A User's Guide
The number of diets suggested to me in the last 20 years is astounding. I've tried dairy-free, gluten-free, high-fiber, South Beach (which actually worked ok but I lost too much weight), FODMAP (which was a disaster), somewhat-Paleo, the "Ireland diet" (more on this later), and low-histamine.
In the end, none of these worked perfectly. My food sensitivities, it turns out, are as unique as my symptoms list. So although the low-histamine diet should, in theory, work for any MCAS patient, I didn't feel the full effect until I decided to go with my instincts.
The best way to figure out your triggers is the elimination diet.Cut everything out and start with just a few safe foods. It had become a running joke in my family that anytime we got together, someone would say "hey, you felt so well in Ireland... have you thought about what foods you ate there?" We started to call it the Ireland diet. So, to determine my safe foods, I consulted the two diets that made the most sense -- low histamine and Ireland. I had eaten a lot of meat and potatoes in Ireland, as well as oatmeal. Chicken is low-histamine, especially when organic and fresh, as are potatoes (according to most food lists) and oats. I had a starting point!
I ate nothing but organic chicken, oats, and potatoes for about three months. And I felt amazing. I no longer had daily diarrhea. My energy was up -- I could actually function after 8pm! I was not a bloated miserable mess at work every morning. I was sleeping well. Even my migraines were much better. This was my detox stage.
Adding in foods
For the next several months, I added in one ingredient at a time. I started with duck eggs which went great! I tracked everything that went into or out of my body, as well as every symptom and environmental factor that I could think of. I had a very specific process for adding in foods:
Wait to feel (relatively) well for a few days in a row. Avoid emotional/environmental triggers.
Eat a small amount of the new ingredient. Track all symptoms.
Each day, eat slightly more of the new ingredient. Track all symptoms.
If still feeling well after 4-5 days -- assume safe! If feeling worse after 4-5 days, cut that food out. If symptoms improved -- assume unsafe.
The logical and control-loving part of me LOVED this process. Unfortunately there were soooo many other factors, it was rarely this clean. There were months where I was only able to add 3 ingredients total. There were times when a new food also coincided with unexpected stress at work or home, or a heat wave, or some other environmental trigger.
I have now been on this diet for two years, and I am feeling better (albeit not great) and can eat close to 40 foods! I do think dieting has made a huge impact on my symptoms, but have also discovered some complications and tricks that I wish I'd known earlier. The following is my advice for anyone considering an elimination diet:
Should I attempt an elimination diet? Are there any risks?
I didn't think there could be risks when I started. Sure I might lose weight or be grumpy from boring foods, but I didn't think much past that. So, a few warnings:
Nutrient deficiency can be worse that food sensitivities -- if you go too long without a balanced diet, it can exacerbate your symptoms and create new ones. The Low Histamine Chef (who recently died -- I really liked her, so I'm sorry for everyone affected by this news) created anti- diets for this reason. When she tried elimination diets, the result was worse than her food reactions. Supplements can help, but are not absorbed as well as nutrients found naturally in foods.
Lack of exposure -- allergies and sensitivities can be tricky, fickle things. When I cut out dairy, I was so sensitive they thought the test was broken. Not going near it for several weeks let my gut heal. But when I reintroduced, I was able to build up a tolerance again. This is key -- eliminate a food long enough to heal, but if you eliminate it for too long, you lose any tolerance you may have had. I know people who have gone so long without any vegetables, they now can't handle any produce without a reaction. I was able to build up a tolerance to salycilates/oxalates by putting up with small reactions at first (thanks, Benadryl) and focusing on anti-histamine produce like parsley and blueberries. Over time, the reactions stopped, and I can now tolerate larger amounts/varieties of produce.
Lifestyle/happiness is important -- the goal of diets is overall well-being. If you are miserable, can't enjoy socializing, and hate mealtimes, that will not increase your well-being.
So, should you take the risk? That's incredibly individual, but my suggestion is that you should start with a broader diet first. Cut out one category at a time and track symptoms. For example, eliminate just dairy for a few weeks. Do you feel better/worse? Then try gluten or nightshades or acids. But do it one category at a time so that you don't lose the balance and enjoyment of having most foods available.
Still no answers? Try eating "clean" -- cut out preservatives, dyes, and pesticides wherever possible. Eat local, fresh, and organic. Our bodies are not made for the millions of chemicals we put in (many of which are illegal in other countries, btw), and I think a lot of our GI symptoms, migraines, and allergies are at least influenced by these toxins.
Still feel the same? Feel like you're ready to try anything? You're in a good place in your life to do something crazy? Talk to a doctor and nutritionist, and set up a good plan for support. If they're with you, give it a try!
How might it affect my life?
I was amazed at the millions of ways this diet has affected my life. Sure, it has positive effects like more energy, less diarrhea at work, yadda yadda. I never expected quite how much it would impact my day-to-day life though:
Socializing -- EVERYONE EATS when they socialize. It's unbelievable. I was shocked at how hard it was to simply have friends without either cheating the diet or being grumpy and hungry the whole visit.
General mood -- I definitely get down when I can't have good foods, especially at events or holidays or random evenings what I just need some chocolate... It makes it hard to not resent friends and family who become associated with the foods I can't eat
Thinking about illness -- I've written multiple posts about how hard it is to maintain a self-images that isn't wrapped up in illness, or how hard it is to not talk about illness all the time when that's most of your experience. Well, it's even harder during extreme diets, because every time you eat, can't eat, or think about food, it's another moment thinking about your illness. Having to track all meals, snacks, and symptoms adds another several moments per day when you have to think about it as well. At times I've actually chosen not to track or add foods for the sole purpose of wanting to focus on other things for awhile.
Exercising -- it was hard at first to find the right carbs-fat-protein ratio, so my energy wasn't very consistent. This was tough on my hypoglycemia and POTS issues, but also on exercise. I had to time it exactly right so that I wasn't hangry or stuffed/bloated when I tried to exercise
Dishes -- this depends on your exact diet, but I have to cook all of my meals fresh. This means pots/pans just about every meal. It also means, however, that I know exactly how to make everything I eat, so I have less waste (in dishes and ingredients)
Routine -- I am someone who craves stability, and I will say that knowing exactly what I'm going to eat every single meal feels less boring than I thought and more like a weight lifted. I no longer have to make any decisions!
Grocery shopping is soooo much easier when I don't have to think about what to get! It's the same small list from the same few aisles. I even know which brands work now.
Creative cooking -- I have learned more, by far, about food in the last two years than the rest of my life combined. It's like when they taught us color theory by restricting pallets to just two or three colors at a time, and then building up from there. I am definitely a more creative and confident cook! Despite still being restricted to about 35 ingredients, people often look over at what I'm eating and say "whoa, can I have some of that?"
How do I know which foods to add?
Do you have a diagnosis? Is there a known diet that has been shown to help people with that diagnosis? Start there, but also think about what foods have historically gone well for you. What's your go-to when you feel sick? Cross-reference those foods with any recommended diets to choose your base. (for MCAS, consider histamine, salycilates, and oxalates)
When adding new foods, there are many things to consider:
Start with likely safer foods before branching out -- the longer you feel well, the more successful your healing process will be overall
Go for taste! When we eat foods we enjoy, the happy chemicals released help us to digest better. Also, life is more fun when you have tasty food
Don't forget nutrition -- think about what nutrients you're missing. I had trouble with veggies, so I was missing most vitamins and had to take supplements for awhile. The first fruit I added was mango because it was the most nutrient-dense of low-histamine produce options.
Find a professional guide -- I found a nutritionist with MCAS. While her experiences (and foods) are very different than my own, it helps to have someone paying attention to make sure you're not becoming deficient in any nutrients. And cheering you on when needed!
Start small -- Some people add in whole categories (for example all dairy) at once. I found a wide variety of reactions within each category, so I recommend just one ingredient at a time, but you could cluster what you add by category. I should also note that I added wheat, not bread. What you may think of as one food could have huge variability and 10+ ingredients. I react to most breads, but not because of the wheat! I can eat bread if it's just wheat, water, yeast, and honey.
Don't overlook things like oils and salt -- I can eat potatoes, but not when fried in canola oil. I can eat salt, but added iodine doesn't go great (I eat Himalayan pink salt)
Check for added ingredients -- I wanted to add peanuts, but every package I found had something else in it! I didn't want to also add canola oil, iodized salt, spices, or preservatives. Find pure ingredients, organic when possible, and preservative-free.
Ease in -- Don't add a ton of the food right away, and not expect a reaction -- often our bodies reject what they don't recognize. Don't freak out; it doesn't mean you're allergic to that food. Ease into it, and if the reaction doesn't subside, stop the food and see how you feel.
Remember your sanity -- if you need to cheat once in awhile, I say go for it. Eating a delicious fruit or scoop of ice cream often boosted my mood far more than it hurt my body, especially if it helped me to socialize.
**Note: one problem I had was that every source I found had a slightly different version of the diet. One said peanuts and cashews were fine but not other nuts. Another said just almonds were ok, but not peanuts or cashews, etc. One list said fish was fine, another said not... it became confusing and frustrating and made me want to give up. Doctors I spoke to clearly had no idea what was accurate or not. My response was to eliminate all questionable foods. The bottom line is that each list was created by a researcher observing patients who, as we've now learned, are incredibly unique and don't follow a perfect trends.
How do I effectively track symptoms/foods?
I use google sheets (through google drive). It has the organizational tools of Excel, but I can share the link with my providers so that they can check at any time for up-to-date information. I have columns for the date, time, food eaten, other factors/triggers, and symptoms. I also have a chart with foods I've added to better keep track of what's coming up and how things have gone. Color-coding helps me get a quick big-picture view of whether I'm generally doing well or not this week. Below is a real example from my spreadsheets:
Complications of eliminating foods
Eating at work -- make sure you that if you work, you have a way to cook or bring a lunch that works for you. For low-histamine diets, foods sitting in the fridge for too long accrue histamine. I advocated to get a hot plate at work so that I could cook duck eggs.
Traveling can be tough. I know I have to eat a lot to get through a long car/plane ride. There aren't many good foods that work for these environments, so you'll have to get creative.
Eating in restaurants takes a lot of patience and problem-solving. Find a couple of restaurants able to accommodate you, then suggest them whenever friends want to go out!
I mentioned it in the risks section, but it bears repeating -- eliminating foods can make it harder for your body to tolerate them again later. It can be worth it, but pay attention to how extremely you eliminate and for how long.
The stress of the diet is also worth weighing in the cost-benefit analysis.
Other things to consider
The color of your poop will likely change! Mention it to your doctor when it does, but don't freak out -- it's likely because of what is/isn't present in your extremely narrow diet. (mine turned bright yellow for awhile, as well as a clay-like grey)
Cravings -- we don't give them enough credit! Cravings can be our body's way of telling us what we're lacking, or letting us know we have a problem. I used to crave bread all the time. My mother (a very well-intentioned physician) told me to eat fewer carbs and to choose more vegetables. I have learned through tracking that I feel much better when starchy foods and, yes, bread feature prominently in my diet. I also have always craved salt -- this was my body's way of trying to amp up my blood pressure. When I feel POTSy, the best treatment right now is to eat/drink a ton of salt. Sugar cravings can be different, but no less informative -- too much sugar acts like a dopamine-releasing drug; the more you have, the more it craves. If you crave sugar, odds are cutting it out for awhile would really be a good idea. Sugar cravings can also be part of candida overgrowth and other gut complications, so if you're having GI symptoms, it might be worth mentioning the cravings to your doctor.
Support -- it can be hugely helpful if one other person is interested in trying out aspects of the diet with you. Having to cook/eat alone every meal can be demoralizing, but bonding with someone over cool new recipes and trying out new foods can be fun! At the very least, it's helpful to have friends/family who will respect your diet enough to ask questions and work around you when you visit.