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08-25-2011, 04:11 AM   #1
MendyVarner
 
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Mastocytic Entercolitis

Hello everyone. My story begins a couple years ago when I thought I had gotten food poisoning and lost a quick 25 lbs being sick. I went to a GI doctor who told me I had IBS..and I suffered with no appetite and would gag at the thought of food. I had such bad D, I was miserable. This episode passed and I was healthy until February of this year, when I got sooo very ill. Same symptoms as last time...lost 30 lbs quickly and had no energy to function. I even had to resign my job after 4 years..it was terrible. I ended up seeking the opinion of a second GI doctor, who after a colonoscopy diagnosed me with Mastocytic Colitis. While this has been a long journey of trying to get in better health at least I have a diagnosis. I'm still searching for the energy that has left me..but it's hopefully coming back.

I take antihistamines everyday..class 1 and class 2 histamines, and watch eating foods that are high in histamines as they can trigger the problem as well. My D is gone, but I still struggle with the overall health problems from the disease itself.

Just wanted to stop in and say hi to everyone and wish everyone the best


Mendy
08-25-2011, 05:02 AM   #2
David
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Hi Mendy! Don't take this the wrong way but I'm excited to meet our first patient diagnosed with Mastocytic Colitis! I'm sorry you have it of course, but it's something I've been reading about a lot. Is your doctor Dr. Scot Michael Lewey by chance?

Did the first GI do a colonoscopy? What has been your exact path to diagnosis? And what are the "overall health problems" that you're experiencing?

And what is the list of foods high in histamines?! Can you tell I'm excited?

It's great to have you here! I hope you stick around and teach us and let us be there for you as well
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08-25-2011, 05:23 AM   #3
Dexky
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Well, unlike our esteemed admin, I've never heard of MC! Are the anti-histamines the only meds you are on? If so, I'm assuming MC is considered an allergy problem? What else have you learned about it? Wow, now I'm getting excited

Oh, welcome Mendy!! Are you anywhere near BG?
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08-25-2011, 05:55 AM   #4
PaulPhoenix
 
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I wonder whether it's a condition that looks like crohn's to a non dyed biopsy?

Is it worth people trying an anti-histamine for a couple of weeks to see whether symptoms improve.

Paul

Crohn's Colitis 2011
Pentasa 4g/day
08-25-2011, 07:17 AM   #5
dannysmom
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Thanks for posting this.
Paul, I just read that to the eye, a colonoscopy appears normal with MC. The abnormalities show up only on biopsies. I will see if this can be checked when my son has his next colonoscopy! I am a little excited too! Danny's biopsies showed eosinophilic inflammation throughout his digestive tract. But to the eye, it looked mostly normal - maybe some red.
Mendy, are you on regular allergy medication like claritin and singulair? or a special one for the GI? ..... Thanks!
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08-25-2011, 09:22 AM   #6
Carrie630
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Mark, anything with the word mastocytosis /mastocytotic means it is a mast cell disorder. Mast cells are part of the inflammatory response, and in the case of a disorder some of the mast cells activate when they shouldn't causing an allergic response of varying severity (depends on how many mast cells got activated and de-granulated). There are mast cell stabilizers as well as H1 and H2 histamine blockers which can help regulate your mast cells, but as Mendy kind of mentioned, it's very easy to trigger so you have to be careful about your exposure to anything that could cause a response. This is a vague kind of overview, because there are a lot of mast cell disorders, but with mastocytotic colitis the biggest takeaway is that the mast cells in the colon are activating when they shouldn't causing immune system response when it's not needed causing the colitis.
08-25-2011, 03:00 PM   #7
MendyVarner
 
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David, no the first doctor didn't do a colonoscopy. My exact path to diagnosis has basically been a long one. My family doctor wouldn't stop until he got an answer though. My doctor is Dr. James Curtiss here in Bowling Green, KY. He now routinely stains all biopsys looking for this disorder. My overall health problems that didn't start until my ME started are burning upper thighs, extreme (can't stress that word enough) fatigue, heart rhythm all over the place, and just all over aches and pains. Flushing, headaches, and malnutrition are also common with ME.

There is a list of of foods high in histamine found at several sites, and I would post the link, but it won't let me because I don't have 10 posts!!!

Dexky, it is a mast cell activation disorder..but there are tons of triggers, and yes I did go through allergy testing..but everything came back negative..lol go figure. I am in Bowling Green

Paul, I did have inflammation show up on a CT scan during a ER trip before my colonoscopy. However, my colon looked nice and healthy, but sure enough the biopsy when stained showed the mast cells!

Dannysmom, I take zyrtec which is a class 1 antihistamine, and zantac twice a day which is a class 2 antihistamine.


Carrie, you are spot on with your overview

I'm actually going to try and get in to a doctor at Vanderbilt in Nashville to be tested for the Systematic Mastocytosis, due to my broad range of symptoms.

Thanks everyone for the warm welcome. I look forward to sticking around and getting to know each and everyone of you!!!!!

Oh and here is a quick question..I uploaded a picture..but not sure how to get it on my profile...LOL!!!!!
08-25-2011, 03:11 PM   #8
David
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Hooo boy, I have so many questions. There's very little information out there about ME, in part because I think little is known. I just have a feeling it is much more widespread than we realize.

Until you have 10 posts, just remove the http://www off the url. Sorry for the trouble with that, it's to stop spammers.

A few questions in case you happen to know the answers:

1. Regarding malnutrition, do you know what is not being absorbed? And do you know why?

2. Has your vitamin B12 and iron levels been tested? If so, what were they?

3. Where did your CT show inflammation?

4. Out there question: have you had numerous (5+) exposures to poison oak/ivy?

5. Any idea how many people your doctor has diagnosed with ME?

Thank you! Let us know if there's anything we can do for you

If you're game, we'd love it if you would add your doctor to our Doctor Directory, especially since he seems to be in the extreme minority of doctors staining for ME.
08-25-2011, 03:27 PM   #9
Carrie630
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Mendy, I have a friend with systemic mastocytosis. She went through a lot to get dx'd with it, but she was dx'd for years before they did the 'definitive' test which is a bone marrow biopsy. The reason why she got the biopsy was to check for the c-kit mutation. If I have it correctly, having the c-kit mutation tends to point towards a more aggressive form of mastocytosis. There are excellent doctors specializing in Mastocytosis in Boston.
08-26-2011, 06:11 AM   #10
dannysmom
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Dannysmom, I take zyrtec which is a class 1 antihistamine, and zantac twice a day which is a class 2 antihistamine.
Thanks again!

WOW ... this is just over the counter stuff! (I even have in the house already!)

Did your fatigue go away, or lessen considerably? Fatigue is my son's biggest problem and is mainly what has kept him from attending school for 2.5 years.
08-26-2011, 07:00 AM   #11
MendyVarner
 
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David, basically everything I was taking it wasn't being absorbed. Even my vitamin D level was insanely low at 6...I know my sed rate was also elevated. They just told me on the CT scan my colon was inflammed..not sure where exactly sorry. I have been exposed to poison ivy, but have never broke out from it..lol

And, last but not least..he has diagnosed a handful of patients with ME. But he does test for it, which I find encouraging


Carrie, thanks for the information. I have read Boston is a great area for learning about mast cell problems!!


Dannysmom...yep over the counter stuff is all I take. My fatigue got better after switching to sublingual B12..I'm still not 100% and look forward to hopefully being there someday..but no such luck yet...

I also am hypothyroid and take levothyroxine for that. I also take vitamin D, B12, and a probiotic daily.

I hope I answered everyones questions
12-31-2011, 06:10 PM   #12
FloridaJoe
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Hello Mendy,

I was just diagnosed with ME also. It's amazing that I've had many of the same symptoms as you: extreme fatigue, low vitamin D, etc. I've also had low protein levels, extremely bad neuropathy in the legs and feet, and hormone problems.

I look forward to learning more about the disease and finding ways to help myself get better...I have a 2 year old to keep up with!

My doc has put me on Clariton and Pepcid, so I have to go pick those up and see if they help. I'm especially interested in the food link with ME and finding ways to correct my diet.

Thanks for all your input!

Joe

Last edited by FloridaJoe; 01-02-2012 at 09:30 AM.
06-04-2012, 02:42 PM   #13
HarveyFamily
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Greetings everyone. I am hoping to find more answers regarding my daughter's recent dx of ME.
She is only 9 and we have been dealing with debilitating stomach pain, vomiting, etc., etc, etc for nearly 9 months.
Last week, she was dx with ME after a triptase stain from her last colonoscopy. Has anyone else heard of this in children, what the prognosis is and what seems to help the most? I am also concerned about the potential (if any) for it to become systemic, or if it is already in the rest of her body, what symptoms to look for.
Any help or feedback would be so greatly appreciated.

-Concerned Mom
06-04-2012, 03:16 PM   #14
David
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Hi Concerned Mom,

Was the colonoscopy otherwise normal? Have they tested her small intestines to check for any other disease? I am personally not a fan of a diagnosis of ME unless they have checked every inch of the intestines for disease. In addition, what mastocytic enterocolitis basically means is that your daughter has a ton of mast cells in her intestines that are releasing histamine. Potentially a reaction to some sort of antigen, possibly food based. Point being, if I was told I had ME, I would want them to help me figure out WHY rather than give me a ton of antihistamines and send me on my way.

Did they perform any blood tests that were abnormal? How about fecal lactoferrin or fecal calprotectin?
06-04-2012, 03:38 PM   #15
HarveyFamily
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Hi David,
Endoscopy (both) showed inflammation. Colonoscopy showed a brown/damaged area and thinning of the GI lining (she had not previously been on a laxative therapy). motility study showed delayed gastric emptying, but I read somewhere that gut paralysis is a side efx of ME (I'll try to find the article again to quote/link).Blood tests were normal and she is having a MRE (capsule endoscopy in the next week or so). So far, no food allergies have been discovered. He did test for lactose allergy on her first endoscopy. So far, she is on zofran around the clock, reglan, and zantac. Now, they are adding gastracrom and that's about as far as we have gotten.
06-04-2012, 04:29 PM   #16
David
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From what I have read of ME, there typically wouldn't be damage/inflammation of the digestive tract. It's more when someone has chronic diarrhea and they can't find any other causes other than elevated mast cells.

I'm glad they're doing a capsule endoscopy. It sounds like they're being thorough which is a great sign.

Please keep us updated as to what they find with that.

This must be incredibly trying for you. My heart goes out to your entire family. You may want to connect with other parents in our Parents of Kids with IBD forum for support.
08-19-2012, 08:38 PM   #17
HarveyFamily
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Good evening everyone,
It has been a month or so since my last post and we don't seem to be any closer to awareness.
After Haley's capsule endoscopy, the only findings were confirming her gastroparesis (delayed gastric emptying). The camera sat in her stomach for 3 hours and by the time is passed, it was mixed with food, so the doc couldn't see anything. UGH!
We had a pretty good run for about a month. Her pain was significantly lowered and flares were minimal and tolerable even.
This week, however, has been a challenge, both emotionally and physically for Haley. Because of her delayed emptying, she is backed up from one end to the other (C) which is atypical of IBD's but not unheard of.
We are still searching for more...more understanding, more information, etc. Her GI has basically come to a resting point of "lifestyle of managing flares and symptoms". Maybe it's just me having a hard time coming to grips with the fact that my perfect child has to endure this for life. She is having a hard time dealing with her emotions and has so many questions as to 'why' she has to go through this and why she hasn't gotten better yet.
School has started and we are "homeschooling" via the virtual elementary program in our county. From a techie standpoint, the software is pretty cool. From a 9-year-old standpoint, being withdrawn from the classroom environment with her friends stinks!
I continue to search for other parents who are dealing with (ME), but come up empty handed. So, I soldier on, and we continue to embrace each good day to it's fullest potential and hold on to those thoughts on the bad days.
Thanks for all the input and feedback!!
08-20-2012, 08:20 AM   #18
dannysmom
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Hi. I am sorry your daughter stills feels so bad. My son is not dx w/ ME, but he is basically undiagnosed without any effective treatment ... so I can underatand how hard this can be. My son has been on home instruction (tutors from school come to home) for almost 3.5 years. Socially it is hard but my son did not have enough energy to make it to school. (This year, he is feeling much better than last year and will be trying school again next week. He is 15 now and really could use some friends.)
My son's first pillcam did the same thing as your daughter's. Stayed in stomach nearly the whole battery life. He had another pillcam placed endoscopically. (The insurance did not cover both )
Good luck! Feel free to post in the Parents Forum too. It has wonderful support.
08-21-2012, 01:34 AM   #19
Raleigh
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For those of you who have been diagnosed with ME, I have a question. Since allergy plays such a critical role in ME, do you notice worsening GI symptoms when you are exposed to seasonal or environmental allergens?

The reason I ask is because my GI symptoms become much more severe when pollen counts are high, when I am exposed to dust or excessive amounts of dog hair, and when it rains (because mold levels in the air go up).

It makes me wonder if it is actually ME that I am suffering with, instead of Crohn's. Thanks so much for your input.

Brian
08-27-2012, 03:57 PM   #20
rollingrfarm
 
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For those of you who have been diagnosed with ME, I have a question. Since allergy plays such a critical role in ME, do you notice worsening GI symptoms when you are exposed to seasonal or environmental allergens?

The reason I ask is because my GI symptoms become much more severe when pollen counts are high, when I am exposed to dust or excessive amounts of dog hair, and when it rains (because mold levels in the air go up).

It makes me wonder if it is actually ME that I am suffering with, instead of Crohn's. Thanks so much for your input.

Brian
I live in a rural humid farming area where seasonal and environmental allergens are always bad. So I really don't notice ME being worse because I'm constantly surrounded by things I'm allergic to. One odd thing was that I was stung by fire ants a few days ago and at the time I was on zyrtec, allegra, ranitidine, gastrocrom, and famotidine. For the first time, I didn't get the fluid filled welts like I usually do when I get into fire ants! My ME seems to get really bad when I am stressed or dared to eat an acidic food.
09-09-2012, 07:14 PM   #21
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After 3 months of being extremly sick,, losing 20lbs,, was Dx with ME,,,can anyone share their symptoms with me,,,? ive had extreme burning, toe joint pain,, feels like something is leakin into my skin,, extreme fatigue, the longer the day goes,, the worse i feel, only relief is layin down, no sleep, blood pressure goin up,, heart racin,,,was wonderin does anyone share these symptoms,,,?
09-10-2012, 06:33 AM   #22
rollingrfarm
 
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I have atopic dermatitis on the soles of my feet and they occasionally burn and itch , joint pain, intolerance to heat with excessive sweating. I gained weight when I was on chlolestryamine and am hoping to lose it now that I am on gastrocrom. The chlolestryamine let me eat anything but after several years it made me very sick - I honestly think I became allergic to it. I am slowly identifying my trigger foods. I also discovered yesterday that the smell of the insectcide malathion causes me to react as if I ate a plateful of trigger foods.
Bittsybug, what meds are you on?
09-10-2012, 07:08 AM   #23
bittsybug
 
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I am on Zyrtec/Zantac for 8wks,,,an a probiotic,
09-17-2012, 09:43 PM   #24
HarveyFamily
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@ David, daughter's most recent tests included fecal studies (calprotectin and something else). Calprotectin came back elevated and will most likely lead to another endoscopy. Currrently in a "flare" for about 5 weeks. Do you know the general reliability of these tests? Also, I am searching for a link between gastroparesis and constipation. Any thoughts?
Thanks!
HarveyFamily
09-17-2012, 10:25 PM   #25
David
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They're pretty reliable. They don't definitively tell you what's wrong of course, but I'd trust that the number was indeed elevated.

Gastroparesis can cause vitamin B12 deficiency which can lead to constipation.
09-23-2012, 10:06 AM   #26
alaudicina
 
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After 3 months of being extremly sick,, losing 20lbs,, was Dx with ME,,,can anyone share their symptoms with me,,,? ive had extreme burning, toe joint pain,, feels like something is leakin into my skin,, extreme fatigue, the longer the day goes,, the worse i feel, only relief is layin down, no sleep, blood pressure goin up,, heart racin,,,was wonderin does anyone share these symptoms,,,?
Hey bittysbug. I was dx with ME 3 years ago. Unfort I do not have the same symptoms of you. When I have an 'attack' as I call it, my intestines do swell it seems, putting pressure on my back causing lower back pain. I get extreme D, or constipation, abdominal pain, sweaty palms, get EXTREMELY hot need lots of water. I nearly pass out each time from the pain and vomiting. I also suffer the typical symptoms of the disease, pelvic pain, bladder problems and what not.

I am on Allegra, Zantac 150mg, and for emergencies Hyomax.
09-23-2012, 10:18 AM   #27
bittsybug
 
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Hey bittysbug. I was dx with ME 3 years ago. Unfort I do not have the same symptoms of you. When I have an 'attack' as I call it, my intestines do swell it seems, putting pressure on my back causing lower back pain. I get extreme D, or constipation, abdominal pain, sweaty palms, get EXTREMELY hot need lots of water. I nearly pass out each time from the pain and vomiting. I also suffer the typical symptoms of the disease, pelvic pain, bladder problems and what not.

I am on Allegra, Zantac 150mg, and for emergencies Hyomax.
I had major D, at the start of the onset,,confusion, blurred eyesight, an dry eyes,,feelin of goin to faint,,,an the weirdest feelin inside,,unexplainable,,now im havin the pressure of my intestines being swollen late in the day after i eat,on my right side,,,with right sided Pain,,,,an still havin fever across my back,,,an now major C,, an at first water was all i wanted ,,,and im still takin Zyrtec or Claratin, an Zantac,,,an other Vitamins, in the mornings i feel almost normal,,but mid evenin ,,OMG,,downhill,,,thanks for replyin,,,
11-14-2012, 06:06 PM   #28
TonyM
 
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Hi, I just found out about my mastocytic enterocolitis diagnosis about an hour ago. My life has been a living hell for the last ten years dealing with so many symptoms and doctor visits. Being a Desert Storm veteran I was checking out every angle related to Gulf War Illness and was told by a VA doctor that my symptoms indicated that was what it was.
The big question I have for others here that have this condition is how long does it take to feel better after taking medication? My wife is on the way now to pick up my prescription, Zyrtec and something else I can't remember.
11-14-2012, 08:24 PM   #29
bittsybug
 
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well i was DX in Aug, an im better than what i was,,, but some days are worse than others,,,the swelling in my side puttin pressure on my back is unbearable somtimes,toward the end of the day, Im exhausted,,no energy,,,Steriods helped , but dont wanna be on them all the time,,What all has your symptoms been> ?
11-15-2012, 08:42 AM   #30
rollingrfarm
 
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Tony, did the doctor take a sample of your colon lining to stain and count the mast cells? From what I've been told, that's the only way to determine for sure if it is mastocytic enterocolitis. I take cromolyn sodium lots of different antihistamines and acid reducers and still my mornings are spent running to the bathroom. If I have to travel for work in the morning, I dont eat anything. For me, things seem to calm down by early to midafternoon and the evening is fine. I used to be on a prescription drug that binds the stomach bile. It worked great for 3 years and then it started making me sick so I had to quit it. It made my life normal for the first few years, you might see if it works for you, I think the generic name for it is cholestryamine.
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