn't my diet. I was wrong. This time, with support from a friend who is a nutritionist, I stayed off gluten, and eventually eliminated dairy, egg, and soy as well. I was not quick to respond - I saw no improvement for weeks and weeks. I've been off gluten now for almost 7 months, off dairy for about 5 months, and off egg and soy for almost 4 months, and improvement has been much slower than I' d like, but it has definitely been there. I was finally able to do some of the Enterolab testing a month or so ago, and it confirmed that I was indeed sensitive to gluten (still making antibodies even after 6 months off it), dairy (ditto after 4 months), and egg (soy results were inconclusive but after experimenting a bit I have a feeling I'm reacting to it as well).
In case I'd had any doubts, the night before last I made some BBQ ribs and realized too late that the Liquid Smoke I put in the sauce had "natural flavors," which often contain gluten. I was very careful to eat nothing else questionable. Yesterday the WD, which had been gone for several weeks, showed up full-force and did not let up all day (I'm some better today but still nowhere near as good as I'd been.)
I've heard from others who have celiac disease or gluten sensitivity that it does take weeks or months for many of us to show improvements after going GF. And it stands to reason, if you think about it - we've allowed the damage to our intestines to go on for years, and it doesn't make sense to expect it to improve in a few days or even a couple of weeks. I'll say one thing, though - after this week I don't plan to ever expose myself intentionally to gluten again!
Best wishes as you begin your own detective work to figure out what you specifically are reacting to.
Deanna
In case I'd had any doubts, the night before last I made some BBQ ribs and realized too late that the Liquid Smoke I put in the sauce had "natural flavors," which often contain gluten. I was very careful to eat nothing else questionable. Yesterday the WD, which had been gone for several weeks, showed up full-force and did not let up all day (I'm some better today but still nowhere near as good as I'd been.)
I've heard from others who have celiac disease or gluten sensitivity that it does take weeks or months for many of us to show improvements after going GF. And it stands to reason, if you think about it - we've allowed the damage to our intestines to go on for years, and it doesn't make sense to expect it to improve in a few days or even a couple of weeks. I'll say one thing, though - after this week I don't plan to ever expose myself intentionally to gluten again!
Best wishes as you begin your own detective work to figure out what you specifically are reacting to.
Deanna
K,
Do your 4-year flare-ups coincide with stressful events in your life? Feeling run down before the flare? Were you taking any medications before the flare started, like NSAIDS (motrin, etc) for pain, stomach acid reducers (PPIs), or antidepressants? Any new supplements? Your flare could be drug-induced or stress induced. Do you have other symptoms with your flares? Skin rashes? Joint pains?
Do your 4-year flare-ups coincide with stressful events in your life? Feeling run down before the flare? Were you taking any medications before the flare started, like NSAIDS (motrin, etc) for pain, stomach acid reducers (PPIs), or antidepressants? Any new supplements? Your flare could be drug-induced or stress induced. Do you have other symptoms with your flares? Skin rashes? Joint pains?
yes to both
Yes, each episode was proceeded by stressful events. I was taking NSAIDS (baby aspirin) for 6 years. Have other members had stress induced flare-ups? K[/b]
Yes, may here report stress-induced flares or initial disease onset. Especially after deaths of loved ones, etc. Some report onset or flares after Epstein Barr virus infection or reactivation. I am currently interested in this topic. It seems stress may turn down your defenses, allowing hidden infections to become more active (could be others besides EBV, although most people have been exposed to EBV). Of course many report flares after GI infections or antibiotic use too.