I have the same experience working in an office job. The best thing I have found is to carefully manage my energy to avoid the boom/bust cycle, but it's only partially effective.

The best thing would be to simply work less hours. Say 28/week, but they would all be good high productivity ones. Unfortunately it would be a massive pay cut too, because employers don't think that way.

The only way I’ve been able to handle this is by being self-employed. That way, when I needed to sleep for 5 hours after lunch it was up to me.

Now that I know I have celiac and can manage it by avoiding gluten, I just have chronic pain and inability to eat without not all of the autoimmune madness. This is a lot less uncomfortable but I am surprisingly almost as unable to work fully.

My crohn days are over (at least for the diagnosis), but I'm with you on this one. I follow a strict schedule with eating and then just sit around (this usually means breakfast at 7am and then waiting an hour and a half, similar thing for lunch), but whenever an empoyer comes up with "team breakfast" or "early standups" I'm in a difficult situation.

My schedule in the undiagnosed celiac days was to get up, and only drink coffee instead of breakfast since food made me intensely exhausted. Then I had good productivity until lunch. After lunch it was a tossup whether I’d be basically okay, a little slowed down, feeling like a nap, or incredibly exhausted and feeling like I was dying. At some point I found that drinking only alcohol for lunch left me feeling less horrible than food, on average, and that was puzzling, somewhat convenient and not helpful.

Work gatherings based around food are a huge problem, now and then, in several ways. For various reasons, I always got felt sick after eating at restaurants.

You still have fatigue after eating even after avoiding gluten - is that from residual damage?

I'm curious because I have similar fatigue symptoms. But I had stopped eating wheat, so I had assumed it wasn't celiac. (Can't test without doing a gluten challenge)

But I completely agree that being self employed is the best way to handle this, and also that it is a major setback to productivity. My symptoms have improved in the past eight months or so and it's felt like an incredible blessing to simply have some normal days.

I have some sort of condition that makes me unable to swallow solid food - after I swallow it. We don’t know what it is yet. It is similar to achalasia or diffuse esophageal spasm. It could be from damage from celiac, or it could be it’s own thing. I don’t have the insane immune reactions to food anymore, which caused most of my fatigue, but I still have constant pain, headaches, regurgitation after eating. I’m slowly starving because I simply cannot eat enough food to stay healthy, which leaves me very low in energy. I’m now just barely at a healthy weight, at 18 BMI.

There is something called refractory celiac, which is permanent digestive damage. My mother had that and much of her small bowel had to be excised. I may have that issue. I’ve recently been to the hospital and have a few biopsies pending.

Wow, that's absolutely brutal. I hope you are able to get it resolved.

Thanks! It’s true; judging by /r/achalasia, esophageal dysfunction of this level is bad enough on its own, without celiac.

Yep. At my current place HR allowed me to go and see the doctor if I tell them well in advance and overwork the missing hours.

Funny thing is that I'm very diligent and if they asked me how I feel about _helping them out on the project_ I would've gladly tried to stay longer whenever the pain allowed me to do so, but this way it felt like a slap in the face.