My Weird Diet

Monday, November 14th, 2016 12:35 am
flwyd: (spam lite)
I sent the following message to folks who are coming to Thanksgiving to (attempt to) let them know what I can and can't eat. This is the first time I've written this all down, so it seems worth documenting for posterity. Hopefully I won't have to refer people to it for too many more months.

Most importantly: I don't have to eat every dish you bring! Feel free to make something delicious even if I won't be able to have it. There will be enough food on the table that I can eat.

Executive summary: texture and thickness are key; spices are limited; strong acids are suspect; fats, sugars, and salts are fine. The simple version is "No dairy, no eggs, no to most spices; either very soft or very crunchy."

The details follow. I realize this is long; feel free to send me a recipe and let me call out anything that will cause me trouble.

The most probable explanation for my eating challenges is that the sphincter at the bottom of my esophagus has trouble opening. This manifests in food restrictions based more on consistency and texture than on ingredients. For instance, I can drink a smoothie with blended peanuts, wheat germ, and barley malt but I have trouble with peanut butter on bread.

The texture spectrum:
  • SAFE: Foods that can be sucked through a straw (broth, smoothies…)
  • SAFE: Foods that dissolve in your mouth or otherwise can be eaten without teeth (ice cream, banana, pumpkin puree, mashed potatoes, hummus, halva…)
  • SAFE: Soft blocks of protein (lunch meat, ham, tofu…)
  • SAFE: Firm foods that chew into small pieces (nuts, carrots, some chips and crackers…)
  • PRETTY SAFE: Foods softened in water (boiled or canned vegetables, noodles, cooked legumes, cooked grains…)
  • POTENTIALLY DANGEROUS: Soft but sticky foods (bready substances, nut butter, french fries, lettuce…)
  • DANGEROUS: Foods with gristle or fibrous bits that are difficult to fully masticate (steak, ground beef, kale, spaghetti squash, many fresh vegetables…)


Additionally, there are some ingredients which my body has painfully rejected in the past few months and I now avoid. Aside from dairy, most of these are foods I've loved eating regularly over the last twenty years, so I really hope I can eat them again by next Thanksgiving.

Individual sensitivities:
  • Dairy (milk, cheese, cream, butter… anything derived from a mammal's udders)
  • Eggs (this prohibition adds a lot of challenge to my diet)
  • Extra-virgin olive oil
  • Red wine
  • Capsicum peppers (both spicy and bell)
  • Peppercorn/black pepper (basically anything with the word "pepper" in it)
  • Turmeric
  • Dill
  • Lemongrass
  • Clove


Since several spices have led me to have absolutely miserable days, I'm taking a very cautious approach to spice. I'm able to handle cinnamon, cumin, ginger, and garlic. If a product lists "spices" as an ingredient, I don't eat it. For individual herbs and spices not explicitly listed I decide on a case-by-case basis. If there's a spice you'd really like to bring to Thanksgiving (particularly in the savory category), let me know and I can do a trial in advance–I'd love to collect some more data.

I'm also taking a cautious approach to highly acidic foods like tomatoes, many fresh fruits, and alcohol. I might accept these if offered or I might decline.

Macronutrients:
Fat, sugar, and salt are all good. I'm currently dramatically underweight, so the standard dietary advice given to Americans doesn't apply to me–I'm finishing a whole pint of non-dairy ice cream as I write this and I eat plenty of bacon. I can eat plenty of fat as long as it doesn't make food stick to the throat like salad with dressing (and as long as it's not butter). High sugar is fine too; my morning smoothies feature honey, molasses, or syrup. My dietitian also recommended I have 50% more sodium than the max recommended level, so salt is fine. (I'm currently trying to keep dietary fiber low, but I don't worry much about fiber content at social events, so don't sweat it.)

Common food restrictions:
Other than dairy and eggs, I seem to be okay with all the common allergens (nuts, legumes, gluten, soy, shellfish…). I don't follow any preparation-based restrictions (kosher, halal, raw, fair trade…). For the most part, if I can easily swallow it then I want its calories in my belly.

Dietary advice:
I know you mean well, but whatever diet or food you've heard is good for something or other is probably not applicable to me. Most diets have weight loss as a goal, but losing more weight would significantly compromise my health. It's hard to sell diet books if weight gain is a side effect, so if you've heard of a diet, it's probably not right for me (unless you've got a good recipe for chanko nabe). Similarly, I'm actually trying to avoid anti-inflammatory foods for a while. When I was diagnosed with an autoimmune disorder I went full haul on anti-inflammatories. Unfortunately, I think the COX-blocking effects may have negatively impacted my gut, so I cut them out of my diet (with the exception of omega-3 fatty acids and ginger). If you saw an article about some wonder food or supplement, I'm probably avoiding it.
flwyd: (cthulhufruit citrus cephalopod)
One perk of being underweight and seeking to boost caloric intake:
I get to count eating half a pint of non-dairy ice cream as an accomplishment.
flwyd: (spam lite)
On Wednesday, June 29th, I had a massage in the morning, then ate a boiled egg at work. Around the time I finished the egg, the upwelling of mucus let me know that my stomach was not pleased with the choice. Over several trips to the bathroom, I eliminated that egg. I tried to have lunch over several hours in the afternoon, but ended up vomiting most of that. We went to the ER that evening, 'cause I had nothing better to do, and they didn't see any urgent issues. I was kind of dehydrated, so they gave me two IV bags of saline. The next day was pretty rough, though I was able to eat some non-offensive mung bean porridge and take a nap.

That Friday, I had an appointment with my gastroenterologist. When I told her I'd been taking meloxicam for chronic inflammation, she immediately recommended against it, due to negative NSAID interactions with the stomach. I stopped taking it, and was able to eat somewhat normally over the long weekend.

The following Wednesday, July 6th, I got to work and had a plate of scrambled eggs. That too led to several hours of mucus reflux and slow ejection of egg from my stomach and esophagus. Noting that the two commonalities between the vomiting episodes were eggs and Wednesday, I added the former to my growing list of speculative dietary restrictions.

In late July, I had a colonoscopy (all indicators normal) and endoscopy. They dilated my esophagus, which led to three blissful days during which I could eat like my former self. Unfortunately, that Friday I had an acid reflux issue while getting off my bike, then a return to the vomiting and mucus problem, and once more to the constricted esophagus. Bah.

That weekend, I started taking curcumin (turmeric) supplements, recommended by my podiatrist as a non-NSAID anti-inflammatory. During the winter and early spring I'd been consuming a bunch of turmeric by way of chai (not to mention a tamarind-turmeric pie or three), but a crock pot of hot liquids is less enticing during hot weather.

On 8/8 I had a medical hat trick: follow-up visits with the podiatrist, gastroenterologist, and rheumatologist. The latter two cautioned against turmeric as an NSAID replacement, noting that it works on the same pathways as NSAIDS. (It's a COX inhibitor.) So I stopped taking the supplement.

This Wednesday I had another bout of "Your next several hours will be punctuated by ejecting mucus," brought on by a delicious side of cardamom rice. "WTF, am I allergic to Wednesdays?" I wondered. I checked the ingredients today, though, and noticed it had turmeric in it.

All righty then. Add turmeric (and by extension curry) to my dietary restriction list, along with eggs, spicy things, bready things, milk, steak, and anti-inflammatory drugs. And maybe be extra careful on Wednesdays?


This evening, I started wondering: if turmeric is a problem, are there other anti-inflammatory foods I should avoid? I found this nice open access paper on natural anti-inflammatory agents which explained the pathway for several of them. COX inhibitors (NSAIDs and turmeric) can produce stomach problems, particularly when they affect COX-1, which "promotes the production of the natural mucus lining that protects the inner stomach and contributes to reduced acid secretion". Fortunately fish oil isn't a COX inhibitor (it sounds like it gets COX to generate anti-inflammatory prostaglandins which in turn inhibit inflammatory cytokines. There are some herbs which inhibit NF-κB–green tea, maritime pine bark, red wine grapes, cat's claw, and chili peppers. It sounds like NF-κB may inhibit COX-2, not sure about COX-1. (There's also frankincense which inhibits 5-LOX, which I don't yet understand.)

After kinda-grokking all that medical jargon, I had a couple insights.

First, if I pursue a pro-inflammatory diet, would that stimulate my COX-1 response and help rebuild my stomach's mucus and reduce acid issues?

Second, maybe my health focus should be finding the ideal anti- and pro-inflammatory mixture. I've got an inflammatory chronic disease, and too much inflammation leads to serious acute problems. But I think I'm learning some of the ways that inflammation serves a vital role in my health. Fortunately I'm a Taoist; I've got the mental framework to wobble down this path.

At a family reunion for the Minnesota-Norwegian branch of my tree last month, one of my dad's cousin said there was a high incidence of autoimmune disorders in the Peterson family. Yet also, all the great aunts and uncles either died suddenly at 72 or lived into their late 90s, with two or three centenarians. They grew up on a farm and spent their lives eating flour and lard. Maybe I need to work pastries back into my diet. If only I didn't have trouble swallowing bready substances…

Inflammation Update

Thursday, May 19th, 2016 12:40 am
flwyd: (intense aztec drummer DNC 2008)
As previously mentioned, I started the year with an autoimmune attack on my eye. This occurred after a month of over-extension: after a long day at work, I'd come home and spend a bunch of energy planning a trip to Australia and New Zealand, then not get a lot of sleep before doing it all again. The first sign of autoimmune inflammation, though I didn't realize it at the time, was soreness in the arch of my right foot. I chalked it up to old orthotics and added new boot inserts to the trip shopping list. I'd also been using a standing desk at work for two months in an attempt to reduce sitting-induced back pain and see if reduced slouching helped my esophagus's acid problem.

My eye recovered fully and my vision is back to 20/15; the only sign of the attack is a small "battle scar" blip on the iris. The only autoimmune blood test that came back positive was HLA-B27. This wasn't too surprising, since it's linked to ankylosing spondylitis, a condition which led to my uncle's fused spine. This antigen marker led to a referral from the eye surgeon to a rheumatologist.

After getting help from my parents to figure out all the causes of death in my family history, the first rheumatology appointment resulted in a diagnosis of psoriatic arthritis (a relative of ankylosing spondylitis), a prescription for meloxicam as needed, an NSAID (similar family ibuprofen, but with longer duration and more powerful per milligram), and instruction to get x-rays of my spine and pelvis. The x-rays showed signs of calcification of my spine and SI joint, so I had another rheumatologist appointment to talk about chronic disease management and treatment options. Basically, my immune system works too well, so it attacks various parts of my body like joints, skin around my scalp, and occasionally my eye. Biologics are the big-gun drugs for autoimmune diseases, which are expensive and increase the likelihood of serious infection. They sound pretty scary, so I decided to focus on "diet and lifestyle" and NSAIDs for a while to see how far I can get with adjusting my environment and routine.

So yeah, that was January. I averaged a health-care office visit every other day, but by the end of the month I wasn't feeling too bad. In February we spent two weeks in Maui, where I was able to do low-impact activities like snorkeling, scuba diving, hiking, mini golfing, and hanging out on the beach. Eating was still a bit of a challenge: the acid reflux and esophageal challenges in swallowing that were my main health problem in 2015 persisted, so there were a lot of rather slow meals. Then, half way through the trip and the day after a hike on the wet side of the island, I started to feel a bit sick, maybe a mild viral or bacterial infection. That night I had a crazy intense acid reflux experience, preventing me from sleeping all night. Around 3:30 I took a famotidine (Pepcid) pill that I'd been prescribed but hadn't really used. Two and a half hours later, we got on the ferry to Moloka'i. With only a few thousand residents, no stoplights, and a laid-back culture, Moloka'i is a great place to feel crappy. I started feeling better, and acid issues started to fade. Remarkably, I've had hardly any acid reflux in the three months since returning, though I've still got some swallowing challenges.

My mom gave me a copy of The Anti-Inflammation Zone by Barry Sears, the creator of the Zone diet. The book explained, to a moderate degree of satisfaction, how pro- and anti-inflammatory responses work (arachidonic acid versus eicosanoids and other long Latin names). Sears's primary recommendations, repeated over and over, are the Zone diet and high-dose, high-purity fish oil for EPA and DHA. I found his discussions of the diet kind of annoying, particularly since his extensive biography wasn't footnoted from the text, so I couldn't tell what was part of the diet plan because of sound science and what was present arbitrarily. The fish oil recommendation, on the other hand, seems to have solid science behind it. I've been taking fish oil for a couple months, currently around 2 teaspoons per day (~3 grams of ω-3 fats), and eating salmon and herring whenever I get the chance. The EPA doesn't seem to have done much for my foot/ankle/SI joint inflammation, but my psoriasis symptoms seem to have improved, perhaps from the DHA. During the winter I was drinking a lot of homemade chai, with the goal of increased intake of the anti-inflammatory ginger and turmeric. I even brewed a tamarind turmeric galangal brown ale. Keeping a crock pot of warm chai has been less appealing as the weather has gotten warmer.

I've been back and forth on the meloxicam. The side effects so far haven't been too bad&endash;mostly mild dehydration from my kidneys working hard–but stomach issues and intestinal bleeding are possible. When I take it for several days, my ankle/foot pain is a lot less, and I think it may help my esophageal troubles. After taking it all last week and experiencing very few choking incidents, I stopped taking it over the weekend. The last two days have featured moderately increased foot pain and some distressingly intense swallowing problems (leading to unpleasant regurgitation), so I'm taking the drug again in the hope that my eating challenge can be addressed by reducing inflammation.

Emotionally and intellectually, I've been adjusting to a lifestyle focused on eliminating stress, reducing voluntary commitments, and enhancing physical health. My natural tendency is to overcommit and prioritize tasks over sleep, exercise, and hygiene. That's a good recipe for accumulating inflammation, so I'm learning to say "no" and prioritize my own health over being helpful all the time. I've also been riding my bike (yay springtime!) and more regular about stretching on the floor and not sitting still for hours, though I've been in basically the same position in my hammock for the last two and a half hours of blogging. The nice thing about chronic illness is that if I don't do things right today, I can get back on target tomorrow.
flwyd: (spam lite)
My friend Zooko has shared some very personal stories about mental health and diet, tied together with the narrative of his relationship with Aaron Swartz, who the Internet is still mourning. My comment on his second post may be of interest to readers of this journal.

I don't remember if it was my N.D. or the book she gives to new patients who said it, but the biggest insight I've ever heard about diet is "It's essentially impossible to lose weight while you're eating something you're allergic to."

I've learned that food and mood are connected in a way that's far less intuitive to us than food and physical sickness. If we eat a bunch of clams and then throw up the next day, we blame the clams. But if we eat a bunch of bread and then feel mopey the next day, we don't instinctively blame the bread.

When I stopped eating dairy products 20 years ago, I had an immediate (well, over a month) improvement in both mood and focus. I wasn't anything resembling bipolar, but I would often get pretty depressed about things. I attempted suicide by dehydration (a method which allows one to back out at any time). I frequently stayed home from school because I was just feeling "bleh." If one detail of a homework assignment didn't make sense, I might end up lying on the floor for hours crying about it. I'd start all sorts of passive aggressive fights with my brother.

Once milk was out of the picture, I became vastly more productive. I hardly missed any school. I rarely got upset. The pain and suffering in the world didn't make me want to kill myself. I stopped fighting with my brother. I got elected vice president of student council. I don't think my carbohydrate balance changed significantly, then or now. I eat a lot of whole grains and a mild amount of sweets.

My ex had a similar experience when she found out she was allergic to corn. She stopped picking fights about stuff that didn't matter. She was able to focus on reading. She didn't let things like a messy kitchen bother her. She stopped having bowel issues. She didn't have super-painful periods (and stopped taking pain relievers with corn as the inert ingredient). She spent a lot less time being sick in bed. She lost some weight. In recent years she's lost a lot more weight, possibly from cutting wheat from her diet. She still eats plenty of carbs; she's just picky about which.

For a subculture that loves delving deep into complex systems, a lot of us nerds and hackers don't know a lot about our own bodies. We've each got an amazing personalized work of distributed engineering with very limited documentation.

I don't know if Aaron had problems with too many carbs, like Amber. Or if he had problems with dairy, like me. Or if he had problems with wheat, like so many in the Venn diagram of Asperger's Syndrome and Geek Focus. Or if his brain didn't play well with some pervasive modern food additive. Nonetheless, there may be something to the theory that Aaron's gut-brain network was compromised.

Update, the next day: I just finished the thorough and interesting bio of Aaron Swartz in Slate. Near the end, it describes his last twenty-four hours:
Though Stinebrickner-Kauffman was feeling tired, Swartz was in high spirits, and insisted that they go meet some friends at a Lower East Side bar called Spitzer’s Corner. Swartz treated himself to two of his favorite foods: macaroni and cheese and a grilled cheese sandwich. The mac and cheese was mediocre, but Swartz and Stinebrickner-Kauffman agreed that the grilled cheese sandwich was among the best they had ever eaten.

On the morning of Jan. 11, one week after he’d insisted it would be a great year, Swartz woke up despondent—lower than Stinebrickner-Kauffman had ever seen him. "I tried everything to get him up," she says. "I turned on music, I opened the windows, I tickled him." Eventually he got up and got dressed, and Stinebrickner-Kauffman thought he was going to come with her to her office. But instead, Swartz said he was going to stay home and rest. He needed to be alone. "And I asked him why he had gotten dressed," says Stinebrickner-Kauffman. "But he didn’t answer."

Again, I have no idea what Aaron's gastrointestinal situation was like that. But if I had that kind of dramatic mood swing, I'd blame the cheese.
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