Mast Cell Disease: how does one get an accurate diagnosis?

@linja oh that is so confusing to get contradictory information. Mast Cell Activation Syndrome (MCAS) can be hard to diagnose because its symptoms overlap with those of many conditions. I'm also tagging fellow members @pamandrewsrn @megansims @nla4625 @yaramarthe @smbryce1 and @thenerdybunch to share their diagnosis experiences and offer tips.

According to this article:
https://www.healthline.com/health/mast-cell-activation-syndrome#diagnosis
To be diagnosed with MCAS, you must meet the following criteria:
1) Your symptoms affect at least two body systems and are recurrent, and there’s no other condition causing them.
2) Blood or urine tests performed during an episode show you have higher levels of markers for mediators than you do when you aren’t having an episode.
3) Medications that block the effects of the mast cell mediators or their release make your symptoms go away.

Before diagnosing your condition, your doctor will review your medical history, give you a physical exam, and order blood and urine tests to rule out any other causes of your symptoms.

They may also have you avoid certain foods or medications for a period of time to narrow down what your triggers might be.

They may also ask you to keep a detailed log of your episodes, including any new foods you ate or medications you took before it started.

Linja, do your symptoms match the above criteria? Do you keep a journal of your episodes and triggers?

Hello,

Thank you for your reply. My symptoms do match the above description, and although I don't have a journal, I do have a strong idea of what triggers my symptoms and how often they occur.

I hope that journaling your symptoms and triggers will help you and your medical team find answers.

Do you know of any doctors who can provide an accurate diagnosis?

I know it's very difficult getting a dx for Mcas. It took me about 10 years. I had been going to U/M seeing many different doctors. Finally in 2019 one of the longtime Hematologists, a professor there saw me and spent about an hour questioning me and going over my records. He diagnosed me. I still don't have a specialist because he told me they only send him to figure out the difficult to diagnose patients. Apparently he was very adept at this. He's quite hard to see but maybe you could check the clinics there

Linja, I recommend calling Mayo Clinic. Here is information to request an appointment http://mayocl.in/1mtmR63

If you have MCD please comment lol

Hi Brielle, welcome to Mayo Clinic Connect. I moved your message to this existing discussion about Mast Cell Disease, or Mast Cell Activation Syndrome (MCAS), so you can connect with others like @suzeebee227 @linja @pamandrewsrn @megansims and @nla4625

While we wait for others to join in, Brielle, can you tell me a bit more about you? When and how were you diagnosed? What symptoms bother you the most right now?

Hi, I’m sure I have mast cell activation syndrome and every doctor I’ve seen has said it’s allergies. I’ve seen an allergist at Mayo and my out of pocket for him was $700 each time I saw him and he was not helpful at all. He made feel like it was all in my head or that I was making it up. I did go see an allergist at the Arizona Asrhma & Allergy Institute and I was checked for mast cell syndrome and they said that everything was negative. Although every couple of months, I am allergic to all different kinds of foods and then I became allergic to everything that was outside in Arizona. I take over-the-counter allergy medication I have an inhaler I have nose drops eye drops. I take Benadryl and Sudafed and I still do not have consistent relief. I will say when I was at the Arizona Allergy Institute even though the test came out negative they prescribed liquid albuterol as a remedy for it, and that didn’t work either. I did notice that when I change changed my diet to Low carb high protein, I felt better.

There’s A prescription medication called Singulair. montelukast is the generic name. It’s a once a day pill that is well tolerated that helps stabilize mass cell activity. It is used for serious allergies, sinus problems, asthma and mast cell activation. It is not a miracle drug, but should at least be part of the arsenal in the treatment of this difficult to diagnose and difficult to treat condition. Knowing your triggers and avoiding them is the most essential part of controlling the disease. Combining antihistamines to include histamine one and histamine two blockers can help as they potentiate each other. You may get better help at your local university teaching hospital. Wishing you better luck with your medical care. We have to be knowledgeable and assertive in getting what we need these days!