Mastocytic Enterocolitis

[FloridaJoe]

Hello,
I was just diagnosed with ME. I look forward to learning from all of you. I'll start to look over the site and see what everyone has to say about ME.
Thanks!

 

[Crohn's 35]

Hi Joe welcome!n :bigwave: I had to look this up because it was a first for me http://poplarhealthcare.com/gipathology/wp-content/uploads/2011/06/MastoEnt_PCR_mkt42_0711.pdf

this is for others incase you others want to know. Basically have the same symptoms as us. Just want to know what meds you are on and your symptoms and do you bleed?

There is always something new to learn. I can't help much. Wanted to welcome you here and happy New Year.

 

[xJillx]

Hi FloridaJoe and welcome! I am not sure what ME stands for, so could you be more specific? I assume it must include GI issues. If so, what specifically are you struggling with?

Anyone who suffers from GI issues is welcome here! We can all learn from each other. Once again, welcome!

*edit*

I apologize! I need to be more observant and look at thread titles! I have never heard of Mastocytic Entercolitis, but I am Googling like crazy now! As David said, not much is coming up.

Have you and your doctor discussed any treatment plan yet? It seems like antihistamines are the first line of therapy. Also, from what I read, probiotics have been found to be beneficial. I hope you come up with a plan soon that helps.

 

[David]

Hi Joe and welcome!

I've read everything there is about Mastocytic Enterocolitis which, as you probably know, doesn't take very long My condition (Lymphocytic Colitis) is the same way, there's just not much about it out there. I actually own mastocyticenterocolitis.com and plan to put up a quality info site once I've collected enough information on it.

I'm pleased that you have a GI that was smart enough to stain for mast cells and get you a proper diagnosis. Are you being treated with antihistamines? Would you be interested in elaborating on your story as I have great interest in ME. I feel it's a lot more common than is realized and a lot of the IBS is actually ME.

What dietary changes has your doctor suggested?

All my best to you

*edit*

I just read your other post. I notice you mention extreme fatigue and that you were tested for vitamin D deficiency. What other vitamin and mineral deficiencies were you tested for?

 

[cb323]

Hi Joe, welcome! This is very interesting to me especially since I've recently had normal scopes and biopsies. I need to find out if a stain for the mast cells was done. I'm betting not.

David, thank you for doing more research for us. Still looking for answers!

 

[Miss Underestimated]

Something new every day!

 

[FloridaJoe]

Hello Everyone,

I was diagnosed through a colonoscopy and my G.I. took various samples and did biopsies.

My G.I. has prescribed a daily dose of the ingredients in Clariton and Pepcid. I'll meet with him again soon and learn more about the disease and how he wants to treat it.

Some of the symptoms I've had over the past 20 years: extreme fatigue, all IBS symptoms, bleeding, internal hemorrhoids, low vitamin D, low calcium & osteoporosis, neuropathy, low hormones, etc.

Many of these symptoms could have been caused by the ME. I'll find out more when I meet with my G.I. in the next week or two.

Thanks for all your help and input. It's good to know there are others who have this who care.

 

[allie_469]

Was it the first colonoscopy that you have had or were thier others?

 

[FloridaJoe]

It was not my first colonoscopy.

 

[allie_469]

Can I ask what made them test for this? For what I read they dont normally check for this, I am just wondering is this something that they would have found on a normal routine colonoscopy? Im asking for my self, because I had a colonoscopy that came back normal 7 months ago and Im still undiagnosed. Thanks for your information. allie

 

[David]

A normal colonoscopy and biopsy are utilized but it's a special stain for mast cells that can diagnose ME. That specific stain is rarely done.

 

[allie_469]

Do you think that is a test that you can request, not that I want that I just need answers! thanks

 

[David]

Yes, I think it's something you could request. But I'd printout an explanation of what ME is and information about the test (from a reputable source) and present all of that to my GI.

 

[allie_469]

Can I ask what made them check for that? Did they check for crohns and colitis in your other tests?

 

[haegemama]

Hi all, I was just diagnosed with mastocytic enterocolitis. I was also diagnosed with celiac disease back in 2004. I'm just wondering if anyone has anymore information on ME, since there's not much info on google.

 

[rollingrfarm]

Like the rest of you, I am also looking for info and quality successful treatments. I was on cholestryamine for several years until I started having side effects this year which almost seem like an allergic reaction to that drug. Same thing with welchol. I'm on antihistamines and oral cromolyn sodium but still have serious d until about lunchtime. Since my job requires me to be in places where there are no restrooms, I really need a good solution/treatment.

 

[haegemama]

I just started taking Zytec (10 mg), Zantac (150 mg, twice daily), and Gastrocrom (200 mg, four times a day) yesterday. It's a lot to take in a day!

 

[David]

There's just plain not much info out there on ME and I think there is still a lot of confusion about it in medical circles. If I was diagnosed with ME, I'd probably try a round of total enteral nutrition to see if that helped at all. If so, that would tell me that it was likely related to diet and I'd segway into a strict elimination diet.

 

[haegemama]

I'm already on a gluten free diet, since I also have Celiac Disease. My doctor said my bloodwook is good right now.