The Other Autism

Mast Cell Activation Syndrome and Autism

August 10, 2022 Kristen Hovet Season 1 Episode 1
The Other Autism
Mast Cell Activation Syndrome and Autism
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Show Notes Transcript

Mast cell activation syndrome and autism. Is there an overlap? In this episode, I talk about the percentage of autistic people who have some kind of allergy or allergic condition, the difference between allergy and food intolerance, and what could potentially underlie some of the food issues and intolerances seen so often in autism. I also go into some detail about mast cell activation syndrome (or MCAS), the symptoms experienced by those who have MCAS, and why MCAS is so hard to diagnose. 

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Today we're talking about mast cell activation syndrome also called mast cell activation disorder, and autism. Is there an overlap? I want to start off by saying I'm not a doctor. I am a Master of Health Studies student, but anything I say here and in any of my other episodes should not be taken as medical advice. If you're wondering about mast cell activation, if you're thinking you might have it or issues related to it, I suggest going to your doctor and asking for a referral to an immunologist. They're also called allergists, sometimes you'll see allergist slash immunologist, or immunologist slash allergist. 

So it's fairly widely known that autistic individuals usually have some kind of allergy or food intolerance, or they might have many allergies and many food intolerances. And the other thing that's common is gastrointestinal symptoms or gastrointestinal problems. These are so common in autistic folks. Sometimes they are true allergies, and sometimes there are unexplained reactions that are labeled as intolerances. One study I read found that about 70% of the autistic people they studied had some type of allergy or dermatitis or rhinitis or asthma, compared to only 7% of age matched non autistic people - again, in their study. Earlier, when I mentioned that autistic people can have intolerances, these are called intolerances because they're not true allergies. That doesn't mean they're any less real or serious than allergies. It just means these intolerances result from different biological pathways than allergies. 

To cope with these intolerances, autistic people often just have to avoid the things that they suspect caused the reactions and, unfortunately, some people don't ever make the connection. Maybe they react to just too many things and so they can't ever quite pinpoint what it is. There's no test. The only thing they can do is try an elimination diet where you reduce your diet and exposure to almost zero, and slowly build up, adding one thing at a time. So if the problem is food, just maybe eat plain rice, and then slowly add one ingredient every day. If you react, you can safely potentially say that's what I'm reacting to. And then try it again to repeat results to see if that's the thing you're reacting to. For some people, the reaction is so delayed, that it might mean introducing other ingredients more slowly, seeing if your body has a reaction. I will say that it's best to try elimination diets under the supervision of a qualified health care professional, especially if your allergies and reactions are severe. Unfortunately, while there are many individuals and groups advertising certain tests for intolerances outside of, you know, traditional mainstream medicine, there's really no reliable evidence based tests that I know of that you can take to test for food intolerances, and that's why it's so frustrating for so many people. 

Some research has indicated that these intolerances or reactions could in fact be an underlying mast cell activation syndrome, or disorder, or at the very least, just some really hypersensitive little mast cells, leaving the person more likely to respond to certain substances and food that they eat or in products they use on a daily basis. Mast cells are involved in gastrointestinal problems and in inflammation and could explain why so many autistic individuals have gastrointestinal problems. You might be wondering, what is mast cell activation syndrome? Well, it's a condition where for whatever reason, a person's mast cells release their little contents way too easily. And then when they do it's kind of like, blah, all at once, everywhere, like it's a mess. This release is responsible for the allergy like symptoms that so many people with this disorder or condition experience. Some people feel like it's like they have a cold or a flu and it just never goes away. That could be mast cell related. 

Since mast cells are located in so many parts of the body, like the GI tract - that's short for gastrointestinal, the skin, the lungs, the bones, etc., it means that the symptoms are often systemic. They cover so much of the body, so it can be really hard to diagnose. Mast cells are blood cells that are involved in the immune response. Basically, they help protect your body from pathogens, from invaders. Symptoms of mast cell activation syndrome include itchy skin - with or without a rash, edema or swelling right underneath the skin, skin flushing where it looks like your skin is a bit red and this can be on your face or your chest or stomach, muscle pains, mucus buildup, headaches that are so bad that they feel like migraines - and in fact some people with mast cell issues do actually have migraines, difficulty breathing, hives, upset stomach, bloating, diarrhea, constipation - or it can alternate between those two, nausea, heart palpitations, low blood pressure or high blood pressure and low blood pressure kind of all over the place, fainting or near fainting - in medical terminology this is called syncope or near syncope - I hope I'm saying it right, hot flashes that are not related to menopause, trouble thinking or focusing, and even chronic pain. Now that is not a full list of symptoms, and it's important to note that everyone with mast cell activation syndrome will have a different symptom profile. No two people are alike. Everyone's going to react slightly differently, and they might have different triggers. In other words, you know, different foods cause the symptoms, different products that they use cause the symptoms. 

There is some research to suggest that those who are autistic have mast cell activation syndrome more often than those who are not autistic, or another term for non autistic people is neurotypical. This doesn't mean that all autistic people have mast cell activation syndrome. It just means they're more perhaps genetically susceptible. Mast cell activation syndrome also commonly occurs with Ehlers Danlos Syndrome, type three, which is the hypermobile type or hypermobility type. And again, there's a huge overlap. If you're just looking at Ehlers Danlos, there's a huge overlap between Ehlers Danlos, which is a connective tissue disorder, and autism. In my case, I have all three, I was diagnosed with mast cell issues first - although it took a very, very long time to figure out what was causing my reactions, then I was diagnosed as level one autistic, and then I was diagnosed very shortly after with hypermobile Ehlers Danlos, aka EDS type three.

So you'll often see those three occurring together. Another condition that comes along with those is POTS or Postural Orthostatic Tachycardia Syndrome. I'm not going to get too much into that, but there are some experts who think that these conditions may be their own kind of one separate condition because it seems to be a pretty specific subtype in the autism community. Like either you have this sort of cluster of things or you don't. So I'm really interested to see what happens in the research and to see like one day we might have a new diagnosis. Instead of getting diagnosed with all these different things, we just get maybe one. So we'll see. 

I will say a huge kind of word of caution. There's some in the research community who connect mast cell activation as a root cause of autism. But from my understanding, from all the reading I've done, and I've been following this for several years now, that autism is so, so genetic, it's so, so genetic in origin. It runs in families, it runs past, through in multiple generations. From what I have read, I don't think that mast cell activation disorder causes autism. I think it's a co occurring condition, just like Ehlers Danlos is. And we know that Ehlers Danlos is genetic and that Ehlers Danlos, if you just look at Ehlers Danlos, it often coexists with mast cell activation syndrome. You might find some people out there who say, Oh, mast cell activation disorder or syndrome causes autism, and we can fix autism, we can fix autistic people by curing them of their mast cell activation problem. Well, neither is possible, as far as I know. I know there are some improvements that can be made with mast cell activation syndrome. Most of the treatment involves avoiding the triggers, so avoiding the foods avoiding the products that cause the reactions, that cause the annoying or disruptive or sometimes very dangerous symptoms, depending on the person and how bad their condition is. 

Next time we're going to talk about autistic people attracting narcissists. Is that actually a thing? And if it is, why is it a problem? And potentially even what can you do to protect yourself from those baddies? Because narcissists kinda mess things up and you don't want them around, unless you know how to protect yourself. And even then, they don't make the best partners or friends, in my opinion. It's an opinion. It's a strong one, I'll admit. Anyway, I'll leave you with that. Thank you so much for joining me. 

Until next time, bye.