Thank you to those who have established this forum and those that contribute to it.  I was diagnosed with mastocytic enterocolits about 4 years ago.  Recently the chlolestryamine started making me sick and I had to go off it, found the Wellchol did the same thing so now I'm on my 8th week of cromolyn sodium and learning what foods I must avoid (so far 2 favorites- fresh tomatoes and coffee).  Its really been touch and go the past 8 weeks because the cromolyn wasn't the fast and easier answer the other drug was and to make things work, my gastro doc retired so I have absolutely no one but 2 forums to guide me.

Despite an allergic skin test that says I have no allergies, I have chronic sinusitis and am allergic at the minimum to molds and smoke.  I have a terrible intolerance to heat and bizzare tolderance to working out in the cold.  I thought that was all do to being over weight - but read it could be a sign of symptoms of other things (the doctors say my thyroids fine).

I do have a bizzare condition that I wonder if it could be a mast cell problem.  For about the past 35 years, the skin on the soles of my feet grows at an accelerated rate and I experience extreme itching of my feet.  I do not have fungus problems according to the docs. But I produce so much skin that I must peel off almost on a daily basis, - I could be a donor for burn victims.  Could this skin overgrowth condition be a results of mast cells going haywire?

I hope to continue learning from everyone and maybe someday a doctor on Arkansas may develop an interest in mast cell disorders. Until then I will continue to learn what I can on the internet. That's how I got my family doctor to prescribe the cromolyn.
Thank you and any advice is appreciated.

Hi Rolling, and welcome to the forum!

  Are you able to travel to see a mast cell specialist?  If not, you or your allergist can contact one of the specialists to be guided in testing for mast cell disorders and other problems that have similar symptoms and treatment if one is found.

  When you say you don't test allergic to foods, but you react to some, what you're talking about is things that trigger symptoms.  This occurs commonly in mast cell disorders.  Patients won't be allergic in the true sense, but certain substances will trigger symptoms that seem "allergic."

  Tomatoes are very high in histamine when ripe.  There are a number of others that contain histamine, and there are foods and medicines that trigger mast cells to degranulate and release mediators that cause symptoms.  Look at Deborah's posts under "Foods," and you'll find information about trying a low histamine diet.  There are other elimination diets that might be helpful.  Some people find that gluten is a trigger.  Others can't tolerate salicylates.  Keeping a food and symptom diary might help you figure out some of your food triggers.

There is a hematologist in Little Rock who might be willing to see you.  If you want his information, please PM me.

If you want to post a list of your medicines, people might be able to see if your dosages are in line with the current thinking about treatment for mast cell disorders.