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Coping with Celiac Disease

Share stories, techniques, and information to help others deal with the disease and the gluten-free diet.


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    1. - Dizzyma replied to Dizzyma's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
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    • Dizzyma
      Hi Trent and Cristiana, thank you so much for taking the time out to reply to me.  My daughters GP requested bloods, they came back as showing a possibility of celiac disease, she advised me to continue feeding gluten as normal and wait on a hospital appointment. When we got that the doctor was quite annoyed that the gp hadn’t advised to go gluten free immediately as she explained that her numbers were so high that celiac disease was fairly evident. That doctor advised to switch to a gluten-free diet immediately which we did but she also got her bloods taken again that day as it made sense to double check considering she was maintaining a normal diet and they came back with a result of 128. The hospital doctor was so confident of celiac disease that she didn’t bother with any further testing. Cristiana, thank you for the information on the coeliac UK site however I am in the Rrpublic of Ireland so I’ll have to try to link in with supports there. I appreciate your replies I guess I’ll figure things as we go I just feel so bad for her, her skin is so sore around her mouth  and it looks bad at an age when looks are becoming important. Also her anxiety is affecting her sleep so I may have to look into some kind of therapy to help as I don’t think I am enough to help. thanks once again, it’s great to be able to reach out xx   
    • tiffanygosci
      I have been feeling so lonely in this celiac disease journey (which I've only been on for over 4 months). I have one friend who is celiac, and she has been a great help to me. I got diagnosed at the beginning of October 2025, so I got hit with all the major food holidays. I think I navigated them well, but I did make a couple mistakes along the way regarding CC. I have been Googling "celiac support groups" for the last couple days and there is nothing in the Northern Illinois area. I might reach out to my GI and dietician, who are through NW Medicine, to see if there are any groups near me. I cannot join any social media groups because I deleted my FB and IG last year and I have no desire to have them back (although I almost made a FB because I'm desperate to connect with more celiacs). I'm glad I have this forum. I am praying God will lead me to more people to relate to. In my opinion, celiac disease is like the only food- related autoimmune disease and it's so isolating. Thanks for walking alongside of me! I'm glad I know how to help my body but it's still not easy to deal with.
    • cristiana
      Forgot to add...  Quite a lot of 'tapas' are gluten free. Ones to look for:  Tortilla de patata (a thick omelette made with potatoes and onions) should be 'sin gluten', and chorizo cooked in red wine makes a nice dish.  Look out for sobrasada, which is very Mallorcan, a softer type of sausage/pate which you can spread on gluten free crispbread which you should be able to buy for supermarkets.  Until very recently we could not buy it here in the UK but we've managed to find a local source, and Lidl have started to sell it in tubs, too. Here's more info on it: Sobrasada is a soft, spreadable, cured pork sausage from Spain's Balearic Islands (like Mallorca), distinguished by its reddish color from paprika, sweet-spicy flavor, and pâté-like texture, perfect for spreading on toast, cooking into dishes like eggs or pasta, or drizzling with honey. Its unique texture comes from the island's humid climate preventing full drying, resulting in a semi-soft sausage that's gently aged, unlike drier mainland chorizo.
    • hjayne19
      Hi @cristiana   Thank you so much for your reply. This is so helpful. I definitely suffer from anxiety mostly related to health. Brain fog definelty doesn’t help this when it comes. I find my 4 am wake ups are potentially more food related if that’s a possibility (eating enough carbs with protein and fats) and if I eat a small snack before bed to hold throughout the night. I just haven’t been able to help the sudden increase in more days where I can’t fall asleep for hours - it’s those racing thoughts like you describe. I feel like a machine that’s running and can’t shut down.    I will try the epsom salt bath that’s a great suggestion. I think I’m probably working through some other food triggers that may be contributing as well with brain fog.    Anyways sorry to go off. It feels so reassuring finding this community and being able to chat with others. I was definitely feeling a bit crazy until I realized there are many others going through the same thing. 
    • cristiana
      Hi Jayne Great choice for a gluten-free cycling holiday, I know the island well. The words you need to look for are 'sin gluten' when you are out and about.   I think you will be amazed at how many packets and canned goods are clearly labelled 'sin gluten' in the supermarkets - many more than one sees here - often in quite large type.  There seems to be a thought in the UK that if you label something gluten free it will affect flavour etc and will put people off buying it!  However, in the case of Spain, it is almost as if the the Spanish see it as an endorsement of quality and flavour!  There is a supermarket called Mercadona and they label their produce very clearly. Paella should be gluten free so long as the chef use the right stock such as Knorr or a gluten-free homemade stock - you can check.  Most Mallorquins in catering speak English but if not, ask, "Contiene gluten?"  Tumbet is a wonderful dish if you like peppers, tomato, aubergines, garlic and olive oil!  A sort of variation on ratatouille.   Slow roast lamb shank should be safe, and there are endless fish dishes to choose from and salads.  Flan is made with eggs, sugar and caramel, and should be gluten-free.  Lots of gluten-free ice cream and sorbets, they should be clearly labelled. If you want specific restaurant recommendations, feel free to PM me. Cristiana    
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