Hey everyone,

I shared my story recently in an online support group, and someone asked what my advice is to start getting an MCAS diagnosis.

In recent posts, I’ve told the story of how I got my diagnosis, despite the fact that I didn’t technically meet all of the official diagnostic criteria.

Here’s my advice for others beginning to chart a course through the medical system:

1) Find an allergist who is willing to make a clinical diagnosis

Some doctors (namely, allergist/immunologists) will be willing to give you a diagnosis based on your total picture. This is called a clinical diagnosis.

It means they take into account not only your test results, but also your symptoms and personal history.

All three of my current treatment providers have been willing to treat me on the basis of a clinical diagnosis. To me, this is actually because they are experts in their field, and have a great deal of experience in dealing with mast cell patients. So, even though I only had one “abnormal” test result (the criteria state that you technically need two) that did not prevent me from getting a diagnosis and treatment.

However, the truth is that not every doctor will view MCAS that way.

Prior to establishing care with my current team, I did have to work my way through the maze that is our medical system.

I try to keep it positive on this blog, but I do want you to be aware of something. The truth is that not every doctor out there believes MCAS is a real phenomenon. So first, you have to find someone who even believes it’s an actual condition.

Hopefully this is changing, as the doctors who believe in us do more research, and we as patients continue to try to raise awareness.

However, an additional aspect of the problem is that even though an allergist may believe MCAS is a real condition, that doesn’t necessarily mean that he or she will know how to treat it.

2. Find someone with the right training in mast cell disorders.

According to Dr. Anne Maitland, only 3 out of the 77 allergy fellowship programs in the US were actually teaching future allergists to treat mast cell conditions, as of 2018.

I’m sorry to be doom and gloom on here– but I do want you to know the reality, so you know to keep looking for the right treatment provider without getting bogged down in the wrong things.

Find someone who’s had training in mast cell disorders, knows they are real, and knows how to order the diagnostic tests. Which brings me to point #3:

3) Have your new allergist order the diagnostic tests.

These are the tests that my first allergist ordered for me:

• Serum tryptase (a blood test)
• 24- hour urine collection for n-methylhistamine
• 24-hour urine collection for 2,3-Dinor-11Beta-Prostaglandin F2 Alpha

The really important thing to know about these tests for MCAS is that a lot of MCAS patients can have normal test results. It can be a matter of timing– you have to actually take the test at the right time, when you’re symptomatic.

The right treatment provider will understand that you may have MCAS, without necessarily having abnormal test readings right away.

The second allergist I consulted was willing to order all of these tests, but she was very literal about what qualified me for an MCAS diagnosis.

Technically, to receive a diagnosis based on the “official” criteria, you need to have an abnormally high test result on at least two occassions.

However, I’ve only ever had a high reading once– one time, on the 24-hour urine collection for n-methylhistamine.

This second allergist absolutely refused to treat me for MCAS until was able to capture an abnormal reading on a second test. She was completely closed off to the idea of a”clinical diagnosis.” She did advise me to take an antihistamine, however it was more from the perspective of thinking I had allergies.

In her case, I didn’t feel that she was a bad or a closed-minded person. I felt that it had more to do with the fact that she already felt as though she was going out on a limb, treating a condition that many allergists are still skeptical of, and really wanted to do things by the book.

However, my one positive test result was enough to get my foot in the door at more exclusive practices. Which leads me to my next point:

4. Later on, these tests results can help you get in to see one of the more prominent mast cell experts.

If you’d like to have a consultation with one of the more well-known mast cell experts, it’s likely they’ll require you to submit your medical records to ensure that you’re likely to have mast cell issues.

This is because there are so many people out there who think they may be dealing with mast cell issues, and frankly, not enough qualified experts to treat them. It’s a bit like applying to college.

That’s what I had to do. Ultimately, I didn’t feel that either of the first two allergists I consulted were going to be the right people to treat me. However, the one abnormal test result I got, thanks to the tests my first allergist ordered, made it much easier for me down the line to see the doctors I really wanted to see.

So that is really my main advice to you, if you’re looking to start getting a diagnosis:

• Find a doctor who can order these tests. Don’t take them when you’re feeling good.

• Take them when you’re having tons of symptoms, and feeling awful. That is the time to capture your levels of these different substances (also called “mast cell mediators”).

That will at least be a good starting point for you.

Chances are you won’t be able to start out right away with one of the world-class experts. (I hope I’m not inadvertently offending anyone with this, but I think that’s just the way it is!).

But what you can do is at least begin to establish a basis for your diagnosis, and then have an allergist to turn to for more routine matters. Even if you are eventually able to have a consultation with one of the more well-known mast cell experts, you may still find it’s important to have another office you can check in with for things like medication refills and urgent medical questions.

It’s not an ideal system, but this is my best advice to start to make sense of it.

All three of the practitioners I see now are able to treat me on the basis of a clinical diagnosis. Again, they believe my symptoms are suggestive enough of mast cell activation syndrome that it makes sense to treat me for it.

These practitioners do order additional testing from time to time. It’s mostly just a way of comparing how I’m doing over time, although a second abnormal reading really would help to “cinch” my diagnosis. However, I’m happy to say that I’ve actually never had a high reading again, which I take as a sign my treatment plan is working!

I know this is such a complicated system, and this was not necessarily the most cheerful post, but this is my advice for how to navigate this confusing mess.

Hope this helps!

P.S. Please consider following my new Mast Cell Healing Facebook Page! I’m going to start posting updates from there too!