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The Gluten Experiment

Updated: Jul 22, 2023

If you take a close look at the photo of the lunch we had out last week, you're likely to spot that, despite both of us ordering the same meal, there's a fairly apparent difference. The bread. And no prizes for guessing which of the two is gluten-free.


Since some time in 2018 I've diligently avoided gluten-containing foods. If I'm honest, I knew I had some minor challenges at least with bread, even the lovely spelt, rye, kamut sourdough loaves that Graham was baking with a starter that my sister had given him. One night I woke up around 3.00am with that familiar digestive discomfort, but it paled into total insignificance as my mood plummeted to depths I'd never experienced, despite knowing what depression, albeit mild depression, felt like. This was total emptiness. Nothing had meaning. I tried thinking of the things that I knew I typically looked forward to and although we had such events on the horizon, I felt nothing other than bleakness. I was (and still am) in a wonderful relationship, but at this point, it was at best a fact, something I knew but couldn't feel. I did start to feel fear even if it was strangely blunted. I couldn’t envisage the point of life if this was to persist.


It didn’t persist, in fact it lasted approximately just one hour and as the digestive discomfort subsided, my mood started to re-emerge from that deep pit of nothingness. I didn’t go looking for explanations, I knew it was related to the bread and suspected gluten. Nothing was going to persuade me to carry on eating it.


I had extra support for my hypothesis several weeks later. I was visiting relatives who had prepared the most lovely plant-based dishes for me and my sister, one of which was a salad in a delicious tamari dressing. I say tamari, because that had been a go-to ingredient for some of the dishes that Graham and I prepared for our Raw Food Lunch guests; we always ensured that there were none of the obvious allergens in our food, so we never even considered buying tamari’s big sister, soy sauce. But soy sauce is the go-to for most people and it contains gluten. I can only assume that the presumed gluten-free dressing was in fact made with soy sauce. That night I had a repeat performance of the one described above but without the fear because I knew what it was and I knew it wouldn’t last.


From then on, I was much more successful in my attempts to avoid all foods containing that protein, or perhaps I should say proteins, plural, as gluten isn’t one single substance. I stopped eating bread altogether (apart from the occasional raw mini loaves we made in our dehydrator with no grains). And for the record, this wasn’t difficult, at least not for me. By 2019 we were both immersed in the excellent Mastering Raw Food Nutrition Educator course that we’d signed up for and I was still recovering from Chronic Fatigue so the emphasis on fresh fruits and vegetables suited me well and I was enjoying it!


By the time we moved to Germany in 2020, I had recovered and was well enough to open up my plant-based diet to a wider range of foods. Additionally, I had a comprehensive understanding of the differences between whole foods, processed foods and ultra-processed foods (including the impacts of various cooking methods), making it easier to make appropriate choices.


If you’ve never been to Germany, you may assume it’s the land of sausages and that’s a fair assumption, or at least it has been, but meat consumption has reduced quite significantly in Germany with children, particularly here in Berlin, seemingly leading the way as almost half of them rarely or never eat meat! I would describe Germany as the land of bread! Bread is such an important staple here that bakeries are open on Sundays and the queues outside are often long. The variety of freshly baked bread is spectacular. Germany does bread with passion and expertise. So I admit to experiencing a twinge of regret about knowing I would probably never enjoy the wonderful loaves and Brötchen (the bread rolls) that I used to eat when I lived here before.


But I soon found out I'd done Germany a disservice. Their pride and expertise in respect of bread-making sometimes extends to gluten-free breads. Or maybe I’m just benefitting from being in the capital. There’s a wonderful account on WDR, a German TV channel about how one of my absolute favourites, AERA bread came about. This young woman is impressive. Regrettably, the clip is only in German, but you do get to see the bread!


So, I am eating bread again and finding it's suiting me well. I'm referring to artisanal gluten-free bread made with flours such as teff, buckwheat, brown millet, wholegrain rice and we even found bread made from quinoa and amaranth flour in a standard bakery. For someone who doesn't have coeliac disease the newly appearing bread options with "non-gluten-containing ingredients" are fine.


On the subject of coeliac disease, I recently met someone who used to have it. She recovered from it. Her doctor gave her the all-clear! I love stories like this and it set me off wondering if my sensitivity might by now be a thing of the past. It's not an unreasonable consideration. It's fairly well-documented now that people with Chronic Fatigue generally have an impaired microbiome. I'm confident that mine is no longer as compromised as it possibly was, in fact I hope it's a balanced and thriving community of diverse microbes. Nevertheless, I hadn't got to the point of putting it to the test when I tested it anyway …inadvertently. I ordered a meal which I knew contained orzo. The problem was, I'd completely forgotten what orzo was and even thought it was a spice! In case I'm not the only one: orzo is pasta, the shape and size of rice, more or less. I ate all of it. And that night? Nothing. Great!


My next step would be to try some gluten-containing bread. I chose pumpernickel, a sourdough made with rye flour. This was just last week. And the night time horrors didn't happen on any of the 3 nights that followed.


So why am I still opting to avoid it?


The three nights referred to above were indeed free of torment and I got to witness this in a state of full wakefulness. I didn't sleep at all well which was disappointing as I had been sleeping better. Was there a link? I don't know. My sleep has picked up again since not having the bread, so I can't overlook the possibility. But there's more. Three days after the last piece of pumpernickel, I noticed a resurgence of the fatigue symptoms I'd worked so hard to recover from in 2018/19 (a few of which recurred when I experienced 8 months of post covid breathlessness last year). Again, I'm far from certain of a link. It's hot here at present which might also be a trigger? But it's enough to lead me away from gluten in all its forms. I don't need it. I sprout oat grains, buckwheat, and quinoa. I enjoy wild rice and wholegrain rice. If I want pasta, there are plenty of excellent options including some of the grains just mentioned as well as legumes, pea flour, chickpea flour, lentil flour etc. And I'm not missing out nutritionally.


This merits a clear statement, I believe. Gluten-containing grains do not constitute a food group without which a person is destined to be malnourished. If this assertion is voiced can it please be delivered with the recommendation that plastic-wrapped products from the gluten-free aisle are avoided in favour of whole foods? I often wonder what people with coeliac disease are supposed to do when they hear health professionals state that avoidance of gluten-containing grains will lead to poor health? It's unhelpful, and without being qualified as suggested, it's untrue! It's actually entirely possible, albeit a little more challenging, to eat an excellent diet completely free of grains after all, didn't our ancestors do just that? If they hadn't survived, we wouldn't be here.


So, my objective now, as I continue to remain gluten-free, is to be alert to any new information that might shed light on what I'm experiencing. I'm clearly not the only one to have a neurological response to gluten¹, even if it's still poorly understood. But what about these very recent events? Am I looking in the right place? Possibly, there does seem to be increasing news of a correlation at least.² I won't be persuaded to see my gluten-free diet as inadequate..it's up to me to ensure that it's good, just as I would have to if I were eating gluten-containing grains. And, I will continue to emphasise the value of beautiful plant foods that suit the individual for both physical and perhaps crucially, mental health.


~ Annette Henry




¹Busby E, Bold J, Fellows L, Rostami K. Mood Disorders and Gluten: It's Not All in Your Mind! A Systematic Review with Meta-Analysis. Nutrients. 2018 Nov 8;10(11):1708. doi: 10.3390/nu10111708. PMID: 30413036; PMCID: PMC6266949.


²Uhde M, Indart AC, Yu XB, et alMarkers of non-coeliac wheat sensitivity in patients with myalgic encephalomyelitis/chronic fatigue syndromeGut 2019;68:377-378.



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2 Comments


I have neurological response to gluten as well. After spending several years going back and forth to the doctor trying to dis out what was wrong I stopped eating bread etc and within 3 days my husband said it was like living with a different person. On the few occasions I have slipped up I know the effect hasn’t gone away. I eat many other different type of grains and don’t feel deprived at all

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Annette
Annette
Jul 13, 2023
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I really appreciate you sharing this. It seems to be poorly understood in the medical world unless a person tests positive for coeliac disease, so hearing other people's experiences can be very helpful, especially when it concerns a neurological effect. And yes, there are lots of grains that don't contain gluten! My diet is far more diverse now than when I ate almost exclusively wheat as my source of grains... and animal products.

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