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- cristiana replied to Kathleen JJ's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms10Options - 7 year old boy - Helicobacter pylori and serology
One thing I ought to add is that although any new medical condition diagnosis can come as a huge shock/blow, it will one day become second nature to you all Yes, mistakes occur on the way, but it will get easier to navigate. A few things that have helped me: 1/ My husband has said to me a few times, and I think it helps. I should to try think of all... -
- cristiana replied to Kathleen JJ's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms10
Options - 7 year old boy - Helicobacter pylori and serology
@Kathleen JJ I am based in the UK. The following link is to a website for UK based consumers but even post-Brexit, we are still importing from and exporting to mainland Europe, so chances are some of the products mentioned in the link are from the same factory. Therefore, what your son eats would likely be the same product that I eat when it comes to eating... -
- Kathleen JJ replied to Kathleen JJ's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms10Options - 7 year old boy - Helicobacter pylori and serology
@cristiana Do you have any suggestions for the gummy bear type of candy? Because that is what is getting passed around. Someone told me "you will have to read all labels thoroughly from now on" but to be honest: I don't know what I'm looking for that should or should not be there? And is the notion "gluten free" trustable? And what about "may contain... -
- CXinjera 2 posted a topic in Gluten-Free Recipes & Cooking Tips0Injera recipe ?
Would someone point me to a good injera recipe? -
- Kathleen JJ replied to Kathleen JJ's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms10
Options - 7 year old boy - Helicobacter pylori and serology
@trents The first thought indeed I had was 'thank god it's not cancer' and of course, there are many, many, many worse diagnoses to get. But this doesn't mean it doesn't come as a shock. I read a lot of the time 'the most common symptoms are...' and then all the things he doesn't have, but never do I find a list of less common symptoms (bar @Wheatwackeds...
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0December 11, 2024 12:00 AM
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One thing I ought to add is that although any new medical condition diagnosis can come as a huge shock/blow, it will one day become second nature to you all Yes, mistakes occur on the way, but it will get easier to navigate. A few things that have helped me: 1/ My husband has said to me a few times, and I think it helps. I should to try think of all the food I CAN still eat. So much natural, unprocessed food, is gluten free, and a whole lot of processed and canned goods available in the supermarkets are gluten free. I can still eat Heinz Baked Beans and Tomato Soup, for example, and a lot of oven chips are gluten free. Not all chocolate and candy contains gluten. Excellent gluten free substitutes now exist in the supermarkets and I've lost count of the times I've been eating a product and shared it with a friend, and they have loved it. gluten-free doesn't mean taste free. A lot of gluten-free substitutes are just as good as the 'real thing'. 2/ As time has gone by, I have met more and more coeliacs and other people who react strongly to gluten. This will happen to your son in time, and it often helps to be able to chat with someone who walks a similar path. I now have over a dozen such buddies and we share tips and recipes, and also recommend 'safe' restaurants and cafes to each other. 3/ Family support. It is good if you can offer a safe haven at home. My family aren't coeliacs, but the only things they eat that are not gluten free is shop bought bread and pies, and occasionally biscuits and we keep them very separate. The rest of the time we cook with gluten free substitutes and all eat the same. I have always been a keen cake baker and my daughter who is not a coeliac actually prefers the crumbly texture of gluten free flour, so she always uses that, even outside the home. You can spend lots of time cooking and baking with your son, he'll acquire a new skill, and without wishing to boast, if his cakes are as good as mine he will never be short of friends!! My daughter has quite a following at Uni, and I don't think they realise that her cakes are even gluten-free! I hope some of this serves to encourage you. Cristiana
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@Kathleen JJ I am based in the UK. The following link is to a website for UK based consumers but even post-Brexit, we are still importing from and exporting to mainland Europe, so chances are some of the products mentioned in the link are from the same factory. Therefore, what your son eats would likely be the same product that I eat when it comes to eating sweets. https://libereat.com/2021/07/gluten-free-sweets/#:~:text=Haribo Gold Bears are gluten,Starmix But always check the ingredients lists first. When doing this, what you need to avoid (usually printed in bold in the ingredient list) are: Wheat, barley and rye. These grains all naturally contain gluten. Coeliacs must also avoid products which state, "May contain traces of wheat, barley and rye" or products where the statement occurs: "Made in a factory which also handles wheat, barley and rye" However, one other thing to think about: oats. In the UK, we do produce quite a few cakes and some candy which contains oats. Oats do not naturally contain gluten, but as the crops are often grown alongside wheat, barley and rye, or processed in the same plants, cross-contamination can occur and they pick up gluten 'en route'. The good news is that some food producers now grow oats away from these crops, and process them in oat dedicated plants, so you end up with a product called "pure oats" which are suitable for the majority of coeliacs (a minority react to avenin, the oat protein, in the same way they would to gluten, but I won't go into that here - just making you aware in case down the line you think it could be a problem). So increasingly, in the UK at least, manufacturers are now printing oats in bold. In candy production, you might find vegan chocolate which contains oat milk, hence I mention it here. Unless such a candy bar stated that it was suitable for coeliacs, your son would have to avoid it. Incidentally, I think the idea of having a party after your holiday is a very wonderful, positive start to your son's gluten-free diet journey. I was symptomatic by the time I was finally diagnosed with Coeliac Disease and was quite keen to start the diet straight away. But just a few days after my endoscopy I was due to visit Normandy. My consultant said to me, "Don't bother about taking up the diet until you get back". I did try to start it in France but back then French catering establishments didn't seem to appreciate coeliac customers (something my gastroenterologist seemed to know something about!) so I was so glad he told me not to worry until I came home!
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By Kathleen JJ · Posted
@cristiana Do you have any suggestions for the gummy bear type of candy? Because that is what is getting passed around. Someone told me "you will have to read all labels thoroughly from now on" but to be honest: I don't know what I'm looking for that should or should not be there? And is the notion "gluten free" trustable? And what about "may contain residual gluten"? Is that safe? -
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By Kathleen JJ · Posted
@trents The first thought indeed I had was 'thank god it's not cancer' and of course, there are many, many, many worse diagnoses to get. But this doesn't mean it doesn't come as a shock. I read a lot of the time 'the most common symptoms are...' and then all the things he doesn't have, but never do I find a list of less common symptoms (bar @Wheatwackeds examples - and also non of these are present). I get that severe pains can be a symptom, though the fact that they were omnipresent for 10 days (the exact time his viral values were up) and then 6 weeks later 1 episode also when the family was going through a stomach bug, and since then (nor ever before) none, this logically seems more related to a virus then a symptom of Coeliac, as I'd think this would have to be more present on a regular basis? He always has loved gluten-containing food and at that time was rather having less of it (due to the bug and feeling a little under the weather so eating more yoghurt and the likes then cookies) then more of it. It just doesn't sound all that logical. That being said, I comprehend AND accept that things can not always be logical. I am trying to understand what you are saying about the tolerance - so as long as he eats gluten, he will have some tolerance to it, but when he stops, and say accidentally ingests something, he will react more as the tolerance is lower? It sounds so illogical (hmm, I see a pattern with myself: really looking for logic in a very illogical condition). And how do you interpret the values very 6 months as you maybe don't know there has been an accidental intake? Do the values ever go down to zero or is it a question of getting them mainly lower and can they never go down to normal rates? Normally results of his biopsy are coming in on monday, a little chance they come in today. I've been checking my mail every 10 seconds 🤦🏻♀️, this will not be a productive working day I fear 🙄. Then we know the values, but we only have an appointment with the specialized pediatrician and dietitian on December 6d (which in Belgium is a children's holiday comparable to Santa Clause). So we'll get the full "introduction" to the disorder and approach then. I did talk to the pediatrician and gastrointestinal doctor who did the gastroscopy asking their advice about a plan I was having: to wait to start the diet after the holiday season, we will be abroad in a hotel and to start there in this very new world feels quite stressful for us, but even worse: it will start this journey in a lot of negativity. So our plan is to have a "yummy" party after we return from our trip, during Christmas holidays, inviting some of his friends and buying and making a vast array of gluten free goodies and having them sample and score it. This way it feels like a festive thing AND we can immediately find some things (hopefully) he genuinely like. Both doctors agreed with this approach as this was truly an accidental find and hadn't we tested his blood 2 weeks ago chances were we'd only have found out in a year or 2 so those extra few weeks will not make the difference. So now I'm gathering information, talking to people to know where there's good stuff... But what keeps on being quite ununderstandable to me (I hope this will get explained on December 6th) is how it works. So it's auto-immune, meaning gluten trigger an immune response. Is this a black and white thing? Does 1 grain of wheat trigger the same response as a full bowl of spaghetti? And I mean this on a bowel and organs level, not on a symptoms level, as I gather (is this correct?) that not having any symptoms does not mean that his bowel doesn't get attacked? I know it all could be worse, I truly do, but to be honest, this is the 4th "anvil falling on my head out of a clear blue sky" diagnosis that I got for one of my most loved people. First my mother was diagnosed with presenile dementia without anyone in the family having it. Then my unborn daughter turned out to have a chromosomal defect that made that she could only live inside of me and died when she was born, then my sister turned out to have (a tested non genetic 🤯) form of presenile dementia as well, with me being her only caretaker as my mother passed away a few years ago and she has no family of her own. And now this. And this is absolutely not only the least of this row but of course not even in the same ball park. But for my resilience and bearing capacity this just feels not little as it affects the life of my little boy...
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