Hi everyone,
My name is Megan and I found this board through some random Googling and you all seem like a really nice and helpful bunch. I've been having GI issues for about the past 10 years (I'm 30 now) and I was "diagnosed" with IBS about 4 years ago, however the treatments that my docs have suggested are not even touching my symptoms. I have D 7-10 times per day, and there is never any change in consistency. I was put on a low dose of Amitriptylene last January, and that helped a lot for a couple of months, but my symptoms returned. I've taken Immodium to try to help my symptoms, but even that isn't helping anymore. I was at my GI doc about 7 weeks ago and they suggested doubling my dosage of Amitriptylene, but it hasn't made any change. I have a follow-up appointment tomorrow, and from my discussions with the doc 7 weeks ago, they are most likely going to have me come in for a colonoscopy to test for MC. I had a colonoscopy 4 years ago and it came back completely clean (har har... pun), thus the IBS diagnosis, since they didn't know what else to call it. I don't believe they did biopsies then however.
So, long story short, whether it turns out I have MC or not, I still struggle with my symptoms and wondered if there are things that I should make sure to bring up with my doc tomorrow that people often forget, and whether there are some tried and tested techniques that have helped you all (whether it be with just IBS or the MC - since I'm still not sure what is going on with me). I've never had a doc talk with me about dietary changes I could make (aside from pushing the fiber - which incidentally makes life worse). I'd be grateful for any words of wisdom you could provide me!! Thanks in advance!
Megan
New kid...
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Hi Megan,
Have you been tested (by biopsy) for celiac? I would def try going gluten free if you haven't already and see how you feel. I am gf bc I have celiac and now soy free and dairy free (most of the time). I would have them take biopsies to see if you have MC/LC and even ck for an abundance of mast cells in your GI tract. Also, if you are having an endoscopy too, ck for celiac. Good Luck!
ps-have you ever tried Endocort or any other meds specifically for colitis?
Jenny
Have you been tested (by biopsy) for celiac? I would def try going gluten free if you haven't already and see how you feel. I am gf bc I have celiac and now soy free and dairy free (most of the time). I would have them take biopsies to see if you have MC/LC and even ck for an abundance of mast cells in your GI tract. Also, if you are having an endoscopy too, ck for celiac. Good Luck!
ps-have you ever tried Endocort or any other meds specifically for colitis?
Jenny
Hi Megan,
Welcome to the board. Based on your symptoms, the odds are very high that if the GI doc does her or his job (and takes enough biopsy samples from all sections of the colon to ensure a reasonably good chance of making a correct diagnosis), your diagnosis will be MC. The fact that fiber makes your symptoms worse is good evidence that you have MC, because fiber is definitely contraindicated for this disease.
Your GI doc almost surely failed to take biopsy samples 4 years ago because she or he assumed that you were too young to have MC.
GI specialists seem to be having a very difficult time understanding this disease, and many of them still believe that it is a disease of older women. The fact of the matter is that anyone (of either gender) can develop the disease at any age, including infants.
As Jenny mentioned, you might also have celiac disease, because GI docs are notorious for failing to even look for celiac disease, let alone properly diagnose it. Unless you actually have fully-developed celiac disease, though, your test results for celiac will be negative (they have no way to officially diagnose the early stages of celiac disease or non-celiac gluten sensitivity). And if you test negative for celiac disease, there is little point in discussing dietary changes with your doctor, because most of them still argue that diet has absolutely nothing to do with MC. They can't help it — it's the way they were trained, and it seems to take forever for them to learn the truth, unfortunately. GI specialists especially, can be very hard-headed at times because they consider themselves to be experts, and they bill their patients accordingly, so they feel obligated to at least pretend to be an expert on the disease, whether they actually know much about it or not. 
Incidentally, most of us here are very sensitive to gluten, (at least as sensitive as the average celiac), but we always test negative to the classic celiac tests unless we actually have fully-developed celiac disease.
That's why most of us are here — so that we can compare notes and learn about the best ways to treat the disease, even when our doctors have been no help at all. Incidentally, while amitriptylene does sometimes help certain patients who have MC, for many of us, it can actually trigger the disease. There are many other drugs that can also trigger MC, and sometimes, just stopping the use of those drugs can bring remission. These drugs include, (but are not limited to), NSAIDs, antibiotics, SSRIs, SNRIs, PPIs, statins, beta blockers, bisphosphinates and others.
Again, welcome aboard, and please feel free to ask anything.
Tex (Wayne)
Welcome to the board. Based on your symptoms, the odds are very high that if the GI doc does her or his job (and takes enough biopsy samples from all sections of the colon to ensure a reasonably good chance of making a correct diagnosis), your diagnosis will be MC. The fact that fiber makes your symptoms worse is good evidence that you have MC, because fiber is definitely contraindicated for this disease.
Your GI doc almost surely failed to take biopsy samples 4 years ago because she or he assumed that you were too young to have MC.
GI specialists seem to be having a very difficult time understanding this disease, and many of them still believe that it is a disease of older women. The fact of the matter is that anyone (of either gender) can develop the disease at any age, including infants.As Jenny mentioned, you might also have celiac disease, because GI docs are notorious for failing to even look for celiac disease, let alone properly diagnose it. Unless you actually have fully-developed celiac disease, though, your test results for celiac will be negative (they have no way to officially diagnose the early stages of celiac disease or non-celiac gluten sensitivity). And if you test negative for celiac disease, there is little point in discussing dietary changes with your doctor, because most of them still argue that diet has absolutely nothing to do with MC.
They can't help it — it's the way they were trained, and it seems to take forever for them to learn the truth, unfortunately. GI specialists especially, can be very hard-headed at times because they consider themselves to be experts, and they bill their patients accordingly, so they feel obligated to at least pretend to be an expert on the disease, whether they actually know much about it or not. Incidentally, most of us here are very sensitive to gluten, (at least as sensitive as the average celiac), but we always test negative to the classic celiac tests unless we actually have fully-developed celiac disease.That's why most of us are here — so that we can compare notes and learn about the best ways to treat the disease, even when our doctors have been no help at all. Incidentally, while amitriptylene does sometimes help certain patients who have MC, for many of us, it can actually trigger the disease. There are many other drugs that can also trigger MC, and sometimes, just stopping the use of those drugs can bring remission. These drugs include, (but are not limited to), NSAIDs, antibiotics, SSRIs, SNRIs, PPIs, statins, beta blockers, bisphosphinates and others.
Again, welcome aboard, and please feel free to ask anything.
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.
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Hi Megan,
All I want to add to what has already been said is that the diagnosis of IBS is really just an admission that your doctor doesn't know what is causing your symptoms, so instead of just admitting ignorance doctors will say you have "ibs". I also had this diagnosis and was told to eat more fiber by a GI even after I said that fiber makes things worse.. The only useful advice I have gotten is on this forum. I had enterolab testing that indicated sensitivity to gluten, soy, dairy and eggs (the big 4) along with a variety of other things. I have eliminated all of these and my life is no longer spent in and out of the bathroom. I am not 100% but still so much better than before the dietary changes.
Jean
All I want to add to what has already been said is that the diagnosis of IBS is really just an admission that your doctor doesn't know what is causing your symptoms, so instead of just admitting ignorance doctors will say you have "ibs". I also had this diagnosis and was told to eat more fiber by a GI even after I said that fiber makes things worse.. The only useful advice I have gotten is on this forum. I had enterolab testing that indicated sensitivity to gluten, soy, dairy and eggs (the big 4) along with a variety of other things. I have eliminated all of these and my life is no longer spent in and out of the bathroom. I am not 100% but still so much better than before the dietary changes.
Jean
Re: New kid...
Hi Megan,Megs wrote:Hi everyone,
My name is Megan and I found this board through some random Googling and you all seem like a really nice and helpful bunch. I've been having GI issues for about the past 10 years (I'm 30 now) and I was "diagnosed" with IBS about 4 years ago, however the treatments that my docs have suggested are not even touching my symptoms. I have D 7-10 times per day, and there is never any change in consistency. I was put on a low dose of Amitriptylene last January, and that helped a lot for a couple of months, but my symptoms returned. I've taken Immodium to try to help my symptoms, but even that isn't helping anymore. I was at my GI doc about 7 weeks ago and they suggested doubling my dosage of Amitriptylene, but it hasn't made any change. I have a follow-up appointment tomorrow, and from my discussions with the doc 7 weeks ago, they are most likely going to have me come in for a colonoscopy to test for MC. I had a colonoscopy 4 years ago and it came back completely clean (har har... pun), thus the IBS diagnosis, since they didn't know what else to call it. I don't believe they did biopsies then however.
So, long story short, whether it turns out I have MC or not, I still struggle with my symptoms and wondered if there are things that I should make sure to bring up with my doc tomorrow that people often forget, and whether there are some tried and tested techniques that have helped you all (whether it be with just IBS or the MC - since I'm still not sure what is going on with me). I've never had a doc talk with me about dietary changes I could make (aside from pushing the fiber - which incidentally makes life worse). I'd be grateful for any words of wisdom you could provide me!! Thanks in advance!
Megan
Welcome to the board. Definitely read up as there is a lot of good information on this board. I hope that your GI does a colonscopy and takes multiple biopsies, as Tex suggested. It sounds as though you have MC. If so, many of us have had success with budesonide or Entocort, which is a steroid that stays in the gut. It allows you to heal while you change your diet. Many of us have had success with going gluten/dairy and soy free. My GI doctor tends to be what Tex describes....doesn't believe in dietary changes but was amazed that I was able to go off of the Entocort and other prescription meds. She suggested that I "try adding gluten back in my diet" just for the heck of it....ummmmm NO Thanks! Good luck to you. Keep us posted after your GI appt.
Thanks for the advice, everyone! I think my step 1 is to get through the colonoscopy and see if MC is the root issue here. I will definitely be reading through the boards on the gluten free diet options as well. At this point, I'm willing to try anything that has worked for others! I will update after my appointment this afternoon. Thanks again! It is nice to finally feel validated with my symptoms. I'm starting to feel like the docs just keep throwing pills at me to see what sticks :(
Hi and welcome!
I have taken Amitriptyline for years and one thing is does is relieve any pain you may be suffering but really doesn't help the D. And it's a very hard drug to get off of. I've been on it for 20 years and trying to get off of it is a nightmare I don't intend on going through again. MC is bad enough! Like the others said, it does sound like LC. I have Celiac as well. I've been gluten free since July 1 and dairy free since Aug. 24. My D had gone down from 4-6 times a day to 1-3 times after eliminating those foods. I lost 15 pounds (too skinny to begin with) and freaked out and started on the Pepto regimen after taking Asacol which made me worse. The Pepto treatment has worked great for me but Imodium always worked great as well. I'm currently weaning off the Pepto in hopes that it has helped to heal my gut as well as my major diet changes. People often relapse after getting off meds if they haven't tweaked their diet enough. Some have been able to manage with just diet alone. And when it comes to meds, Entocort seems to be the one that works the best.
Try to avoid the irritant foods as well for now, like raw veggies and fruits, nightshade veggies and peppery things and nuts. I eat mainly well ripened bananas, rice, lots of meat (we need lots of protein when we are healing), squash, zucchini (all well peeled and cooked well) and some spinach. I also make lots of homemade chicken/veggie/rice soup. Some people tolerate potatoes but I don't as they have always caused gas for me so it only exacerbates the D. And, yes, LOW fiber! I do eat some processed GF junk foods like GF bread and Quinoa pasta but I have a feeling I may need to eliminate those once I get off meds.
Keep us updated and do consider the Enterolabs testing.
Take care,
Terri
I have taken Amitriptyline for years and one thing is does is relieve any pain you may be suffering but really doesn't help the D. And it's a very hard drug to get off of. I've been on it for 20 years and trying to get off of it is a nightmare I don't intend on going through again. MC is bad enough! Like the others said, it does sound like LC. I have Celiac as well. I've been gluten free since July 1 and dairy free since Aug. 24. My D had gone down from 4-6 times a day to 1-3 times after eliminating those foods. I lost 15 pounds (too skinny to begin with) and freaked out and started on the Pepto regimen after taking Asacol which made me worse. The Pepto treatment has worked great for me but Imodium always worked great as well. I'm currently weaning off the Pepto in hopes that it has helped to heal my gut as well as my major diet changes. People often relapse after getting off meds if they haven't tweaked their diet enough. Some have been able to manage with just diet alone. And when it comes to meds, Entocort seems to be the one that works the best.
Try to avoid the irritant foods as well for now, like raw veggies and fruits, nightshade veggies and peppery things and nuts. I eat mainly well ripened bananas, rice, lots of meat (we need lots of protein when we are healing), squash, zucchini (all well peeled and cooked well) and some spinach. I also make lots of homemade chicken/veggie/rice soup. Some people tolerate potatoes but I don't as they have always caused gas for me so it only exacerbates the D. And, yes, LOW fiber! I do eat some processed GF junk foods like GF bread and Quinoa pasta but I have a feeling I may need to eliminate those once I get off meds.
Keep us updated and do consider the Enterolabs testing.
Take care,
Terri
Diagnosed with Lymphocytic Colitis in July, 2012 then with Celiac in November, 2012.
Welcome Megan!
I too had "IBS" beginning in my 20s, and was diagnosed with MC (LC) at age 35. Luckily my GI went straight for biopsies during the first colonoscopy. I then discovered my gluten and dairy intolerance, and I'm soy and sesame-free too. I found some relief early on taking Pepto Bismol tablets a few times a day. I still take it if I get mini-flares. Most recently, I got even more relief taking Claritin Readitabs once a day (truly remarkable difference -- wish I had tried it much sooner!!). But without the diet changes, I'd still be at square one. I remember thinking I was sensitive to greasy, spicy foods, lactose and alcohol. Little did I know gluten and milk protein were my worst offenders. It's often "comfort food" that we least suspect...
I too had "IBS" beginning in my 20s, and was diagnosed with MC (LC) at age 35. Luckily my GI went straight for biopsies during the first colonoscopy. I then discovered my gluten and dairy intolerance, and I'm soy and sesame-free too. I found some relief early on taking Pepto Bismol tablets a few times a day. I still take it if I get mini-flares. Most recently, I got even more relief taking Claritin Readitabs once a day (truly remarkable difference -- wish I had tried it much sooner!!). But without the diet changes, I'd still be at square one. I remember thinking I was sensitive to greasy, spicy foods, lactose and alcohol. Little did I know gluten and milk protein were my worst offenders. It's often "comfort food" that we least suspect...
Welcome Meagan. It will be interesting to see what your colonoscopy/biopsies tell. It certainly sounds like MC. I had "IBS" also at least ten years prior to Dx ( eye roll). Even if you don't have celiac, you probably should go gluten free for a couple months anyway and see if it helps ( it takes a while to be out of your system). Dairy was a BIG culprit for me.... as was raw fruits and veggies.
First things first. Dx. Let us know how it goes. We are all here to help :)
Leah
First things first. Dx. Let us know how it goes. We are all here to help :)
Leah
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Joefnh
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Hello Megan and welcome to the group. In a lot of cases patients are initially misdiagnosed with IBS when MC is the correct diagnosis. From what you have mentioned it does sound like MC may very well be the culprit. As you mentioned a high fiber diet can exacerbate your symptoms. You have been given a lot of great advice already and I would chime in that diet is the best treatment for MC. For just about all of us avoiding gluten soy and probably dairy will bring about remission.
In addition avoiding foods that are high in fiber and any uncooked fruits and vegetables will be quite helpful. With MC our GI systems are inflamed and irritated and eating foods that are not well cooked can cause additional irritation and an increase in the symptoms. This sensitivity does get better after through addressing the dietary issues, your GI system will settle down and you most likely will be able tolerate the raw fruits and veggies.
I hope you feel better soon.
In addition avoiding foods that are high in fiber and any uncooked fruits and vegetables will be quite helpful. With MC our GI systems are inflamed and irritated and eating foods that are not well cooked can cause additional irritation and an increase in the symptoms. This sensitivity does get better after through addressing the dietary issues, your GI system will settle down and you most likely will be able tolerate the raw fruits and veggies.
I hope you feel better soon.
Joe