Dietician
Dietician appointment today went much better than I expected. I was afraid that either (1) she wouldn't have heard of non-celiac gluten sensitivity or would be sceptical that it was a real thing, or (2) she would tell me off for starting a GF diet without official medical advice (I know that people who suspect they're celiac should carry on eating gluten until they can get tested, otherwise the test will be falsely negative; my test for actual celiac was negative anyway, and I took things into my own hands and experimentally started a GF diet because the GP wouldn't take me seriously that it wasn't psychological and wouldn't refer me to a dietician, but the dietician might not have realised or understood that and might have applied the general "don't go GF until we tell you to" advice to me.)
But she seemed very nice and sensible, and she said that if I'd been eating GF since Feb and it's noticeably helping then she's happy to say I have NCGS. (It would be nice if I could have some kind of objective test, but AFAIK they're still at the stage of experimental studies and haven't been rolled out to ordinary front-line doctors yet.) She talked through aspects of how to manage a GF diet, and mostly supported what I've been doing, and gave me a few tips I hadn't thought of. She pointed out that I need to be careful with cross-contamination from things like toasters (I rarely bother with GF bread anyway because it's not very nice, but when I do, I have been toasting it in the same toaster that's covered in normal breadcrumbs).
[ETA this paragraph] The other useful thing she said was that 6 weeks is a typical time frame between eliminating gluten and completely recovering.
She started by saying she'd read my referral letter, and it said I've been suffering from fatigue for years but tested egative for the celiac blood test, so "they reckon" I might have NCGS. I bristled slightly at "they reckon", because it was me that reckoned that, while "they" reckoned it was probably depression; but I didn't say anything, because obviously it's far more important that the correct conclusion is reached than who gets credit for it, and actually I was quite impressed that my GP had written such a coherent and accurate referral letter. (Current GP is actually pretty good, compared with previous ones.)
The dietician seemed quite keen that I join Celiac UK, which costs £24/year and they send you lots of advice and news and their directory of what foods are safe. I can't see the point: you can get advice and news online for free, and food labels are very good and make the directory unnecessary. (I wonder if she gets paid to sign people up?) Also I asked whether they take NCGS people, and she said yes, but we looked at the application form and it had a tickybox for celiac disease and another for some other thing I wasn't familiar with, and none for NCGS. She said I should phone them and ask if I can join anyway, but I don't think I will.
In other news, this seems to be a really good time to have started a GF diet. Shops and restaurants are catering for it much better than they did even a year ago. Until very recently I think Domino's were the only pizza place that did GF (which was a problem because they are rubbish and not fit to run a business), but Pizza Hut have recently started dong GF too, and I had a nice pizza from them last night, and the dietician said Pizza Express and Frankie & Benny's do too.
But she seemed very nice and sensible, and she said that if I'd been eating GF since Feb and it's noticeably helping then she's happy to say I have NCGS. (It would be nice if I could have some kind of objective test, but AFAIK they're still at the stage of experimental studies and haven't been rolled out to ordinary front-line doctors yet.) She talked through aspects of how to manage a GF diet, and mostly supported what I've been doing, and gave me a few tips I hadn't thought of. She pointed out that I need to be careful with cross-contamination from things like toasters (I rarely bother with GF bread anyway because it's not very nice, but when I do, I have been toasting it in the same toaster that's covered in normal breadcrumbs).
[ETA this paragraph] The other useful thing she said was that 6 weeks is a typical time frame between eliminating gluten and completely recovering.
She started by saying she'd read my referral letter, and it said I've been suffering from fatigue for years but tested egative for the celiac blood test, so "they reckon" I might have NCGS. I bristled slightly at "they reckon", because it was me that reckoned that, while "they" reckoned it was probably depression; but I didn't say anything, because obviously it's far more important that the correct conclusion is reached than who gets credit for it, and actually I was quite impressed that my GP had written such a coherent and accurate referral letter. (Current GP is actually pretty good, compared with previous ones.)
The dietician seemed quite keen that I join Celiac UK, which costs £24/year and they send you lots of advice and news and their directory of what foods are safe. I can't see the point: you can get advice and news online for free, and food labels are very good and make the directory unnecessary. (I wonder if she gets paid to sign people up?) Also I asked whether they take NCGS people, and she said yes, but we looked at the application form and it had a tickybox for celiac disease and another for some other thing I wasn't familiar with, and none for NCGS. She said I should phone them and ask if I can join anyway, but I don't think I will.
In other news, this seems to be a really good time to have started a GF diet. Shops and restaurants are catering for it much better than they did even a year ago. Until very recently I think Domino's were the only pizza place that did GF (which was a problem because they are rubbish and not fit to run a business), but Pizza Hut have recently started dong GF too, and I had a nice pizza from them last night, and the dietician said Pizza Express and Frankie & Benny's do too.