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josie656

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About josie656

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  1. So, With all the talk of cross-contamination on here, am I right in assuming that gluten free options in an otherwise glutonous restaurant are out? Because of cross contamination. Gluten free burger bun option, gluten free pizza base option in the fast food chains and just gluten free options at other places. Even at a breakfast joint, if they offer gluten free bread - how do we know if they are being careful with chopping board, toaster, knife etc. I cook mostly at home but it's nice to go out and be social now and then.
  2. Oh and while it can seem like nirvana, the bread from the gluten free bakeries can be hit and miss. And just as, if not more expensive. (I have currently got some foil wrapped gluten-free pizza bread in my freezer from the gluten-free bakery - can't wait to see what it's like, it feels like french bread, I'm sure I will be disappointed!)
  3. Gosh, I've just got back from the UK (British living in NZ) and I was really impressed by the gluten free bread in the supermarket. Tescos had ciabatta rolls which were really nice and I think there was a brand called genius which was yummy, could eat it for sandwiches - all the supermarket gluten free bread here has to be toasted. Also your supermarket gluten-free pasta is heaps better than ours So be grateful, haha! I'm sure there will be gluten-free bakeries locally. We have two in Auckland, up until last week I only knew of one - the others been there for years apparently. Just a case of knowing. Somtimes major digging and venturing into new areas is needed.
  4. I always get a flu shot because I have asthma so flu is particularly bad news. A couple of years I got sick after getting it but can't say if it was connected as there were other contraction possibilities. I understand the concerns but on the whole I think it's well worthwhile for anyone at extra risk if they get flu (elderly, low immune, asthmatic etc).
  5. PS: It can also be sad to think who we may have been without gluten and what we may have achieved/experience. I can only say now, after hanging out with some incredibly vibrant 70 year olds (I'm in my 40s) that there's still time for many of us to fulfil our potential now we are free - or at least on the road to recovery.
  6. These posts make me emotional too. All these symptoms are ringing so many bells. It's amazing to hear people talk about memory problems because usually people don't get it at all when I talk about memory issues. I don't remember, as another poster said, whole years, most of my childhood in fact. I've been complaining of a bad memory since I was a young teen, my dad used to say it was because I blanked out my childhood because of operations (plastic surgery and stuff) but it's continued. I started getting depressive symptoms in my teens too although it didn't explode (huge anxiety/depressive) until my 30s when I was also diagnosed with ulcerative colitis. In the past I have wondered all kinds of things about what I might have. I have never got many answers from the cognition difficulties which come with a low and yet don't really seem to come under the umbrella of depression. Three years of gluten free did make me feel a lot better but I don't think memory will come back unfortunately. I didn't have the depth of low during those three years that I had this year after a few months back on gluten (took months to put two and two together unfortunately) - now I'm convinced that for me, a major factor, even more than digestive disturbance is behaviour. It's a shame it's not easier to diagnose (without a clear diagnosis we can drift back into gluten) and that so many of us have take so long to reach the discovery but at least we have. These days I keep saying to everyone, whatever their problem, have you tried going gluten free?!
  7. There's a gluten free bakery in Auckland too. Called Marx - it's in St Helliers. Really good range. Not that I've been there since this recent return to gluten free. Might visit soon! Yes Venerdi does need to be toasted, haven't really found a gluten free bread that doesn't need to be.
  8. Hi all, I noticed recently (while trying to check if I was allowed the goodies on the office table) that Cadbury website has a page with gluten information, listing all the products that do and don't contain gluten. Pretty good. Be nice if all companies did that. Re soy sauce, I was pretty sure tamari wheat free was also gluten free. Hope that's right. Gotta love orgran. I love their falafal - it is even SCD compliant.
  9. Hi - Josie in Auckland here. Just saying hi as don't really have any product info. Think Venerdi is the best bread not sure if you get that. Last time round I bought all kinds of gluten free cakes and biscuits but this time I'm trying not to do that. I was on the SCD for a while and picked up some great almond flour recipes for cakes and cake like breads - really recommend baking with almond flour. (and honey instead of sugar). Expensive but comes out great. Would love to hear from people in NZ. Loving quinoa at the moment, lentils, soups. Trying not to overdose on rice like I did last time I was gluten free!
  10. I am starting to have more good days neurologically (brighter and more with it, more positive), starting a food diary to try and highlight other things (suspecting potato, tomato, sugar). It's a big deal to start to feel better. A big relief. I feel quite sad though for the months I have missed this year 'not being me' and over the years too. I'm supposed to be going to UK (via Borneo) in July and find myself not keen. It is much easier to be in control of my diet at home. Eating out seems to be unreliable and when away, eating out happens a lot. I'm even thinking of not going. How do people feel about travel? I've read on this forum that Ttg is specific to Coeliac but then my doctor says it's not. Confusing. I also read, interestingly that SMA (smooth muscle antibodies) which I also tested positive for, can mask one of the specific coeliac antibodies. Good health to all... :D
  11. Thanks Beachbirdie. Yes, I did have some gains on the SCD and did it for over a year. I stopped eight months ago and now I can't remember what I used to eat! It's good but hard. I think energy was still a problem. I am annoyed at myself for stopping though. Falling off the wagon was unavoidable but I should have got right back to it instead of giving in to craving city. Now I'm going to do my own strange meld of gluten free and SCD (reduce grains, lactose and sugar). I'm not with that doctor any more but that's a good idea if I could. My gastro should have it on his records but he's quite prickly to get information out of. I kind of daren't ask him any more after his proclamation I am not celiac. I hope you are feeling better now you are gluten free?
  12. Yep. Going gluten free. The more I read on the forum the more I identify with. All kinds of neuro issues inc long term memory that I can never get any diagnosis on other than depression (and I don't take anti d's) Also, I'm not convinced of the validity of the biopsy I had, it should have been done much much later when I was over the major colitis attack. As I go to work with my gluten-free bread though, i'm thinking cross contamination in their toaster - must be true in every cafe too. Thanks again everyone I posted this in the wrong place so posting again, my Gastro's take on my celiac unlikelihood: - Think I'll just be one of those that diagnoses myself. ------ Here's my Gastro's take on the whole thing (doesn't tell me how many biopsies were taken unfortunately, since they had trouble, I doubt it was seven): ------ 2) The endoscopy showed multiple small ulcers at the duodenal bulb (first part) making it difficult for the endoscopist to gain entry into the second part, but they did and the biopsies were taken. H. pylori was negative at the time, so this was likely associated with the stress of the terrible acute E-coli illness. 3) TTG is not 100% specific for coeliac disease or anything else. TTG titre does not reflect activity of UC either. So a titre of 300 does not mean you are likely to flare up again, or are flaring up now. Coeliac disease and IBD are completely separate conditions, both of which are not uncommon so every now and again we see people who have both. Current results
  13. Doh! dyslexic typing! I meant to type that he said gluten can't be good for anyone with colitis!
  14. Thanks everyone for your comments and useful links. GFinDC - I'm feeling really grumpy tonight so I must be celiac :lol Well, I'm fairly convinced I need to go back to gluten free and perhaps even grain free but I'm still confused about the actual specifics and it is tempting when you have people saying there's no problem to just eat normally. I long to feel better though. And I think I did before, but not completely, it wasn't night and day or anything. I asked my gastro about the 07 gastroscopy and below are his interesting words. Meanwhile the doc who ordered this latest screen hasn't rung me about the high ttg to tell me to go off gluten or anything. I went to a talk once by Dr Gluten (!), google and you will find him, he told me gluten can't be good for anyone with celiac. I guess I got lazy. The SCD made it so super hard and still wasn't feeling brilliant (but possibly there were other foods still consuming that didn't agree) that when I came off that wagon I came off the gluten free too. Here's my Gastro's take on the whole thing (doesn't tell me how many biopsies were taken unfortunately, since they had trouble, I doubt it was seven): ------ 2) The endoscopy showed multiple small ulcers at the duodenal bulb (first part) making it difficult for the endoscopist to gain entry into the second part, but they did and the biopsies were taken. H. pylori was negative at the time, so this was likely associated with the stress of the terrible acute E-coli illness. 3) TTG is not 100% specific for coeliac disease or anything else. TTG titre does not reflect activity of UC either. So a titre of 300 does not mean you are likely to flare up again, or are flaring up now. Coeliac disease and IBD are completely separate conditions, both of which are not uncommon so every now and again we see people who have both. Current results
  15. I also seem to have tested positive (80) for Smooth Muscle Antibodies. Which I'm reading may be indicative of celiac (and worryingly of liver disease). Will have to ask my doc more about this too. I've read somewhere that undiagnosed Celaic may cause autoimmune disease and since UC is thought to be such, and with this SMA result, I'm kind of concerned my immune is gone cuckoo! Anyway definitely back to the Gluten free. Can't quite believe I came off wagon so dramatically (8 months) when I'd done three years.