It was early last year (2018). I don’t remember the date exactly, and can’t find it on my calendar, which is really annoying for some reason. It was my regular quarterly appointment with my doc. I’d been stuck in a sort of groundhogs day over the previous year or so, not getting worse but not getting better. I’d recently started to see a *slight* improvement in how I felt, so rather than keep doing what I was doing, I decided to cut back on the amount of meat in my diet.
I’d only been eating meat again for a couple of years, after being vegetarian for well over a decade. Meat got reintroduced not because I decided I couldn’t live without cheeseburgers, but because I started having trouble maintaining iron levels. A dietitian I was working with at the time thought I would see more progress with food and supplementation, rather than just throwing some pills at it. So I gingerly began eating meat again, figuring I’d go back to being vegetarian when things normalized. So when I started feeling better in late 2017, instead of realizing this was likely due to my having left my job at the end of June that year, I decided it was a good time to start cutting back on meat.
Which means that when I walked into my doc’s office that day in early 2018, before I even sat down, she said to me “what’d you do?” And not in a good way. She told me some of my markers were off, worse than three months prior and she wanted to know what I’d changed. I reluctantly told her I’d cut back to having meat once/day, to which she replied “you can’t do that!”. She explained that my body might never tolerate being vegetarian again, and that if it was something that was really important to me, I’d likely be sacrificing some of my recovery. We moved on to other topics, with more conversation about why things weren’t improving, just like every other appointment. It was a reminder to me that food would play an important part in my recovery, but I didn’t yet have any idea of how big of a role it would end up playing.
Right before I started working with Claire (my dietitian) in September, I coincidentally had another quarterly appointment. I didn’t get to see my physician this time as she was on maternity leave, but I met with the nurse practitioner. All of the providers in my doc’s practice go through extensive training in functional medicine, and even though my doc was on leave, she still kept an eye on all of her patients. So the nurse practitioner knew of my story and where I was at in my recovery. I told nurse practitioner that I was embarking upon some significant dietary changes, and she was incredibly supportive. The paleo diet, and a more restrictive version of it called the autoimmune protocol, is best practice for addressing autoimmunity in the functional medicine community. So my working with a Whole30 coach was right in line with recommendations supported by my physician. While we’d discussed diet, my doc hadn’t come right out and said that NEEDED to change my diet. But I’d done enough reading and had enough understanding about where I was in my own journey to know that diet was the next step. It was the only health behavior I hadn’t touched. The best part about the timing is that I’d have blood work from right before I made any changes, and blood work again three months into the program. At this point, I still doubted my ability to follow-through as I’d made countless attempts to change my diet over the last couple of years and got myself nowhere.
I’ve written about my experience through the first two-thirds of Claire’s program, so won’t rehash that here. The last month didn’t bring anything too exciting, beyond the reintroduction of a few foods and several more pounds lost. I learned that I tolerated small amounts of cheese, enjoyed some amazing gluten-free sourdough bread from Bread SRSLY, and successfully reintroduced Picky Bars. Most, but not all, of my digestive issues were resolved, and I lost 13 lbs. The weight loss puts me exactly halfway between my starting point in the program and my former training (running) weight. My former weight isn’t the goal, but it’s a good benchmark of a time when I was much healthier and fit. Other “wins” included: increased self-efficacy in taking care of myself, complete elimination of cravings for foods I shouldn’t be eating, resolution of the brain fog that’s followed me around for the last three+ years, no more colds or stomach bugs which were so prevalent the last few years, and running is much more enjoyable. The big test would come at my doc appointment scheduled for early January, which required a blood draw on Christmas Eve. I was so anxious to see if my dietary overhaul would show up in my blood work, and if we’d finally see some resolution of the persistently high (dangerously high) inflammation levels.
So when I walked into my doc’s office on Wednesday, January 9, I was cautiously optimistic. I told myself that even if my blood work hadn’t improved, that I still had so many wins from the last three months. In addition, I had a very bizarre occurrence of hives in early November that I hoped she could shed light on, as my allergist was no help beyond testing me for an almond allergy (eating a higher-than-normal quantity of almonds seemed to be the trigger, but the allergist determined it was nothing more than a coincidence). And I’d also had some eczema on my face this past spring that I still didn’t know the cause of. I really felt this was all connected somehow. The medical office assistant walked me back to the office, and again before I even sat down my doc exclaims “what did you do?!”, but this time with a smile on her face. I didn’t get a chance to respond before she exclaimed “you look so healthy!”. I just grinned. I sat down and she walked through my lab results. The first thing she pointed to was that inflammation marker. For the first time in several years, it dropped, and dropped significantly. My HS CRP has been routinely in the 8-9 range, way too high, but this quarter it dropped to 2.0. That is still in the moderate category, but a significant step in the right direction, especially considering the improvement in just three months time. The reduction in inflammation is also what allowed me to finally lose weight. Everything else appeared to be normalizing, including my iron levels, which have been slowly climbing since that fateful appointment earlier last year led me to add more meat to my diet.
My doc and I spent quite a bit of time talking about the dietary changes, and she was happy to hear I was working with a coach/dietitian. I mentioned the hives in November, and how I was eating more almonds than usual that week, and she immediately brought up histamine intolerance and mast cell activation. Coincidentally, I read about mast cell activation syndrome recently, so her mentioning that phrase scared me a bit. But as she explained more about histamine intolerance, it made a ton of sense. And totally explained the eczema in the spring, along with the hives in November. We nerded out a bit while she explained the biology behind how all of this stuff is related, and she added a few more supplements to my regimen. While it seems counterintuitive to think that an appointment that ended with more dietary restrictions and more supplements was actually the best appointment I’ve had in three years, that is absolutely the case. My addressing the dietary sources of inflammation allows us to dig deeper and get to the root cause of what’s going on, and it also revealed that diet was a HUGE root case in-and-of itself.
I did some quick research on my own when I got home Wednesday evening, just to see what this low histamine diet was all about. I immediately noticed that many foods I eat regularly are either high in histamine or histamine liberators. The upside to this is that there was the potential for substantial improvement (which includes never again being woken up in the middle of the night by hives, as I was for five nights in a row in November), the downside is that I’d be removing some staples. But the success of the last three months helped me get over any feelings of scarcity pretty quickly. If I feel this good already, how much more of my health and well-being can I recover by taking this next step? Since we’d just returned from vacation on Monday evening, I needed to do some cooking anyway, so this was actually a perfect time to start walking down this road. Armed with this new information, Thursday evening’s grocery list looked a bit different than normal. Gone were the avocados, tomatoes, strawberries, fermented veggies, lemons, bananas, spinach, nuts (which I’d already been avoiding for the most part since November anyway, even though my allergist told me I was fine to eat them), chocolate, collagen peptides, and cheese. Also gone was my beloved sourdough bread. Some of these foods I wasn’t eating much of yet, but others like the collagen peptides in my coffee, avocados, fermented veggies, tomatoes, strawberries, bananas and lemons, I used frequently. And because we’d just returned from vacation, where I enjoyed more than a few treats that aren’t normally part of my diet (which I thoroughly enjoyed without any feelings of guilt or shame – REVOLUTIONARY), I choose recipes from the autoimmune protocol in hopes of more quickly reducing the increased levels of inflammation that I’m certain are present, unrelated to this histamine business.
In just a couple of days, I’ve noticed a significant change in my allergies. I normally take Allegra and Benadryl, even this time of year in the midwest when everything is dead. And even with those medications and a sinus rinse, I still have sinus and nasal congestion all day, every day. Within 24-hours of walking towards a low-histamine diet, I saw substantial improvement in my allergy symptoms. I’ve had bad seasonal allergies since I was a teenager, allergies that have only gotten worse as I’ve gotten older. I never considered improvement in them to be a possibility. I’ve had allergy shots, but because I’m allergic to so many things, they didn’t help much beyond allowing me to be in a room with a cat without wanting to claw my eyes out. So not only will these new dietary modifications likely ensure I won’t ever wake up in the middle of the night with a terrible case of hives, or get eczema on my face after eating a burrito, but they’re already making my day-to-day life more pleasant. It took well over a month this fall for me to see significant improvements in my gut health, three months for me to lose 13 lbs, but these improvements were comparatively immediate, and I haven’t even started the new supplements yet (they’re being shipped), or talked with my dietitian to get her insight on next steps (that happens Monday afternoon). To say I’m encouraged is an understatement.
A few months ago, before working with Claire and doing the hard work of straightening out my head as related to diet and getting out of my own way with regards to my recovery, I think an appointment like Wednesday’s would have left me feeling defeated. As for all of the progress and wonderful improvement in my blood work, I still walked out of there with more supplements to take – not fewer as I hoped, and more dietary restrictions – which came on the heels of the successful reintroduction of some foods I really enjoy. But rather than view this as a set-back, or a recalibration of what I believed to be tremendous progress, I saw it was one more step forward in this journey back to health. More dietary restrictions and more supplements is not a step back, it’s true progress, as we’re uncovering the real issues at the heart of my poor health the last four years. If I don’t do the hard work of the last three months, and cover all of that ground, these remain questions without answers. And there’s a good chance I get woken up with a bad case of hives again. And I continue to test the upper limits of how much Benadryl is safe to take before one spouts a third arm or something. I am so excited to have this information, and to know that there is more I can do to help myself get better. I am drunk with progress.
As I’ve looked back over the last few years, something that’s really bothered me is how long it took me to make these changes to my diet. Everything I read told me it was important, my doc told me it was important. In my over-analyzation of it all, I realized that several factors contributed to my figurative feet-dragging. Initially, I was way, way too hung up on what used to work. I was vegetarian for well over a decade, I was an endurance athlete who trained a lot and raced a lot, and incredibly healthy while doing both. Both of those go against convention in the autoimmune community. I got stubborn about what worked for me in the past, instead of realizing that the paradigm had shifted and that what worked for me previously was no longer relevant. Secondly, it’s really hard to made big lifestyle changes when you feel like shit. Overhauling ones diet takes a ton of mental energy, not to mention the physical labor of preparing food. There was a fair amount of time where I didn’t have the mental or physical resources to dedicate to the change. Which super-sucks, because it turns into a chicken-and-egg situation. The very changes that would help the most are out of reach, but the changes need to be made or recovery won’t happen. I think leaving my job allowed for just enough improvement for me to commit the mental and physical resources to the diet change, which ended up facilitating the big improvements I desired. Lastly, I realized I couldn’t do it on my own and sought out help. I knew that my biggest gaps weren’t in knowledge or information, but in changing habits and behaviors, especially since my health still wasn’t great and making the change was going to take a lot of effort. Having a good understanding of the type of help I needed allowed me to find the right person to partner with, and that was Claire. Her program focused way more on the process of the change as opposed to simply sharing a bunch of information about what a person should be doing. And her program was set-up so that the responsibility of doing the work lied completely with the client, which went a long way towards rebuilding my self-efficacy in doing Hard Things.
While I look back and see a lot of things I could have done differently the last several years, the one single thing I’m most proud of is that I didn’t give up, and that I found a health care provider who didn’t give up on me either. This summer, I started to think I might not recover, that this crap was the new normal. Which honestly was depressing as fuck. Signing up to work with Claire really felt like a last-ditch effort. A hail mary. The crazy thing is, it worked. The same relentlessness and tenacity that served me so well in running, and in my career once upon a time, turned out to be the most important characteristic that I carried into this mess. We just got back from Breckenridge where I skied for the first time in a few years. When I was sick, just putting on all of the gear seemed like SO MUCH WORK, not to mention the actual skiing part. But this year I skied, several days even. On two of those days, I skied for a few hours and then went for a run or a hike. At 10,000ft. A few months ago, none of that would have happened. And I came home from that vacation, not in a fatigue hole like normal, but ready to hop back into regular life, which ended up including a big change to my diet. It’s like my world has been in black-and-white for four years, and someone suddenly flipped the color switch. Everything looks so bright and vibrant. And I have hope, so much hope for the future. I still don’t know what role running will play in this new normal, or if I get to race marathons – including Boston, again. I’ve decided it really doesn’t matter. I still love to run, and running 25-30 miles/week while barely half of my old “normal” mileage, feels like a wonderful miracle. The racing question will answer itself in due time. And I can wait.