Julie M.
Guiding Light
 
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I Love YaBB 2!
Posts: 104
DC Metro area
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Hi Cindy, I don't blame you a bit for taking that book with you to appointments! I would have done the same thing early on when trying to get "anyone" in the medical community to listen to me!
I had a somewhat roundabout way of getting my diagnosis. I had always been that person with a ton of allergies and weird reactions to things. I just chalked it up to severe allergies. But, in 2007 I broke out into hives body wide and just couldn't get them to clear up even with steroid use. It took several weeks for them to completely resolve.
A few months later I started having severe nausea all the time. It was what I called "stop you in your tracks" nausea. Then after 2 to 3 months of the nausea, the lower GI issues started with a vengeance. My rheumie who I had seen for years (I carried a diagnosis of mixed connective tissue disorder...which he now knows is MCAS) ran some tests and one came back for an autoimmune GI issue, so he referred me to a gastroenterologist.
The gastro is/was awesome! He performed a colonoscopy among many other tests. Even though my GI tissue looked normal during the procedure he had it stained for mast cells. Sure enough, my biopsy came back with elevated mast cells in my gut and I was diagnosed with mastocytic enterocolitis. This was my introduction to mast cells.
If I only had symptoms in my gut, I wouldn't have looked any further. But, I had so many systems involved (itching...all the time, hives, wheezing, bladder spasms, vertigo, reacting to food, burning mouth, joint inflammation, etc.) I began to get suspicious that something systemic was going on.
Given my systemic symptoms, I ended up seeing several allergists here in the DC/Baltimore area and none at the time were on board with MCAS. I had found this forum however, and I believed that I was dealing with some type of systemic mast cell issue given what I was learning. I persisted with one of the allergists and when my 24 hour urine methylhistamine came back significantly elevated I knew I was on the right track.
With the help of those on this forum and the small but growing body of literature on MCAS, I decided to pursue getting a formal diagnosis. At the time Dr. Afrin was still at MUSC so I made an appointment to go see him. I was pretty well convinced at that point that I had MCAS but seeing him gave me my official diagnosis.
So, there you go...it took "a village" to get the diagnosis. But I really credit my gastro in getting me on the right track. Had he not been knowledgeable about mast cell issues in the gut (which was pretty new at that time) I may still be searching for a diagnosis.
I hope you found some success in reaching out to your allergist. There is nothing easy about getting an accurate diagnosis when it comes to MCAS. As Dr. Afrin always says, "patience and perseverance".
Keep us updated!
Best,
Julie
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