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I have EDS, and POTS recently I have been experiencing excruciating abdominal pain. It took 8 visits to the ER before they finally admitted me and did a stomach biopsy. It came back positive for increased mast cells. My GI doctor suspects I Have Systemic Mastocytosis. He referred me to a hematologist/omcolgist who said that this condition is so rare he wants me to see a rare disease specialist. I feel like I am just getting the run around. Can I have elevated mast cells in my stomach and still have MCAD or would it be true Mastocystosis? I have demographia, hives, and other symptoms that have gotten a lot better with Zertec, Pepcid, and Prilosec along with Cromolyn so I know it’s one or the other. Any opinions…?
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