Diets Part IV: Low-Histamine, Mold Diet, Migraine Diet, AIP, Low-Sulfur and SIBO.

Well, the uptick in stability I mentioned in my last diet post has gone away. My daily headache is back, my heart rate is back up (not too high, but not the super-low it was), my muscles are worse, my blood pressure is all over the place, and I’m far more exhausted and dizzy than I was in January and February. So, back to normal!

When we last spoke, I was on a low-histamine, pretty much paleo diet (allowing rice), plus no eggs, citrus, nightshades or soy. I had a mycotoxin panel done and, in rare abnormal test results, found I had some very high levels in my urine. While researching mold toxicity, I found the “mold-free diet“. I was pleasantly surprised to see it was pretty much the same as the low-histamine diet and I was already following it. I was also dejected to learn there was another reason for me to continue avoiding all of these wonderful foods and bending over backwards to not consume leftovers.

Grass-fed, pastured beef sirloin and braised red cabbage from Nom Nom Paleo (click image for recipe).

Grass-fed, pastured beef sirloin and braised red cabbage from Nom Nom Paleo (click image for recipe).

Looking for help for my constant daily headaches, I came upon this article in the NY Times, called, “The Migraine Diet” (list is here). Judith Warner says, “I stopped drinking caffeine and alcohol and stopped eating chocolate, cheese, M.S.G., nuts, vinegar, citrus fruits, bananas, raspberries, avocados, onions, fresh bagels and donuts, pizza, yogurt, sour cream, ice cream, aspartame and all aged, cured, fermented, marinated, smoked, tenderized or nitrate-preserved meats.”

Hmm… Well, yet another reason not to eat dairy, gluten and aged, cured and fermented foods. But I really didn’t want to entertain the idea of life permanently without onions, raspberries, bananas and citrus fruits. Plus, I was still drinking my cup of black tea every morning and eating nuts and some sugar. My three loves. Maybe I would ignore the migraine diet recommendations and just take some Tylenol. Maybe I will revisit this down the road.

I decided, since I was almost there anyway, I wanted to give the Autoimmune Paleo diet (AIP) a chance for a month or two and see if it made any difference to anything. My vitilgo is not a big deal, my autoimmune urticaria and angioedema has not been an issue in a few years (knock on wood), but my thyroid is an ever-present problem and ME could have autoimmune roots, so I wanted to give it a try. AIP basically involves no grains, dairy, legumes, nuts, seeds, nightshades, eggs, caffeine, sugar or processed foods. It was designed to be a temporary elimination with reintroductions after the initial strict period, although some people seem to stick with it forever. I mope-ily removed nuts and seeds from my diet last month and was gearing up to kick rice, tea and coconut sugar to the curb when my research into the methylation cycle led me down a side road to a low-sulfur diet. Hold everything.

No nuts or oats? My new snacks: plantain, parsnip, sweet potato and beet chips.

No nuts or oats? My new snacks:
plantain, parsnip, sweet potato and beet chips.

My 23andMe results (I’ll go into this in more detail later) showed I have a CBS mutation. Some doctors (most notably Dr. Amy Yasko) maintain that one must deal with this “first priority mutation” before embarking on a protocol to unblock the methylation cycle. The CBS, plus two BHMT mutations, means I may have excess sulfur groups, which deplete molybdenum and BH4 and cause high taurine and high ammonia levels. I know from test results that my ammonia levels are high, so this is something I wanted to address. Working on methylation is a very long process- probably a year or two- so, if dealing with the CBS mutation is the first step, I wanted to get the show on the road. Suggestions are to eat a low-sulfur diet (my research indicated that animal protein was not as much of an issue as high-sulfur/thiol veg), so I omitted garlic, onions, most cruciferous vegetables and leafy greens and I stopped my epsom salt baths. This was hard, but I thought, It’s only for a month or so. While continuing to keep out nightshades and high-histamine foods, my allowed vegetable list was: artichokes, beetroot, carrots, celery, cucumber, lettuce, parsley, parsnips, squashes, and sweet potato.

Juice with allowed low-sulfur veg: beet, carrot, celery, cucumber, apple, ginger.

Juice with allowed low-sulfur veg:
beet, carrot, celery, cucumber, apple, ginger.

I started this at the beginning of March … aaaaannndd then I got my appointment with the medical nutrition therapist who was not only recommended by my doctor, but also by someone on one of my Facebook histamine/mast cell groups. Another side road.

The appointment was an hour and a half and she went over my symptoms and my food diary (note to self: edit your personal, private food diary before giving it to your doctor so it doesn’t say things like “want to vom”, “fight with D” and “bad poop” 😉 ). She said coconut was very high histamine which threw me for a loop since half my calories come from coconut in one form or another. I debated this fact with her for a while and eventually she said, “You’ll just have to trust me on that.” She also thought I might have a problem with salicylates, which I guess I eat in copious amounts. Joy. And she was concerned about SIBO: small intestinal bacterial overgrowth. As you can imagine, at this stage I really want to dump my diet decisions into someone else’s lap, so, while I still have health insurance that covers her service (for another few months), I am going to trust her and give her plan a fighting chance.

I am currently on day two of the SIBO test prep diet. I am only allowed to eat meat and rice for two days (if I’d already eliminated rice, I would only be eating meat, so thank god I procrastinated). Yesterday, I ate turkey, lamb, clear beef broth and rice with butter. Real delicious fatty decadent Kerrygold butter, for the first time in a year and a half. Butter is heaven. But no sweet treat after a meal is hell. I only eat a bit of chocolate or fruit or homemade coconut ice cream, but, judging from my extreme irritability, it is a very real addiction. I’m even salivating at the thought of a lozenge. Having an ever-present sore throat really makes lozenges a necessity!

SIBO prep meal

SIBO prep meal

I was secretly hoping that I would feel great these days on such a limited diet and it would spur me on to continue my food elimination experiments. Unfortunately, I am headachy, weak, sore and have zero appetite. Could it be the butter? Maybe, I guess, but I don’t think so. It might be because I washed my hair yesterday. It might just be ME.

In the next installment, I will tell you about my ketoacidosis scare and the strict low-histamine + low-salicylate diet that begins next week. I know you are all on the edges of your seats!

A tip from my Facebook friend, N., to excite my SIBO prep diet: Crispy waffle iron rice! (click image for recipe)

A tip from my Facebook friend, N., to excite my SIBO prep diet: Crispy waffle iron rice!
(click image for recipe)

DIETS Part II: compounded eliminations and low-histamine hell. I mean help. :)

It’s 8am and I’ve already been awake for 3 hours. I’m sick and unemployed, I should be sleeping ten hours a night. I should be sleeping late and luxuriating in the fact that I no longer have an alarm clock going off, a company to oversee, and bosses to answer to (… and bosses to whom to answer). My brain should be able to shut down and heal. It’s February, for fuck’s sake. Time to hibernate. I’ve been missing exciting life and getting absolutely nothing done for 17+ months now ~ why does my brain feel like it has to be on high alert ALL. THE. TIME?

Throughout the day, I’m a dizzy zombie, unable to accomplish anything, but my mind is weakly turning over like the Little Engine that Could trying to get up that hill: What do I need at the store? What could be causing my forehead rash? What will I eat for dinner? Will I try a sleep drug tonight? And then the night rolls around and that little engine reaches the top of the hill and starts to fly down the other side: HOW DO WE NOT END UP DESTITUTE? HOW CAN I MAKE MONEY? I NEED AN M.E. DOCTOR! WE NEED TO MOVE!

So, it feels like ~ and I think it’s the reality ~ I never deeply sleep and I never truly awaken. I am existing in a netherworld, a slightly off-center plane of existence where everything is blurry and too bright, where everything is too loud, but also muffled under ear-ringing… a place where you try to do something month after month, but, during the day, it’s too much energy and, at night, it’s too… sepulchral.

Case in point: I honestly thought it had been about one month since I wrote my diet post, but I see it has been more than three months. That’s a quarter of a year. Three months from now, I will be 41 and it’ll have been a year since I wrote “birthday present thank you cards” on my to-do list (they’re still on the list). Actually, three months from now it will be exactly 5/19 (in American date writing) and those closest to me know that that number means something (what, exactly, I don’t know. One day I’ll write a post about my weirdness with numbers).

raspberry pop tarts

raspberry pop tarts

Today, I woke up starving. It’s now 11:30am and I have already eaten a raspberry “pop tart” (click above image for recipe), some apple, a beef breakfast burger with acorn squash and coconut cream, and a mug of bone broth with sauteed kale, asparagus and parsley.

To continue the saga of how I got to this strange way of eating: When we last discussed food, I had just started a strict low-histamine diet. Before ME, my crazy heath history included idiopathic anaphylaxis, autoimmune urticaria and angioedema, flushing, vasovagal syncope/shock, and a slew of other things that could be caused by histamine intolerance and/or a mast cell disorder, such as medication reactions, dysmenorrhea, osteopenia, headaches, tinnitus etc. I thought if I were very strict with the diet, I’d be able to quickly tell whether or not it would make me feel better. I poured over online histamine lists for weeks. Information is very conflicting because histamine levels fluctuate based on where the food was grown, when it was harvested or slaughtered and how long it has been in storage. Also, if you listened to the interview with Dr. Joneja, you know that histamine is a very important neurotransmitter in your body, but it can build up over a period of time and, if your bucket is overflowing, you will have a reaction. In other words, the salmon with lemon on Monday may not do any harm and neither might the wine and chocolate on Tuesday, but the eggplant on Wednesday might just put you over the edge and you have flushing, a migraine, hives. Or worse, anaphylactic shock. It is a process of trial and error for everyone attempting this diet. You have to figure out what affects your body.

The two best histamine food lists I found were Dr. Joneja’s and this one out of Switzerland, which shows histamine liberators and DAO inhibitors (more on this later) as well as foods that are naturally high in histamines. If you are as insane as I am, you can look at the strictest list possible, which I compiled from the two linked lists as well as about five others. My list is so short because I wanted to know the foods that everyone agrees are probably safe.

I ate strictly low-histamine foods for about month and, let me tell you, it was far more difficult than all the other diet modifications put together. Even a loose attempt at low-histamine is a slice of hell. The dilemma in which I found myself was that I kept adding elimination on top of elimination. So, over the course of 20 months, I had eliminated gluten, tomatoes, eggs, and strawberries; then dairy, legumes, all grains but oats, nightshades, and most processed food; then soy, citrus, pork, red meat, lunch meat, shellfish, condiments, maple syrup, and honey. I added a few things back (rice, red meat, honey), but everything else stayed out. Once you adapt to certain meal staples, it is difficult to change ~ especially when someone else is shopping and cooking for you. And then, on top of these, I went low-histamine. I stopped eating most herbs and spices, spinach, avocados, sweet potato, chard, all vinegar, all fruit except apples and pears, all fermented foods, leftover foods, all fish, chicken… and red meat was out again. It was these last few that set me up for the fall. Having no leftovers in the fridge left me scrambling to find things to eat. I hadn’t figured out how to buy the freshest meat or the process of cooking and freezing to ensure I had meals on hand. I hadn’t figured out how to get enough protein when I wasn’t eating dairy, legumes and most meats. I decided not to give up nuts and seeds, which are avoided on the strictest histamine lists, because they were providing the vast majority of my protein. Still, they weren’t enough and my blood sugar started crashing daily, sometimes multiple times a day, sometimes in the 40s and 50s.

If anyone has experienced severe hypoglycemia, you know how scary it can be. Suddenly I didn’t care about any other symptoms, I just needed my sugar to stablise. Mainly veg does not work for my body. And so my husband became the Fresh Meat Scavenger and I became the Great Meat Eater.

To be continued (sooner than three months from now) with honourable mention to ketogenic, alkaline, low-salicylate, migraine, mold, AIP, and low-sulfur/thiol diets…