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A (possibly very long) thread about MCAS (mast cell activation syndrome) food sensitivities. A few years ago I was very ill with serious GI symptoms. A full workup, including a SIBO test and a sigmoidoscopy came back normal, minus a lot of inflammation in my GI track. 1/x
In addition to the GI symptoms (one of which was a weird pain in the upper left quadrant of my abdomen) I had continual, low to mid-level anxiety. I had had this anxiety my entire life. I was in therapy for pain and C-PTSD and it was getting a bit better but not much. 2/x
I did a bunch of research into MCAS and my allergist ordered a round of food sensitivity tests. (Food sensitivities are caused by a different mechanism than food allergies though many of the symptoms are similar.) We tested for around 30 of the most common foods I ate. 3/x
Around the same time I started taking oral cromolyn before I ate. When my blood test results for food sensitivities came back I was sensitive to many of my staple foods, including milk, eggs, gluten, beef, pineapple, mango, a bunch of spices...I was shocked. 4/x
I started an elimination diet & pulled out all the foods I had sensitivities to. I also started on H1 &H2 blockers for the MCAS. In less than a week, the GI pain and bleeding resolved. A few days later, the anxiety flat-out disappeared. I felt at peace for the first time ever.5.x
I stayed on this diet for a little over a year, and felt pretty good. I had to play around with the H1 and H2 types and dosages to figure out what worked best, but I felt like I was healing. 6/x
8 or 9 months ago, I started to feel the GI issues and anxiety creep back in. It was so subtle, just a general feeling of uneasiness in my body and mind. I noticed the symptoms increased when I ate. This can happen with mast cells. Sensitivities can wax and wane or disappear. 7/x
I'd heard that some companies can send tests to the home, and since I'm high-risk for Covid-19, I did some research. I decided on a company called Everlywell, because it's a finger-prick self-test at home and they test for a LOT of foods. 8/x.
I did the Food Sensitivity Comprehensive Test, which tests for IgE reactions to 204 foods. This is a referral link. Do not feel obligated to use it, I just want the info out there. 9/x https://refer.everlywell.com/s/Allison995
The results were pretty quick- it took about two weeks to mail the test in and get results online. My results were pretty interesting. I have sensitivities to 49 of the 204 foods that were tested. They have a scale that they use but I use it only as a guideline- 10/x
I've noticed with my MCAS reactions that any food with a score of about 8 can cause reactions, so some foods that they listed as "mild" cause me issues. (I think that's due to the test not being specific to MCAS symptoms. I wish there were tests like that available.) 11/x
So, I changed my diet. I pulled out the foods that I've developed sensitivities to, like my new staples, chicken, ginger, and potatoes. About a week later, the mild uneasiness and anxiety lifted. 12/x
As if this isn't complicated enough, there are other food considerations with a mast cell condition. The goal is to avoid histamine. (there are other chemical mast cell triggers that I am not as familiar with.) Fermented foods like kombucha, chocolate, yogurt? Not good. 13/x
Food that has sat in the fridge for a week? Not good. Histamine forms in foods as they degrade. This is especially an issue with animal products, especially fish. (I forgot about this and had tuna a few times. It has a SUPER high histamine content and triggered a major flare. 14/
Fruit and veggies that are older can also cause me huge issues. It's better to buy frozen if you can't find very fresh produce. And it's recommended to freeze any leftovers immediately. 15/x
As you might imagine, this is a huge undertaking and a major, major lifestyle change. I was a pastry chef in my 20's before I got sick. I LOVE food especially pastries. I miss it terribly. It's expensive and difficult to explain. But it worked for me. 16/x
Food is only one component of mast cell disorder management, but it can be a key component, and if you've been struggling with symptoms it may be worth the investigation. 17/end
P.S. My therapist was very surprised &happy for me when I told him about the anxiety &how it disappeared. I'm grateful that he taught me some great techniques to manage and live with it while it was happening. If you have MCAS it may be worthwhile to mention to your therapist.
*There is a LOT of controversy about the validity of IgG tests. I was highly suspicious when I was first tested. But I don't see how the placebo effect can explain GI bleeds stopping with a change of diet. https://www.npr.org/sections/health-shots/2018/05/28/614125270/do-diy-medical-tests-promise-more-than-they-can-deliver
MCAS was only discovered/classified as a medical condition somewhere around 2007 (I think?) It's a giant black hole when it comes to medical knowledge. Like neurology and some other fields, what we don't know is vastly more than what we do know.
