Hi Dancer,
Welcome to the forum anyway!
Yes, I think everyone feels the same way, but if you find some answers and tips for feeling better, it'll be worth it!
The allergist, as with most allergists and other doctors, doesn't know enough about this rare condition to treat you properly. A mast cell specialist will sort through your various problems and get you on a regimen of meds that will help you function better, as well as do any needed testing and refer you to any other specialists that might need to be involved. When there's flushing involved, there are a couple of diagnoses that need to be ruled out, if you haven't already done that, i.e., carcinoid syndrome and pheochromocytoma.
There's a clinic in Cincinnati that treats all mast cell related diseases, including mast cell activation disorders. (Some doctors don't recognize mast cell disease with low tryptase and other normal tests.) The clinic is recommended in the TMS newsletter, too. I don't personally know anything about this doctor, but maybe others will join in here.
University of Cincinnati and Bernstein Allergy Group and Research Center, 8444 Winton Rd., Cincinnati, OH 45231. Contact:
Dr. Jonathan Bernstein, MD
ph: 513-931-0775 fax: 513-981-0779
email: bernstja@ucmail.uc.edu
Ideally, you could go to Boston to see Dr. Castells at the Center of Excellence for Mastocytosis and Mast Cell Activation Disorders, but if you have to wear a mask in the house, an airplane ride might not be the best idea right now.
If you've been reading on this site, your experience with varied symptoms, trouble with smells, additives, foods, and difficulty getting the right combination of medications is not uncommon here.
Whatever doctor you see, you'll need to give him or her copies of all your testing before the appointment, and be sure to ask if there are any tests they'd like you to do before your visit.
Most people find that changing a variety of things helps them feel better. Be sure to read the tips for feeling better on this forum. I would say the basic three are: proper doses and types of medicines, low histamine, easy to digest diet, and cutting back all unnecessary activities until they feel better.
The low histamine diet is a good one to try. Be religious about it until you can increase your meds to a therapeutic dose. They aren't high enough to do you a lot of good yet. I recommend that people who are having trouble increasing meds start with a small dose, using a liquid form and mixing it with water. Then sip it over a longer period of time. That might be a way to get more into you. Of course, if you feel increasing symptoms, go back to the last dose where you were okay, and try again another day.
Keep in touch and let us know how you're doing. Post any questions you have and someone will answer. Everyone on this forum cares!