I'm new here and wanted to share my story.  I am a 46 year old female.  In March of 2013 I thought I was getting a uti, was tested and no infection was present.  Over the next several days my symptoms got so bad I went to the ER and was given a ct scan.  It showed a uterine fibroid.  Within a few weeks I had a hysterectomy.  The doctors thought my symptoms were due to the fibroid and there was some concern of whether my ovary was involved.  So, while they were in there we decided that I might as well have my uterus removed.  The pathologists found mast cells in the fibroid.  I was sent to an oncologist who did a bone marrow biopsy which was normal.  He said he was gong to be cautious with me and have me return in 6 months.  During those 6 months I developed heart burn and a burning sensation in my stomach.  I have also continued to have issues with my bladder that seem to be related to what I eat and I have noticed an increase in my heart rate with some foods.  I have done some researching and put myself on a low histamine diet.  I went back to the oncologist in December for my 6 month appointment and told him of my symptoms and he told me that the mast cells were invading my organs.  He gave me a prescription for gerd and said to come back in a year.  

It has been a scary 10 months for me.  I haven't been very happy with my doctors at all.  I didn't even know that the bmb was to test me for mast cell leukemia and systemic mastocytosis.  So, this is where I am at.  I did a ton of research on the internet which just scared me and confused me.  I live everyday afraid and I don't know what to think.  

Thank you for the suggestions.  I did go to another oncologist for a second opinion.  He asked me a lot of questions about my health.  Felt my glands and scratched my skin.  Said I didn't have SM.  Said he wasn't sure what was wrong with my bladder or what was causing the heartburn.  He didn't even feel that I needed to be seen any more.  I
asked the second oncologist about trypase tests and he said they aren't reliable.  In my research, I have done some reading on Interstitial Cystitis.  Apparently mast cells are involved with that.  Wondering how many on here have bladder issues.

It is hard and I don't have much support from family so I just keep everything to myself.  I guess my big fear is that this is cancer.  I try to stay off the internet as that doesn't help.

How many of you have issues with heartburn and stomach acid issues?

Forgot to mention that you shouldn't worry about Cancer. Mast cell disease is NOT Cancer. It is an annoying and sometimes debilitating disease, but that is it. Your oncologists are convinced that you don't have Cancer, so breathe a sigh of relief and focus on being your own investigator to figuring out if you have a mast cell disorder. If you tell us where you live (country and state), then we can make recommendations of the real mast cell specialists who can help you.

Most of us end up having to travel to one of the few actual mast cell specialists in the country. I always recommend going to see Dr. Cem Akin or Dr. Marianna Castells at Brigham and Young Hospital in Boston. They both started the Center for Mast Cell Disorders, and they are the 2 leading researchers/specialists in the field. I am a patient of Dr. Akin, and he totally improved my life with diagnosing me and putting me on the right meds to stabilize me and allow to enjoy day to day life with my kiddos. (I don't live anywhere near Boston either, but it's worth the trip to get a good gameplan of what to do.)

Mast cell disorders are often diagnosed after everything worse is ruled out.  That is why you were tested for cancers and other disorders/diseases.  Some symptoms can be the same, and the testing rules in or out other possibilities.

It's not unusual to have mast cells in organs and in the GI tract, including the stomach and even the esophagus.  They appear in places where there is inflammation.  In many patients anti-inflammatory medicines are helpful in addition to the H1 and H2 antihistamines that Deb described.  Some people do well on aspirin or ibuprofen or naproxen.  Atarax (hydroxyzine) can be helpful for bladder problems, such as cystitis (which isn't necessarily an infection.  It can be solely inflammation.)

Certain foods can aggravate cystitis, which you've probably figured out already.  But also, high histamine foods and other triggers can cause indigestion, reflux, and hyper-acidity.  Everyone seems to have at least slightly different triggers, and figuring out what those are will be key to recovery.  If you keep a food and symptom diary, you might be able to figure out what's irritating your systems.

Good luck, and keep us posted on how you're doing.  Most of all, try to lower your stress level.  That seems to be a universal trigger for mast cell symptoms.

My tryptase level was 11 which the doctor considered normal.  He reviewed all my records and said the amount of mast cells in the fibroid really wasn't that many.  He said it's not impossible but he said nothing at this point would lead him to believe that I have SM.  Thought I should have a GI scope and biopsy to see if there are any mast cells there.  Again, he doesn't think there will be but he said I should have it looked at to see what is causing my daily heartburn.