Two stories about my journey with autoimmune diets, completely opposite and both true
I love this. Yes, I have tried all the health diets. Gone on and off them and also tried to find some middle ground. I think beating ourselves up for eating pizza (or anything we know we "shouldn't" eat) is sometimes as harmful as eating the things that make us have an adverse reaction. I've also found that when I over do it, my symptoms get worse. Like, if I constantly eat dairy or gluten, my symptoms worsen over time until it becomes unbearable. But when I keep those things at bay for the most part, some bread or cheese every once in a while doesn't break me. I think for sure the answer lies in moderation, being kind to ourselves, and recognizing we can't control our food and environment perfectly.
I thoroughly enjoyed this post.
I tried changing the food I eat but ultimately whatever the books say we need to figure out what our individual body wants. In the end I stuck with the Med diet which is what I have eaten all my life. I love the variety of all food groups. I no worse off than when I was on stricter diet eliminating whole food groups. I cook my own food so I know what goes into the meal. When I have a craving for chips or biscuits I make sure they have good ingredients. Yes, there is some sugar but that is OK too. There is a balance to everything. I did find my body can't tolerate milk. I use Oat milk but funnily enough I can have some cream (in my afternoon tea, for instance). I have cut back on yogurt but I'm totally find with cheese. When it comes to bread I have tried a lot of different kinds....it is all about the flour. I buy the breads made a the local bakery versus commercial breads. They use different flour. I buy pasta from Italy because not all flour is equal. Italian pasta has a lower gliycemic index so I don't get bloated or feel any gut pain. Each body needs certain foods for comfort and needs to avoid others. We need to be vigilant to how we react to everything we ingest to be able to make better choices.
You’re a brave lady, Rae, writing about this and inviting in comments. Fraught indeed.
You hit the nail on the head: “But all of this still haunts me, every single day, and I suspect that it’s the kind of thing you can never unsee.” YES SAME. At one point I was down to eating basically poultry, frozen vegetables, rice, oats, blueberries, tahini, and honey because my practitioner kept cutting things out. Truly, that was it. And I was *deeply* unwell. All of the things practitioner after practitioner told me I absolutely cannot eat ever (gluten, dairy…) I now do far better when I have them. This wasn’t always the case. And—I’m really glad to shed light on this—the years of diets, symptoms, being told what to eat, etc have really stolen away my enjoyment of food, cooking and eating. I’m clawing my way back. I’m still quite cautious but now it’s more accurately cautious.
My body is definitely "ground zero" for trying to normalize myself. I grew up in a blame-centric health-obsessed family (who would "sneak in" McDonalds in shame while yelling at us kids for not "cheerfully eating" the NASTY kid vitamins). Then in my 20s, I continued yo-yo dieting until I realized that no matter which jean size I wore, I was still agitated and uncomfortable in my own skin. Intuitive eating had a lot of revelatory moments for me, and since it generally was rooted in self-compassion and looking at the whole person, I'd say it was a net positive for me. Although, as my body shape continued changing, I had to fight a different battle (being seen for me in the doctor's office, especially the OB! and not merely as a number on the scale). No matter how I have treated eating and health, the different "health camps" have required me to exclude the other. They really are warring kingdoms some days, ready to expel you for lacking purity of intention and effort. I could write a book ... Oh wait...
Thank you, Rae, for reaching out and grabbing this third rail! I can't resist answering your question posts!
I've had some health fun and games. Cardiovascular disease is my family's signature way of death. My father and brother both succumbed to heart attacks, the latter at 48, and my mother of vascular dementia. Given that it's a disease where lifestyle modification is clearly of benefit, and my scientific background, you would think I would know better than to be a two-pack-a-day couch potato until 40. I did eventually get my shit together. I quit smoking, started working out, and improved my diet a little.
I ramped it up a lot after my brother passed at 48 in 2001. I was 50 then. Ten years later I started getting sloppy and put on some weight. I wound up spending 10 days in the ICU following a superior mesenteric artery dissection. Near death experiences are a great wakeup call!
Nevertheless, it was my wife's GI issues that pushed us to vegan. I've spent a lot of time inputting all my food in Cronometer, assessing each micronutrient and so on. It was definitely a "special interest". A lifetime around data has helped me have a healthy relationship to it, seeing these numbers as a means to an end, the end being a sustainable diet of abundance, not deprivation.
And that's where I feel I am. The foods that are beneficial to cardiovascular health are also beneficial for brain health and resistance to cancer. They're also better for the environment, animals, and the local economy. But I'm lucky. Not many are fortunate enough to have the combination of education, interest, environment, and means. I'm grateful.
Thank you for this ❤️
After ending up spending a weekend in the fetal position unable to move because my guts hated me, I went to a traditional doctor and was simply told I had IBS and was told to take a 2-week course of antacids. This was...2010 I think?
So commenced a loooong period of learning about gut health, the microbiome, etc and trying different things but nothing really made a change. I had a stomachache for a decade plus that just felt mysterious and impossible to overcome. Tried eliminating gluten, doing paleo, almost a Whole30 approach (without the sugar discipline).
Finally around 2020 I learned about FODMAPs and decided to give a low-FODMAP diet a try. It definitely made a shift. So I can’t deny that it is probably the path. And I stopped drinking (liquid gluten is still gluten, Elise Victoria!) and I know that was a huge aspect of my constant discomfort.
This comment is really rambling sorry I have a million thoughts and they’re much too hard to organize before coffee.
Anyways, low-FODMAP is helpful, great. But I had to eliminate most of my favorite vegetables. Gluten is also high FODMAP, along with beans, dairy, lots of fruits, and most alternative milks. No onion, no garlic (and growing up I was taught that every meal starts with those). So honestly I am so bored by food and disenchanted. And still having too much sugar. So not disciplined enough to do a proper elimination and test adding things back in, not careless enough to eat everything I want to, and it just feels like I’ve been in food purgatory for the past several years.
Anyways, thanks for your post. It’s nice to feel seen and understood.
Oof. Nodding my head through most of this. Gratefully, my mother, aunt, and grandmother all were hypothyroid, so my doctors knew to watch my thyroid and we found it early. The autoimmune part took seeing a Naturopath who was the wife of a colleague of my husbands just starting her practice. I ended up going on the AIP diet for quite some time. Combined with the anxiety I was struggling with at the time I was convinced that the not allowed foods were bad and it took me a very long time to go off that diet. Did it heal me? Maybe some. I think it cleaned up some gut issues I was ignoring. I stayed off gluten, however, until the pandemic when fear of leaving the house had me eating anything around the house. Persistent dizziness, various doctors and MRIs led me to pull gluten out again and lo and behold, no more dizziness. Apparently gluten can have neurological issues. I didn't know. Now I wonder if my migraines in the past were gluten related. Anyway, more recently we did some food allergy testing and I attempted to remove a few things to improve my antibody numbers. I am aware enough to know when food restriction is just not healthy for me psychologically, so I gave up after a few weeks. There is SO much around food. It is so psychological, on top of all of the cultural messages. Right now, while I know all of the ways that I could eat healthier, I choose a route that's more relaxed about food because I know how easily I can slip into a more disordered relationship with food. I could go on, lol.
Thank you - this really resonates with me. Currently on medi diet (for PCOS and also navigating own fertility journey), there is a whole other level of changing things up for anyone who has gone through ivf. I definitely see food as medicine and have felt the benefit of modifying (as my nutritionist said to me, don’t take away but add more nutrient dense foods to the lake!) Still on the fertility train but at least am much more in tune with my body, and for me, it’s now about my long term health.
Can we also have a conversation about how once you get pregnant, there’s a sense that if your kid has ANY health problems at all it’s because you ate the wrong thing? Or didn’t feed them the right way? Asthma, allergies, and eczema are like the top 3 ailments of pediatric age group but there are so many signals that it is every individual mom’s fault.
I’ve tried all the diets, including elimination/food allergy/anti-inflammation/candida diets under the supervision of functional medicine docs. Despite symptoms of fatigue and brain fog, I was never really doing them for better health, I was really always searching for the weight loss holy grail. I never saw a difference in how I felt, and in the case of strict elimination diets (I once went six months without dairy, gluten, sugar, alcohol, nightshades), I never saw weight loss. Cutting out gluten did clear up my adult acne, but I’ve had gluten back in my life now for many years, and my acne never came back.
I am one of those people naturally living in a bigger body, and it’s taken 40-something years to realize it’s not something I can diet or over exercise my way out of. I quit diets for good a year ago after my second child with anorexia relapsed. Since then I’ve worked to reframe health and fitness beyond appearance, and it’s been incredibly liberating. We all have our own paths, and elimination diets can be life-saving for people with certain illnesses. For me, I’m finding a more balanced way of eating and living now.
I was once recommended to go on the FODMAP diet, but I wasn't well set-up to do it. I just paid loads of attention to how my body reacted after everything I ate, and realized that generally, my IBS was triggered by sugar and greasy foods. Once I stopped eating those specifically, I found I could eat greasy foods again, and even some sugar (though I'm less tolerant of corn syrup than real sugar). It's mainly just large quantities of sugar that will upset the balance and get me out of whack. So if someone offers me a donut, I might cut it in half if I know I'm on a pretty even keel. If I'm not so in balance, I'd pass it up.
However, I did a deep dive into UPF (ultra processed food) recently, and have grown even more aware of how different foods affect me. I've lost my taste for foods stuffed full of "flavors," emulsifiers, fluffers, etc. I'm so aware of how bad it feels in my gut that I don't enjoy eating it anymore. Thank you, Chris van Tulleken. I'm sure it's better for my health, but it's also sometimes exhausting finding/making good food.
There was a really interesting podcast on Peter Attia’s Drive 277 ‒ Food allergies: causes, prevention, and treatment with immunotherapy | Kari Nadeau, M.D., Ph.D. She covered sensitivities and allergies and I thought it was interesting that the amount of exposure to something can impact your reaction. If you get enough exposure to something, it can trigger your immune system. So there is a lot of variability. So if you’re Gluten sensitive, and just keep consuming even at low levels, eventually the inflammation triggers your immune system to come and help address the issue. That helped me understand why, while I avoid gluten, a little soy sauce on sushi doesn’t seem to make a difference. She also mentioned that it’s non natural additives like emulsifiers, that can cause a lot of sensitivity issues.
I had hashi and my thyroid is totally burned out as a result. It was discovered while I was pregnant at 40. I was probably wheat sensitive my entire life. I had all sorts of digestive issues and being pregnant was the best I’d felt in that regard, probably due to the tamping down of my immune system. Apparently there is now a connection to hashi and preeclampsia, which I also had. So I wished I knew more earlier but my experience confirms everything you’ve said. I’m gluten free and I use a cgm, so I avoid most carbs and processed foods. Glucose monitoring is an easier way to avoid a lot of bad things, imo.
Wow, I can relate to most of this. You see, I'm currently crossing my fingers and toes - hoping that I am not experiencing another flare-up of diverticulitis after battling the flu or a stomach virus last week. It's not my fault that this is happening per se but, what did I do upon finally feeling better last week from the flu??? I ate a huge, sugary, processed chocolate mint bar and two granola bars. Later that day, I started feeling really gross, heavy and headache-y and, a few days later, the signs of diverticulitis are here. Sigh...
Sleepy and can't put a lot of smart words together for a response here but so much of all of this was compelling. <3
OK, so I developed painful sacral/hip pain at 16 a few months after a bout of osteomyelitis in my left foot ( following a skin rub abrasion turning into an ulcer just above my ankle) and following a fall onto my left hip whilst using a stick to walk with after the month long plaster cast came off my foot following removal of dead bone due to the osteomyelitis.
7 years followed during which visits to orthopaedic Specialists, X-Rays, Physiotherapy, all fail to find a diagnosis or resolve the pain.
I cannot run ( at all), dance, walk up stairs without hip pain in every step.
I use to cross country run, ride horses... no longer.
Somehow I get a referral to an Ear, Nose, Throat Specialist for an Allergy Test. Positive results for Nightshades, onions, wheat, dairy ( except butter), egg yolk, oranges, chocolate/cacoa, coffee, pine needles even a little to “ horses” that I’d spent frequent time with over previous 10 years.
I’m told to avoid these things. I go home to my shared apartment & go through the pantry contents.
The only thing in there I can eat is rice.
Plus fresh fruit/veges ( except nightshades & onions) & no meats are on the “avoid list”.
So, no more bacon & eggs, no Italian food ( tomatoes/wheat pasta etc), black tea only, etc etc.
This is 1975; there are no alternative grain carbs ( corn, rice, buckwheat etc) products, breads/pasta etc) available. I try tinned ( approved) goats milk but cannot handle its grassy flavour in dishes or drinks ( like tea) that I’d usually put milk into. Years latter I find a fresh goat milk dairy nearby and their unpasteurised milk , icecreams, hard cheeses are fantastic! 🙂
Anyway, I stick to the restricted diet. Drink dandelion or chicory/beet coffee, mashed turnip not potato, discover flavourless rice cakes/crackers , find one recipe book that teaches me to make oat & rice based biscuits etc. It’s a bit of a lifesaver because I’m fanging for carbs/breads. Heavy cornbred & go easy on the oats because I know oatmeal porridge when a kid, would cause me to break out in hives.
6 weeks on this “diet”, and all pain is gone. I can actually run on the grassy playing field opposite our home. !!! WOW!!
However I can’t maintain the diet as I shortly after move to a “ live in” job in a remote area in which meals are provided and alternatives ( few as are possible) are not available. Symptoms return. I battle on.
3 years latter (7 after pain started), in pain and frustration I visit a major city teaching hospital’s GP Clinic. Very quickly I see: X-Ray, Orthopaedic, Neurological, Dentistry, Specialists.
After an excruciating EMG Test the Neurologist says I have some minor damage to muscle fibres in one leg but not enough to be creating my symptoms ( which now include massive, incapacitating muscle spasms in my back/diaphragm).
He makes a tentative “ diagnosis “ outside his Specialty & refers me to “the Rheumatic Clinic”. 😳
That Specialist takes blood. A “ New Test” comes back positive for a protein indicative of the Condition Ankylosing Spondylitis! Painkillers ( Aspirin ) & exercises to maintain mobility are prescribed. Diet? Nope, everything I read about possible remedies, phoo phoo anecdotal advice from other sufferers about “ avoiding Nightshades, dairy, wheat.....”.
So why was I pain free the 3 years before?
I never took the medication route except if suffering spasms ( or associated vision threatening Iritis), never for more than a few days. I went back to horse riding 10 years later when pain lessened in my hip. Soft tissue & Chiropractic bodywork helped. I never got back to running though.
Yes, I think the knowledge around diet/health relationship has come a long way in the last 40 years.
Yep, yep, and yep! The last paragraph in particular really resonated with me and is intricately related to a story I wrote recently called, "Raising Healthy Kids in Our Toxic Culture is Like Swimming Upstream." I'm relatively intentional about what I buy at the grocery store, but I still feel like my kids eat like shit half the time because sugar, in particular, just seems to seep in through the nooks and crannies of our home. Raising active children who eat well and aren't addicted to screens is a constant battle against our cultural defaults. And because everything that's bad for you is so prevalent, trying to take control and do better requires herculean effort and may entail social isolation, both of which won't benefit your mental health. It feels like a constant double bind.