MICROSCOPIC COLITIS SUPPORT

Hi All,

Here is some basic information about mast cells, and how mast cell issues are associated with microscopic colitis:

What are mast cells?

How are mast cells associated with microscopic colitis?

How do I know if mast cells are causing problems for me?

How are mast cell issues treated?

Tex

Wonderful. And I'm so glad it's a sticky.

Best, Ant

Awesome! I was just going to start a new thread on Mast Cells but I chose to do a search instead. Great info Tex!

How many people here are actually diagnosed with this?

Joanne,

I'm aware of only about a half-dozen or so members who have actually been diagnosed, but IMO that's primarily because mast cells aren't even on the radar for most GI specialists — they don't know anything about them, and they're unaware of the role that mast cells play in digestive system diseases. That's also true for most allergists — they are aware of mast cells, and how they affect IgE reactions, but they know nothing about how mast cells can affect digestive system issues, so they typically are of no help for treating mast cell issues associated with MC.

The members who actually have a diagnosis, tend to have rather severe cases, and they were so motivated that they sought out mast cell specialists, in order to get a diagnosis. There are only a handful of specialists in the country who are qualified to diagnose mast cell disorders, and most of them were trained under the direction of Dr. Maria Castells, of Brigham and Women's Hospital, in Boston.

I would guess that more than two-thirds of us have at least some degree of mast cell issues, but for many of us, mast cells are only a minor problem. So some of us can ignore the problem, while others are forced to treat their mast cell issues in order to achieve remission from their MC symptoms.

Tex

I have been eating only meat and baked potatoes for a week. I really feel like it hasn't helped at all. Last week I tried the zantac and it helped for the first day. The next day, I had WD and for me, my MC usually only causes loose stools and not complete water. So I was worried the zantac made it worse. My problem with MC is the abdominal pain and nausea. My worst day is 3 WD, but endless cramping. So this morning I decided to try zyrtec and my stomach seems to be slowly calming down. Has anyone had any experience with antihistamines and remission? I took only half the total zyrtec I could take, and am going to take the rest at bedtime just to see how I wake up in the morning.

Hi Martha,

Many of us have found that if we have been following a strict diet for long enough that we should be seeing some improvement, taking an antihistamine can break the stalemate and bring remission. It's possible that your results may seem inconsistent because you are not quite far enough along in the healing cycle. The cramping is something that many of us have to deal with until our gut actually begins to heal. It normally takes much longer than a week to see substantial improvement from the diet changes.

Note that antihistamines can also help to suppress/prevent nausea. While MC can develop relatively quickly in some cases, in many others it typically takes months or years for the inflammation that causes MC symptoms to grow to the point at which we begin to show the clinical symptoms associated with the disease. Similarly, it's unrealistic to expect a rapid recovery, because the gut heals surprisingly slowly from the damage caused by the inflammation. But patience and perseverance and attention to details will allow us to get our health back.

Tex

thank you Tex! I thought surely I would find a little relief after a week of diet. I got a little discouraged, thinking oh no foods aren't my problem. I am not a medicine taking person and could handle a diet a lot better than meds. But that antihistamine is really helping the cramps, so I will continue diet and meds.

A few people do see big improvements within a week or 2, but that's not common. We all seem to have different response rates. Without a corticosteroid to mask the symptoms, it typically takes most of us at least a month or more to see a significant improvement.

Tex

Hi Tex,

I know a person who had a colonoscopy in July of 2016, but they didn't do a tryptase stain test at that time. She is telling me she wants to request another colonoscopy to have them do that test.

Have you ever heard of:

https://labtestsonline.org/understandin ... e/tab/test

Or would the results be more reliable from a colonoscopy?

Personally, I don't ask for colonoscopy tests but will do them if 5 years or more have lapsed.

Hi Paula,

That's a totally different test. It has nothing to do with tryptase stains on biopsy slides. The Labtestsonline test you referenced tests for tryptase levels in the blood as a way to monitor mast cell activation for diagnosing systemic mastocytosis.

Tex

Thank you, Tex, for clarifying this for me.

Tex, can you help me "refresh" my memory on the H1 vs. H2 antihistamines. Isn't it the H1 antihistamines that are recommended (Benedryl at bed time, and then Claritin during the daytime, for example)?

Yes, that's correct. But remember that long-term use of first-generation antihistamines such as Benedryl is not recommended because of their anticholinergic effect, which has been associated with age-related dementia, Alzheimer's, and other possible problems. Occasional use is usually OK. The second-generation antihistamines (such as Allegra, Claritin, and Zyrtec) do not have anticholinergic effects.

Tex

If a person finds that by using these H1 antihistamines their D goes away, isn't that a sign of having mast cell issues? If yes, wouldn't it be recommended they continue taking those antihistamines? Or is there a different avenue they should be taking such as avoiding high histamine foods? From what you're saying, it appears the antihistamines should be taken only on a short-term basis.