Mast Cell Activation Syndrome or Histamine Intolerance

The American Academy of Allergy, Asthma and Immunology has a search tool to find an allergist/immunologist that might help you find one in your area - https://allergist.aaaai.org/find/.

Also, you might find the following discussion helpful:
-- Mast Cell Activation Syndrome: What treatments help you?: https://connect.mayoclinic.org/discussion/mast-cell-activation-syndrome/

Thank you! I will take a look. I was just hoping to find someone who had a positive experience with a specialist in my area. It’s so difficult to choose a doctor you’ve never met from a list. Searching now. Thanks again.

@pjrockz88 I would suggest you call one of the autoimmune organizations that keep lists of appropriate doctors.
GARD. Genetic and rare diseases organization. https://rarediseases.info.nih.gov/
NORD. National Organization for Rare Diseases https://rarediseases.org
I can only imagine how difficult this must be for you. How long have these hives been a problem? Have you discussed this with your PCP?

I have. And they throw antihistamines and other drugs at it, but no one ever finds a cause and as soon as the drugs wear off a bit, the hives return. Doctors seem to try treating this as a mere skin condition, but if they would touch the hives, you can feel that it goes deeper. I fear whatever this is has inflamed internal tissues. Thanks for responding!

I have a name! But I’ll have to look back in my notes.

However there aren’t many in the area who specialize, so I’m wondering if we’ve both been referred to the same person. Is your person in Northbrook? I’ll look this up and get back to you.

Hi again- It was easier than I thought to got back in my messages and find the referrals my PCP sent me. This is a direct copy/paste from what she gave me:

Dr. Vivian Chou
HOME | Illinois Allergy & Asthma Specialists | Chicago Allergist (ilallergyasthma.com)
Affiliated with Advocate
Takes insurance
Locations in Chicago and Evanston

BILIMORIA, DR. YASMEEN
Glen Allergy and Asthma
2550 Compass Rd.
Unit K
Glenview, IL 60026
847.832.6000
847.832.1900 fax
https://www.northshore.org/apps/findadoctor/physicians/yasmeen-bilimoria
I’m told that Dr. Bilmoria is “the person” in the Chicago area for MCAS. My PCP and a physician on the Long COVID team (both at Northwestern Medicine downtown campus) typically refer to her for MCAS.

Dr. Chou, she doesn’t have direct experience with, but she told me she has a patient (she treats a lot of patients with various chronic pain conditions that cross over with things like MCAS) who’s MCAS significantly improved under her care.

Hope that helps.

First off, I’m so sorry you’re suffering so with the hives. I too get them, but only 1 or 2 at a time. Just a question I have for you, have you had your Thyroid Levels checked? You might have Hashimoto’s disease, which I have and I’ve learned that eliminating 3 foods from your diet will help. They are, Gluten, Dairy and Soy. My body inflammation has come way down, I don’t have hives any longer and I’ve lost some weight. To test for this, you have to have a blood draw, which I’m sure your PCP could do. All the best to you as you try to figure all of this out.

In addition to Hashimoto thyroiditis, lupus can cause both hives and tachycardia. The blood tests for all the possible causes are numerous and expensive. Hopefully the doctors recommended in your area can see you soon and insurance will cover the cost of all the tests. If you want to do your own tests, I can make some suggestions of what to include and you can get the prices from the lab before they are drawn. Have you gotten a definite diagnosis of mast cell activation syndrome or has this just been mentioned as a possibility? Hives and the itching are miserable! I hope you get help soon!

I too had severe hives, raised itchy skin type hives. No Dr knew why. They diagnosed it with 'atypical urticaria'. Since then I developed trigeminal, a rare autoimmune syndrome. I was prescribed Gabapentin. Ever since I started Gabapentin I never got hives again. So, it must have something to do with the nervous system. I really suffered with those rashes, at times, once a week, where I could not move, or they would get worse. I honestly felt like I fell on a beehive.