I just saw my GI doctor for the follow up to my endoscopy. He sent biopsies out and had them tested for mast cell issues. The results came back saying I had mildly elevated numbers of mast cells in the duodenum. I expected him to blow me off, as the allergist already told me it is not masto, because my tryptase levels were too low.

Well, the first thing the GI guy says, is I do have mastocytosis! He tells me the tryptase tests are not reliable, that they are not sensitive enough to catch everyone, and the biopsy is clear.

Now, I would like to think this was all true, and I have a clear diagnosis. But when I asked him what kind of mastocytosis I have, he was very unsure. Just that whatever I have is mild, because the levels in the biopsy were mildly elevated.

When I asked him what I needed to do, he told me to take the H1 and H2 blockers at high dose for the rest of my life. There are other treatment possibilities, but they are very expensive. He didn't know anything about Ketotifen, and had to look it up online. At least he did! He does know about cromolyn, and also that Singular will help with GI issues, but held those out for later.

Now, I think I shouldn't complain, and I am not, really, but it leaves me a little unsettled. I feel fortunate, as my main doctor has already prescribed Singular and ketotifen (compounded), but he doesn't really know anything about masto. Now it sounds like this doctor only knows the very surface of it, as well. I know, I know, you all told me!

Is there any reason, if I am taking the most important drugs, that I would need to see a specialist? Everything I take helps, but I am far from well. I still have GI reactions, pain, shortness of breath with chemical exposures, and FATIGUE. Any of these could be due to other issues, but I am concerned about how I will tell.

Or should I just give it some time? I have been on Singular for less than a month, and the ketotifen just a little longer. I know those both take time to show major improvement.

How important would it be for me to see a specialist right now?

I agree with Joan...see someone who is a specialist.  I have IC, along with Fibro, neurological symptoms, GI, etc.  My life is soooo much better because I see an IC knowledgeable urologist at a major teaching hospital.  I also work with an immunologist, but would love to be evaluated by a mast cell specialist.  So, if you are near one, I'd try to go see one.  

As for why don't you feel happier....I bawled for 3 days when I was diagnosed with IC and went on the internet and read all the scary stuff.  But, my life has turned out better than I thought I think in large part because I worked with a specialist.

Does anyone have contact info for any of these doctors? I don't know if there is any possibility of my traveling to the east coast (I live on the west coast), but I am sure my regular doctor would be willing to talk with them. So far I haven't had any luck finding someone out here. I've tried contacting the person for the PNW group, but not had any luck with responses so far. I know it can be rough to do support when you are not well yourself, so I will give it another shot.

Joan, I looked up the mastocytic enterocolitis. I have been on the treatment for it for quite some time, plus GI symptoms are only a small part of what I have going on, so I am doubtful that is the issue. However, my docs do a lot of work with GI issues, so they may interested in contacting them anyway, just to learn. I will make sure they see the info.

Any contact info would be greatly appreciated.

Hi Melissa,

We get our ketotifen from the same pharmacy, I think. The pharmacist did tell me he takes it too, for gluten sensitivity. I don't remember him telling me it would take so long to work, so thanks! It helped almost immediately with joint pain, but I knew things were supposed to improve more as time went on. So maybe I just have to hold on for a while, and see how much improvement I can get on the drugs I am already taking.

Lisa finally got back to me! There is an allergist/immunologist an hour's drive from here, in Berkeley, who works with mastocytosis.  I am about an hour north of San Francisco. I think it is worth a shot to try her. Lisa will also be getting me some local patients to be in touch with.

I'm going to try to have my regular doctor talk with some of the specialists. I know he is interested in learning more, as he suspects several of his patients may have mast cell issues. Maybe I can even get him to go to the conference. He has family out on the east coast, so it makes it even more attractive.

Thank you to everyone who sent me contact info. Either my doctor or I will check in with them, see what they think I should be doing.