I saw Dr Miner a little over a month ago for my follow-up appointment from the endoscopy done in December.

He had started me on gastrocrom in January and it took me quite awhile to get up to the prescribed dose. When I went up from 1 vial twice daily to 2 vials twice daily, I had some respiratory reactions that finally subsided after dropping back to 1 vial again and building up even more slowly.

I also developed a rash during that time, however, that never went away. And it seemed like, though I had a slight improvement in GI symptoms initially, they got worse gradually until they were about the same as when I started taking it.

He concluded that I had developed a sensitivity to gastrocrom-something I had suspected for quite some time. While I was in his office, my skin was itching all over my body and he of course noticed this as well as dermatographism on my back from where the ties on the exam gown had pressed into my skin.

He suggested 2 options: try Ursodiol to see if the problem was eosinophils rather than mast cells, or start Ketotifen.

He decided to go with the Urso first and I've only been on it a few days but can tell that this is not the answer. My GI symptoms have gone from bad to worse and I had severe abdominal pain (felt like an ulcer) last night that woke me up and kept me awake for hours.

I've stopped the Urso and will wait a few days to try it again-just in case the gut pain was unrelated to it (though I doubt it). Then, if the pain returns, I'll call Dr M's nurse and let her know I'm ready for the Ketotifen.

Meanwhile, I'm still discovering my triggers and trying to find foods that I can eat without pain. I've determined that I am both salicylate and histamine sensitive, so I'm trying out foods that are free of both (or very low in them) and so far I've tolerated white rice and maple syrup (not together, of course). I've had oatmeal a couple of times as well but had some pain and bloating afterwards-though this was during the same time that I started the Urso, so maybe I'll try it again in a few days. I'm still able to eat beef and chicken as well as peas and uncultured dairy, so it's not like I'm starving any more and I'm pleased to say that I've gained weight. I weighed 117 lb in September and now weigh 142-which is a healthy weight for my height (5' 10"). I credit this to discovering that I tolerate milk (and cream. I make ice cream with maple syrup and cream).

I have to admit that  for several months I was convinced that I could heal or control this disease through natural means, but have since concluded that this is not possible. (I don't know if I mentioned this in my introduction post, but I was on GAPS for 2 years prior to finding Dr Mner and all of the fermented foods on that diet made me much, much worse). Maybe later when I'm a bit more stable I can try some other things like quercetin. Until then, I trust Dr Miner a great deal more than I do the naturopath who tried to heal me with essential oils, coconut oil, and kefir (all of which are high in salicylates or histamine and made me so, so sick).

At my office visit I asked Dr M if he felt that this is systemic masto, but he thinks it's probably MCAS. Either way, it makes sense to me. And it's validating to me to know that all of my seemingly unrelated health issues that have dragged on for decades (GI stuff, crushing fatigue, muscle pain, urological pain/frequency, hives, rashes, itching, heart palpitations, feeling cold all the time, unexplained low grade fevers, changes in blood pressure, dizziness,sore throats, swollen lymph nodes, difficulty swallowing, vulvodynia, chemical/drug/food sensitivities, etc) could ALL be caused by mast cell dysfunction.

So I'm hoping it's just a matter of a few more weeks until I finally get started on the right drug to treat this. I've already talked to the pharmacist at Clark's and have his fax number ready to give to the doctor's office when I call next week. In the meantime, I'd love to hear from anyone who has had good results with Ketotifen.

I'm wondering how you did on the ketoifen i was also sensitive to Gastrocrom. I developed rashes. I am getting ready to start the ketoifen and wondering about any side effects etc.