03-27-2013, 08:39 PM   #1
mominmo
 
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Mastocytic Enterocolitis??

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. 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, Iíve 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 Iím thinking it could be either mast cell activation syndrome or mastocytic enterocolitis. Hereís 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 donít know if Iím 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: Iíve read that itís 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!
03-27-2013, 09:02 PM   #2
2thFairy
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I don't know much about this, but here is a good thread from other members here with ME:

http://www.crohnsforum.com/showthread.php?t=36507
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03-27-2013, 09:03 PM   #3
2thFairy
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Welcome to the forum!!
03-28-2013, 12:35 AM   #4
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I can't answer your main questions, but I wonder if you have considered trying a full liquid formula for awhile as a way to maintain your nutrition, ease your GI symptoms and perhaps provide some temporary relief from the food reactions. Then you could resume eating on a full elimination diet. There is more info about this here: http://www.crohnsforum.com/wiki/Enteral-nutrition and a thread about my experience: http://www.crohnsforum.com/showthread.php?t=31028
Of course, you would need to search for a formula that did not contain anything that you are sensitive to.
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03-28-2013, 12:38 AM   #5
happy
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Sorry, I hit post rather than preview.

I wanted to add: welcome to the forum and may you soon find some solutions to your current difficulties.
03-28-2013, 04:07 PM   #6
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Geez, sorry you are going through such a rouhg time of it. I do not know much about the ME, but I will say that I DO know all about the whole MCS( multiple Chemical sensitivities). I have that as well. I get adverse reactions to medications as well. I also get weird rashes on my body that will flare and just disappear out of nowwhere. My hands use to get a rash all over them and it would burn like crazy and itch and then it would just kind of disappear for a bit. I had that for almost 2 years. My big issue is severe intestinal pains all the time and constipation and a feeling that I always have to go to the toilet and when I do, my stool can be soft mixed with hard rock pebbles and I do not get a full movement out. It is awful.

I dont see why your GI wont check for the ME. I am assuming you have already seen a rheumatologist right? Thought maybe they could be some help in terms of ruling out autoimmune issues.

I am so sorry you are suffering, but you are not alone. I Hate going to the doctors office, I swear they think I am so complicated due to all the issues I have. I have been dx with ( Interstitial cystitis, Fibromyalgia, Multiple chemical sensitivities, Undifferenciated connective tissue disease meaning they have no clue, possible IBS, Chronic UTI's). I hope you can finally get some answers and help,it is so hard not knowing what is going on and being so sick.
04-02-2013, 09:26 PM   #7
bittsybug
 
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[QUOTE=mominmo;623579]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. 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, Iíve 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 Iím thinking it could be either mast cell activation syndrome or mastocytic enterocolitis. Hereís 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 donít know if Iím 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: Iíve read that itís 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!

I can relate to so many of your symptoms,,,I am in the process of losing my toe nail due to big toe joint inflamation,,,both toes are affected,,one got really bad,,over many months of progressing,,,the cold feet feeling, i have
eye blurriness,,,being swollen on my right side,,as the day goes on, the worse i get,,,I had the staining done, it was determined i have ME,,since Aug. 2012..every day i have symptoms,,,very fatigued ,,
04-24-2013, 05:51 PM   #8
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I also may have mastocytic enterocolitis. I was diagnosed( biopsy) with a colonoscopy 2 years ago. I have collagenous colitis. However the conventional colitis meds: Asacol, Pentasa, Oral Budesonide, immodium pepto-, cholestyramine, all didn't help much. Plus I have a million intolerances and allergies, Raynauds, am atopic, have asthma, sleep apnea, rosacea, horrible pruritis all the time, joint pain, terrible facial flushing, 5-12 bms everyday, gerd, etc etc. I just had surgery for uterine cancer 2 weeks ago.
I live in Montreal, Quebec and am looking for an allergist who won't think I'm insane. By the wat I asked my gastroenterologist to prescribe sodium chromoglycate (off-label in Quebec) and he finally did. It helps with the colitis cramping but not the diarrhea. The Mastocytic society Canada has doctors in Ontario on their site but they won't deal with Quebec. I don't know which tests are recommended for diagnosis. Any help would be appreciated.
04-24-2013, 10:05 PM   #9
my little penguin
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http://www.karger.com/Article/FullText/328760

read this
http://www.hindawi.com/journals/grp/2012/950582/

and this

http://www.medicine.wisc.edu/~willia...ation_2011.pdf

have your GI call this doc-

http://physiciandirectory.brighamand...g/Details/1728

allergist who deals with Mast cell disorders - maybe she can reccommend some one ro the test needed
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04-29-2013, 10:19 AM   #10
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I have mastocytic enterocolits and Crohn's disease both. My GI did the stains when I had my colonoscopy, but I do know some other who had theirs done retroactive Good luck
04-29-2013, 03:45 PM   #11
wnorm
 
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Thank-you. Can you tell me a bit about your M.E. symptoms? Also can a biopsy of the jejunem done with a gastroscopy show the mast cells? What's the best test? I may also have Ehler's danlos syndrome. I spoke to a genetic counsellor on the phone. I'm waiting for a call-back from the hospital.It's difficult to get care in Quebec.
04-30-2013, 12:30 PM   #12
MendyVarner
 
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I started with horrible fatigue a few months before the diarrhea started. I stayed in the bathroom. I do alternate between D and constipation now. My joints ache so bad at times. My hips, ankles, shoulders..basically every symptom associated with and IBD.
I did continue to have worse symptoms when treated for my ME, which led my doctor to do more testing and eventually the pill cam which FINALLY led to the discovery of my Crohn's disease as well as my ME.

I am not sure about having a biopsy of the jejunum and if mast cells would be present there. I am assuming since it's in the GI tract they would, but you'd need to speak to your doctor on that.

Good luck on your journey and I hope you find the answers soon!!!!


Mendy
06-17-2013, 06:54 PM   #13
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My story is ironically quite familiar. I was diagnosed at Cleveland Clinic also, on my 5th colo/endo (I just turned 27, and have been sick for more than four years). Looking to meet others with ME to share stories, treatment options, etc. happy to provide my email!

Amanda
06-17-2013, 07:04 PM   #14
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Thanks . I appreciate it
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