Hi Jenn!

Welcome! I'm sorry to read all that things. Hold on and don't give up! Many of us are undiagnosed for a long time and lots of doctors look at us as we're crazy! I'm not from U.S. but I'm sure that someone here will be able to tell you which doctor is the best for you to see and is near to you. You didn't try to see a dermatologist or hematologist yet?

Hi Jenn,

Welcome to the forum.  Hope you can soon get to the bottom of these problems!

Yes, there are tests for an auto-immune mast cell disorder.  They're posted on this forum, if you can find it.  If not, let me know, and I'll PM the info to you.

A couple of thoughts about meds...  You are under-medicated if you do have a mast cell disorder.  Most of us take both H1 and H2 blockers twice a day.  Zyrtec is only for H1.  Zantac and Pepcid are H2 blockers.  These help with digestive problems.  Also, many of us find Allegra to be a good, non-sedating H1 med.  (i alternate Zyrtec and Allegra, for example.)  

if you don't want to try a completely new medicine, Xyzal is a newer version of Zyrtec, and it might have fewer side effects.  Hydroxyzine is an older version of Zyrtec (hydroxyzine), and it is good for brain fog.  Since it can be  sedating, it might be best for night use.  Of course, talk these things over with your doctor before you make any changes.

Starting new meds can be tricky, as you've found out, so be sure to talk this over with your doctor before you make any changes.  The allergist might let you try a new med in his/her office, in case you react.

Has the doctor checked your tongue for thrush (a yeast-like, fungal infection of the throat and mouth)?  That's a possible cause of the white patches, and it can cause systemic symptoms, too.

You might want to talk with a gi doc about the food intolerances, if you haven't already.  Some people have tried liquid nutrition supplementation to get essential nutrients and to let their gi systems rest.

Hope you can get to see a mast cell expert soon!

Thank you all for the great input.  My appointment with Dr. Schwartz is November 10th and I'm counting down the days!  

Lisa - Thanks for the inside tips on Dr. Schwartz.  I am glad Dr. Schwartz knows about the autoimmune aspect of MCAD.  I have autoimmune disease in my family and have wondered if there is some sort of correlation.  I won't push any testing before my November appointment.  I am seeing a new allergist today, Dr. Oral Alpan.  Have you heard of him?  He was recommended to me by a friend.  I saw his name mentioned a bit online in articles that contain info. on mast cell disorder so it's possible he may know a bit about the disease or at least is aware of it.

Joan - I haven't been tested for oral thrush yet by any doctors.  I have brought up the white tongue issue and none seem concerned.  The tongue coating feels like it is a reaction to things.  When I take the Zyrtec I get a massive white tongue coating - it usually comes to play about 15 minutes after swallowing the pill.  When my menstrual cycle is here my white tongue worsens as well.  The medicating is tricky because I seem to be intolerant of everything.  So, while Zyrtec keeps the massive hiving away and keeps my blood sugar from drastically dropping it gives me other reactions like white tongue and throat tightness - kind of like a gagging feeling.  I have a Gastrocrom prescription from one allergist that I recently began taking.  My first reaction when I drank a whole vile was hives and extreme sound and light sensitivity.  I got scared and did not take it again for another month.  When my stomach problems kicked in I decided to try Gastrocrom again.  This time in much smaller doses.  Basically I take one vile over the course of an entire day.  It does seem to help some with the Zyrtec reaction.  If I take a bit of Gastrocrom before the Zyrtec pill I do not get as much IBS from the Zyrtec.  However, I flush all the time now that I'm drinking Gastrocrom.  It's like the meds worsen one thing but help another.  Is this normal for MCAD patients?  I fear there is nothing that I won't react to.

Do you all follow a rotation diet?  I now seem to react to all foods.  White organic rice well rinsed and well cooked used to be my safe food.  Now in the last week the thought of it makes me nauseaus and I feel itchy inside when I eat it.  I am starting to lose my appetite for everything.  

Has anyone ever done genetic testing for the methylation cycle?  I did the blood test about two weeks ago and am awaiting my test results ( can take up to 12 weeks).  I wonder if it's ever helped anyone on this site.  When all my reactions first started I thought that maybe I just had a sulfite/sulfate allergy brought on by the sulfa drug because of methyl cycle disfunction.  I still think sulfites could be the root cause of my problem.  Is it possible to have an allergy to one thing that is so strong that your body becomes oversensitive and lives in a constant state of histamine overload?  

Sorry for so many questions.  I am a little excited that I've found a place where so many people have symptoms that are similar to mine.  I finally feel like there are people I can bounce ideas off of that won't think I'm crazy.  I swear most doctors are wondering if it's in my head when I start rattling off my 100 daily symptoms.  

I ate two bites of cooked golden delicious apple a few weeks ago and my gums on the right side of my mouth swelled up instantly and remained swollen for a week.  They bleed like crazy each time I tried to brush my teeth.  If someone else were to tell me this before I became sick I'd probably think it crazy too.  But, alas this is now the reality of my life .