two slices of toast in toaster

Please, Stop Telling Me To Eat Gluten!

Let me start by telling you how I came to stop eating gluten. I’ve been following a modified low FODMAP eating regime for nearly four years now. I purposely don’t say ‘diet’ because I’m not doing it to lose weight. Nor am I doing it to be on trend. “Oh but you know it’s not supposed to be a long term diet” they say. “You do know it’s not good to cut out so much food from your diet” they add.

All this advice without really asking why I eat low FODMAP still. Without knowing my medical history. I have Ehlers Danlos Syndrome, and as I’ve hit my forties, a hysterectomy and hormone changes triggered a very unhappy digestive system. Eating low FODMAP fixed that and that included cutting out gluten. I knew it wasn’t supposed to be long term, but I really didn’t want to go back to being crippled with IBS. I checked with my specialist who’d first suggested I try low FODMAP.

“Is he qualified?” you ask. Well yes, as a Professor of Neurogastroenterology with a specialist interest in functional gastrointestinal disorders including Irritable Bowel Syndrome, yes he is and thank you for asking. I appreciate your concern that I may be seeking advice from an untrained professional which I hasten to add is a very bad idea.

His answer to me was if it’s working for you, stick with it. So I have. It’s not easy, on my TreatOut food profile I have currently have 43 ingredients I’m avoiding. Gluten is still one of them.

Now this is a bone of contention for many. “You really should be eating gluten.” I’m told. “But you’re not coeliac?” like coeliacs own being gluten free. Then you read newspaper articles like this, or this. Oh boy, maybe I should eat gluten then.

Let’s face it, if you have to become gluten free then bread is one of the foods that you really miss. I thought I’d try some real bread again and I found a freshly baked sourdough loaf to try. It was heavenly. The loaves were fairly small so two slices were the same as one slice of a standard sliced loaf. I kept it sensible. All was well with the world for a good few months.

hitting head with frying pan

I started to get a headache on New Year’s Eve. I do suffer with headaches and I have two types. This started as my ‘hit on the side of the head with a very large, flat frying pan’ type of headache. Which soon became my “slam my head in a car door over and over and over” migraine. It couldn’t make its mind up and so kept switching for headache to migraine for two and a half months. Constantly. It broke me. Finally, when I had a moment’s let up I got to see my GP. We didn’t know what had caused prolonged attack.

head shut in door repeatedly

The headaches and migraines didn’t come back. Which was good timing as I had a long drive ahead that week. I arrived at the hotel famished. I found a small shortbread in the cupboard. I looked at it. “But you really should be eating gluten” echoed in my head. “It’s only a bit of gluten…” So I ate it.

Twenty minutes on and I started to feel breathless. I had a tremor running through my whole body. The room started to spin and I had palpitations. I felt pretty awful. And this lasted for the entire evening. It had to be the shortbread and the gluten. Sure enough the next morning, my frying pan head was back. Boom.

I connected the dots. My migraine attacks stopped when I stopped eating the sourdough bread. The supermarket had run out of stock for a week, and so I hadn’t been eating gluten. Back home, I tested my theory had a slice of bread, and again, frying pan head the next morning.

So there you have it. I can’t eat gluten, it’s not an allergy and no, I am not coeliac either (which is an auto immune response). I’ve had tests done before I stopped eating gluten and have the camera footage to prove it from both ends. I have a ‘non coeliac gluten sensitivity’ or NCGS. I’ll be keeping an eye out for updates as not a lot is known about NCGS at this stage. One thing I do know, I’ll be making sure I seek my dietary advice from qualified professionals and check with Alex Gazolla before I panic over the press. And please, stop telling me to eat gluten!

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