One of the things we did on our summer vacation was visit a holistic health practitioner in San Diego. Before you roll your eyes, read my earlier post on Devin’s health issues and realize that these issues remained undiagnosed and persistent (if not worse) throughout the entire year, despite many trips to the hospital. The health system here, which is based on specialist diagnosis of discrete conditions, didn’t seem to be able to address everything that has been going on with them, from abdominal pain to weak knees to headaches and brain fog. We both felt these things were all connected somehow, but getting someone to look at the big picture seemed impossible.
While we were in San Diego, I found out about Dr. Jim of Laurel Acupuncture Clinic from a friend of mine who sees him for neurological issues related to strokes she’s had (she’s younger than I am, too). I made an appointment using his online system (fabulous for neurodivergent people like me who have trouble making phone calls), and we had an initial one-hour consultation based on a couple of extensive (100-item) questionnaires Devin had to fill out. Based on what they said, their answers to his questions, and a couple of quick tests, Dr. Jim recommended some blood tests to confirm if his suspected diagnosis was accurate.
I’ve got to admit, we were both skeptical. I know a number of people with celiac disease, and they always emphasized the digestive impacts, most of which Devin doesn’t experience. They do still have intermittent abdominal pain, but the other symptoms they’ve been experiencing seemed to be just as urgent, if not more so. I hadn’t done a lot of reading about gluten sensitivity or celiac, but Dr. Jim let us know that gluten affects your entire system, and all of the symptoms Devin has been experiencing could be a result. Devin asked him about fibromyalgia, and he said something unsatisfying about not wanting to label their condition (which didn’t make sense, because it seems like gluten sensitivity is a label, too). But Devin agreed to go ahead with the blood tests, one a regular blood panel and the other testing specifically for gluten sensitivity, celiac, and some other autoimmune conditions.
In the end, aside from some minor issues with vitamin D (which many people in Mongolia probably have, given the climate) and B6, which we can address with supplements, the diagnosis was non-celiac gluten sensitivity. There were also some indications of a nascent autoimmune condition (not celiac), which we’ll deal with if the time comes, so we’re not thinking about it now, though we can do further testing if going gluten free doesn’t help as much as Dr. Jim thinks it should.
We got the diagnosis a few days before we were leaving for Mongolia, so we decided to go cold-turkey off gluten after we got home. Of course, this changed a bit once we got home and I went through our kitchen cabinets, sorting the gluten and non-gluten products we already had. The gluten-free items fit in a shopping bag, while the items containing wheat, barley, or rye filled the kitchen tabletop. Devin looked at them and decided on one more week of “glutinous” eating.
The extra week of gluten would also give me a chance to find out where to get gluten-free products in Ulaanbaatar. I’d seen some before, but I hadn’t paid much attention since we didn’t need them at the time, but now it’s a bit more urgent. I’m going to have to make all their meals (they can no longer forage among the sometimes unsatisfying offerings of their school cafeteria for snacks and lunch). I’m the most concerned about figuring out their lunches, to be honest. I’d made their lunch nearly every day for six years, and it was always a bit challenging because of their eating preferences and sensory issues (part and parcel of autism, it turns out). Having to go back to that for two more years, without the gluten, seems daunting. They’re probably going to eat a lot of leftovers for lunch. My lunches at the university (once my department secretary thought to ask the kitchen to make vegetarian food for me) are mostly gluten free, so I’m all set, fortunately.
So, some of our back-to-Mongolia shopping has been looking for sources of gluten free pasta, flour, and other products. I’m realizing, too, that while we couldn’t eat a lot of Mongolian food because the cuisine is so focused on meat (and no, Mongolian barbecue isn’t actually Mongolian), the few items that Devin enjoyed, especially vegan khuushuur and buuz (dumplings), are no longer an option, because of the dough. When we travel in Mongolia, we’re going to have to bring our own food. This adds a layer of complexity to our lives here that I really hadn’t counted on. But we’ll figure it out.
In the meanwhile, we’ve done a lot of talking about non-celiac gluten sensitivity and how Devin feels about the diagnosis. We both experienced a lot of disbelief, initially, but the more we learn about it, the more it makes sense. Devin is optimistic about the diagnosis and sees it as a science experiment. They’re genuinely curious to see what impact going gluten-free will have on their overall health. They have a great attitude towards the news, given that their absolute favorite foods (mac and cheese, spaghetti, pizza) are going to be off-limits unless we find gluten-free options. Also, as they put it, “Now I’m going to be the person who has to bring their own food everywhere.”
Some of the reading we’ve been doing points to a link between gluten sensitivity or celiac disease and fibromyalgia, as well as ADHD, autism, and other neurodivergence. So that’s been an interesting discovery. It points to something I hope many of us realize based on our lived experience that western medicine doesn’t take into account very well: Our bodies are systems and everything is connected. So we’re both very curious to see what impact going gluten free has on our ADHD, as well as Devin’s chronic pain and fatigue.
I will certainly be writing more about this, but for now, I’ll just say we’re taking it one step at a time. I’ve done a lot of reading about nutrition generally over the years, and have read plenty about gluten, though never before with an eye to going gluten free. As one of my friends put it, being both gluten-free and vegetarian is “next level,” and I’m glad we got the news over the summer when I wasn’t teaching, or it would have been completely overwhelming. At least now I have a couple of weeks of relatively unscheduled time to figure out our new diet. And yes, I’m going gluten free myself, for simplicity’s sake and because it will probably do me good as well. I haven’t experienced any of the physical health issues Devin has, but I will be curious to see if it mitigates my ADHD.
One thing I’ve noticed already is the sheer number of people I know who are gluten free or have kids who are, and how they immediately want to help and offer advice. It’s a new community to navigate, and it’s heartening how many people have been supportive, but some of the advice has also made me laugh, because so far it has been coming from American friends (though some of them have lived overseas). It makes me realize yet again how much we tend to assume the whole world is like where we live; people are recommending brands and foods that simply aren’t available in Mongolia. We didn’t have much room in our luggage at the end of our trip to the US, so we brought exactly two boxes of gluten free mac and cheese in Ziploc bags. We may figure out how to have more shipped (though I seem to remember Good Price Market having gluten free Annie’s, but that may be wishful thinking). I was also able to cram in a small bag of Pamela’s gluten free pancake mix, which has been our favorite for years.
In the meanwhile, it’ll just be easier to figure out what’s available here and what works with Devin’s food preferences and sensory issues. I’ve also realized that most of what I cook is already gluten free, which is a huge advantage, and it’s all food Devin loves. I cook a lot of vegan chili (without the fake meat), lentils, and tofu, all of which I serve with rice. Scrambled eggs are also a favorite. So our diet won’t actually change a huge amount. And I’ve managed to find gluten free pasta and spaghetti already, as well as almond flour and rice noodles. And today we’re going to a store that tends to have several Bob’s Red Mill products, including gluten free flours. I feel like we’ll manage. We just might not be able to eat out (not that we did a lot of that, anyway), and I will have to figure out how to make more from scratch than I already do. It simply adds more to my cooking repertoire.
Quick addition to what I thought was a finished post: Yesterday we went to Good Price Market, which is an expensive store that takes after Whole Foods a bit, down to a similar logo. It sells a lot of imported products from Germany, the US, and Korea, and in the past I had seen a lot of Bob’s Red Mill products there. This time there were none, but we did find several kinds of gluten free pastas and spaghetti, a gluten-free flour made in Mongolia, and gluten free cookies, as well as millet, brown rice, and oat flours. So I sense a lot of baking coming. We now have gluten free products from seven different countries: Germany, Mongolia, the Netherlands, Russia, Spain, Thailand, and the USA. Alas, there was no gluten free mac and cheese (but they did have two kinds of Annie’s and Kraft, for anyone who is looking).
As I suspected, the trick is going to be finding out which stores sell what, and stocking up on whatever I can, because one of the things I learned quickly about shopping in Mongolia is that a store may carry a product for several months and then never have it again. They will get a shipment of something, sell it out, and never restock it. This is why I have five 2-kg bags of Nood dog kibble, a brand from Thailand that has been popular here for a while, and that our dogs love. It may disappear, and we’ll be left with kibble that they don’t really like. Food shopping in Mongolia is fun, but it can also be frustrating when things you get used to having just disappear for good and often aren’t replaced by anything comparable. But that just makes it all the more interesting.