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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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    • ALynn
    • cristiana
      That is such a lovely post - thank you so much, @Kathleen JJ for taking the time to write.  I am so glad I actually saw it as at the moment I'm not really supposed to be looking at the forum.  I have a couple of long overdue work projects so I was taking a breaks from the forum to concentrate on my writing. 🙂 You have handled/are handling this situation so well.  What you say about gluten-free alternatives is so true about being laden with fats and sugar, and what I find very difficult to understand is that sometimes in the UK cereals and bread aren't fortified in the same way that glutenous equivalents are - surely if anyone needs minerals and vitamins added, it's coeliacs?!  Anyway, the best way forward is to cook from scratch when time and money allows. Here is a standard cake recipe.  You will need to source gluten free self-raising flour.  If that isn't a thing you have where you live, you will need plain gluten free flour then have to add the raising agent/baking powder separately, according to the brand's instructions.  This cake can be filled with jam, or with real cream and strawberries, or topped with melted chocolate or just powdered sugar.  Or use frosting.  If you look up different flavours of Victoria Sandwiches, you can see you can make them coffee flavoured, chocolate flavoured, or lemon, by adding those flavourings.   If you need me to supply that info let me know. This cake was made famous by Queen Victoria and is a staple of British baking.  Loosely based on the French Quatre Quarts cake, another way of making it is weighing the eggs with shells on, say three, and then that same weight is applied to the margarine, flour and sugar that you use.  Make sure you prepare the tins well, as the cakes stick easily. https://www.freee-foods.co.uk/recipes/delicious-gluten-free-victoria-sponge/ You can make a third layer, it looks quite impressive stacked up high! I am sure others will suggest recipes if you put in a request on a specific thread. Lovely to catch up with your news, and I hope that you will stick around for a bit to let us know how things go! Bon appetit!   
    • Kathleen JJ
      @cristiana First of all I want to thank you for your clear and gentle approach to my questions and emails. I was quite in shock because we were totally not expecting this scenario. We're 2 weeks later now and things have settled more. After the biopsie came back positive the rest of our family got tested as well but non of us have it. But now we know what we're up against, we told him. We laid out a table with crisps he likes (and are gluten-free) and had a little festive Friday-night moment and then told him that we finally had the results of his test. We had explained the gastroscopy to him that the doctor had found some substances in his blood and wanted to look at this tummy from the inside. We told him that he had seen that there was a little wound there, explaining the horrible pains he had had. That it was easy to cure this wound and make that it never would come back: leaving out some type of foods. Both our children had been asking us for a long time to take a packed lunch to school instead of eating at the cafeteria so we ended with the 'good news' that they now can bring a packed lunch. Our daughter was over the moon, our son at first as well but then he was really sad about leaving his friends behind at the dinner table (children who eat hot meals and packed lunches are different dining areas) and that he would not be able to sit with his friends who take packed lunches as the seats are set and he's the last one in and would have to sit alone. So that was quite sad [I went to the headmaster and asked her to maybe have a shuffle of the diner tables after New Years so he also can sit with a friend and she was going to look into it]   We are now trying out different types of foods. I at this point have no idea what to put in his packed lunch as before I'd take some sandwiches and put cheese or ham on them, but the gluten-free bread I've found so far doesn't really allow for that (it breaks and falls apart). So now I'm on a hunt for nicely tasting things to put in his lunchbox.   I've been shocked somewhat to see that a lot of gluten-free products are indeed gluten-free and thus healthier for him, but are also contain much more fats and sugar then their gluten full counterparts... I didn't expect that to be honest...   Anyway, you mentioned that your daughter and her friends love your gluten-free cake. I'm very interested in a recipe. It is customary in Belgium that if a child has his birthday, they give a treat to the rest of the class, and that treat is most often cake or cupcakes. He will not be able to taste anyones treats anymore so I asked the teacher for all the birthdays and am planning to bake some for him right before those birthdays, give to the teacher so she can give to him. But this entails I have a good cake recipe 🤭. Would you be so kind to share this with me?   Kind regards, Kathleen
    • Raquel2021
      Yes stress can .make the pain worse. That being said it is taking years for my body to heal. I am not able to eat out as 98 % of restaurants do not know how to cook for celiacs.  I only eat out on special occasions. Any time I eat gluten I feel there is a tourch going through my digestive system specifically in the area you have mentioned.  Like where the deudenal is . I am very sensitive to cross contamination so any small amount of gluten makes me sick.
    • trents
      @Ems10, celiac diagnosis normally involves two steps. The first one is serum antibody testing which you may have already have had done and are waiting on the results. The second step involves and endoscopy (aka, gastroscopy) with biopsy of the small bowel lining. This second step is typically ordered if one or more antibody tests were positive, is a confirmation of the serum antibody testing and is considered the gold standard diagnostic test for celiac disease. Now hear this, you should not be eating gluten free weeks or months in advance of either kind of testing. Prematurely going on a gluten free diet can and will sabotage the results of the endoscopy/biopsy should you get a referral to a GI doc who would want to do that. Eliminating gluten from the diet causes causes inflammation to subside which allows the small bowel ling to heal such that the damage they would be looking for is no longer there.
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