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Peaceflower

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About Peaceflower

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  1. Numbness and tingling is a common reaction to gluten.
  2. Gemini, you misunderstand me in your defence. I said, making things worse is to say something unhelpful. I wasn't referring to you, only that I was offering support. Newly diagnosed people need support.
  3. Hi Gemini, Cross-reactivity is not relevant in the context of oats, but it certainly isn't a myth. If OP is suffering after eating oats, perhaps they are one of the few who DO react to oats. Let's not fall out here or have side-discussions. I care a great deal about helping people who are suffering, especially psychologically when affected. Making things worse would be to say something unhelpful.
  4. I'm assuming they see a dietician, you'd hope!
  5. Lentils and Beans don't contain gluten. Some people are sensitive to grains and need to avoid rice and corn, but that's nothing to do with this and I wouldn't give yourself more to worry about unnecessarily.
  6. Hiya, I know it's not and I didn't say any more about cross-reactivity, but I thought maybe they were confused and didn't realise Coeliacs can react to Oats.
  7. There are solutions. Get some doves farm flour and make banana loaves, bread, eat eggs, fish (do you eat fish?), lentils (speckled ones boiled with brown rice are delicious with fried onion on top and greens on the side), eat pumpkin or squash, chips with beans and cheese, baked potatoes with something and plenty of broccoli or spinach. I dropped to below 6 & a half stone and am over 9 now and I don't have a crumb of anything labelled gluten free ever...
  8. Cross-reactivity is not a myth. My daughter carried on being sick until we also stopped giving her oats. The reaction may not be as severe, but we can't touch any gluten free wheat or oats, because they can label things gluten free that are up to 20 parts per million gluten containing. That's not gluten free. Despite what people may experience, we all have a different tolerance level and only you will be able to work out what yours is. Just cut out anything with wheat, oats, barley, rye, even if labelled gluten free, then see how you are and try these things one at a time once you have recovered again. It may take a fortnight before you begin to feel better, but you could notice a change before that once you've cut out oats. Not ever Coeliac can tolerate gluten free oats. Your reactions may become less after a while, but it takes months at first before you heal enough for a little not to cause a ripple effect.
  9. Hey egs1707, I've been thinking about setting up holidays for people with Coeliac disease and Gluten Allergy. I have not been diagnosed with coeliac disease, but was diagnosed with an airborne allergy to gluten after I lost my speech and muscle strength (full body paralysis) after 20 mins in a bakery. I had already given up gluten, began making the kids lunch with brown bread, then with frozen brown bread, then had to get rid of bread from the house when I'd been given an epipen. I know you must feel completely alone, but that's normal and you will feel bad for a few month after giving up gluten until your system is totally clear of it. I can't go into kitchens, coffee shops, restaurants, friends' houses. I even had to stop going to my mum's until I plucked up the courage to say I got migraine and numbness from just stepping in the door. I lost my speech and ability to walk after a staff meeting at work in a room where food had previously been prepared. I gave up my teaching career because I could not avoid bread and biscuits in some capacity. They served breakfasts in that school. I moved out of the area to start a new outdoor life and less than a year in, I was working as a teacher again, in a school where the staff kept the lid on the biscuit tin if I was around and where the deputy asked the entire teaching staff to eat their food outside the meeting room because of my allergy. People are amazingly sympathetic when you are not afraid of being honest. I went to my mum's for lunch last week and noticed she had packed away the toaster and any trace of wheat or gluten and made me a baked potato on a baking sheet in the oven, with a new butter, new cheese and a tin of Heinz beans. I started taking my own mug and teabag everywhere with me so I can join people in a cup of tea without using a teabag or teaspoon that may have been in contact with gluten. I can't accept tea from someone who has used their own teabags because they may have put their hand in with crumbs on it at sometime. I cannot eat some of the supermarket frozen vegetables because they are produced on a line handling Barley, I discovered after being ill and tracing it to frozen sweet corn. I bake my own bread every day using Dove's Farm bread flour and a Panasonic bread maker with a gluten free setting. I had my father-in-law for lunch and made soup and sandwiches and he kept asking for more because the bread was so delicious. Embrace life and you will feel free. It will come eventually, but never assume people don't care and don't be apologetic about the need to be careful what and where you eat.
  10. And you know MarieK do you?
  11. Hey beachbum, some coeliacs are blessed with being able to tolerate traces of gluten and perhaps you are one of them. I am unable to eat frozen vegetables from a particular supermarket because they produce them on a line handling barley and I got really sick. I also got really sick twice after doing the laundry and discovered I had used the new detergent I had bought contains gluten. I was so ill I couldn't leave the house for four days. A crumb might as well be a pizza for some coeliacs.
  12. Hi, do you have those links you had ten years ago on this forum?!
  13. Hi Peaceflower, Just wanted to say thank you for the chat. :)

  14. Hi ChiaChick, Yes, it is in shampoo and soaps and creams and toothpaste and fluoride and I discovered even in frozen veg from our local supermarket because I asked them to find out about cross contamination after I was ill following eating frozen peas and also frozen sweetcorn. They were very reluctant to tell me, but they said it is produced on a line that handles barley, but it is present in 'the sweetcorn' in such small quantities that it does not require a mention on the packaging. It is also in spray deodorants and plaster in buildings (as a bonding agent). Red cheese and some margarines and icecream contain a colouring derived using wheat (annatto E160). Some medicines contain Ethanol that is derived using a distilling process involving barley straw or wheat. Some sugars come from wheat, some gels. I never trust a gluten free label. I have often found that added flavouring contains gluten, such as soy sauce added to something just labelled 'flavouring'. Most manufacturers receive ingredients to add to their foods, like mint flavour, and wouldn't check the contents for something such as maltodextrin from wheat, or dextrose from wheat. I buy black farmer sausages and they tell me they only ever use corn/maize based dextrose. A minefield. Ironically, anti-histamines can contain traces of wheat I discovered!! Must go but will check back in soon.