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penguin

By penguin
in Introduce Yourself / Share Stuff

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mamaw Community Regular
mamaw
Posted

Hi Penquin

Glad you finally got a correct dx's . I alway feel I can live with something if I know what I'm dealing with but the unknown scares the hell out of me.. It sounds like you are coping well & of course I think we all wished it would have taken up residence elsewhere.

School sounds fun & exciting. Good to have you back.....hugs

Oh Peter, I think I have your kitty setting on my window perch.!They could be twins ?? my kitty came to me as a stray & now he gets accupuncture & massages! We call him the $5000 stray.

mamaw

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blueeyedmanda Community Regular
blueeyedmanda
Posted

It's great to hear you finally got some answers....yes I agree colonoscopy was real fun, but I am not sure what is worse the test or the prep beforehand....I threw-up the phos-soda, ugh! I actually do not remember the procedure which is nice. The gas pain afterwards was not fun :(

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    • cristiana
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      Hi Colin I share your frustration. My coeliac disease was diagnosed in 2013 and it took some years for my  TTG levels to settle to normal levels in  blood tests.  I had to make a few significant changes at home to make sure our house was as gluten free as possible (I share a house with gluten eaters) but time and time again I found I was glutened (or nearly glutened whilst eating out  - like regular bread being served with a gluten-free meal ).  Even eating in chains that Coeliac UK were recommending as safe for coeliacs.  So I gave up eating in restaurants for a while.  My blood tests normalised.  But here's the thing:  the lowest my TTG readings ever got to were 4.5 (10  and under being my local lab's normal levels) and now that I am eating out again more regularly, they've gone up to 10 again.  I am quite convinced this gluten is coming from exposure whilst eating out.  Small levels, that don't make me violently sick, but might give me a mild stomach upset.  My next coeliac blood review is in September and I mean to give up eating out a few months before to see if that helps my blood results get back on track. It seems to me that there are few restaurants which really 'get it' - and a lot of restaurants that don't 'get it' at all.  I've found one restaurant in Somerset and a hotel in East Sussex where they really know what they are doing.    The restaurant in Somerset hardly uses flour in any of their dishes; the hotel in East Sussex takes in trainees from the local college, so they are teaching best standards.   But it has taken a lot of searching and trial and effort on my part to find these two places.  There are certainly others in the UK, but it seems to me the only real way to find them is trial and error, or perhaps from the personal recommendation of other strict coeliacs (Incidentally, my coeliac hairdresser tells me that if a Michelin star restaurant has to have a separate food preparation so she has never been glutened in one - I can't say I've ever eaten in one!) For the rest, I think we just have to accept that gluten may be in the air in kitchens, if not on the surfaces, and there will always be some level of risk wherever one dines, unless the restaurant cooks exclusively gluten free dishes. Cristiana  
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