Hello Everyone! I am new to this forum and have a lot of questions for all of you. My story is long and confusing, as I'm sure many of you can relate. :smile: In regards to my GI symptoms, I've been prone to diarrhea most of my life. I've also struggled with infection: strep as a child, c. diff., S.I.B.O. in adulthood, sinus and respiratory infections and the like. An evaluation at the Cleveland Clinic last month revealed IgG subclass deficiencies (immunodeficiencies). I've struggled with migraines for 18 years. Other than that, I've been "healthy" in that, until this recent health crisis, I exercised at the gym 3-5 days per week, ate my fruits and vegetables (a lot of them!), didn't drink or smoke. But then 2 years ago after weaning my 4th child, my health began to decline. The frequency of diarrhea increased to 5-6 times per day and I began to experience incredible fatigue. I saw a gastroenterologist who diagnosed lactose & fructose intolerance then, later, small intestine bacterial overgrowth. Antibiotics proved ineffective. I became sicker and sicker during this time. I was having 8-12 BMs per day most days, even while taking Imodium, Lomotil and Lotronex. It was determined (and blood tests confirmed) that a secondary yeast infection had developed in my GI tract so I was prescribed Diflucan.
During this time period many strange, seemingly unrelated symptoms began to develop. I started experiencing severe joint pain, mostly in my hips and lower back. As the disease progressed my smaller joints, in my fingers and toes, would sometimes become sore and swollen as well. I had tingling in my fingers and my feet became extraordinarily cold. Along with the intractable diarrhea, I had stomach pain, nausea at times, gas, bloating, and burning sensations throughout my GI tract. I would have mysterious rashes that would appear on my body (and then disappear a few days later) and a persistent rash on my face. My eyes and mouth became excessively dry and my hair began to fall out. I had numbness in my left arm and leg that would come and go. My sleep was significantly disrupted. My migraines became more frequent and intense and were 3-5 days in duration. All of my symptoms were magnified just before and during my menstrual cycles, which became heavy, painful and irregular. All of the symptoms remain today, as well as a fever that developed towards the end of 2012. I have lost nearly 50 lbs. over the past year and am struggling to keep my weight steady.
I also developed increased sensitivities to, not just food, but medications, chemicals, even certain smells. My gastroenterologist ordered a MRT food allergy test for me which revealed 19 delayed-onset food allergies. I have had adverse reactions to many of the medications that my doctors have prescribed to help with the many symptoms that I have developed, including: Gabapentin, Nortriptyline, Amatriptyline (prescribed for the diarrhea), and several others. However, the worst reaction I have had yet to any substance was the contrast dye from a CT scan I had in January.
Anyway, I’ve been tested for just about everything. In fact, I spent two weeks at the Cleveland Clinic last month with each day jam-packed full of testing and procedures. They did find that I have P.O.T.S. (a form of dysautonomia) and the IgG subclass deficiencies as well as some other less significant things (vitamin deficiencies, MTHFR mutation, etc.). But, I have to wonder if I may have a mast cell disorder. I know that my serum trytase is normal so I’m thinking it could be either mast cell activation syndrome or mastocytic enterocolitis. Here’s the thing: whereas I DO have flushing and itching at times, these spells are infrequent (maybe only once every week) and I have never had hives, wheezing, or any of the other respiratory symptoms that come with anaphylaxis. So, I don’t know if I’m way off base with this investigation. Can anyone who knows more about either of these diagnoses give me a little insight?
As for testing for mastocytic enterocolitis: I’ve read that it’s a matter of a special stain on colonoscopy slides. I have asked my gastroenterologist if we can do this (can this be done retroactively?) but he is dragging his feet, wanting to pass me off to the allergist. Any advice or recommendations? Thanks for any help you can lend!
During this time period many strange, seemingly unrelated symptoms began to develop. I started experiencing severe joint pain, mostly in my hips and lower back. As the disease progressed my smaller joints, in my fingers and toes, would sometimes become sore and swollen as well. I had tingling in my fingers and my feet became extraordinarily cold. Along with the intractable diarrhea, I had stomach pain, nausea at times, gas, bloating, and burning sensations throughout my GI tract. I would have mysterious rashes that would appear on my body (and then disappear a few days later) and a persistent rash on my face. My eyes and mouth became excessively dry and my hair began to fall out. I had numbness in my left arm and leg that would come and go. My sleep was significantly disrupted. My migraines became more frequent and intense and were 3-5 days in duration. All of my symptoms were magnified just before and during my menstrual cycles, which became heavy, painful and irregular. All of the symptoms remain today, as well as a fever that developed towards the end of 2012. I have lost nearly 50 lbs. over the past year and am struggling to keep my weight steady.
I also developed increased sensitivities to, not just food, but medications, chemicals, even certain smells. My gastroenterologist ordered a MRT food allergy test for me which revealed 19 delayed-onset food allergies. I have had adverse reactions to many of the medications that my doctors have prescribed to help with the many symptoms that I have developed, including: Gabapentin, Nortriptyline, Amatriptyline (prescribed for the diarrhea), and several others. However, the worst reaction I have had yet to any substance was the contrast dye from a CT scan I had in January.
Anyway, I’ve been tested for just about everything. In fact, I spent two weeks at the Cleveland Clinic last month with each day jam-packed full of testing and procedures. They did find that I have P.O.T.S. (a form of dysautonomia) and the IgG subclass deficiencies as well as some other less significant things (vitamin deficiencies, MTHFR mutation, etc.). But, I have to wonder if I may have a mast cell disorder. I know that my serum trytase is normal so I’m thinking it could be either mast cell activation syndrome or mastocytic enterocolitis. Here’s the thing: whereas I DO have flushing and itching at times, these spells are infrequent (maybe only once every week) and I have never had hives, wheezing, or any of the other respiratory symptoms that come with anaphylaxis. So, I don’t know if I’m way off base with this investigation. Can anyone who knows more about either of these diagnoses give me a little insight?
As for testing for mastocytic enterocolitis: I’ve read that it’s a matter of a special stain on colonoscopy slides. I have asked my gastroenterologist if we can do this (can this be done retroactively?) but he is dragging his feet, wanting to pass me off to the allergist. Any advice or recommendations? Thanks for any help you can lend!
Good luck 