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Thanks for the tip, but yeah, I am European.

It’s called non-celiac gluten sensitivity and I just found that article a year ago or so and genuinely before being on a gluten free diet for months, I thought the same as South Park creators, that it’s more than likely just a fad and not an actual chronic health thing.

But now since I’ve tested the difference myself, I know otherwise.

I actually tried avoiding wheat and wheat derivatives altogether, which is kinda hard in Europe, since technically a lot of the glucose used is wheat derived, whereas in the US it’s usually from corn. And unlike in celiacs, which is an autoimmune disease, even small amounts of the allergens can give you symptoms. So “gluten free” in the EU is just any product that’s less than 20mg/kg (ie ppm). And while ofc there needs to be some cutoff, clearly that’s not enough for whatever I have. Loads of other people had complained about that specific brand’s “gluten free” as not being properly gluten free either.

There’s one beer brand which I can somewhat drink, and they’ve always been “the” gluten free beer here, despite predating the gluten-free craze. And that I can have and not have generally symptoms, but then other brands tried doing “gluten free” as well, I tried a few and those didn’t suit me. But then again those reactions also aren’t that reliable. They’re reliable, but like… I’d say with an 80% certainty.

I have had a gastroscopy when I was in the army so they’re pretty sure I’m not celiacs, which is why no-one ever suggested this diet to me. I basically spent 10 years wasting life due to like chronic fatigue that just fucking magically went away when I started doing a gluten- and casein-free diet (no gluten based products and no dairy whatsoever, even lactose free).

But the doctor’s here won’t recognise it as an issue. Or as the issue I have.

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jqubed@lemmy.world ⁨16⁩ ⁨hours⁩ ago
Ah, that’s too bad. I can absolutely sympathize with all you’re going through, including not getting much help from doctors. As much progress as we’ve had medically over the past century+ it seems like medicine is still just scratching the surface of what can be wrong, so as we get into more unusual things there’s a lot they just don’t know and can’t answer. I’ve had stomach issues for over 15 years and the diagnosis I’ve had is “Irritable Bowel Syndrome (IBS)” or more recently “IBS-D” to indicate diarrhea-predominant as opposed to constipation-predominant. It’s not life-threatening but can be very disruptive. Sometimes the name bugs me, though, because it just seems to be a catch-all for when they’ve rolled out all the serious things they can test for like Crohn’s disease, cancer, or celiac’s. I have friends with the same diagnosis but very different symptoms and triggers, and I’d say it’s pretty clear we don’t actually have the same condition.

I’ve tried all sorts of diets and medicines, things that worked at first but stopped, and at least now have some sort of equilibrium. The pills don’t cure whatever the underlying cause is but at least it keeps things more controlled. Maybe that’s the best I can hope for right now. Avoiding certain foods, taking my pills, and hoping nothing external happens to upset the balance. It sounds like you’re finding your equilibrium at least, so I hope that keeps working for you!

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- Dasus@lemmy.world ⁨14⁩ ⁨hours⁩ ago
  
  because it just seems to be a catch-all for when they’ve
  
  That’s exactly what it is, actually. It’s a diagnosis of exclusion. Ie when you’ve excluded “all you can think of” (=all they can be arsed with/you can afford) and you still have symptoms, you get IBS diagnosis.
  
  I have it as well.
  
  But IBS is a functional disorder of the large intestine, whereas most of the bad bowel movements I have are kinda orange-ish in colour and very often float. Which lead me to finding out about steatorrhea, having too much fat in your stool. Because that is more linked with small intestine disorders, like celiacs and NCGS.
  
  So essentially I’ve been hurting from this since the 80’s, literally, and the doctors have always either shrugged or just plain not given a fuck. Despite almost four decades of similar symptoms. But then last year I tried an exclusion diet, just rice, fish, potato and chicken, as they’re all very low on allergens, especially if you leave out garlic and onions and other allergy-triggering spices.
  
  For meds, the best I had at one point was Litalgin, but it was banned because it lowered white cells or some such. (It was known at the time I used it, you just had to check them regularly but now you can’t get it anymore.) But also now that I’ve mangled my ribcage last year, I got amitriptylin for my ribs and while reading about it on Wikipedia, noticed it’s also used for IBS when nothing else helps. And yeah, I think I’m in less pain (from that) than I was before starting it. But it does cause me quite heavy fatigue. Like as in I didn’t have anywhere to be so I slept like 14 hours.
  
  It’s just so fucking annoying when the doctors are like playing tennis
  
  “no this is a psychiatric thing!”
  
  “nuh-uh, it’s a somatic disorder!”
  
  “no it’s not, none of the labs are positive!”
  
  “but this guy is clearly suffering and he isn’t in any significant way psychiatrically sick so it must be somatic”
  
  “but none of the tests show anything positive so it can’t be somatic and thus must be psychosomatic!”
  
  repeat ad nauseam for about thirty years
  
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