Hello all, I am 37 years old and had my first sign of something wrong 13 years ago. I had blood in my stool. I randomly picked a GI out of the phone book and had my first colonoscopy. I can't remember what he said, but it amounted to "not much". I think his recommendation was Pepto. I may have gone back one more time, but never got much information about what was wrong with me. The D progressively got worst, but had no idea why. Figured I would just have to live with it. Fast forward 7 years, married with one child, I couldn't take it anymore. I made an appt with another GI (different state) and had my 2nd colonoscopy. He managed to give me a Dx...Microscopic Colitis! Started me on Entocort which gave me instant relief. Started to decrease dosage and put me on something else (cannot remember) and the D, cramping, bloating came back with a vengeance. I also got pregnant at this time. So the plan was to take Pepto all day everyday (what is seemed like). I didn't like that, and I didn't really want to take anything while pregnant. Fast forward 5 years. My husband urged me to see a pain doctor. I explained my symptoms, and also mentioned the constant headaches I have had since I was in college. He asked me how much Ibuprofen I took. When i thought about it, I was taking Ibuprofen every day sometimes twice a day. He told me stop for a month. I had 3 migraines. He recommended that I talk to my OBGYN about changing birth control. He said I was on the lowest estrogen available. I switched OBGYN's and he recommended a different BCpill. My headaches are gone. I have completely stopped taking Ibuprofen, and am totally convinced that the Ibuprofen is what caused my MC. I continued to suffer with MC for another year. Constant cramping, urgency, up about 3 to 4 times at night to go to the bathroom. Anxious about going out of town with friends, going out to eat, or being anywhere there wasn't a bathroom. Until about 3 months ago when my SIL recommended the Wheat Belly book. First time I have ever heard anything about a gluten free diet. I have now been GF since April 1st. My cramping, bloating, urgency are completely gone (except for 2 times I inadvertently ate gluten). I sleep all night, and can actually go on a date with my husband without having to spend 30 minutes in the bathroom. The only thing I still have is D. I have read on here that it may take 6 months for the D to go away. I think I will wait until this fall, and if I still have issues I will order the test.
All of that to say this....thank you so much for this website. It has so much helpful information, and it's nice to know that I am not alone. I do believe that none of this would have happened had I not been on the wrong birth control all of this time. My choice in doctors throughout the years have been poor, and so thankful to the Wheat Belly book that introduced me to the GF diet.
Finally some information!
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
If six months comes and you aren't where you'd like to be please don't give up thinking all your efforts were a waste, it could take more time. Hopefully not, since you are already noticing a difference.
I was on birth control pills for over 15 years and I regret not being more informed. I also suffered from daily headaches as a teen and had migraines all during my 20s. Those were menstrual related but I had more days with migraines in a month than without. I would take six ibuprofen at a time because the pain was so bad. Sad thing is, it didn't even help. My diet was full of processed foods and I loved sugar. Throw in bad genes (not confirmed but I have a strong suspicion given family health history) and you get a dx of CC out of the blue. I came down with the flu one weekend and the D never went away after the flu passed. It's odd to know he exact day but it was a lifetime in he making.
There is life saving advice here- it's great! Best wishes for continued progress.
I was on birth control pills for over 15 years and I regret not being more informed. I also suffered from daily headaches as a teen and had migraines all during my 20s. Those were menstrual related but I had more days with migraines in a month than without. I would take six ibuprofen at a time because the pain was so bad. Sad thing is, it didn't even help. My diet was full of processed foods and I loved sugar. Throw in bad genes (not confirmed but I have a strong suspicion given family health history) and you get a dx of CC out of the blue. I came down with the flu one weekend and the D never went away after the flu passed. It's odd to know he exact day but it was a lifetime in he making.
There is life saving advice here- it's great! Best wishes for continued progress.
Hi MC,
Welcome to our internet family. I'm sorry that it took so many years of suffering before you were able to begin finding solutions. The routine followed by the medical community when dealing with this disease typically leaves a lot to be desired, unfortunately, because precious few doctors actually understand this disease, let alone know how to properly treat it. But at least you are on the right track now, so you will get your life back after some of the damage to your digestive system is able to heal.
If the D doesn't completely resolve, or if you achieve remission and then soon thereafter seem to relapse, just as you have suggested, that probably means that you have additional food sensitivities. Most of us are also sensitive to casein (the primary protein in all dairy products), and more than half of us are sensitive to soy. Some also have other food sensitivities, of course.
You're probably correct that the Ibuprofen caused your MC, and if that's the case, then the mesalamine-based drugs that many doctors prescribe to treat MC will also cause you to react, because mesalamine is derived from salicylic acid, so it's closely related to NSAIDs. Those drugs include Asacol, Colazal, Pentasa, Apriso, Lialda, Salofalk, Canasa, Rowasa, etc.
Again, welcome aboard, and please feel free to ask anything. I hope that you continue to make steady progress, and please keep us updated.
Tex
Welcome to our internet family. I'm sorry that it took so many years of suffering before you were able to begin finding solutions. The routine followed by the medical community when dealing with this disease typically leaves a lot to be desired, unfortunately, because precious few doctors actually understand this disease, let alone know how to properly treat it. But at least you are on the right track now, so you will get your life back after some of the damage to your digestive system is able to heal.
If the D doesn't completely resolve, or if you achieve remission and then soon thereafter seem to relapse, just as you have suggested, that probably means that you have additional food sensitivities. Most of us are also sensitive to casein (the primary protein in all dairy products), and more than half of us are sensitive to soy. Some also have other food sensitivities, of course.
You're probably correct that the Ibuprofen caused your MC, and if that's the case, then the mesalamine-based drugs that many doctors prescribe to treat MC will also cause you to react, because mesalamine is derived from salicylic acid, so it's closely related to NSAIDs. Those drugs include Asacol, Colazal, Pentasa, Apriso, Lialda, Salofalk, Canasa, Rowasa, etc.
Again, welcome aboard, and please feel free to ask anything. I hope that you continue to make steady progress, and please keep us updated.
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.
Welcome!
Wow, you have been suffering for a long time. Tex is right in suspecting other food intolerances. I would take out dairy and see if your D subsides. I know . It's hard, but it may be the answer you are looking for. Once our MC is triggered, so are the food intolerances. Some of us are lucky enough to just have gluten on that list, but most of us have more. Also, you may want to cut back on RAW fruits and veggies until the D is under control. It's very hard for an inflamed gut to break down and digest the sugars and fiber in all those foods. I cut them all out until I was better. it made a huge difference for me. Then you can test each thing back in one at a time. I have added back the veggies, but the fruit still remains a problem... even after 1 1/2 years. Hang in there. It takes time to heal and figure it all out.
Leah
Wow, you have been suffering for a long time. Tex is right in suspecting other food intolerances. I would take out dairy and see if your D subsides. I know . It's hard, but it may be the answer you are looking for. Once our MC is triggered, so are the food intolerances. Some of us are lucky enough to just have gluten on that list, but most of us have more. Also, you may want to cut back on RAW fruits and veggies until the D is under control. It's very hard for an inflamed gut to break down and digest the sugars and fiber in all those foods. I cut them all out until I was better. it made a huge difference for me. Then you can test each thing back in one at a time. I have added back the veggies, but the fruit still remains a problem... even after 1 1/2 years. Hang in there. It takes time to heal and figure it all out.
Leah
Welcome MC Okie!!
Glad you found us, and your way to the GF diet. I was on the birth control pill for 10 years, and can only imagine what damage it did. The only silver lining is that it minimized my horrible menstrual cramps, so I didn't need ibuprofen every month. Luckily having kids must have altered my uterus and I am cramp-free now. I agree that you ought to suspect dairy products next, then soy. I cut out all 3 at the same time after I had Enterolab testing, and I was 80% better within days.
Glad you found us, and your way to the GF diet. I was on the birth control pill for 10 years, and can only imagine what damage it did. The only silver lining is that it minimized my horrible menstrual cramps, so I didn't need ibuprofen every month. Luckily having kids must have altered my uterus and I am cramp-free now. I agree that you ought to suspect dairy products next, then soy. I cut out all 3 at the same time after I had Enterolab testing, and I was 80% better within days.
1987 Mononucleosis (EBV)
2004 Hypomyopathic Dermatomyositis
2009 Lymphocytic Colitis
2010 GF/DF/SF Diet
2014 Low Dose Naltrexone
2004 Hypomyopathic Dermatomyositis
2009 Lymphocytic Colitis
2010 GF/DF/SF Diet
2014 Low Dose Naltrexone