Today is the 5th day of my new medicine for mastocytosis. There is hope. I was given an appointment with Doctor Iweala (rhymes with Koala) in December of 2022 for October of 2023 and it turns out I was quite fortunate because she is no longer taking new mastocytosis patients. She is taking people who have alpha gal the result of having a tick bite from something that is called a Texas Tic because it has a mark the shape of Texas on its back. It results in the inability to eat any mammalian proteins you can only eat fish and fowl and vegetables and rice.
Doctor Iweala was able to diagnose me with mastocytosis of the GI because of my symptom list and the biopsy they did when I had a colonoscopy and December of 22. It was a wonderful experience to have a Doctor Who understood the collection of symptoms that I've had and knew what to do about them. She has put me on CROMOLYN SODIUM ORAL SOLUTION. It comes in foil wrapped ampules and I am taking four a day three before meals and one before bed. They are light sensitive so they need to be kept in the foil they are also temperature sensitive. There is very little taste with them you place one ampule in 8 ounces of water and drink it down it is fairly flavorless and has no texture it's a bit like drinking a really mild form of electrolyte water. Within the first few days and I mean three I released 5 pounds of water weight and I was able to watch my stomach decrease daily. This makes me very happy I have not experienced any side effects outside of excessive urination except feeling slightly tired the first few days. What I have experienced is no more queasiness while eating and my bowels have become more regular and I'm generally feeling better with fewer body aches. I am very hopeful that over time the tiredness will wear off and I will be able to start introducing foods that I have not been able to eat for several years. The doctor has also recommended that I take 1000 milligrams of quercetin a day and I have not yet found a brand that does not upset my stomach and I wanted to just be with the cromolyn do you feel it's effects. Also continuing a form of Claritin daily. There is also an OTC called Diamine Oxidase. It decreases the biogenetic amines. I will introduce this. It is to be taken before meals when eating out or eating something that normally bothers me.
I do not have general Mastocytosis which is a more serious diagnosis. A 24-hour urine collection test during a flare measuring tryptase levels helped determine if I had the third requirement for a general diagnosis. It was negative, which is a relief.
I have wanted to drink more water and eat less since taking this medicine. I am satisfied sooner with meals and have not had the bloating and cramping I had before. Overall, I am very excited about this and hopeful I will be able to eat out again and expand my diet a bit in the near future.
Dr. Iweala is a research scientist and it's only in clinic one day a week. Fortunately she is training someone who is working with her and she tells me that there's a doctor Lichtenberger in Statesville, NC who deals with mastocytosis. Otherwise you will have to look in your area for someone who specializes in this and it seems to be within the allergy clinics.