Hi everyone,

My name is Laura. I am in Indiana. I think I have some sort of Mast Cell disorder. Here is the long sordid history:

In early 2008, I developed a burning in my salivary glands. They have been confirmed as inflamed but no sign of Sjogren's factors.
Immunologists were sure I had Sjogren's but none of the tests show any of the Sjogren's factors. And while one can have Sjogren's without the factors, there is very little that can be done to treat Sjogren's. And it doesn't explain all the other issues. Doesn't mean it isn't a co-morbid issue.

In August 2008, I had acute pancreatitis. Probably should have stayed in the hospital longer but I wanted out and they didn't have a pancreatic specialist to advise me otherwise. I have abdominal pain but GIs say my pancreas is a-okay now so I shouldn't have any abdominal pain. I do have malabsorption issues but nobody has been able to explain this. I did get mild diabetes from the pancreatitis - there is some minor permanent damage to the pancreas.

I have been diagnosed with fibromyalgia, chronic fatigue and probable autoimmune disorders which are all big waste baskets where they toss you when they've ruled out everything else they can think of.

Saw a variety of doctors at Mayo, Cleveland Clinic, Indiana University,
University of Illinois, and around Indiana & Illinois. Had to go on disability, lost my job, went bankrupt, lost both the house we were living in and the house we were building.

Was extremely ill until January of last year. I was sitting around hoping to either get better (no sign of that happening) or worse so that someone could figure out what was wrong with me. A friend suggested I try an antihistamine regiment for mast cell. She has a mast cell disorder. My doctor shrugged and said it couldn't hurt. So I started taking H1 and H2 OTC antihistamines. Like a dummy, I stopped taking my Singular which I only took sporadically as needed anyway.

Anyhow, I got significantly better. I was able to start attending a weekly activity and make most of the sessions. I have added a second activity that I make periodically. My pain is reduced and I am close to off the tramadol and NSAIDs. I think those may actually contribute to my pain. My brain fog is much reduced. And so on.

I didn't realize how well I had gotten until I looked back at emails that I wrote 1-2 years ago and compared them to the last year. WOW! I went from very short emails on very simple subjects to being a human being with a brain and something to say. So I have been re-exploring mast cell disorders, now that my brain is more engaged.

I have been trying to identify my dietary triggers and am doing some (chicken seems to be bad).  I have some questions on what on the vegies list is okay or not.  For example, green beans?  Do they count as beans?  I've seen several reported "low histamine" recipes using lentils.  I thought those would have been in the beans and legumes categories.  And how about fresh (not canned) artichokes?  Some places I've seen the cabbage family included and other places it is excluded due to the salicylates.  I am aspirin intolerant so I assume I should probably leave cabbage alone?  Which makes my starting place for vegies limited to asparagus, bell pepper & cucumber.  Two out of three are okay, but I don't think I can make 4 weeks on only those vegies.  

Also, I have been playing around with adding a second dose of H1 & H2 antihistamines to the daily regime and I have added Singular. This is all within the last month. It seems to be helping. My doctor and I are looking for someone local who can help us.

Anyone know an allergist/immunologist who either knows about mast cell or is willing to learn in the southern to central Indiana area?

Any suggestions or comments on my medical history, trigger identification, etc. are welcome, too.

Now for the important stuff: I am mid-40s, married, no kids, have dogs and cats. I love dogs and would like to set up a kennel-free doggy daycare. My new dream. Haven't had one for so long I forgot what one was. I love plants, especially orchids and cacti/succulents. I am a Dungeons and Dragons player. Have a Ph.D. in Criminal Justice and used to do much with public policy when I had a brain.  I still read like crazy, mostly fiction. I love thrillers and mysteries. The darker the better. I am currently reading a French author: Fred Vargus. Her work is wonderful! Highly recommended, especially if you like dark thrillers. Any reading suggestions greatly appreciated.

Gentle Hugs

Laura

Hi to my fellow Hoosier!

Laura, I also live in Indiana. I am basically in Indpls. How about you? I have not found any doctor that knows mast cell disease here or who cares to know about it. I have a lovely local doc who does care that I have mast cell disease and thus she is very careful when treating me for other problems, and she is happy to follow whatever advice my specialist gives. For my mast cell specialist, I am a patient of Dr. Cem Akin in Boston. He used to be at Univ of Michigan Hospital, which is where I went to see him and be diagnosed. A couple years ago, he moved to Boston to partner with Dr. Castells at Brigham and Young Women's Hospital at Harvard. Together, they have become the top experts on mast cell disease and have opened the first Mast Cell Disorder Center.

Basically, what you need to do is to seriously consider going to Boston and getting an appointment with Dr. Akin or Dr. Castells. Once you have established yourself as a patient, these doctors can easily work to help you via email and telephone so that you don't need to go back to Boston. Dr. Castells likes to set up an intital phone evaluation with a new patient to make sure that you don't waste your time coming out to Boston. She tends to see the MCAS patients as well as Masto patients while Dr. Akin sees only the Masto ones now.

Laura, since I am in Indiana as well, if you need any help with anything or just want to meet for coffee to pick my brain, just let me know! I love to help people get better and regain their lives! If you happen to live near Indy, we could certainly get together to chat.