My husband weaned off over
Months by replacing one day(Sunday) a week with ranitidine for a month then replacing two days a week, Sunday and Weds for a month, then the next month sun, weds, Friday and so on.
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I went to mayo but they didn’t care about helping me, they just insisted that I had depression despite my physician husband insisting he was wrong. But chapel hill dr diagnosed me with mastocytosis and my daughter also has mast cell activation syndrome which can cause the symptoms you are suffering with. I started out with four Zyrtec per day with two Zantac and a singulair and now I’m taking about the same, one less Zyrtec and am on an immunosuppressant called cyclosporine. My daughter receives xolair shots. No more animals in the house and I have mold triggers, outside, in basements and in cured or aged meats or cheeses
Have them restain your gi biopsies for mast cell counts and eosinophils
I understand what you are going through but if you are having a colonoscopy you should have more than the average number of biopsies and ask them to stain for and count mast cells and stain for and count eosinophils. These things are not done unless requested. I had urinary symptoms chronically as well and it turned out to be systemic mastocytosis which took more than 30 years to diagnose. The treatment for these varies somewhat from other inflammatory bowel and also different from celiac. At chapel hill they asked me to be off All medications for at least 6 weeks except immodium, pheneragen and hormones. They wanted to have a good picture of the baseline disease state without masking.
If your mast cell counts are higher than normal you need to find an immunologist who understands mast cell problems. Mayo called me depressed and ignored my complaints at my initial visit so I ended up seeing an immunologist on my own in N.C. and then chapel hill diagnosed me.
I had similar symptoms for years and it was missed because they didn’t order mast cell stains for my biopsies. These are not standard lay performed for endoscopy and colonoscopy. Also if the endoscopy is negative the cells could just be in the colon. I also had systemic symptoms like POTs .
I have a diagnosis of mastocytosis, systemic and just for your information I was treated as a general mast cell disorder for bout 5 years before definitive diagnosis was made with Zantac twice a day Zyrtec two tablets both morning and evening and singulair to start along with immodium and phenergan as needed and now I am also using cyclosporine A with great relief.