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MumInOz

Parties And Eating At Friends' Houses

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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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You know, with the exception of my mom who is on the MS diet and my mil who I cook with, I don't eat dinner at other homes. I'm blessed, my family is supportive as are my friends. Having said that, I know how much hidden gluten is out there and how many times I have glutened myself out of ignorance. I don't expect to get a gluten free meal without cross contamination or hidden gluten from someone who has not done all the research. It's hard so many things are brand sensitive too, I can have soy sauce by this brand, but not this brand, clam chowder by this company, but not this... My friends just know that either I bring my own food, or we just get together after dinner and I bring my own snacks (although my girlfriend keeps a list of safe ice creams and chips, and popcorn).

It's sad, but the problem with this disease is people don't understand it and therefore they don't take it serious. Also, it is a difficult one to cook for because of cross contamination, and hidden gluten.

Good Luck.


Stomach problems began November of 2005

Gall bladder removed April 2006

Positive Blood test October 2006

Refused endoscope

Gluten-free since January 21, 2007

Positive reaction to diet

The Lord gave, and the Lord has taken away; Blessed be the name of the Lord. Job 1:21b

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Hi , I have found that bringing your own meal is the best bet, no one seems to mind and are relieved that they don't have to worry about changing their way of cooking. My mother in law is the exception, she has changed to flouring her pork roasts with rice flour and using corn starch for gravey. She is a gem. Parties etc. are a different story, several parties there has been nothing to eat. I bring crackers, cookies etc. to tide me over for the many hours of some parties that seem to never end when you have nothing to do but watch other people eat. Today we're going to my sister in laws house and I am bringing my own little ham (I know she likes Honey Baked which is not gluten-free) and a loaf of gluten-free bread that is really good and any one can enjoy. I like the parties I just don't want them to turn into pity parties. :rolleyes: It really isn't so bad, just a little more work. Have fun . Brenda


Brenda Diagnosed Celiac 2005 Woodville, Massachusetts

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What you eat isn't anyone else's choice. They don't have to believe you, they don't have to know the same things you do. They merely have to accept your choice. You tell them "I choose to avoid all contamination. Period. End of discussion." if they are being such ninnies about it, and stick to that. Then, bringing your own food, or eating ahead of time, is how you feel yourself.

They're trying to enforce their will on you - that's not allowed! :P


Tiffany aka "Have I Mentioned Chocolate Lately?"

Inconclusive Blood Tests, Positive Dietary Results, No Endoscopy

G.F. - September 2003; C.F. - July 2004

Hiker, Yoga Teacher, Engineer, Painter, Be-er of Me

Bellevue, WA

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There is one friend I visit a lot, our kids are similar ages. I keep stuff in her freezer (frozen gluten-free pizza, bread) and she always makes sure to have a stash of gluten-free chips / cool ranch doritos hidden away. Fresh fruit and veggies are always available. She now buys Freybes and Grimms meats so she can always give the kids something meaty. This wonderful friend also changed to squeeze bottles for condiments so a knife never touches the product - no cross contamination

This way we can stop in and even stay for a spontaneous dinner. Course this only works if we remember our insulin! :rolleyes:

Parties - I offer to bring a fruit tray - all who know us will ask questions about safe foods for the children. I also bring along other safe foods to eat for the kids and have them handy. The only not so considerate person is my own sister who minimizes any condition the kids might have..and offers them food from a gluten laden table, doesnt put cheese on a separate tray from the crackers....

I know how long it took me to get the hang of gluten-free, so I dont expect others to "get it" when they only deal with it sporadically. We ahve had a few big fmaily meals (22 people, yikes) - I served gluten-free stuffing gravy etc... everyone liked the stuffing. Once the family saw that gluten-free wasnt some platter of weird foods, they have figured out how to serve a meal without gluten too.

I think most friends would be open to having a handy list to refer to - of naturally gluten free foods and condiments/dressings that you like.

Many people who are not familiar with the diet would be relieved to hear all the "normal foods" on the list - fruits, brands of ice cream that are gluten-free, veges, some chips, rice, potatoes, juice, gluten-free meats from Freybe and Grimms (and others)... and on and on

Sandy


Sandy

Type 1 diabetes - 1986

hypothyroid -1993

pernicious anemia

premature atrial beats

neuropathy

retinopathy

daughter is: age 15

central hypotonia and developmental delay

balance issues (rides an adult 3 wheel bike)

hypothyroid 1996

dermatographia - a form of angioedema 2002

celiac 2004 - by endoscopy

diagnosed Aspergers at age 7 - responded very well (HUGE difference) to gluten-free diet

recovered from Kawasaki (2003)

lactose intolerant - figured out in Oct/06

Gilberts syndrome (April/07)

allergy to stinging insects

scoliosis Jan 2008

nightshade intolerance - figured out April 2008

allergy to Sulfa antibiotics

son is 13

type 1 diabetic - 2003 diagnosed on his 9th birthday

celiac - 2004 by endoscopy

lactose intolerant - figured out Nov/06

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First of all, congratulations on doing so well on your diet and getting control of the food in your own house. That in intself is a challenge. I, too, thinknig eating at someone elses house is the hardest part. I always feel like I'm being difficult - and I'm scared to eat, too. I just blows my mind how easily some people accept it - and how hard other people fight it. LOL My mother complains about having to "cook for me" but then soemtimes will cook a "special" dish so I can have something to eat. She made me a homemade rice pudding at Christmas, since I couldn't have any of the other desserts, and I ate some so as not to hurt her feelings - and ended up sick. I've been glutren-freen for a little over 6 months, but for the past 6 weeks I have had no accidental gluttening and absolutely no sympotms. Now, I've gotten to the point where I'm not going to take any chances. Even at my mother's. I didn't even go for Easter. I fixed my own meal at home with my husband and kids.

Sometimes people surpirse you though. There is one lady I know, who I don't know really well, but our husbands are friends and we went out to eat dinner together a few months ago - luckily at Outback, but I still ended up telling her about my celiac. She immediately grapsed the whole thing - even though she had no prior experience with celiac. She invited me to a longaberger party a few weeks ago - and when we went into the dining room for snacks, she had divided the table by what I could eat and what I couldn't eat. She had read the ingredients of everything she prepared. It was the first time I had ever been in her house. It was hard to even express how wonderful it felt - and I know I could trust her. I ate and ate - and it was wonderful and I didn't get sick!

For family gatherings not at my house - I've started taking my own plate. My mom and aunt always have the same menu - so I just fix the same "safe" things at home and take them with me. My aunt doesn't mind at all = bit it seems to bother my mom. I have to put my own health ahead of other people's feelings, though. Its strange, though, because there is something about the experience that has been empowering. Its really teaching me to stand up for myself!

I know how you feel about having to cook all the time - but I'd rather cook than be sick. Take care and good luck.


Melissa in Virginia

Age 35, married, 2 kids, 2 dogs.

No diagnosis. Gluten free since 10/2/06

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Yes, getting together with friends and eating (especially at their houses) is in my mind the toughest part. The suggestions given so far (eating ahead, and bringing your own food) are good. You will find out quickly who your real friends are. Most people don't understand completely but never the less try to work with you. Some people are suspicious of the whole concept and either doubt you or act uncomfortable when food is around. For me, coping with this situation has become better over time. You will find that after having several experiences dining with friends, you will become adept at saying as little as possible and you will probably be less sensitive to their reactions. Atleast that is how it has been for me. Good Luck!


Don't be afraid to reach for the moon. The worst that can happen is you'll miss and land among the stars.

Positive blood work

2 negative biopsies over 4 year period

Postive EnteroLab results

Lactose/Casein Intolerant

Gluten free since May 2006

Soy free since May 2007

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Sounds like your husband is great. Your older child is on board with the gluten-free thing which is great. After that, if you get anyone to be helpful and supportive it is a perk. Unfortunately I found family to be the hardest to get the gluten-free issue and food alelrgy issue straight. My own opinion is that people take the Medic Alert braclet pretty seriously. Get one for the young child and keep it on always. I'm not sure what you would put on it other than "celiac - requires gluten free food and medications and all times". Maybe that would help the non-believers. It helped us with a child and a bad peanut allergy.

As for parties, I always insist that I bring a dessert. The kids have the hardest time not getting to eat the same dessert as everyone else. Flourless chocolate cakes are great for parties. Make fresh whipped cream too. Who said gluten-free food had to taste bad :rolleyes: Find an awsome dessert your family loves and bring it everywhere you go.

I always eat before I go to a party. And most times I show up with food for me -gluten-free. Close friends have been awsome in making gluten-free meals for dinner parties or asking what I can have so they can plan the party to accomodate me. Family members are not so great I gave up trying to figure out why. I bring all food for me and kids to their houses. One serves something covered in nuts every single time we go to their house. My child has a nut allergy. It sucks. We don't go there often.

If you do find family or freinds that are supportive, write up a list of Safe gluten-free foods, snacks, and crafts that they could have at their house that are normal items. Chips, salsa, dips, ice creams, jellos, cheeses, hot dogs, crayons, glue, gluten-free play dough, etc. Food a regular person would eat. They might be more accomodating then.

Good luck. If nothing else, this disease shows you who your true friends and family are and they are never who you would expect.

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'We live on Gluten-Free Island'

MuminOz, That is the best thing I ever heard! That is so freakin adorable, I'm going to start saying that!

As for advice about eating at friend's houses, I've found that salad is usually the safest thing out there. Meat always has a sauce, casseroles always have flour, but salad is easy, just call ahead and ask the host if they could maybe put the dressings and croutons in a separate bowl! Not really too substantial though, when I know I'll be there a long time I usually bring a casserole of my own. Everyone I've ever had to tell about it has been completely kind and supportive, I even had a waiter in a restaurant cut the ingredients off a box so I could read it. I feel bad that there are so many bad experiences with family for people out there, but you're obviously doing so great at home! Keep up the good work, and congrats on having such a fabulous hubby.....


If you're going through hell, keep going. ~Winston Churchill

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