Stunning it was this hard to pin down an autoimmune disorder which is effectively a food allergy.
My daughter has celiac which we caught early (concomitant with T1D) although she is not as hypersensitive as some people I have met, it is still crucial to avoid all gluten as even without overt symptoms it effects overall growth and nutrition.
But some of our friends are so sensitive that even minuscule levels of gluten exposure cause intense distress within an hour.
You have a “wasting” disease which is clearly non-contagious. Is it not obvious to test various strict diets? I guess in advanced cases it takes months of a gluten-free diet for the intestine to start healing (years for full recovery) so short-term test diets would not have led to full recovery, but even if you just experiment with carb-free that would reduce gluten so much I would think someone would have caught onto this sooner!
Keep in mind the modern supermarket is a pretty recent thing. We take it for granted that you can get just about anything at any time of year, but it's not something most grandparents would recognise. Heck, even I find there are things in supermarkets that weren't around when I was a kid (Quinoa for instance).
So finding stuff without gluten might have been pretty hard.
Also with anything complex like medicine there are just so many confounding issues that until you have the actual cause, many things sound like they could be it. There would be lots of dead ends and things obscuring the the true cause.
> finding stuff without gluten might have been pretty hard.
Finding anything was pretty hard on its own. In the XIX century, famines due to bad-harvest years were still a thing - potato blight etc etc. It wasn't until early XX century that the combination of industrial practices and a well-established railway network made food scarcity (mostly) a thing of the past, since stuff could now be grown more intensively and then transported quickly all over Europe.
Until then, taking entire foodstuffs out of one's diet could mean the difference between eating and starving.
Definitely it’s not obvious that gluten specifically would be the cause, but seemingly obvious to test specialized diets?
So I guess I’m surprised people didn’t discover “avoid wheat” a lot sooner even if it took until the late 20th century to actually understand the mechanism.
Celiac disease is far more severe than what's now called "gluten intolerance". But maybe they're related.
I get that "Celiac disease results from genetic abnormal immune response to gluten."[0] I'm not sure what that means, in detail. Perhaps there's a particular allele of one of the immunoglobulin genes. But whatever it is, perhaps other alleles cause "gluten intolerance" of varying severity.
Combined with this with the role bread used to play. It was a massive part of diets until relatively recently when we turned bread bland and relatively nutrician free with mass production techniques.
One of the super-fun aspects of coeliac disease is sensitivity increases with lack of exposure to gluten. The longer you’re on the gluten free diet the worse the symptoms are.
Of course it could be that you never noticed how bad it was before.
You understand that T1 and T2 are very different diseases? That a Keri diet works extremely well for T2, but varies in efficacy for T1, ESPECIALLY in children?
My daughter has celiac which we caught early (concomitant with T1D) although she is not as hypersensitive as some people I have met, it is still crucial to avoid all gluten as even without overt symptoms it effects overall growth and nutrition.
But some of our friends are so sensitive that even minuscule levels of gluten exposure cause intense distress within an hour.
You have a “wasting” disease which is clearly non-contagious. Is it not obvious to test various strict diets? I guess in advanced cases it takes months of a gluten-free diet for the intestine to start healing (years for full recovery) so short-term test diets would not have led to full recovery, but even if you just experiment with carb-free that would reduce gluten so much I would think someone would have caught onto this sooner!