I want to dedicate a series of posts to the topic of MCAD & food since it is one of the things most of us struggle with, whether we have mastocytosis or mast cell activation syndrome (MCAS).
Specific foods and food additives can not only trigger us into degranulation but the anxiety over sussing out our personal food triggers, deciding which diet to follow and even dealing with food cravings can cause us enormous grief which can also really trigger us.
It has been two long years for me and I still get cravings for foods I may never be able to eat again.
I started my journey toward a MCAD diagnosis in the fall of 2015 thinking I had “just food allergies”. It made sense to me because I started to notice I was having bad reactions a few hours after eating dairy. Then I remembered my mom telling me she gave me whole cow’s milk as an infant when her breast milk dried up, which the doctors yelled at her for because I was incredibly sick as a baby with seizures, anemia and all sorts of other issues.
That led me to go on an elimination diet to see what other foods were triggering me, which led to me discovering it was definitely dairy (all forms!) and corn and soy, too. There were a few more, like red meat and tomatoes on my list. I ending up in the allergy clinic getting food allergy tests, which all came back negative (of course).
Which led to my mast cell disease diagnosis.
I think a lot of us probably start off this way; thinking we have food or other allergies which lead us down the elimination diet path. Is it the right thing to do, though? We often end up on extremely restricted diets as a result and while we are able to pinpoint specific foods that trigger us, many of us find that we were able to tolerate some foods before the elimination diet but afterward they cause all sorts of problems so we end up dropping them out of our diets.
How healthy is it to only eat a handful of foods? Are we putting ourselves at risk for malnutrition? Are elimination diets the best approach?
As always, I turn to the experts. In the 11th Principal for (Successfully) Treating MCAS, Dr. Afrin has this sage advice:
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.
From The Mastocytosis Society‘s page on nutrition in mast cell patients:
Using an elimination diet can be helpful to determine food triggers. Mast cell disease patients often report symptom improvement with dietary changes; however, these changes vary from person to person. Identifying helpful changes takes some experimentation.
But which elimination diet??
There are a few different elimination diets floating around out there. It’s not easy to figure out the best one for mast cell disease. According to Healthline, here are the most popular ones:
- Low-FODMAPs diet: Removes FODMAPs, which are short-chain carbohydrates that some people can’t digest.
- Few foods elimination diet: Involves eating a combination of foods that you don’t eat regularly. One example is the lamb and pears diet, which is popular in the US, where lamb and pears are not commonly eaten.
- Rare foods elimination diet: Similar to a few foods diet, but you can only eat foods that you rarely ever eat, as they are less likely to trigger your symptoms. Common foods on a rare food diet include yams, buckwheat and starfruit.
- Fasting elimination diet: Involves strictly drinking water for up to five days, then reintroducing food groups. This type of diet should only be done with permission from your doctor, as it can be dangerous to your health.
- Other elimination diets: These include lactose-free, sugar-free, gluten-free and wheat-free diets, among others.
The website PaleoTreats has a great breakdown of the most popular “healing diets”:
I thought I had a “leaky gut” (which is pretty much the case) causing me to react to dairy and creating insane levels of systemic inflammation from the food proteins getting through, triggering my immune system. So I started by doing the GAPS diet:
The GAPS diet was derived from the Specific Carbohydrate Diet (SCD) created by Dr. Sidney Valentine Haas to naturally treat chronic inflammatory conditions in the digestive tract as a result of a damaged gut lining.
My son, who has MCAS, is also autistic and has always had problems with dairy, too, so it made sense for us to both try this diet. We followed the rules strictly. I stuck to the allowed foods only and started us on bone broth. It didn’t take long for us to both get really sick as I added in more approved foods. It got so bad we had to quit. Our guts were on fire and he was getting weird, itchy rashes on his hands and fingers more than ever:
All of our allergy and inflammatory symptoms got worse. Far worse. So we gave that up and decided to just whinge it. We ate what we could tolerate and tracked our symptoms carefully. A pattern soon emerged for us both, and it lined up very well with the restricted foods on the low histamine diet by Dr. Joneja.
We had no idea we had mast cell disease yet or that the mast cell disease experts had already figured out that food is a really unique problem for us:
There are foods that patients with mast cell disease seems to be more reactive to overall. These include but are not limited to: Monosodium Glutamate (MSG), alcohol, shellfish, artificial food dyes and flavorings, food preservatives, pineapples, tomatoes & tomato based products, and chocolate. While these foods commonly trigger a lot of patients, they may not be an issue for everyone. That is why an elimination diet is recommended.
Had we known, we would have done things a bit differently and just began eliminating one food at a time while tracking our symptoms to begin with instead of doing the GAPS diet. We would have avoided fermented foods for sure, including the malted barley in our wheat flour. We probably wouldn’t have given up wheat for a few months had we known it wasn’t the gluten triggering us but the barley.
We may even have consulted with someone more knowledgeable in this area, like they suggest:
With the help of a registered dietitian, you can start off with a limited diet and then slowly introduce each food while keeping a written record of what foods you eat and any symptoms that occur. This can help you identify and eliminate food-based triggers from your diet.
We also would have known that things like temperature, texture and the act of eating itself can be an issue:
If you seem to be reacting to all foods, you might be reacting to the act of eating rather than specific foods. It would be best in this case to find a physician to help you with a plan of action to reduce overall mast cell reactions.
Even chewing on “safe” gum over and over can do it. Who knew?!
We didn’t even know we had mast cells and couldn’t have known all of this, of course, so there’s no regret. It has taken us two years to work out ways to eat a healthy, well balanced diet of foods that don’t trigger our mast cells and also one that provides us with the nutrition we need.
Along with taking oral cromolyn sodium religiously, our individual diets have given us both a reprieve of our worst symptoms. We both have less brain fog, less overall inflammation, less allergies and we both gained healthy weight for the first time, too.
Of course diet is just a part of the overall mast cell treatment protocol, but it is an important one. By starting with an elimination diet tailored to mast cell patients and by following a general guideline, it definitely helps. Having a registered dietician who knows about mast cell disease isn’t essential but seems like a great idea, too.
Join me next time for my next post in this series on MCAD & Food, and please share on social media so we can help bring more #mastcelldiseaseawareness to the world together!!
Oh, and good luck. And happy eating!