Visit the Microscopic Colitis Foundation Website
Hello everyone! I am 27 and although I have been unable to receive an official diagnosis, after several months of internet research, and finally finding this site, I believe I have ME (Mastocytic Enterocolitis). I was hoping for some insight from you wonderful people.
Here a brief timeline of my GI troubles; I have no idea if some of these things are related to each other or not: I have been a Type 1 Diabetic for 21.5 years. About 3.5 years ago is when I started having GI symptoms (mainly Nausea and D). Shortly after that I became pregnant (extreme N and vomiting throughout), gave birth, and then had emergency surgery for an appendiceal abscess less than a month after giving birth. I continued to have GI "issues", but was able to just deal with them until about 1.5 years ago. My N, V, and D were to the point of interfering with my daily life so much that I went looking for answers. After blood work, abdominal ultrasound, and HIDA scan, gallbladder was ruled out and I was referred to a GI Dr. I then had an upper and lower scope (biopsies taken) done and was told I had "Increased Mucosal Mast Cells", and that my symptoms were real and that it was not all in my head! GI doc referred me to an allergist-blood work, and allergy "scratch test" finds that I am allergic to certain trees and grasses and dust mites. I then start taking Clarinex for the GI symptoms and allergy shots for the other allergies (Clarinex did not seem to make a difference for GI symptoms). Followed up with GI doc 4 months ago, telling him symptoms were not better (actually worse) and he tells me "I think it is stress" and gives me an antidepressant (it did not help either). I have since stopped taking the antidepressant and am now taking a psyllium fiber supplement, 20 mg Pepcid, and 5mg Clarinex daily (decided this treatment on my own, based on internet findings). I unfortunately am still experiencing N and D, which is interfering in many aspects of my daily life, and is causing me extreme anxiety (which I am working on appts to see dr for this).
So my questions for you are: Does this sound like ME? and What should my next steps of action be? TIA for all your time and help!!
Newbie with unofficial diagnosis and questions
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
I don't know much about ME, but "Increased Mucosal Mast Cells" and your symptoms sure sound like it! Why are you taking psyllium supplements if you have D? It is very irritating to the GI tract. Have you tried other antihistamines to see if they might offer more relief? Some people take a cocktail - more than one. You might try Allegra or Zyrtec. It amazes me that your doc would prescribe an antidepressant for stress (and not depression!). The way they are handed out like candy is a major pet peeve of mine.
I think most people with ME follow a low-histamine diet. I'm sure others will come along with more information about it.
Welcome to the Potty People family.
I think most people with ME follow a low-histamine diet. I'm sure others will come along with more information about it.
Welcome to the Potty People family.
Hi Nasus,
Welcome to our internet family. Yes, it does sound like ME, and if your pathology report specifically stated, "Increased Mucosal Mast Cells", you should have received a diagnosis of ME. Apparently, the pathologist who analyzed your biopsy slides didn't specifically state a diagnosis of MC on the pathology report, and your GI doc, didn't have the foggiest idea what "Increased Mucosal Mast Cells" meant. It's also possible that the GI doc just ignored the diagnosis offered by the pathologist - that seems to happen very often with ignorant GI specialists, who mistakenly believe that they know more than the pathologist, regarding certain diseases. Quite a few of the members here have been told by their GI doc that there was nothing wrong with them, or they had IBS, when the pathology report clearly stated that they had microscopic colitis.
We have several members on this board who have become experts on ME and mast cell issues, who have these issues themselves, (one of whom is a licensed dietitian). There are very, very few professionals in this country, who are truly qualified to deal with mast cell issues, and most of them are not gastroenterologists. Most of them are trained to deal with mastocytosis, which is a systemic mast cell issue. You apparently don't have mastocytosis, but mastocytosis experts are still the best qualified for dealing with gastrointestinal mast cell issues. You didn't give your location, but most of the research in this area, and most of the qualified professionals, seem to be associated with Brigham and Women's Hospital, in Boston.
Avoiding foods high in histamines, and foods known to cause the degranulation of mast cells, is usually necessary, in order to keep mast cell symptoms from getting out of hand. Antihistamines are usually helpful, and some individuals find that taking a product such as Gastrocrom, (cromolyn sodium), can be helpful. Cromolyn sodium, of course, requires a prescription, which is why it's helpful if your doctor knows something about treating the condition. As Zizzle pointed out, obviously fiber and antidepressants are not a solution, and the fact that your doctors would prescribe them is pretty clear evidence that they are completely lost, as far as your case is concerned.
Hopefully, some of our members who are dealing with issues such as this will notice your post and respond.
Incidentally, the nausea and vomiting issues may be associated with gastroparesis, (delayed stomach emptying). Diabetics are especially prone to developing that issue, but some of us with microscopic colitis, (ME is a type of microscopic colitis), who are not diabetics, also develop the problem when we are reacting. I'm kind of surprised that none of your doctors ever diagnosed you with gastroparesis. Once more, they seem to be lost.
Again, welcome aboard, and please feel free to ask anything.
Tex
Welcome to our internet family. Yes, it does sound like ME, and if your pathology report specifically stated, "Increased Mucosal Mast Cells", you should have received a diagnosis of ME. Apparently, the pathologist who analyzed your biopsy slides didn't specifically state a diagnosis of MC on the pathology report, and your GI doc, didn't have the foggiest idea what "Increased Mucosal Mast Cells" meant. It's also possible that the GI doc just ignored the diagnosis offered by the pathologist - that seems to happen very often with ignorant GI specialists, who mistakenly believe that they know more than the pathologist, regarding certain diseases. Quite a few of the members here have been told by their GI doc that there was nothing wrong with them, or they had IBS, when the pathology report clearly stated that they had microscopic colitis.
We have several members on this board who have become experts on ME and mast cell issues, who have these issues themselves, (one of whom is a licensed dietitian). There are very, very few professionals in this country, who are truly qualified to deal with mast cell issues, and most of them are not gastroenterologists. Most of them are trained to deal with mastocytosis, which is a systemic mast cell issue. You apparently don't have mastocytosis, but mastocytosis experts are still the best qualified for dealing with gastrointestinal mast cell issues. You didn't give your location, but most of the research in this area, and most of the qualified professionals, seem to be associated with Brigham and Women's Hospital, in Boston.
Avoiding foods high in histamines, and foods known to cause the degranulation of mast cells, is usually necessary, in order to keep mast cell symptoms from getting out of hand. Antihistamines are usually helpful, and some individuals find that taking a product such as Gastrocrom, (cromolyn sodium), can be helpful. Cromolyn sodium, of course, requires a prescription, which is why it's helpful if your doctor knows something about treating the condition. As Zizzle pointed out, obviously fiber and antidepressants are not a solution, and the fact that your doctors would prescribe them is pretty clear evidence that they are completely lost, as far as your case is concerned.
Hopefully, some of our members who are dealing with issues such as this will notice your post and respond.
Incidentally, the nausea and vomiting issues may be associated with gastroparesis, (delayed stomach emptying). Diabetics are especially prone to developing that issue, but some of us with microscopic colitis, (ME is a type of microscopic colitis), who are not diabetics, also develop the problem when we are reacting. I'm kind of surprised that none of your doctors ever diagnosed you with gastroparesis. Once more, they seem to be lost.
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.
Hi Nasus and 
You have come to the right place. It appears that you now have two autoimmune (AI) diseases - type I diabetes and ME (a type of MC or microscopic colitis). It is not unusual for those with MC to have other AI problems - thyroid issues, rheumatoid arthritis, Sjogren's syndrome, celiac disease, etc.
Most of us with MC do not have full-blown celiac disease but rather a significant gluten sensitivity that doesn't show up on the classic celiac tests. I am convinced that long-term exposure to gluten in those who are sensitive is the root cause of many AI diseases. Unfortunately, most MDs are not aware of this connection. The only way to test for our kind of gluten sensitivity is through the tests offered at www.enterolab.com - where antibodies to gluten can be found in stool. Many of us are also sensitive to other foods, like dairy or soy.
I agree with what Tex has said. The only addition I have is that some have found relief by taking Histame before meals, especially meals that are known to be high in histamine.
We do have a few resident experts on ME......Mary Beth comes immediately to mind. She will probably pop in and see your post, but if not, I'm sure she won't mind if you PM her.
Hugs,
Polly
You have come to the right place. It appears that you now have two autoimmune (AI) diseases - type I diabetes and ME (a type of MC or microscopic colitis). It is not unusual for those with MC to have other AI problems - thyroid issues, rheumatoid arthritis, Sjogren's syndrome, celiac disease, etc.
Most of us with MC do not have full-blown celiac disease but rather a significant gluten sensitivity that doesn't show up on the classic celiac tests. I am convinced that long-term exposure to gluten in those who are sensitive is the root cause of many AI diseases. Unfortunately, most MDs are not aware of this connection. The only way to test for our kind of gluten sensitivity is through the tests offered at www.enterolab.com - where antibodies to gluten can be found in stool. Many of us are also sensitive to other foods, like dairy or soy.
I agree with what Tex has said. The only addition I have is that some have found relief by taking Histame before meals, especially meals that are known to be high in histamine.
We do have a few resident experts on ME......Mary Beth comes immediately to mind. She will probably pop in and see your post, but if not, I'm sure she won't mind if you PM her.
Hugs,
Polly
Blessed are they who can laugh at themselves, for they shall never cease to be amused.
-
Joefnh
- Rockhopper Penguin
- Posts: 2478
- Joined: Wed Apr 21, 2010 8:25 pm
- Location: Southern New Hampshire
Good morning Nasus and welcome to the group. It certainly does sound like you may be dealing with a form of MC, and as pointed out having other autoimmune conditions seems to be common in those with MC. I have also been looking at how antihistamines affect the MC that I deal with. I have had allergies as long as I can remember and have started to notice that certain foods seem to make my sinuses fill up. After another thread here about allergy meds I am trying Calritin (Loratidine) for a while to see if that helps.
I certainly agree that I would avoid any type of aggravating supplement like psyllium or other fiber additives. One of my first real symptoms of MC was noticed when I ate high fiber meals like a large salad and to this day I still cannot tolerate raw veggies as they are to irritating to the GI system.
Again welcome to the group, I am sure that with the advice you will find here that you should be able to unravel this mystery soon and start to feel better.
Take care
Joe
I certainly agree that I would avoid any type of aggravating supplement like psyllium or other fiber additives. One of my first real symptoms of MC was noticed when I ate high fiber meals like a large salad and to this day I still cannot tolerate raw veggies as they are to irritating to the GI system.
Again welcome to the group, I am sure that with the advice you will find here that you should be able to unravel this mystery soon and start to feel better.
Take care
Joe
Joe