I am a big believer in testing so you know what you are dealing with, the root cause of your issues. Until you get to the reason you can’t truly heal. Otherwise, you are just shooting in the dark hoping to hit your target. That’s what I was doing for far too long. Some things helped others made things worse.
My own example is a good one.
So many things I tried either seemed to make me worse or did nothing at all. I am still on this journey of trying to figure things out but I am getting closer to hitting the right target everyday.
Have you ever tried the latest health fad only to feel worse? I’m not even talking about diets either. How many times have you heard how important probiotics are? So you go and get that highly advertised yogurt or buy some kind of probiotic to only feel like you wasted a bunch of money. I have spent a fortune of probiotics and they only made me feel worse. Dizziness, upset stomach, fatigue.
EDS and MCAS
It is very common for those that Ehlers-Danlos Syndrome also struggle with Mast Cell Activation Syndrome. MCAS is a very complex disorder affected by stress, food, and environmental allergies and sensitivities. Knowing this really helped me put things together.
EDS is a connective tissue disorder and since 80% of the body is connective tissue EDS is a multi-system disorder. Connective tissue contains Mast Cells. Mast cells are part of the immune system. Mast cells are particularly prominent in tissues of our bodies that interact with our external world, such as those found on our skin and in our respiratory and digestive tracts.
Without figuring out that I had EDS, I would not have figured out about the MCAS. Do you see why it is important to get the testing to figure out what the root cause of things are? That being said MCAS is very difficult to get tested for. And even harder to figure out what your very specific triggers could be that are making you feel so bad.
To confirm my symptoms were a Mast Cell reaction I followed the steps I found in the following research. (I confirmed my diagnosis with my doctor also and she basically repeated the same information to me about testing and treating)
Although different diagnostic criteria are published, a commonly used strategy to diagnose patients is to use all three of the following:
Symptoms consistent with chronic/recurrent mast cell release
a. Recurrent abdominal pain, diarrhea, flushing, itching, nasal congestion, coughing, chest tightness, wheezing, lightheadedness (usually a combination of some of these symptoms is present)
Laboratory evidence of mast cell mediator (N-methyl histamine, prostaglandin D2 or 11-beta- prostaglandin F2 alpha, leukotriene E4 and others)
Improvement in symptoms with the use of medications that block or treat elevations in these mediators
A word of caution about laboratory testing… many of the labs that can be ordered need to be sent on ice. If the labs are drawn at a facility that does not understand what is necessary, the samples may come back falsely normal. Testing is ideally going to be abnormal immediately after a flare up of symptoms. It would make sense to wait for testing on a “bad day.” There are several labs that can be ordered to help identify mast cell activation, but none of them are 100% accurateand all should be interpreted with care.
For more moderate symptoms, you may need:
H1 or H2 antihistamines. These block the effects of histamines, which are one of the main mediators released by mast cells
Mast cell stabilizers. These prevent the release of mediators from mast cells.
Antileukotrienes. These block the effects of leukotrienes, another common type of mediator.
For severe symptoms, such as anaphylactic shock, you’ll need an injection of epinephrine. This can be done at a hospital or with an auto injector (EpiPen). Consider wearing a medical ID bracelet if your symptoms are severe, at least until you figure out what your triggers are.
Here is the Link for the above information. Links:
What I did
My symptoms are not as severe as many with MCAS but they were starting to get worse. They were starting to interfere with my quality of life. I had been intermittent fasting and noticed that it was helping overall but wasn’t enough. It made sense that by reducing my eating widow would reduce the amount of foods I took in that would cause a reaction.
I then started tracking what I was eating and the reactions I was having. Then I started taking Zyrtec. I immediately noticed a reduction in my heart rate by using it. It didn’t take long to realize the tachycardia I had been dealing with forever what actually my allergy response. In fact I am learning it is one of my primary responses. I can now tell right away if I am responding negatively to a food by how high my heart rate goes. If the anti-histimine doesn’t bring it down enough I personally use a baby asprin which helps too.
As for the probiotics. I learned that many of the fillers used in probiotics and certain probiotics themselves can make those with MCAS worse. So I have stopped those. I did recently find a very specific protocol that many with EDS say has helped them. I have started it and will update you on how it is working for me.
It is a long and difficult process to figure out what works best for you personally. It is worth it though to gain your life back. I hope that what I am learning and sharing helps you too so you don’t have to be in the dark any longer than necessary.