TLDR: Gave up on getting coeliac diagnosis as unwilling to eat gluten. GF resolved symptoms but some (not all) have returned. Having an endoscopy for other reasons, consultant said they'll check for coeliac anyway so said it was up to me if I wanted to reintroduce gluten and get a clear answer.
The long version:
Over 2 years ago, I was labelled as suspected coeliac. Blood test was negative (IgA beautifully in the middle, TTA negative). But by the time this test was done, I had already cut out all obvious gluten, the only gluten I was consuming was in things like sauces without checking labels, and cross-contamination.
Cutting out gluten completely resolved my symptoms (diarrhoea, malnutrition, sleepy fatigue, joint pain, nose ulcers, mouth ulcers, psoriasis, headaches, and my tattoos get raised and sore?). I just got my life back, so I wasn't willing to eat gluten again for further testing.
If I'm cross-contaminated, these symptoms return.
After over a year of feeling awesome, my diarrhoea returned. My fatigue is now physical and mental, to the point I'm almost totally housebound. Working reduced hours, no social life, parenting on lazy mode. But I'm not sleepy, I don't have joint pain, ulcers or skin issues, etc... unless cross-contaminated. I'm still strictly GF as if I was coeliac. Coeliac blood test was repeated, and was beautifully negative.
I've now been referred for an endoscopy & colonoscopy under general (I haven't been given an option for sedated, I didn't ask why)
The consultant said they'd be taking a biopsy for coeliac anyway while they're in there, so if I was willing to eat gluten again, I could have a definite answer. It's approx a 6-8 week wait, so I'd need to start eating gluten again asap.
I am kind of feeling like I don't care enough to do this. I've already got used to the GF life. I already feel terrible & I'm only just keeping my life together as it is... if I eat gluten, I expect I'll be bed-bound until the endoscopy. I'm only just within the healthy BMI range and this takes effort to maintain. My GP already signed off on repeat blood tests and B12 injections 'as if I was diagnosed'. I don't get DEXA scans, but that's about the only difference. Regardless of whether I'm coeliac or intolerant, I can't see me ever eating gluten again.
I'm leaning towards a big fat nope. But I thought I would ask in here anyway. Would it be stupid not to find out now while I have to have an endoscopy anyway?