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MumInOz

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About MumInOz

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  1. Hi all, I'm new to this community (and this disease!) and hope this first post won't bore you all too much. I'm a 33-year-old Australian who has never had any of the GI symptoms that many coeliacs get, although since my first pregnancy (almost 5 years ago now) I have had persistent upper oesophageal reflux and very annoying globus (lump in the throat) sensations. After a few unsuccessful rounds with various heartburn meds and with the globus worsening, my dr referred me for a gastroscopy to rule out ulcers and oesophogeal cancers. When I woke up from the procedure, the surgeon was standing there and said, "Ok, I have good news and I have bad news." I immediately said, "Tell me there's no cancers and I don't care what else you tell me." He said, "Definitely no cancers, and your reflux looks pretty mild, BUT I have biopsied your duodenum because I think you have Coeliac disease." And he was right - the biopsy and bloods were definitively +ve. So I have Coeliac "with atypical symptomatic presentation", as they say - the reflux and globus and occasional nausea, but no vomiting, no abnormal bowel activity, and no lower-abdo pain. That said, my small bowel was pretty much shot to tomorrow on biopsy (very flat villi) so obviously, the damage is well and truly being done. I have two beautiful daughters, one who'll be 4 in August and one who's just about to turn 2. The almost-2-year-old, despite being a HUGe baby born (4.2kg, or 9lbs 3oz) has consistently failed to gain weight despite eating well and sleeping well and otherwise thriving (developmentally ahead of her age). She also has the fatty and squishy faeces that I'm now told are associated with Coeliac, and dermatitis herpetiformis (albeit mildly). We had blood taken from both the girls on Wednesday just gone and will get the results in a week. That said, I'm as sure as I can be that my little one will be +ve, and so I've started her on a gluten-free diet like mine (after the bloods, of course, so as not to skew the test!) In just 5 days her bowel motions have become more normal and her dermatitis is clearing up, so I doubt I;m wrong there. Anyway, my specific question relates to how people have managed the issues associated with parties and eating at people's houses. So far, after a brief initial burst of self-pity and angst about all the things we couldn't have anymore, we;ve found the home eating quite straightforward and even quite interesting. I am a from-scratch / raw ingredient cook anyway and have found that many of my family's favourite dinners (shepherd's pie, risotto, roast meats & veggies, curries, soups and stews) only needed small modifications (changing stock or Soy sauce brands, or substituting rice flour as a thickener) to be perfect. My husband is very supportive, as if my older daughter, who happily proclaims to people that we live now on "Gluten Free Island!" and is keen to try any specifically gluten-free treats we buy or make. We have decided to make the house a gluten-free zone; this was my husband's idea, embraced by me. His argument was that it was pretty rough for our little one to not be able to eat things in her own home or for me to have to be worrying about cross-contamination all the time. He's done more reading than I have (!) and has gone through the pantry, removing everything that's glutened and giving it away to friends. He also even threw out our wooden spoons and plastic colander, replacing them with new ones, in the hope that this would prevent contamination. I have so far also found that restaurant eating is OK. I've eaten out three times since diagnosis and haven't had any trouble choosing something palatable and making my requirements understood. We were never fast-food people so not being able to eat McD's et al doesn't trouble me, and we can still enjoy our occasional restaurant meals. So that's all good. HOWEVER, the one area we've so far hit a big fat brick wall is in the whole issue of eating at other people's houses, either for parties or just a meal. To be completely honest I am already sick to death of saying to people, "No, we are not doing this as a fad diet ... It has nothing to do with weight loss ... Yes, even a little bit hurts us ..." I was really angry on Friday night when we went to a close friend's place for an Easter party and I'd told her about the Coeliac and said I'd bring food for me and my little one. She said, "oh no, don't worry, there will be plenty you can eat." FORTUNATELY I took some leftover risotto and a packet of gluten-free frankfurt sausages just in case, because EVERY SINGLE THING had gluten, and not just hidden gluten, OBVIOUS gluten like pasta, bread, breadcrumbs, pastry etc. She had even bought franks for the kids but had bought the normal (non gluten free) brand because "they were cheaper, and honestly, how much difference can it make?" The conversation at that party, which turned on medical issues as a couple of other people there had recent health scares, just showed me what we're up against. People all referred to Coeliac's as "an allergy thing" and assured me that "if the little one has it, don't worry, she'll grow out of it". Several were openly sceptical about the contamination issue, and one came out with that old "if you just give your body a chance, it'll fix itself." Uh-HUH. It doesn't stop there, either. Tomorrow we're going to my Mum's for dinner and I rang her today to tell her not to worry about getting a gluten-free cake for my brother's birthday cake, I'd bring cupcakes for me and the littlie. She thanked me then mentioned we were having turkey. Knowing my mother's propensity for processed food, I said, "You do mean real turkey, right, mum, and you'll remember not to stuff it?" "Oh, I won't need to stuff it love, it's that lovely turkey roll that comes pre-seasoned." Silence. "Mum, could you go get the packet for me?" She goes, comes back, says, "Oh ... oh, dear ..." So I'm bringing main course for me and the little one too. She is trying, but she really has no idea and I know what she is like, she will continue to make these mistakes because she can't read labels properly. She's asked me to compile her a list of "safe brands" for snacks for the kids (a good idea, and one I'll adopt) but it does get me down to think that even at my own loving mother's house, I can't relax and enjoy someone else's cooking. I love to cook, but all the time?? Have mercy! Anyway, what I am getting at is that at the moment I (and we as a family) are feeling quite positive about the gluten-free thing at home, very positive about the effects it's already having on my health and the little one's, and quite relaxed about dining out at restaurants ... but anxious and conflicted about eating at other houses. To the point where my husband rang some friends whose house we were going to next weekend for dinner and asked them to come to us instead, which they were happy to do and instantly relaxed us, as I KNOW I can make a delicious gluten-free meal here and not be concerned about what I put in my mouth. Any ideas, suggestions? Does this get easier with time? Is my current strategy of bringing my own food everywhere a sound one? How has anyone else handled this?
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