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

Posted by linja @linja, Sep 27 2:36pm

Hello,

Years ago, I was seen by a well-known endocrinologist in my area for a variety of symptoms I had been suffering from.
After extensive tests, he was sure I has Mast Cell Activation Syndrome.
A couple years later, I saw an allergist where I now live, and he did a few blood tests and said he was certain that I do not in fact have any type of Mast Cell disease.

So my question is, how does one get an accurate diagnosis?? Especially when most of the specialists who treat this disorder will only accept confirmed cases, and most doctors don't seem to know much about it or have different ways of diagnosing it.

I would like to know if I am positive or not. That way, I can learn more about it, and hopefully feel better; or I can move on and know that it's not the cause of my symptoms.

Thank you, and I appreciate your time.

@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?

REPLY
@colleenyoung

@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?

Jump to this post

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.

REPLY
@linja

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.

Jump to this post

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

REPLY
@colleenyoung

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

Jump to this post

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

REPLY

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

REPLY
@linja

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

Jump to this post

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

REPLY
Please sign in or register to post a reply.
  Request Appointment