Hi Tex,
I am brand new to posting here even though I have been reading for a few months. Here's a quick summary of my story: Developed what I thought was an acute GI infection over 2 months ago. Acute Diarrhea for one week and stayed home for a few days. Also had mild fever. Started to get better; went to an urgent care center and was told I had diverticulosis. Put me on Cipro and Flagyl and got worse with more diarrhea and bloating. Saw my PCP two days later who took me off that. She also had me do a CT scan with contrast because of my family history of cancer. It was negative. Got better over 1-2 weeks. She had me do a 2 week treatment with Prilosec because of my dyspepsia symptoms. It was better, then everything sort of came back with a vengance including upper and lower abdominal pain. At this time I was so concentrating on my pseudo indigestion symptoms. During one week all I could eat was jello and I didn't even want to do that. Lost 10-15 lbs. My PCP had me do an upper and lower colonoscopy. Diagnosed with acute microscopic colitis, and gastric erosion (no ulcer). I was told to start taking omeprazole which I did for a little while but ended up stopping. During this time I had another scope done with ultrasound to check on a muscle tumor in my stomach that they found. This doctor took one look at me even before he put me under and asked if I had Celiac disease. I told him I never thought of that, but that my wife had been gluten free for over a year secondary to IBS.
To make a long story short he put me on entocort and then I found your website and had the Enterolab testing. i tested positive for Gluten, Dairy, Soy and egg. My celiac blood test was negative. My GI just took me off Entocort a week ago (only on it for one month) and feel much better, now that I am working on getting my diet in order (even though it has been hard) I had a minor flare up this week because I ate a homemade mixture that had some gluten free granola and the oats may have been the culprit.
Do we know what causes MC and can it be an acute viral or bacterial organism that then sets everything in motion, or is it most likely that the food sensitivities have built up over time and it finally came to a head, or is it a combination of both. My GI was not familiar with the whole Enterolab/food sensitivity thing but seemed very open to me figuring out these things and finding what works for me.
What starts MC
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Welcome!!
I believe, and I'm not speaking for the entire group here, that people can arrive at MC through a number of different pathways:
For some it is drug induced - long term use of NSAIDS, antidepressants, PPIs (like your Prilosec), antibiotics, others.
For others it may start with an acute GI infection, often overseas, which permanently alters the gut flora.
For many, it can be the result of gluten intolerance or celiac disease.
Vaccines and other immune stimulating factors can play a triggering role.
Systemic or GI yeast overgrowth (candida) seems to be a factor for many.
But the common denominator is that these things injure the lining of the intestines, causing the normally tight junctions to open up, allowing food proteins (antigens) into the bloodstream (leaky gut). These antigens are then presented to the immune system, which often decides they are foreign invaders, and voila, you have a food intolerance! Even if the above factors can be corrected, the food intolerance (if it is immune system mediated, not just a sensitivity, stays with you for life). Other risk factors for MC include:
Low vitamin D levels
Changes in female hormone levels (pregnancy, menopause, birth control pills, toxic estrogen mimicking chemicals, etc)
Other auto-immune diseases (especially thyroid)
Genetics predisposiing to gluten sensitivity (especially celiac genes - HLADQ2 and 8)
I've probably missed something. I'm sure others will come along with their opinions. You are lucky your wife is already GF - that will make the diet so much easier for you.
I believe, and I'm not speaking for the entire group here, that people can arrive at MC through a number of different pathways:
For some it is drug induced - long term use of NSAIDS, antidepressants, PPIs (like your Prilosec), antibiotics, others.
For others it may start with an acute GI infection, often overseas, which permanently alters the gut flora.
For many, it can be the result of gluten intolerance or celiac disease.
Vaccines and other immune stimulating factors can play a triggering role.
Systemic or GI yeast overgrowth (candida) seems to be a factor for many.
But the common denominator is that these things injure the lining of the intestines, causing the normally tight junctions to open up, allowing food proteins (antigens) into the bloodstream (leaky gut). These antigens are then presented to the immune system, which often decides they are foreign invaders, and voila, you have a food intolerance! Even if the above factors can be corrected, the food intolerance (if it is immune system mediated, not just a sensitivity, stays with you for life). Other risk factors for MC include:
Low vitamin D levels
Changes in female hormone levels (pregnancy, menopause, birth control pills, toxic estrogen mimicking chemicals, etc)
Other auto-immune diseases (especially thyroid)
Genetics predisposiing to gluten sensitivity (especially celiac genes - HLADQ2 and 8)
I've probably missed something. I'm sure others will come along with their opinions. You are lucky your wife is already GF - that will make the diet so much easier for you.
Hi j,
Welcome to the board. Congratulations on your proactive approach - you seem to be well on your way toward getting your MC under control, and keeping it that way.
Zizzle pretty well summed it up - no one knows the exact mechanism by which MC is actually initiated. All we know is that there are certain genes that seem to predispose most of us to gluten-sensitivity, which apparently are triggered at the same time as the genes that predispose to MC are triggered, and the triggering events can cover a very wide range of possibilities, from drug reactions, to infections of various types, and even including stopping a long-term smoking habit, in some cases. Stress has never been scientifically proven to be a factor, but our accumulated experience shows that stress does indeed seem to play a huge role in the onset of the disease, and in subsequent flares, for many people.
In your case, it could have been the infection, or it might have been an antibiotic, (though Cipro is one of the safest antibiotics for someone with MC to take - in fact, Cipro usually brings remission of symptoms for the duration of the treatment). My guess is that the PPI was probably the "straw that broke the camel's back", though, because PPIs tend to allow more pathogenic bacteria to survive their passage through the stomach, (due to the weaker acid dilution), and this tends to cause adverse imbalances in gut bacteria. All this is simply a guess of course - you'll probably never know for sure. There's a good chance that the combination of all those events just happened to create a "perfect storm", that resulted in your development of MC.
Many of us here do seem to react to even pure oats, despite the claim by many "experts", that most celiacs can tolerate pure oats. Of course, most of us are not celiacs, but the non-celiac type of gluten-sensitivity that we have makes us just as sensitive as celiacs, and in some cases, more sensitive than the average celiac. I suspect that the trials that they used to determine that conclusion were not nearly long enough to reliably discover the reactions. It takes a while for the adaptive immune system to build up an antibody level sufficient to trigger a reaction, for someone who hasn't eaten that particular food in many years. I did an oat challenge several years ago, and it took me 6 weeks, to begin to react, and then it took another 6 weeks for the D to finally end, after I stopped eating it. After that point, whenever I would eat oats, they would purge the contents of my intestines within a few hours, so there's no question that I'm very sensitive to them.
Anyway, the good news is that even though MC cannot be cured, it can certainly be controlled, and the diet is quite effective at that, so long as you manage to figure out all of your food-sensitivities, and avoid them. Again, welcome aboard, and please feel free to ask anything. You seem to be well on your way toward getting your life back.
Tex
Welcome to the board. Congratulations on your proactive approach - you seem to be well on your way toward getting your MC under control, and keeping it that way.
Zizzle pretty well summed it up - no one knows the exact mechanism by which MC is actually initiated. All we know is that there are certain genes that seem to predispose most of us to gluten-sensitivity, which apparently are triggered at the same time as the genes that predispose to MC are triggered, and the triggering events can cover a very wide range of possibilities, from drug reactions, to infections of various types, and even including stopping a long-term smoking habit, in some cases. Stress has never been scientifically proven to be a factor, but our accumulated experience shows that stress does indeed seem to play a huge role in the onset of the disease, and in subsequent flares, for many people.
In your case, it could have been the infection, or it might have been an antibiotic, (though Cipro is one of the safest antibiotics for someone with MC to take - in fact, Cipro usually brings remission of symptoms for the duration of the treatment). My guess is that the PPI was probably the "straw that broke the camel's back", though, because PPIs tend to allow more pathogenic bacteria to survive their passage through the stomach, (due to the weaker acid dilution), and this tends to cause adverse imbalances in gut bacteria. All this is simply a guess of course - you'll probably never know for sure. There's a good chance that the combination of all those events just happened to create a "perfect storm", that resulted in your development of MC.
Many of us here do seem to react to even pure oats, despite the claim by many "experts", that most celiacs can tolerate pure oats. Of course, most of us are not celiacs, but the non-celiac type of gluten-sensitivity that we have makes us just as sensitive as celiacs, and in some cases, more sensitive than the average celiac. I suspect that the trials that they used to determine that conclusion were not nearly long enough to reliably discover the reactions. It takes a while for the adaptive immune system to build up an antibody level sufficient to trigger a reaction, for someone who hasn't eaten that particular food in many years. I did an oat challenge several years ago, and it took me 6 weeks, to begin to react, and then it took another 6 weeks for the D to finally end, after I stopped eating it. After that point, whenever I would eat oats, they would purge the contents of my intestines within a few hours, so there's no question that I'm very sensitive to them.
Anyway, the good news is that even though MC cannot be cured, it can certainly be controlled, and the diet is quite effective at that, so long as you manage to figure out all of your food-sensitivities, and avoid them. Again, welcome aboard, and please feel free to ask anything. You seem to be well on your way toward getting your life back.
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.
How long to eat with intolerances
Sorry if these questions have been dealt with before, but wanted to know if these intolerances will be with me for life or if I can at some point start to add them again. The Enterolab nurse as I recall said I would probably be gluten free for life, but maybe the others would be able to be added in in a couple of years.
I don't have much experience with this, and have only been on the diet for one year. I can tell you that I tested in the teens for soy, and I can safely eat fermented/hydrolyzed soy products, namely GF soy sauce. I'm also OK with small amounts of soy lecithin (in dark chocolate) and soybean oil. It may be that you will only react to larger doses later on. For every intolerance, there seems to be a threshold level, above which you react. Gluten and dairy seem to have the lowest thresholds, but everyone is different in how and what they react to.
Baring any miraculous genetic changes, gluten-sensitivity is virtually always forever. There are a few "ifs", "ands", or "buts", that occasionally allow a small percentage of individuals to regain the ability to reintroduce some of the other foods which previously caused an autoimmune reaction, but for most of us, we will remain sensitive to the most common foods associated with triggering MC, (such as casein and soy), for the rest of our lives. Sensitivity to yeast usually disappears after the MC symptoms are resolved. Foods which cause irritation when MC is active, such as fiber, fruits, raw vegetables, (especially lettuce), spicy food, sugars, etc., can usually be returned to the diet, after the gut has had sufficient time to heal.
MC can be controlled, but it can never be "cured". Careful adherence to the diet will allow the gut to heal, so that after a number of years, colonic mucosal histoligy will return to normal, (IOW, biopsies will be negative for MC), but if you begin eating gluten, (or any other trigger for the disease, in your particular case), the symptoms will return.
Tex
MC can be controlled, but it can never be "cured". Careful adherence to the diet will allow the gut to heal, so that after a number of years, colonic mucosal histoligy will return to normal, (IOW, biopsies will be negative for MC), but if you begin eating gluten, (or any other trigger for the disease, in your particular case), the symptoms will return.
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.