For those of you on Gastrocrom, would you share benefits/side effects that you've experienced and timing from start of treatment?  Following identification of mast cells in my GI tract, my doctor started me out on one ampule, 3 times a day before meals for the first week, then doubled to 2 ampules beginning week 2.  I did o.k. in the first week, but had horrible gastritis last night following the increased dosage.  With Gastrocrom, I have been able to eat a little dairy and wheat, which amongst a number of others are trigger foods.  Some mild abdominal pain has also popped up again after many pain free months of avoidance.   Anywho - I don't think it is blocking triggers as much as I'd hoped, but perhaps starting over the holidays is a bit too much of a stress test!

Hang in there! It took me a couple months to work up to the therapeutic dosage, which I've been on for one month now. With each dose increase while I was working up to the therapeutic dose, some of my symptoms worsened significantly for a couple weeks before settling down. At this point, I've seen significant improvement in a couple of symptoms and no improvement still of others. According to my doc, it can take 120 days (4 months) to see the full effect. It can take a while, so hang in there and don't worry about worsening symptoms up front, as that seems to be pretty common.

I thought I posted this before, but don't see it, so, sorry if this is a repeat.  I think it's best to avoid trigger foods while you are building up to therapeutic doses of meds.  Later, when you are stable, you can try to add trigger foods back into your diet, one at a time, and see what you can tolerate.  In any case, rotating your diet daily might help keep you from having problems with additional foods.

You might be increasing the Gastrocrom quicker than your body can tolerate.  My suggestion would be to cut back.  One way would be to split your doses and take them more times/day, e.g., 1/2 vial in a lot of water, 8 times/day instead of 1 vial 4 times/day.  You can also use foods (e.g., rice) to slow things down.  I find that if I drink a cup of warm water, slowly, in the morning when I wake up, and then start to take my meds, I don't have as much problem with them.  If that doesn't work, cut back until you can take it without incident, or take a break from it and try again in a week.

Even though I've been on Gastrocrom for quite a while, I'll still have occasional problems like you've been having.  Then I'll do what I mentioned and take less Gastrocrom more frequently.  I think sometimes it's because of stress and other times it's due to something I ate the night before.

Hope something works.  It was worth it to build up slowly for the benefit I get from Gastrocrom.

Wow--thanks for the info about ketotifen! Didn't know it was available anywhere in the US.

Just found information on the tmsforacure.org home page on ordering ketotifen directly from the manufacturer, via a program set up just for patients with mast cell disorders. Our doc seems to prefer it to using a compounding pharmacy.