Grain intolerance

Does anyone else deal with a grain intolerance (not Celiac disease!)?
It’s almost like having the same symptoms, but the reaction hits whenever I eat most grains or anything high in starch.

What kind of symptoms are you dealing with? I figured out through an elimination diet that, among other things,
grains and anything containing gluten—even gluten-free oats, since they have that similar protein called avenin—trigger cystic acne on my face.

Nausea, vomiting, and—to put it politely—spending a lot of quality time with my crossword puzzles on the toilet...

At first, they thought it was just gastritis... then *Helicobacter*... then an amino acid disorder, which led to them putting me on a strict diet without any animal proteins. Honestly, I’ve never felt worse; it felt like dealing with a bout of food poisoning every single day.

Once I realized I was essentially on my own, I started doing my own deep dive online.

I suspect my issues stem from an enzyme deficiency, but the gastroenterologists I've seen who specialize in Celiac disease don't even want to entertain the idea. It isn't common, after all... though they do run those specific tests for children.

We're talking about a condition known as CSID, which is similar to MGAM deficiency.

I imagine there are people right here in the States suffering from this without knowing why, simply because doctors don't consider it—or they flat-out refuse to look into it. They just shrug their shoulders and say "it's not Celiac," yet they keep sending me for endless endoscopies and biopsies for everything under the sun, including some obscure Whipple disease. As for CSID, they claim it's just not worth the trouble to test for... maybe one day they'll change their minds, but for now, they won't.

www.csidcares.org

www.congenitaldiarrhealdisorders.net

A few years back, I sat through this really intense lecture by a top-tier gastroenterologist who broke down three distinct issues: gluten allergy, intolerance, and celiac disease. She went deep into it—distinguishing between specific symptoms, how often they actually show up, and how to spot the differences.

Now, celiac disease is pretty easy to prove with testing, but trying to draw a hard line between an actual allergy and just being intolerant? That’s a much murkier territory. Plus, the actual prevalence of these things in the general population is incredibly low.

Regardless of the science behind it, I think it’s great that you followed your gut and figured out what works for your own body. 😉