OrangesAndMelons
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Celiac.com - Celiac Disease & Gluten-Free Diet Support Since 1995
Everything posted by OrangesAndMelons
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I feel pretty confident they're doing everything they need to do and should be doing, but I want more info — it's my body ?
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The gastro said he checked for deficiencies… dunno what it included, the letter just mentions the anaemia ? Hopefully they checked that. Why will they not give me adequate information? I had to negotiate just to get my detailed histopathology results. I mean, generally they've been really good. I just personally like to have as much info as possible. ...
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I mean it's very handy, not having periods, but I kept complaining to them because I was worried there was something wrong. It's not usually a great sign ?
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Hi! Lovely of you to ask ? I started the gluten-free diet on Monday and it's not been too bad so far; my partner had already got meals and stuff in before bringing me back from uni. Monday was also the day of my gastro appointment, which was a little frustrating; they gave me the registrar, rather than the consultant who's a bit of a coeliac expert...
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Well that's just crap isn't it? Especially your sister — no DEXA scan even! Are you in the same area? Have they even seen the NICE guidelines? Those are supposed to make sure you get the right treatment regardless of area but I guess they're no use if they're ignored. Well done for getting him to take the biopsies, though; not an easy thing to get a...
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The other girl at my college who was diagnosed a few months before I was, in pretty much the same way I was (GP doing a coeliac test "while we're taking bloods anyway" followed by referral, endoscopy, etc.), said the clinic (including the doctor) was really good. So fingers crossed.
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Thanks! I hope he's well-informed — he seems pretty good, but I haven't spoken with him 1:1 in an appointment yet, just the presentation where he answered one of my questions. That's heavy-duty sensitivity you've got there… I'm not surprised you're super-careful. I might try making gluten free muesli…
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It seems that the info in the pamphlet about annual followup is out of date.
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Yes, we got explanations of gliadins, glutenins and avenins, and the clinic's rationale for initial inclusion of oats. The second biopsy isn't just for that, it's to check response more generally and also to confirm (or otherwise) the diagnosis. My doctor is this guy: https://www.coeliac.org.uk/campaigns-and-research/our-research-conference/research...
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Went to the info session (ON THE BUS! ON MY OWN! praise all the gods for the efficacy of lithium) and it seems standard procedure round here is to keep eating (gluten-free) oats until the second biopsy. (They don't do a gluten challenge and third biopsy round here any more, thankfully — response to the gluten-free diet at second biopsy is considered definitive.)...
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The rest of it reads: What happens if I accidentally have some gluten? If you accidentally have some gluten you will come to no serious harm but may experience symptoms. Unless you are very careful to remove all the gluten from the diet, you will receive no benefit from your gluten free diet as the effects of even a small amount of gluten...
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This is the first 3 pages of the information leaflet I was sent with the letter stating my diagnosis. It won't let me upload any more than that.
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It's bonkers. I don't think the making-money part is relevant in the UK because doctors have no financial interest in the treatment. I also got a really informative leaflet explaining the condition, and also what will happen regarding my treatment: I'll have an appointment with the gastroenterologist, who'll explain the condition and what I need...
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Reading some of the forum posts on this website, I don't understand how so many people's doctors are so bad. My GP ran the test, and when I got a positive result on the serology he referred me to the gastroenterologist at the local hospital who specialises in coeliac disease for an endoscopy, telling me that in the meantime I should keep eating gluten; there...
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Thanks for your post! In terms of strictness, the easier something is to stick to, the more likely I am to stick to it, so I want to find the least restrictive set of rules that's actually effective — if I make it more difficult than it needs to be, I'm more likely to get emotionally burnt out, make silly mistakes, or use up my willpower reserves. I...
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UK guidelines seem to be a lot less strict… https://www.coeliac.org.uk/gluten-free-diet-and-lifestyle/recipe-database/cross-contamination/ These are all the kinds of things I'll be asking about at the education session if they're not covered.
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My partner is a keen and experimental breadmaker and has spent years learning to make different kind of bread… we have a big bag of gluten in the kitchen ? (or did; perhaps he's thrown it away by now). Great stuff for texture… he's been experimenting with gluten-free baking while I'm away. The loaf he brought up for me to try when he visited wasn't too bad...
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Psyllium husk; there's an idea… I was using that for a while to try and sort out my useless gut. I think I still have an enormous tub of it somewhere. Also some capsules. They're by the Fybogel, loperamide, metoclopramide and mebeverine… (why yes, I *did* automatically say "no" when my GP asked me if I had GI issues when he got my surprise tTG-IgA result bec...
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They write it up like this. That's also a salad bar, but, well. You're trusting the hundred people before you in the queue. So the only thing I would've been able to eat that day would be broccoli florets. Which, like all brassicas, I hate ?? I took a photo that day because it was a particularly bad menu for a coeliac diabetic.
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I'm hoping to learn how to do baked potatoes in the microwave next term, but that will mean getting hold of a microwave for the shared kitchen at college (I can't get one at home because there's nowhere to put it). I'm loath to run an oven for several hours for one potato… ? I love baked potato with baked beans, though. I have it for lunch from the canteen o...
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Yep, but non-aged cheese tends not to have the desired effect in recipes like that. I eat mozzarella, cream cheese, mascarpone, stuff like that but avoid things like cheddar. But I don't really like aged cheeses anyway so that's okay ? It can get a bit awkward sometimes because if people need to feed me, in order to avoid giving them a biology lesson...
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Yeah same — one example of my cognitive crapness: I have a complete lack of sense of direction (e.g. my parents moved to a new house and despite me visiting them several times a year for a week at a time, I still managed to get lost in it for around ten years — things like turning the wrong way at the bottom of the stairs) and when I try to explain, people do ...
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Thanks — cooking shows don't help, videos do sometimes if I rewind and repeat them a lot, but my kitchen is inevitably different and only has one chopping-board-sized prep area so it can be tricky to adapt stuff. Cheese is out, unfortunately (or fortunately, because I don't like it), because of the tyramine. The muffin tin tip is good; thanks. ...
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I've made almond butter… SO nice! Almost as nice as the cashew butter. I use timers — my entire life is run by schedules and reminders and timers on my phone ? I don't know what I'd do without it! And scales are standard in UK kitchens. My partner has a temperature probe but I haven't yet got onto foods that need that. Will definitely use it when I g...
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Oh dear… I knew this would happen ? It always does! — I've put a great deal of effort into learning to cook and I find it harder than anyone seems to be able to understand, and I now have a (very) limited repertoire of things I can do if I'm feeling on top form, like putting things in the oven at the right temperature for the right time (e.g. pizza, oven chi...
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