New and confused

Sprigs · Post by **Sprigs** » Thu Feb 17, 2011 10:26 am

Hi everyone,
I was diagnosed by biopsy with "possible microscopic colitis" . No definite yes on this although the doctor wanted me to try Entocort. I did, but had a reaction to it. I didn't fit into the watery diarrhea symptom, in fact I tend more toward c. I do react to gluten but had been gluten free even before the diagnosis. I have so many food sensitivities that there isn't much left for me to eat. I've also removed soy, yeast and most dairy with the exception of cheetoes ( I know they are bad for me but I'm short on things to eat). Vegetables and fiber all bother me, everything bothers me. My gastro doesn't comprehend when I tell him about these sensitivities. I have also seen a functional medicine doctor who was treating me with herbal remedies. All we accomplished there was to create new sensitivities.
One of my main symptoms are debilitatiing migraine headaches whenever I eat an offending food.
Anyway, I found your site and have been reading everything and stumbled on topics concerning histamines. So,I tried an antihistamine for my headache, after all what did I have to lose, and bingo, the headache went away. I have never had anything work for them! . So now I am wondering about the mast cell issue or is this normal for mc?
This is all so confusing to me, the more I read, the more confused I am.
Any thoughts would be greatly appreciated.
Thanks.

Post by **tex** » Thu Feb 17, 2011 10:59 am

Hi Sprigs,

Welcome aboard. Your situation sounds rather typical. It's interesting how so many GI specialists are so unfamiliar with MC that they diagnose "Possible MC".

Trust me, possible MC is MC - your doctor just doesn't realize it, just as he doesn't realize that diet control is an important part of the treatment.

I had the debilitating migraines also, when I was reacting, but fortunately, diet alone resolved them, along with all the other symptoms. For many of us, though, mast cell involvement is indeed a serious problem, and that appears to be the case for you, based on your response to an H1 med.

It may be necessary for you to avoid foods high in histamines, and/or foods that trigger the release of histamines. Not near enough is known about this aspect of MC for it to be common knowledge in the GI world, and it is extremely difficult to find a practitioner who is up to speed on it.

It is possible to request that your biopsy samples be treated with a specially-ordered stain, which will make mast cells visible under the microscope, in order to determine if you have mastocytic enterocolitis. This can be done with your existing slides, so that another colonoscopy would not be necessary.

Of course, it's also possible to have mast cell issues without having excess numbers of mast cells in the intestines. Some of us have problems even with normal numbers of mast cells, if the mast cells tend to degranulate, (release histamines), too readily, (IOW, when they shouldn't). That problem, of course, is usually triggered by the ingestion of certain foods.

Also, while diarrhea-predominant symptoms is the most prevalent reaction to MC, many of us have alternating diarrhea and constipation, and we even have several members who have never had D - they only have C, or even normal bowel movements. Most GI docs don't seem to realize that that it's even possible to have MC, without watery D, since the original description of the disease specifies "watery diarrhea", (IOW, the disease was improperly described, in the first place). That's probably one of the reasons why many of them are not sure about diagnosing the disease in some cases.

Again, welcome to the board, and please feel free to ask anything.

Tex

Sprigs · Post by **Sprigs** » Thu Feb 17, 2011 2:18 pm

Tex,
Thank you so much for your response.
I guess I still have some questions. If I request to be tested for mastocytic enterocolitis and it turns out to be positive, is it still considered MC or is it it's own thing and the treatments are different?
Also what do you do when you keep developing sensitivities to food? I am eating a very limited diet but still reacting. I have been thinking of doing a test like Elisa to try to narrow down the what is triggering the reactions or is Enterolab the better way to go?
I've been going through this for 5 years and I am at wit's end about what to do next. I am losing hope but you folks have given me a little something to hold onto.
Your knowledge is much appreciated.
Sprigs

JoAnn · Post by **JoAnn** » Thu Feb 17, 2011 2:32 pm

Hi Sprigs, Welcome to the family. You're in good hands with Tex's advice and the accumulated experiences and wisdom of this board. Good luck on finding your way through this-it takes time and patience, but with the right approach you will find remission. I've been at this for 2 1/2 years. I was tested through Enterolab because of the recommendations here which put me on the right path (gf, df, sf, ef) and used Entocort. Along the way I've discovered what other foods I'm sensitive to by trial and error. I'm now managing just with diet, but keep Entocort on hand in case of a flare or if I'm going to travel.
Good luck on your journey, Love JoAnn

Pat · Post by **Pat** » Thu Feb 17, 2011 3:03 pm

Welcome Sprigs, sorry you are here but you may want to take a look at www.nowleap.com This is what some of us are doing here on this board who are sensitive to multiple things. I have had the testing and am just starting phase I of the diet the dietician made for me. You can read about some of the others who have done this testing by going to the main page of the forum and scroll down where it has MRT testing.

Pat

Post by **tex** » Thu Feb 17, 2011 3:37 pm

Sprigs wrote:Also what do you do when you keep developing sensitivities to food? I am eating a very limited diet but still reacting. I have been thinking of doing a test like Elisa to try to narrow down the what is triggering the reactions or is Enterolab the better way to go?

Certain foods tend to make us sensitive to other foods. Most of us tend to have the best success at tracking down our food sensitivities by first ordering tests at Enterolab, followed by MRT testing, (connected with the LEAP program, as mentioned by Pat), when problems still exist.

Mastocytic enterocolitis is a special form of MC, and the mast cell symptoms are in additional to the conventional MC symptoms. There are presently at least a dozen different known types of MC, and more are being discovered as time goes on. The symptoms of all forms are basically the same, and the treatments are pretty much the same, with slight variations.

We have several members with major mast cell issues. Maybe they will read this and be able to offer some guidelines for fine tuning your diet, and ordering tests, etc.

Tex

hoosier1 · Post by **hoosier1** » Sat Feb 19, 2011 11:38 am

Sprigs,

I was labelled with IBS for years. Then an ER doc asked if I has ever been tested for IBD. He suspected it.

So finally, someone had the foresight to take about 15 biopsies all throughout my GI. The diagnoses was LC.

"Possible"? No. Probably, Yes.

Rich

Linda in BC · Post by **Linda in BC** » Sat Feb 19, 2011 9:48 pm

Hello Sprigs, and WELCOME!!! to our Potty people forum family. I am so sorry that you have been suffering so much, but it sounds like you might be close to finally getting some answers. I don't know much about mast cells and such, so I will let those who do know respond. I just wanted to say hi, and welcome you.

Linda

Gabes-Apg · Post by **Gabes-Apg** » Sat Feb 19, 2011 10:39 pm

welcome Sprigs

the journey to diagnosis is rarely easy for anyone with MC. Having a diagnosis and with the wealth of information on this site, and the people in this family are knowledgeable, kind, supportive and it is all given unconditionally.

take a few breaths and over time all the new terms and explainations mentioned in the posts will make sense.....

MC is very individual, and has a wide and varying appearance, so my tag line for MC management is that there is no right way or wrong way, there is your way. you will find what works for you and what doesnt.

the information on this site is a great way to take some short cuts ie that most of the people here do have intense food intolerances, and majority of us have multiple intolerances. when first diagnosed raw veges, salad, and most fruits are not well tolerated along with basics like Gluten, Dairy, Soy and Yeast.

unfortunately there is not quick fix or magic potion that makes it go away..... but with a bit of patience and diligence you will get better, feel well and it is well worth the effort....

take care

ant · Post by **ant** » Sun Feb 20, 2011 1:06 am

Dear Sprigs

Just wanted to say welcome from Hong Kong. Working out how to treat MC is complicated and, possibly, impossible without finding this board. Keep reading and asking questions. The knowledge will guide you and the compassion support you.

Best wishes on your journey to remission, ant

MaggieRedwings · Post by **MaggieRedwings** » Tue Feb 22, 2011 7:47 am

Morning Sprigs and WELCOME!

Sorry to say I have been sick (not MC flare) and now am flooded with work so I cannot give you a full-blast welcome and tour of the board. Please do read what you can and you will find heart and help here.

Maggie