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).
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.
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.
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
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)
Rag and Bone Shop of the Heart 
I just randomly found you online and oddly enough I not only have (mostly) same m.e cfs symptoms as you I’m also doing the whole paleo thing. I’m interested in seeing how things work out for you. I’m doing juicing, salads, meats and… chocolate..totally addicted. And I’ve just started researching the methylation stuff a few weeks ago. It’s a lot to take in esp. with m.e. brain.
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KC, it sounds like, unfortunately, we are in the same boat. So sorry! Please keep in touch and let me know how you progress.
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Fingers, toes, everything crossed for you… btw.. Happy St Patricks Day! x
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Happy Paddy’s Day to you, too! Give that island a hug for me. 😉
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Done!! x
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http://articles.mercola.com/sites/articles/archive/2011/07/19/should-you-ever-take-tylenol.aspx
I am from Finland, and i have read your block year. We are both so same like ill and we start to take ldn on same day, you quit and i still take it. I find this article. I hope and believe that we both find that way to health!
your friend in Finland; Elisabeth
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Hi Elisabeth! Thank you for your comment and the link. I’m so happy LDN is working for you! I would actually like to try it again some day. But, sorry you are ill, too. Sending you support over the miles.
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[…] I’m sticking to my low-histamine + autoimmune protocol diet for the most part (that is: NO gluten, grains except rice, dairy except butter, legumes, […]
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[…] was recently diagnosed with mast cell activation syndrome and I am also looking into high mycotoxin urine tests and deficiencies in my methylation […]
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[…] to do with my diet. Over a year ago, I started an elimination diet for autoimmune conditions (AIP), plus cut out most high-histamine foods (fish, shellfish and avocado etc.). I cut out oats (I had […]
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Forgot to ask you: does the IV saline make your skin soft? Weird question I know but mine gets ridiculously soft. Who needs moisturizer right? Haha
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Well, THAT’S a nice side effect! No, I definitely don’t think that happens to me. How often do you get your IVs?
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It’s nice until people just start rubbing your skin for no reason. Haha. I get a bag of saline every day. That might be why.
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That’s got to be it. Also, in your situation, you weren’t eating crap or even seeing the sun/being exposed to the elements (I know you’d trade baby-soft skin for those things, obviously).
And to the doubters: a bag of saline every day would definitely make us feel better. My once-a-week bag is easy to dismiss as helpful because it would be so temporary, but every day builds on itself — better blood volume, better blood pressure, helps with pain, helps to flush toxins… So glad you have this on board!
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Couldn’t have said it better myself. Can I just refer all the doubters to you?
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Ha! I have very little tolerance for doubters. I haven’t had any in my life, luckily–or very few. And, honestly, if friends/family did doubt this, they wouldn’t be my friends/family anymore. No one sane can watch what happens to us and doubt a severe physical illness. X
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I just stumbled onto your blog after googling AIP, low histamine, low salicylate diet. I’m having a hard time figuring out what to eat. I have the same symptoms as you, same diagnosis’. Looking forward to looking at your more recent posts to see if you are feeling any better.
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[…] SIBO diet and test once before and don’t remember it being very difficult (aside: my post is here and you can see that the National University of Natural Medicine has stolen my food photo for their […]
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I have the same symptoms, headache, weak, tight chest, fast heart beat, heart palipitatio, tired and never hungry. I’d love to talk to you about it it
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Hi Brendon, have you found any reasons for your symptoms? So many of the things you mentioned have resolved for me. I’m still very ill, but my headaches are much more infrequent, no tight chest, no palpitations or tachycardia, always hungry, never overly sleepy… I really hope you have found some relief.
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Girlfriend, You REALLY need to get your living space tested for mold ASAP (if you haven’t already) especially if you have a continuous sore throat. Google mold illness or mycotoxin illness & see if the symptoms look familiar. Stats say close to 50% of buildings have had some kind of water damage and thus mold issues. Because of your genetics you are probably overly toxic & a good part of that load could come from accumulated mycotoxins. I speak from experience. I found mold to be a major root cause of my CFS after we had a significant mold problem a few months ago. The crazy thing was you couldn’t see or smell it because it was in between the walls and under the carpet. To the naked eye our house looked perfectly clean! Mold was the last thing on my radar when it hit us. If you would have told me we had a mold issue then I would have laughed & blown you off. I know better now. For your own sake I highly encourage you you (& everyone else with chronic illness) to get an ERMI or some type of testing done & research mold illness for yourself. Best wishes in your health journey–
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Cris, thank you for taking the time to comment and try to help others. I have had mold testing done and it didn’t raise any major red flags, but I still wonder. Can you tell me since you couldn’t smell or see mold in your house, how you found it? What were the results of your ERMI?
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Hi Elizabeth, sure, I’d be happy to. We actually did not find the mold all at once. It was a sequence of events that occurred that led us to finding it over the span of a few months. Back in May my parents (I live with them due to CFS) took me to the ER because of symptoms I was having with my stomach, throat & mouth (I’ll spare you the details) & the drs. ended up giving me some Benadryl for what they diagnosed as an allergic reaction. This left me completely perplexed because even though my health had taken a turn for the worse, I had no idea as to what would have caused an allergic reaction to that extent. Being a person of faith I prayed for an answer & began looking around my room the next day for something that could have caused me to have an allergic reaction. I had a wooden bench by the window I had made for my cats & I noticed it had some very small gray-black spots on it. Upon further inspection I realized it was mold & being that I was diagnosed as a kid with mold allergies, I thought ok maybe this is it. It didn’t seem like enough to cause such an intense reaction but nothing was making sense at that point. My father & I took that bench & another wooden item out of my room & then we realized the carpeting in the family room might also be a culprit as it was old. Well, my father took it up & that’s when all hades really broke loose & my mom, who hadn’t been sick, got intense burning & stinging in her eyes & started to get the same symptoms I was having though not as severe. At that point we figured it WAS mold & she called her dr. about her symptoms & he said: “You have to get out–get out now! Pulling that carpet probably released mold spores all over the house.” We were stunned & left that day to stay with my aunt. We had a mold inspector come out to the house & he found visible mold in our a/c ducts & then the air samples revealed mold spores in the hundreds & low thousands in several rooms. ( Not a horrible report but enough to indicate a problem.) Eventually, we had a couple more guys come out from the insurance co. & 1 of them had a moisture meter & he found the cause–a pipe or valve between the master bath & home office walls that leaked every time the master shower was used. The mold was between those two walls & then spread into the office under the carpeting. Of course once it got into the office it got picked up by the a/c, spread throughout the ductwork & then all over the house. We had it all over most of our furniture, clothes & stuff but the crazy thing was we couldn’t see that either ( until the remediator showed it to us using a flashlight a certain way). We had mold all around & couldn’t see it! It is nasty insidious stuff & people need to be aware & get their homes tested because you really don’t know what you have going on. Our biggest clue was my symptoms. The other thing you can do is do a urine mycotoxin test which would also confirm exposure. 1/4 of the population does not have the ability to properly excrete mycotoxins so mold can make some of us very sick if we’re not careful.
I hope this helps 😊
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Oh my gosh, I just saw how long my reply was–sorry😬
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I have to eat low sulfur and low salycilate.
Maybe your method is better. Open up the sulfur pathways first than tackle the Salycilates. All I can eat is 3 foods . I have MCAS too. This totally sucks. AIP is the way.
Healing the gut will get rid of these allergies.
I hope you are better!
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Thanks for the comment, Carol! AIP made me much, much sicker! I will never, ever do another elimination diet. I eat everything now. For me, eliminations–especially massive ones like AIP–were dangerous and made things worse. So sorry you are eating so few foods. Good luck to you!
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