The Eleven Principles of (Successfully) Treating MCAS: Principle #11


The Diet / Friday, January 5th, 2018 / no comments

Well, here it is! The last principle in my series based on the sage, expert advice from Dr. Lawrence Afrin, mast cell specialist and author of the must-have book, “Never Bet Against Occam: Mast Cell Activation Disease and the Modern Epidemics of Chronic Illness and Medical Complexities”.

I have said it many times but this man and his book (which I’ve read twice now) has changed my life! By gaining a better understanding of my disease and by practicing the principles he lays out for us in his writings and video lectures I have been able to find success in treating my own mast cell disease.

Two years ago I was practically bedridden and today I am about 80% functional.

It’s been a long journey, and it’s not been an easy one, I admit. Had I followed his advice from the beginning, however, it could have saved me a lot of trial and error and I could have arrived here sooner.

In this last principle he brings up the subject of food. Food is a huge part of living with and managing mast cell activation, so his input, while brief, is invaluable.

Principle #11: Eat What You Can, When You Can

Eat as normal/balanced/healthy a diet as you can tolerate. I’m often asked, “Might Diet X help control my MCAS?” My answer is always the same: “I don’t know.” Not only is it difficult with many diets to find agreement on what actually is allowable and disallowable, but also I’ve yet to see any consistent results (good or bad) with any specific diet.

Most of us have been advised at some point to follow a low histamine diet, and I’ve even posted the “official” diet guideline for MCAD patients here, but as I point out (from experience) and Dr. Afrin points out, there is no one size fits all diet for us.

He has a bit more to say on the subject:

This is not to say that a specific dietary alteration can’t help some MCAS patients. I’m fine with MCAS patients trying (reasonable) dietary adjustments, but a dietary adjustment is an intervention and only one intervention at a time should be pursued whenever possible (Principle #3).

Many of us begin our journey with an elimination diet where we cut out several foods at once and many of us come to regret it because it can limit our food lists down to practically nothing. That was my own experience as well as my son’s. Once we began adding back trigger foods we experienced terrible reactions we didn’t previously have to these foods because we were ‘tolerant’ of them to some extent.

Lisa Klimas over at MastAttack has a great article about this topic and offers her own personal experience with a low histamine/elimination diet:

One unexpected result of this diet was that it resensitized me to foods that I had become desensitized to. So foods that used to bother me a little now cause a severe reaction (sometimes anaphylactic, requiring epinephrine.) I understand that the reason for this is because these foods always caused reactions but I was effectively “used” to them so I didn’t notice. Regardless of the reason, my life is a lot more difficult foodwise than it used to be. I can “cheat” with some foods with medications but the reactions are still bad. I don’t always know how I feel about my choice to do the low histamine diet in my particular situation, but the fact is that since I did, I now am forced to observe a version of it, probably for life.

It’s much more complex that just avoiding, say, histamine, too. Yasmina Ykelenstam aka “The Low Histamine Chef“, who has spent years studying this subject in depth, acknowledges this:

Please know that the histamine in food lists you find on the internet have been created by referencing medical studies that show there’s histamine in a particular food or that it may trigger histamine release from mast cells. They are often conducted in test tubes or on animals and do not take into account individual human physiology or your current dietary intake.

She also has this great advice:

Just because you react to a food today, doesn’t mean you will tomorrow, next week or forever. One of the biggest mistakes I made was not constantly challenging my body to accept a healthy food back into the rotation. In cases of moderate to severe reactions it is essential to work with a medical practitioner in doing so. 

That last sentence brings me to the end of this principle and an opportunity for an introduction to Wendy Busse, a registered dietician who works with MCAD patients specifically.

Who is she?

Wendy is a Registered Dietitian with a passion for helping clients that suffer from unexplained food allergy symptoms. She has specialized in food sensitivities for her entire 25-year career, and her practice has evolved into helping clients expand their diet. Her interest goes beyond the science and into the emotional aspects of coping with symptoms and fear around eating. She is an established expert in the field of food sensitivity and has provided dietetic intern education and continuing education for registered dietitians for over fifteen years.

Her professional affiliations include:

Wendy understands the complexities of food triggers and mast cells and can help us maneuver this very difficult aspect of living life in the mast lane. I am honored that she is writing a guest article for MastCellDisease.com as well as answering a Q&A for me for an upcoming series all about MCAD & Food. So please subscribe by using the form in the sidebar so you don’t miss these and all future posts.

You can learn more about Wendy’s services by clicking here. You can visit her Food Allergy News website by clicking here.

And let’s not forget Dr. Lawrence Afrin, to whom I owe my deepest gratitude!! You can visit his website, Mast Cell Research, for the latest news on important research he is doing as well as information on how to make an appointment to see him in person by clicking here.

You can buy his book, Never Bet Against Occam, by clicking here.

Mother. Wife. Patient. Keeper of Huskies. MCAS blogger & advocate. Living life in the mast lane with the Grand Tetons & Yellowstone as my backyard. You can also find me blogging at Life In The Mast Lane and The Empty Nest Housewife.

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