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.
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.
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.
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!
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!
Some of you have commented on how exhausting/frustrating/crazy this elimination diet process is and I agree! It is incredibly time-consuming considering the research into studies, the searching for recipes, the phone calls to grocery stores, the time my husband spends shopping, menu discussion, and cooking time…! Since none of my diet changes has made me feel any different, it seems like a futile process, but here is what I always keep in mind:
Some people, such as my brother, eat a paleo diet even though they are completely healthy ~ they just want to continue to feel great. Or feel even greater. Some people are diagnosed with a thyroid condition or an autoimmune illness and immediately change the way they eat, trying to ease symptoms or stop the progression of disease. I never even considered doing these things! I had one odd health issue after another and never changed a smidge about the way I eat. The doctors didn’t mention diet, so I didn’t think about it. I didn’t even research the things I was experiencing. This blows my mind more than anything. My time was fully committed to my job, there was no room for anything else. Plus, they were intermittent episodes (I thought) and I was still feeling fine (I thought), so everything was easy to ignore. I had given up alcohol, which, to me, was the ultimate sacrifice ~ do you think I would give up anything else? No way!
One of the best gifts I was given was my OBGYN off-handedly saying, “You should eat some salt if you feel like you are going to collapse.” Uuuuhhh…? Why didn’t I know that? I’d been limiting my salt for years because I thought it contributed to the swelling. Couldn’t just one of the many nurses that have taken my blood pressure over the years mentioned salt to me? They always comment on how low it is and I always let them know I get dizzy. “Try increasing salt.” Just that simple.
The other thing I always keep in mind is my dog, Bowie. When he was young, he developed bumps on his skin. The vet thought it might be a food allergy, so we changed him to a limited-ingredient diet. Over the next year -maybe two- his skin got worse and worse. We changed his shampoo, we washed him more, we washed him less, we gave him supplements, he was put on Benadryl. His coat is a beautiful, deep, glossy brown; he looks like a stallion. But the bumps got bigger, his skin was like braille, and his skin started to have a distinctive infected smell.
Then, one day in the dog park, there was a hand-written sign tacked to a post: “Natural Balance food is killing dogs!” It had some other info on the sign that I can’t remember, but there was nothing online that we could find. Regardless, we paid attention because that’s the brand our dogs ate. And then a miracle: Literally, a few days after we switched their food, we had two puppies back in our house. We didn’t even realise that their happiness and activity level wasn’t normal for them because that’s all we knew for so long. They were DANCING. They were LAUGHING. They were running around like we had just removed their shackles. And then Bowie’s skin made a total turnaround: The bumps and smell disappeared incredibly quickly. We were very grateful, but my heart was broken over the poison we had been feeding them. If anyone had witnessed the change, they would know the radical difference food can make to health.
Lastly, I never want to look back and regret not trying diet changes. One would think that time ticks by slowly when you are sick and housebound, but, it turns out, the years speed by quicker than ever. I don’t want to be 50 or 60 and wish I had tried this in the beginning of my illness.
So, after 3 weeks of eating sort of low-histamine and a month of eating strictly low-histamine, I was not feeling any better. In fact, November and December were probably the worst months I’ve ever had, but I blamed that mostly on repercussions from the tilt table test and IV fluids reaction. I’m sure the stress around a new way of eating and hypoglycemia didn’t help matters, though, so I allowed in some histamine foods (bananas, berries, lemon, some vinegar, all greens, all meat), but I have continued to avoid the biggies (fish, spinach, tomatoes, eggplant, pickled/fermented foods, dried fruit, leftover animal protein). I needed to increase my protein intake to stabilise my blood sugar and started force-feeding myself meat. It was joyless, like taking medication. I am eating this chicken so my blood sugar does not tank in the night… (picture me sitting in bed, eyes closed, slack-jawed chewing a piece of cold, dry meat, grimacing as I swallow).
Around the same time, I eliminated oats ~ the only grain I had never lived without and had, in fact, been eating every day in the form of granola/porridge and oat crackers ~ and that left me desperate for breakfast options that included protein. Beef breakfast patties became a staple. We started investigating all the butchers in our area and my husband talked to all the grocery stores. We figured out when deliveries come in, whether they are fresh or frozen, how long since the date of slaughter, and we buy grass-fed, pastured beef and lamb, organic chicken and turkey, trying to source the healthiest and freshest meat to continue keeping histamine in check. My husband cooks the day we buy meat and then we freeze portions so I have meals at the ready. He still makes beef bone broth and chicken stock, but we cook it in a shorter amount of time and freeze it in silicone ice cube trays and jars. Beef patties for breakfast. Lamb shepard’s pie, portions wrapped in wax paper. Chicken and turkey breasts that can be thrown in soup or chopped on a salad or served with rice pasta and topped with veg and sauce (see FOOD! page for some recipes). Blood sugar crashes became much rarer.
I started to feel a bit better overall in late January, right after my bad pre-syncope episode during my period and right after I quit oats. By “better”, I mean back to where I was around September/October of last year. Able to walk 800-1000 steps a day instead of 500, my daily headache got better. But still not going into the garden, not stretching, not able to talk very much. One amazing change is my heart rate has gotten much lower overall ~ almost too low. In the 70s and 80s when I am standing up, not moving. Mid-50s sitting, watching tv. Low-50s and high-40s sometimes, while lying down in bed.
I refuse to believe that eliminating oats made the change.
A) Because I love oats too much and can’t wait to eat them again. I HATE savoury breakfasts. Hate them. Make me sick and nauseous. I was the one going to the Irish pub for a Sunday fry with my family and ordering porridge or fruit, yogurt and toast. Every morning is a struggle. It has gotten easier, but it’s not enjoyable. I don’t want acorn squash and beef and kale for breakfast and I never, ever will. It’s one of the reasons I have continued to search for “baked goods” recipes and kept rice in my diet (so I can have rice cereal or rice toast, if I like).
B) Because nothing can ever be definitive in such a changeable, cyclical disease. I also stopped taking my B-complex around the same time. That could have been causing my headache everyday!
In the final diet post, I will discuss AIP (autoimmune paleo diet) and all the other complications and sensitivities one comes across when researching online. It’s enough to send anyone straight to the nearest fully gluten-ized and dairy-fied bakery.
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).
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…
That’s what I was singing this morning. Not just because Led Zeppelin is the best band to ever exist, but because I was unpeeling what was going to be the first citrus fruit to cross my lips in 5 months. Today was citrus challenge day!
I never cared about fruit before ~ in fact, I downright hated it (see this, this and this post) ~ until I went on a low-histamine and low-sugar diet and, suddenly, a grapefruit sounded like the forbidden sweet treat of my dreams. Then, a few days ago, I eliminated oats for breakfast and, faced with the option of nothing but meat and veg in the morning, I started craving fruit like never before. So, this morning I had a sweet, succulent tangerine and tonight I had orange, beet and red onion salsa. Yum!
This is a multi-faceted challenge. The Good Doc wanted me to add back in certain things that typically can contribute to fatigue and pain, citrus being one. However, citrus is not low-histamine, so, even if I don’t have a worsening of my usual symptoms, it could be filling up my histamine “bucket”, which could contribute to a flushing episode or angioedema now or in the days to come.
The rest of my dinner was lamb sliders on sweet potato “buns”. We used this Nom Nom Paleo recipe for the lamb (minus the pomegranate molasses). Damn, they were good!
Even though I haven’t written the second part of my Diet post and you’re not intimately acquainted with the hell that is my current food life, I want to post some recipes. So, as I mentioned in my last post, I am gearing up to try a month (or a lifetime) of an AIP (autoimmune paleo)+Low-Histamine diet. The only things I have left to eliminate for the AIP protocol are seeds, almonds and rice.
Here are some other AIP+Low-Histamine recipes that I have loved:
Radish, Mint and Cucumber Salad: This recipe is totally AIP, but, for low-histamine, remove the lemon juice, zest and ACV. I used olive oil, lemon juice and tahini for the dressing because I haven’t eliminated all seeds yet.
This Artichoke-Zucchini pasta recipe is my all-time favourite comfort sauce. I had it just like this over rice pasta (not AIP), then froze the rest and later had it over spiralized zucchini (spiralised courgette ;)) and grilled chicken breast. If you are strictly low-histamine, be careful of the thyme and the arugula.
This Chicken Bacon Alfredo was so good, I ate it until I couldn’t breathe. Strike 1. Then, the next night, I ate the leftovers and had that bad flushing episode I talked about in my last post. Strike 2. So, no more bacon for me. I’m back on the strict-ish low-histamine train. But, without the bacon, it is AIP+low-histamine and I bet it will still be delicious (watch the thyme, if you can’t tolerate it).
I wish I’d taken more photos!
“If you can’t fly, then run. If you can’t run, then walk. If you can’t walk, then crawl, but whatever you do, you have to keep moving forward.”
— Martin Luther King Jr.
I don’t want you all to miss out on my exciting life just because I am too ill too write. So, here are the Cliff notes from the last three months:
* An abdominal ultrasound found nothing for the twinge that never goes away. They told me to go to a GI doctor because the ultrasound doesn’t look at the intestines and bowels. I won’t be taking their advice.
* My oral appliance for sleep apnea was incorrectly made for the sixth time. They took impressions again (I’ve lost count now), had it made again, called me last week and cancelled my appointment because something was wrong again and they sent it back to the lab. Again. I’ve gone from disbelieving to irked to irate to laughing to crying and, now, I just don’t give a shit.
* My CPAP machine was still malfunctioning with the whole revving pressure thing, so we swapped it out ~ again. While we were waiting for a new machine, I got three loaners. The first one dumped water all over my face no matter which mask I wore and how little water we put in the chamber. I’d wake up at two in the morning spluttering and coughing from water up my nose. The second loaner’s motor screeched like it was 70 years old and in need of an oil change and I couldn’t get the third one to work properly at all. My permanent replacement is now my third machine (sixth, if you count the loaners) and it seems to be a keeper (albeit still hell to wear a mask).
* I saw an ophthalmologist who said that I am a “glaucoma suspect”. More on that at a later date.
* I had a bad flushing episode while watching the Golden Globes (awards season! My favourite tv time of year!). I can’t remember ever feeling so on fire. I was sitting naked on the couch, red-faced, sweating, ears on fire, nose plugged up, pain in my cheekbone… I’m still trying to figure out what caused it. Lime or leftovers or bacon or all of the above. My husband had to go out and get me Benadryl. I poked a whole in the capsule and dripped about 10mg on my tongue. My god, that’s nasty. If you can tolerate a whopping 25mg of Benadryl, definitely just swallow the capsule. Yeck.
* Then, last night, the first day of my period, I had a bad vasovagal syncopal episode. I hoped these were behind me. I was doing everything right. Lots of fluids, lots of salt, tylenol, in bed, horizontal… But, the minute I got out of bed to scrounge up some food, I went down. This is much different from feeling light-headed because I got up too quickly or feeling dizzy because I simply have low BP. This is diarrhea, shakes, freezing cold, grey pallor, shallow breathing, cold sweats, and very low heart rate and BP. I thought I was going to lose consciousness and go to the ER, as I have so many times before, but I will fight tooth and nail not to go anywhere near the House of Flu during peak season. Not to mention the fact that I’m scared of IV fluids now that they caused an angiedema /anaphylactoid reaction a few months ago. A ton of salt, electrolytes, and water later, my BP was high enough to register on the monitor (when it’s too low, it won’t register. Gotta get me a better quality monitor) and my heart rate had come up to 60. Again with the biting open of a Benadryl capsule.
I have asked three doctors for help with the mast cell activation tests. I would prefer to have baseline results before I start treating myself with antihistamines and mast cell stabilizers, but they brush off my requests. I research incessantly for help with this problem and, like ME and POTS before it, there seems to be only a handful of knowledgeable doctors in the country and none of them is anywhere near the Pacific Northwest. I can’t help thinking these doctors don’t know what they’re missing. If you knew how amazing this part of the country is, would you really choose to live and practice on the East coast or in North Carolina, Minnesota or Nevada? Really? No offence to all that live in those places! I just watch the weather reports and think quite often, thank god I live here and don’t have to deal with hurricanes/arctic freezes/flooding/20 inches of snow/drought/100+ degree days/tornadoes etc. I like owning one set of clothes.
* My biggest, baddest symptoms at the moment: feeling and looking utterly wasted/half-dead (no invisible illness here!); muscles not working; brain not working; sleep problems; nightmares; eyes blurry; vertigo; shakes; hair loss; headaches; a daily sore throat that feels like perma-strep; feeling overwhelmed. Also, my reactive hypoglycemia and mast cell issues remain a constant threat and, managing them, a constant chore.
* My low-histamine diet attempt (I’ll write more about this in Part 2 of my “Diets” post when/if I’m able to think more clearly) was very difficult and led to more-than-usual blood sugar crashes ~ at different times of day and lower numbers. But I’m still trying to do it, as well as an AIP diet (autoimmune paleo). Oh, I started a Facebook group called, “Low-Histamine + Autoimmune Paleo (AIP) Help.” Please join if you’re another unfortunate with compounded histamine and autoimmune problems!
* I got an Rx for compression stockings, so maybe insurance will cover a decent pair, but have not had the energy to measure my leg or find a medical supply place in the last two months.
* I got a permanent disabled parking permit approved by my GP. I find this really depressing for some reason.
* The Good Doctor ordered the NutrEval test that shows everything about your nutrition and some heavy metals. The test itself was a nightmare. You can’t take any vitamins, supplements or drugs (that are not medically necessary) for four days. That means no sleep help, pain help or poop help. You have to restrict your fluids the day before the test, which, of course, led me to have a blood pressure drop and dizzy weakness in the evening, which led me to drink a bunch of water before bed, which might have altered the test results by diluting my morning urine collection. Then you have to freeze your urine before getting your blood drawn on the same day. The blood draw instructions are convoluted, so I was already skeptical that the phlebotomist would do it properly ~ keep everything frozen and get it in overnight mail. Because, if it’s not your bodily fluids and not your $159 and you don’t know the ordering doctor, why would you be vigilant about the details?
I asked the Good Doc what lab to use for the blood draw. She didn’t know, so she put me in touch with the company rep who told me I could go to any lab ~ “Any lab at all!” I called LabCorp, Dynacare, US Healthworks, NW Hospital, Swedish Hospital and they all said no. I called the rep back. She said AnyLabTestNow.com and Quest labs. I called and they both said no. I called the main 1-800 number for the test company (Genova), they said Pacific Physician’s Labs. All three phone numbers listed were disconnected. Ludicrous! I finally went in person to the lab where I get my thyroid blood drawn and conveniently didn’t mention that this was not my usual doctor from that clinic. They did it, but said they had to courier the samples to their downtown lab and hoped that it would be frozen there and shipped off later in the day. I don’t have faith it made it out of their fridge, honestly. What a nightmare. And this was all done FASTING. Not cool.
* My environmental doctor, Dr. B, ordered a methylation blood test, a mycotoxin urine test and a new Lyme disease test, plus co-infections. The latter tests I can’t afford ($1100+ really?), but I got the results for the first two. Most everything on the methylation test was low (I’ve put the details in my tests page). He told me that I had a MTHFR mutation (what I like to refer to as the “motherfucker mutation”) and my glutathione and all folic acid derivatives were low and I should start taking methylB12 and methylfolate. But I haven’t. Yet.
Also, I got a positive test for something! I tested positive for ongoing mold exposure. Aflatoxin was just on the verge of too high (equivocal), Tricothecene was more than twice the normal range, and Ochratoxin was off the charts high. Unfortunately, if this means moving out of my house and leaving all my possessions behind and living in an aluminum trailer in the dessert, I wish, for once, the test hadn’t been positive. I guess now we need to spend another million dollars getting our home inspected. Although, I have a feeling, just like my ultrasound, MRI and CT scan, that they will find nothing. I probably was exposed years ago or it’s from my overindulgence in oats and nuts or it’s from lying in my garden this summer or we’ll never know. Of course.
* Annnnd….. then my 23andMe came back today… and I don’t have the MTHFR mutation. Dr. B was wrong. I am much more likely than the average person to have rheumatoid arthritis, but I don’t have the mutation that we assumed I had, that my doctor said I had, and that my husband and I have been feverishly researching for the last three months… I know I’m not meant to say it, E., but FML. It was the only treatment for which we had a glimmer of hope. My husband has been cheering me on the last few months: “Hold on! When we get your 23andMe results, we can start a methylation protocol and I really feel this will be the turning point!” Bless him, he is a natural optimist and I just stare at him blankly, try to muster a smile of hope…
Fear not, readers, I am a mutant in other respects and I will hunt down info about the homo/heterozygous SNPs that I do have.
Until next time, I will be shopping the internet for a caravan that is old enough that its interior won’t off-gas noxious fumes, new enough that it isn’t dusty and moldy, big enough that it can house my husband and dogs (in a separate room), modern enough that it can power a large freezer for my low-histamine meals, and comes with an unending fresh water supply, a built-in air filtration system, lots of windows so I can look outside, lots of black-out blinds so I can sleep, has a very comfortable bed, is sound-proof, weather-proof, never gets too hot or too cold, has five million dollars stashed in the floor boards, parked in the dessert, next to a hospital and a Whole Foods, like a pig in a cage on antibiotics…
Now excuse me, I must make haste. The SAG Awards are on and I’m hoping to watch them sitting up, while ingesting food and not collapsing.
My mother told me recently that she only gave me soy milk for a long time as a child after my allergy testing showed I was allergic to half of the things on this planet. This is when I was 3. I’ve always known the story of the skin-prick tests done on my tiny 3-year old back. My mother was torn in pieces listening to her baby wail, so I’ve heard about it often. I knew the testing showed I was allergic to lettuce and rabbits and newspaper and so many other things it seemed like a joke. I thought we had always just ignored it to no consequence and that the first thing I ever stopped consuming was MSG sometime in the 90s. I kept swelling. One day, I awoke with my face blown up like a balloon: my eyes were slits, my lips made it difficult to speak, I could barely bend my fingers. This happened after eating frozen egg rolls in the wee hours, after a night at the pub, so I became really vigilant about avoiding MSG. Then, a few years later, I ate at a Thai restaurant with my sister. I never tempted fate with Asian food, but, god, I missed it! and the restaurant swore there was no MSG in their food. The next day, my face was swelled up, so I never tried that again. I still don’t know if the culprit is definitely MSG, but avoiding it, as well as all Asian food, stopped those acute episodes.
My next elimination was alcohol in 2002. It should have been difficult, but I thought it might be causing me to repeatedly go into anaphylactic shock, so I had no choice. When you’re worried about dying, you’ll give up anything.
I ate and drank anything I wanted for ten more years. And I ate a lot. Since I shed my college weight, I’ve always been around 7 stone (I haven’t switched to thinking of myself in pounds because I like the nice neatness of “7 stone”) and my husband would joke that I ate way more than he did (he’s 14 inches taller than I am). After thyroid ablation in 2009, I couldn’t eat as much as I used to – I didn’t diet, my body simply got full quicker and wasn’t hungry all the time anymore.
In 2012, while trying to cure what ails me, I stopped eating gluten. It never occurred to me that it would be permanent, but it seems it might be. It didn’t change how I felt one bit, but, after talking to numerous doctors and reading this book, it seems like it would behoove me to continue to avoid it – if not for ME, then for my (other) autoimmune conditions.
Soon after that, I had blood tests done that showed allergies to cod, tomato and egg. Giving up cod was no problem, tomatoes and eggs almost killed me. But, I thought, what if? So, I stuck with it and it’s now been a year and a half and, you guessed it, I felt no change.
When I started seeing the Good Doctor last year, she put me on a diet for autoimmune conditions which, she said, resembled most anti-inflammatory regimens. I stopped eating all grains but oats, all legumes, dairy and starchy veg. I cut down on sugar, I stopped eating processed foods, I stopped drinking sodas – even “healthy” stevia ones, even flavored fizzy water. I stopped chewing chewing gum, stopped eating lozenges with colourings. Although I missed all of these things, it was similar to anaphylaxis – I felt like I was (am) dying and would do anything to improve my situation, so the choice was easy. I stuck with this protocol for almost a year and… Felt no different.
This past August, my doctor switched me to a more “traditional” elimination diet. I was allowed to add back grains (except corn) and legumes (except peanuts) but stopped eating red meat, pork, processed meats, shellfish, soy, citrus, and most forms of sweetness: honey, maple syrup, agave nectar, and, obviously, sugar. This was only meant to last for three weeks before tackling challenges, but I took a turn for the worse with my symptoms and doing food challenges showed nothing definitive, so I’ve kept everything eliminated. Compounding this restriction was my low energy and my husband’s overwhelmedness with the changing shopping rules, so neither of us got out of the habits formed over the last year. I joyfully started eating rice again, but didn’t really explore other grains or legumes. Once you’ve been doing something for a long time, it seems a monumental effort to change.
When I saw the Good Doctor again at the beginning of this month, she wanted me to continue this elimination for three more weeks, while making a concerted effort to detoxify my liver because she is thinking of testing me for heavy metal toxicity and, if necessary, going through a chelation protocol. Specifically, what she told me to do was:
- EAT FOODS TO IMPROVE LIVER DETOXIFICATION:
- Cruciferous vegetables (broccoli, brussels sprouts, cabbage, cauliflower, watercress)
- Swiss Chard
- Collard greens
- Garlic, onions
- Green and black teas
- Herbs and spices such as rosemary, basil, turmeric, cumin, poppy seeds, black pepper, and lots of cilantro!
- Metagenics Ultraclear formula: drink one shake each day (she already has me taking their probiotics and I get a patient discount).
- Supplements [I am very happy to be taking vitamins again. I stopped all supplements and vitamins 3 months ago and never intended to stay off of them for so long. I’m eager to add more (CoQ10, Acetyl-l-carnitine etc.), but she is making me take things slow.]:
- Vitamin D
- Vitamin B6 & B2
- Green detox soup[I said yuck to this soup because I thought it sounded like a warm green smoothie and I thought I didn’t like fennel, but it turns out it is SO DELICIOUS and I like to have some every day.]
This soup is a gift to your liver to help it with its critical role in cleansing and filtering the blood. Sulfur-containing foods, such as onions and garlic, will keep your glutathione levels and antioxidant power high. Cruciferous vegetables are great for all your detox pathways, especially estrogen. Enjoy this soup for breakfast, as a snack or any time of the day. You can make a big batch and freeze it in small containers.
Makes 4-6 servings
1 tbsp extra virgin coconut oil or olive oil
1 small onion, diced
1 tsp minced ginger
2 cloves garlic, minced
1 celery stalk, chopped
3 cups chopped broccoli, florets and stems
1/2 head fennel, chopped
1 tsp salt
3 cups water
1/8 tsp freshly ground pepper
Heat the oil in a medium pot on medium high heat. Add the onion and ginger and cook until onion is translucent. Add the garlic, celery, broccoli, and fennel and a generous pinch of salt and continue to cook another 2 minutes. Add the water, remaining salt and pepper. Bring to a boil, then cover, reduce the heat, and simmer for 20 minutes. Place the soup in a blender and blend until smooth and creamy. Adjust salt.
Now the fun part: I haven’t been eating the chard, onions, grapes and berries she instructed me to because I am experimenting with a low-histamine diet. I am always trying to link seemingly unrelated conditions from my past to what is happening to me now. Just like I thought (think) dysautonomia explained not only my symptoms now, but issues I had pre-ME like Raynaud’s and fainting, I started to seriously look into histamine intolerance (HI) and mast cell activation disorders (MCAD). The swelling, the idiopathic anaphylaxis (which happened more often than not during my period), the alcohol intolerance, the dysmenorrhea, the hypotension and syncope (which happened more often than not during my period)… All of this makes sense in the context of a histamine problem. I used to wrack my brain and research incessantly to try to figure out why I was going into anaphylaxis but they could find nothing to which I was allergic. Was it the alcohol? Was it my period? Was it garlic? Was it ibuprofen?
When the allergist explained autoimmune urticaria and angioedema to me, he said the rashes I got during anaphylaxis and the swelling I’ve always experienced were the same mechanism in the body, just in different dermal layers. He said they are caused by tissue permeability and leakage and any vasodilator, such as alcohol, will potentiate the problem.. To demonstrate the autoimmune process, he injected me with my own plasma and I had a reaction on my forearm similar to the histamine control. He said these episodes could be brought on by emotional turmoil or stress and there is nothing to be done but take antihistamines. I counted myself lucky because some people have horrible chronic urticaria (I really recommend the film, Fat, Sick & Nearly Dead).
The more I researched histamine issues, however, the more I realized that my allergist, like all doctors, is limited by what he doesn’t know and what science hasn’t discovered. I asked my GP, the Good Doctor and my new environmental doctor about testing for MCAD and every one of them said they don’t know how. It turns out there really aren’t good tests, but they didn’t know this ~ they didn’t know anything about it!
I am going to continue the info about my low-histamine diet experience in Part 2 of this diet post (as well as all the other crazy elimination diets I’ve been researching: ketogenic, alkaline, low-salicylate, migraine) because there is a lot of information. But I’m giving you homework, if you’re interested in this topic at all: Listen to Yasmina Ykelenstam’s (The Low Histamine Chef) interview with Dr. Janice Joneja. There are 2 parts, but the first part is the most important. Get comfy because it is 49 minutes long and have a paper and pen ready. I’m telling you, it’s worth it. Dr. Joneja is so clear and knowledgeable.
Until next time…