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Glutina

I Want To Be Polite But...

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sorry....double posted..please go to other thread...:)

-Glutina


-Recently diagnosed with extreme gluten sensitivity

-Celiac test results: negative

-In and out of hospitals and doctors offices for past 5 years with stomach/digestive issues

-Eating disordered past (this most likely triggered gluten issues G.I. thinks)

Symptoms when glutened: Diah. and Cons.; cramping/uncomfortable abdomen; rash on forehead; extreme fatigue; sometimes excruciating abdominal pain; feeling of weakness; acid reflux

**New to the gluten free way of living, but feeling like my old, healthy self again!!**

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Hello all you lovely gluten-free people,

Let me first say hello as I am new to this community (Canadian) and also this way of life.

I was disgnosed with extreme gluten sensitivity a month ago now (yes----my specialist actually took the time to test me and when celiac blood test came back negative (haven't had biopsy...don't want it...) but I still had a ton of symptoms, he tested me further until he could give me an answer!!!) and so far things have been going...okay. I am a 25 year old student, and the budget is posing a bit of a problem as is finding the time to properly cook my own healthy gluten free meals...BUT I feel like my old self again, which is the proof to me that this is what I need to be doing, so it is all worth it I think!

Anyhoo, back to my original topic....

So, I went to a friend's for dinner. There were quite a few people there and it just so happens that another friend who came also has gluten issues, so the chef (our friend as well, the host) said he would cook a gluten free meal. Well, I arrived early and teh place smelled great! I asked if I could help at all and he gave me some things to do. While i was in the kitchen, I noticed him just tossing stuff in like bread crumbs (!!!) and sour cream and other random things. I asked him if this was a non-gluten-free dish, and he said "ooooh right...I'm sorry, I just totally forgot..." and so I got quite concerned at this point. I mean, I feel "bad" having to get him to go out of his way to make a gluten free meal even though I offered to bring my own food (he said NO way as he likes to cook anyway) but then it is also a pain because I know some of the dishes were glutened....and now, 4 hours later, I am feeling bloated and have bad indigestion, gas, and reflux.

My questions are: how do you handle going over to friends' places for dinner without seeming obsessive or rude? How do you ensure that your meal is gluten free? Do you just eat it and suffer later? (Although for true celiacs I know this is not really an option...)

Please feel free to add any other comments pertaining to this topic. Any and all advice is appreciated! Have a great day!

-Glutina


-Recently diagnosed with extreme gluten sensitivity

-Celiac test results: negative

-In and out of hospitals and doctors offices for past 5 years with stomach/digestive issues

-Eating disordered past (this most likely triggered gluten issues G.I. thinks)

Symptoms when glutened: Diah. and Cons.; cramping/uncomfortable abdomen; rash on forehead; extreme fatigue; sometimes excruciating abdominal pain; feeling of weakness; acid reflux

**New to the gluten free way of living, but feeling like my old, healthy self again!!**

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sorry...please reply in other thread...double posted accidentally


-Recently diagnosed with extreme gluten sensitivity

-Celiac test results: negative

-In and out of hospitals and doctors offices for past 5 years with stomach/digestive issues

-Eating disordered past (this most likely triggered gluten issues G.I. thinks)

Symptoms when glutened: Diah. and Cons.; cramping/uncomfortable abdomen; rash on forehead; extreme fatigue; sometimes excruciating abdominal pain; feeling of weakness; acid reflux

**New to the gluten free way of living, but feeling like my old, healthy self again!!**

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Guest Happynwgal2
sorry....double posted..please go to other thread...:)

-Glutina

I cannot find your original posting, but I see this one, and read the one you posted about dinner at a friends house - I got it in my email. You are now bloated because it turned out he forgot to do a gluten free dinner like he promised.

I am sorry that you are feeling bad - and hope that you will just take it as a temporary setback.

When I go to friends for dinner, I sometimes tell them I'd love to bring my gluten free bread, to show them how tasty gluten free food can be. Often this gets a conversation going about gluten, which gives me a chance to tell my friend how sick I become from gluten. My friends all understand how sick I get and I help them by offering to bring a safe dish that is gluten free. It works out great every time. I now have friends who go out of their way to give me gluten free food - and I appreciate it.

So your friend meant well, but probably does not quite understand how seriously impacted your body gets from gluten.

Good luck with your next dinner party!

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Hello all you lovely gluten-free people,

Let me first say hello as I am new to this community (Canadian) and also this way of life.

I was disgnosed with extreme gluten sensitivity a month ago now (yes----my specialist actually took the time to test me and when celiac blood test came back negative (haven't had biopsy...don't want it...) but I still had a ton of symptoms, he tested me further until he could give me an answer!!!) and so far things have been going...okay. I am a 25 year old student, and the budget is posing a bit of a problem as is finding the time to properly cook my own healthy gluten free meals...BUT I feel like my old self again, which is the proof to me that this is what I need to be doing, so it is all worth it I think!

Anyhoo, back to my original topic....

So, I went to a friend's for dinner. There were quite a few people there and it just so happens that another friend who came also has gluten issues, so the chef (our friend as well, the host) said he would cook a gluten free meal. Well, I arrived early and teh place smelled great! I asked if I could help at all and he gave me some things to do. While i was in the kitchen, I noticed him just tossing stuff in like bread crumbs (!!!) and sour cream and other random things. I asked him if this was a non-gluten-free dish, and he said "ooooh right...I'm sorry, I just totally forgot..." and so I got quite concerned at this point. I mean, I feel "bad" having to get him to go out of his way to make a gluten free meal even though I offered to bring my own food (he said NO way as he likes to cook anyway) but then it is also a pain because I know some of the dishes were glutened....and now, 4 hours later, I am feeling bloated and have bad indigestion, gas, and reflux.

My questions are: how do you handle going over to friends' places for dinner without seeming obsessive or rude? How do you ensure that your meal is gluten free? Do you just eat it and suffer later? (Although for true celiacs I know this is not really an option...)

Please feel free to add any other comments pertaining to this topic. Any and all advice is appreciated! Have a great day!

-Glutina

I am starting to think its always important to bring some gluten free food anyway just in case its needed. You can put it in a small ice chest so it will keep in case you don't need it--and/or share it with others. This goes for eating at a restaurant too.

When I put on a potluck with poetry and art event I always make an inexpensive but good main dish and salad so I will have something to eat that I can share with others. Everyone loves it and gradually they are becoming aware there are people like me who need to be gluten etc. free and that, hey, its not so bad after all!

Yolo


Diagnosed celiac sprue as infant: failure to thrive & pneumonia-back on grains age 4. Began herbs 1971 combating chronic kidney disease/general ill health 1973. Avoid wheat family and "allergens" by 1980. Late 80's doc. diagnosed candida: cave-man diet. Diagnosed degraded myelin sheath 2006; need co-enzyme B vitamins. Discovered celiac fall 2007; finally told diagnosis as infant. Recently found I am salicylic acid intolerant. Ironically can't tolerate most herbs now. Can now eat brown rice & other gluten-free grains (except corn) & even maple syrup & now homeopathic medicine works! Am still exploring the shape of this elephant but I've made progress!

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With as sick as I get, I wouldn't just "eat it and deal w/ the consequences". I will never eat gluten intentionally. If it is an accident, that is a different story. Just explain to your friend that you really can't be sick in the next few days, and you would rather be safe than sorry.


ptkds

Mom of 4 beautiful girls (the 2 youngest are only 10 months apart!)
Diagnosed with Celiac disease on November 8, 2006; gluten-free as of 12-1-06.

DD#2 13 years old; diagnosed on November 28, 2006. gluten-free as of 12-7-06.
DD#3 9 years old; diagnosed through blood work in October 2006. Gluten-free as of mid-November and doing GREAT!!
DD#4 8 years old; had a scope done on 6-22-07 (at 14 months old) and the dr saw stomach ulcers, but all test results were negative. GI dr told us to put her on the gluten free diet anyway. She is gluten free as of 6-22-07.

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in a case like that, you knew it had gluten, so you simply say, "I really appreciate the effort that went into the meal, but I can't eat it. I'll still enjoy spending time with you guys, though!" And DON'T EAT IT!!!! you do not have to make yourself sick, and do bodily harm to yourself 'to be polite'.

in many cases, you don't know. which is why, if I don't know a friend WELL, and don't know that they really get the idea that gluten hides in all kinds of things, I'll often just say "I'll just bring my own food; I'm more comfortable with that." again, you do not have to risk making yourself sick and doing bodily harm to yourself in order to be polite.

in the case of a friend whom I am confident of knowing the diet, and who's worked with me on ingredients, I will usually let them cook, but will ask questions and offer suggestions, based on what they're cooking. it might be more 'polite' to stay quite, but you do not have to risk making yourself sick and doing bodily harm to yourself in order to be polite.

(they say you have to repeat yourself three times to be remembered... ;) )


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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I would never eat a friend's cooking if I knew it contained gluten. When friends offer to cook for me, I either say I'll bring my own food or I go over and help them prepare the food. That way I can supervise. I've got great friends, though. They'll send me the menu and recipes, I can reply with the potential gluten trouble spots.


Gluten-Free since September 15, 2005.

Peanut-Free since July 2006.

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My sister in law did that routine to her brother (my husband) --- peeling potatoes (a good thing) to make mashed potatoes BUT while she was peeling the potatoes she was eating gluten Italian bread and the crumbs were flying on the newly peeled potatoes, flying in the pot of cut potatoes. We were aghast (I tried to arrive there early on so that I could do that job but I couldn't get out of work early enough). So I pointed out to her that the bread crumbs shouldn't be in the same area of the gluten free food preparation. She casually answered, "Well the bread crumbs will come out when we drain the boiled potatoes!" We inwardly cringed and freaked out. In her case, it's a combination of "passive-aggressive" thing going and a bit of really thinking the crumbs can "rinse" away after they are boiled with the potatoes. I quietly rinsed off the cut uncooked potatoes one at a time to make sure that there was no residue of crumbs while she took umbrage that I was doing this (thinking I was taking too much precaution). Mike ate it and was Ok. But we never ate there again after that.


Husband has Celiac Disease and

Husband misdiagnosed for 27 yrs -

The misdiagnosis was: IBS or colitis

Mis-diagnosed from 1977 to 2003 by various gastros including one of the largest,

most prestigious medical groups in northern NJ which constantly advertises themselves as

being the "best." This GI told him it was "all in his head."

Serious Depressive state ensued

Finally Diagnosed with celiac disease in 2003

Other food sensitivities: almost all fruits, vegetables, spices, eggs, nuts, yeast, fried foods, roughage, soy.

Needs to gain back at least 25 lbs. of the 40 lbs pounds he lost - lost a great amout of body fat and muscle

Developed neuropathy in 2005

Now has lymphadema 2006It is my opinion that his subsequent disorders could have been avoided had he been diagnosed sooner by any of the dozen or so doctors he saw between 1977 to 2003

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Eating at others houses is the most difficult because you have an emotional attachment to the people you're visiting with and saying NO is so much harder (at least for me). But I always say NO if there is any doubt. Better safe than sorry.

I totally sympathize with you. We have a group of friends who really believe they understand gluten-free cooking and always make a big production of making a gluten-free meal for me. No matter how many times I tell them I'm more comfortable bringing my own food and prefer to do so they insist on making the entire meal 'gluten-free'. The problem is they use many questionable ingredients, don't always remember that things like soy sauce aren't gluten-free, cook things on the same grill, etc. To top things off they cook a huge loaf of bread and warm everything in the same oven and then put the bread on the same plate as the vegetables and serve it buffet style so bread crumbs cover every dish. I get around eating their food by eating before I leave home and snacking on the food I bring. I never eat their stuff and they are always dissappointed but insist on trying every time. I hope eventually they will get it and move on.

My friends have the absolute best intentions and I love them for being sensitive and trying but I've long passed the point of eating something to prevent hurting others feelings. I am only hurting myself if I do and I'm not willing to compromise myself.

I'd like to say these situations will get better over time but you're always going to have to deal with this. What will get easier is being able to say NO with conviction.


---------------------------------

MP - celiac for 10 years

 

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Eating at others houses is the most difficult because you have an emotional attachment to the people you're visiting with and saying NO is so much harder (at least for me). But I always say NO if there is any doubt. Better safe than sorry.

I totally sympathize with you. We have a group of friends who really believe they understand gluten-free cooking and always make a big production of making a gluten-free meal for me. No matter how many times I tell them I'm more comfortable bringing my own food and prefer to do so they insist on making the entire meal 'gluten-free'. The problem is they use many questionable ingredients, don't always remember that things like soy sauce aren't gluten-free, cook things on the same grill, etc. To top things off they cook a huge loaf of bread and warm everything in the same oven and then put the bread on the same plate as the vegetables and serve it buffet style so bread crumbs cover every dish. I get around eating their food by eating before I leave home and snacking on the food I bring. I never eat their stuff and they are always dissappointed but insist on trying every time. I hope eventually they will get it and move on.

My friends have the absolute best intentions and I love them for being sensitive and trying but I've long passed the point of eating something to prevent hurting others feelings. I am only hurting myself if I do and I'm not willing to compromise myself.

I'd like to say these situations will get better over time but you're always going to have to deal with this. What will get easier is being able to say NO with conviction.

I totally agree with you. I wasn't as proactive as I should have been and then had 2 relapses with this flu and now my old scarred right kidney is acting up. Fortunately I know what detox herbs to take (and have them boiled up) and soothing marsmallow root plus am eating some cranberries with stevia so the worst is over. I still have a headache and some tenderness but it seems it will pass. The burning has stopped.

However I really have learned my lesson the hard way. I cannot even have tea a food preparer has made up without reacting unless they wash their hands and have me open the tea bag. I just wasn't so reactive when I was regularly eating or being exposed to hidden gluten. But its worth it since my joints are now stronger and overall I am getting to be a lot healthier--and presumably will get back to that any day now. At least this damn flu/bronchitis is gone and over with!

From now on I am taking my ice cooler bag and thermos with me everywhere.

Yolo


Diagnosed celiac sprue as infant: failure to thrive & pneumonia-back on grains age 4. Began herbs 1971 combating chronic kidney disease/general ill health 1973. Avoid wheat family and "allergens" by 1980. Late 80's doc. diagnosed candida: cave-man diet. Diagnosed degraded myelin sheath 2006; need co-enzyme B vitamins. Discovered celiac fall 2007; finally told diagnosis as infant. Recently found I am salicylic acid intolerant. Ironically can't tolerate most herbs now. Can now eat brown rice & other gluten-free grains (except corn) & even maple syrup & now homeopathic medicine works! Am still exploring the shape of this elephant but I've made progress!

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I am starting to think its always important to bring some gluten free food anyway just in case its needed. You can put it in a small ice chest so it will keep in case you don't need it--and/or share it with others. This goes for eating at a restaurant too.

When I put on a potluck with poetry and art event I always make an inexpensive but good main dish and salad so I will have something to eat that I can share with others. Everyone loves it and gradually they are becoming aware there are people like me who need to be gluten etc. free and that, hey, its not so bad after all!

Yolo

I do the same. I am having a pot luck on friday for my mom friends (this is an regular Feb thing). I am making a Greek Briami and a gluten free chocolate cake so that I have a safe main dish and a dessert I can partake in.

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Hello all you lovely gluten-free people,

Let me first say hello as I am new to this community (Canadian) and also this way of life.

I was disgnosed with extreme gluten sensitivity a month ago now (yes----my specialist actually took the time to test me and when celiac blood test came back negative (haven't had biopsy...don't want it...) but I still had a ton of symptoms, he tested me further until he could give me an answer!!!) and so far things have been going...okay. I am a 25 year old student, and the budget is posing a bit of a problem as is finding the time to properly cook my own healthy gluten free meals...BUT I feel like my old self again, which is the proof to me that this is what I need to be doing, so it is all worth it I think!

Anyhoo, back to my original topic....

So, I went to a friend's for dinner. There were quite a few people there and it just so happens that another friend who came also has gluten issues, so the chef (our friend as well, the host) said he would cook a gluten free meal. Well, I arrived early and teh place smelled great! I asked if I could help at all and he gave me some things to do. While i was in the kitchen, I noticed him just tossing stuff in like bread crumbs (!!!) and sour cream and other random things. I asked him if this was a non-gluten-free dish, and he said "ooooh right...I'm sorry, I just totally forgot..." and so I got quite concerned at this point. I mean, I feel "bad" having to get him to go out of his way to make a gluten free meal even though I offered to bring my own food (he said NO way as he likes to cook anyway) but then it is also a pain because I know some of the dishes were glutened....and now, 4 hours later, I am feeling bloated and have bad indigestion, gas, and reflux.

My questions are: how do you handle going over to friends' places for dinner without seeming obsessive or rude? How do you ensure that your meal is gluten free? Do you just eat it and suffer later? (Although for true celiacs I know this is not really an option...)

Please feel free to add any other comments pertaining to this topic. Any and all advice is appreciated! Have a great day!

-Glutina

I sympathise with you. It is difficult to explain to people and while I agree with others on this thread that you need to take charge of your health and avoid food you cannot be sure about, I managed to not eat anything except what I brought at four parties over the holidays, but was not able to avoid refusing food at some newer friends when invited to join them for dinner. My friend is Japanese and wanted to provide a new experience for us. She tried hard to cook something that I could eat, gluten-free,CF, soy free but not knowing the ingredients of her salads was difficult to explain. I had a great seaweed/cucumber salad with a dressing which was probably made with a vinger/sugar, and my own gluten-free sushi, vegetables but I was sick that night, the next day and felt tired and depressed all week. I would have liked to question her more about ingredients (most Mirin is not, gluten-free and I suspect was the sweet vinegar in the dressings)but felt unable to trouble her when she had put on such a splendid spread for us all. She is very polite and sensitive, I think. She won't even cook any meat in the house for herself or husband because she says it would be impolite to her daughter who has chosen to be vegetarian.

Oh well. Next time I will get more involved in the preparation. Hope you feel better soon and have courage to say 'no thanks'.


gluten free 11/1/07

CF, SF, 02/08

posative Enterolab results 3/11/08

HLA-DQB1, Allele 0303

HLA-DQB1, Allele 0609

Serologic equivalent: HLA-DQ 3,1 (subtype 9,6)

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Hi again everyone,

Thanks sooo much for all the responses!

It is really nice to see that other gluten-intolerant poeple out there have ben put in this same situation and had the courage to just bring their own food and be firm.

I realize now that this is MY body and MY health, and people inviting me over for dinner will never really understand the hell I go through when I am glutened, despite their best intentions.

Also, you guys made me see that there is no need to just "put up with it"....I mean, it really does affect me badly for a few days after, as you all know. So for them it's a temporary thing and they think that a "pinch" of this or a dash of something else with gluten won't hurt because they think it's not enough. But the truth is, I know that I am very sensitive and therefor I should take charge of my own health and speak up.

Thanks for reminding me that this is my body and it is okay to say no to poeple and bring my own food....and that's just what I have to do.

Wishing you all a grrrreat rest of the week! Thanks again for the replies! I look forward to making this community a part of my new gluten-free life.

:)

-Glutina :D


-Recently diagnosed with extreme gluten sensitivity

-Celiac test results: negative

-In and out of hospitals and doctors offices for past 5 years with stomach/digestive issues

-Eating disordered past (this most likely triggered gluten issues G.I. thinks)

Symptoms when glutened: Diah. and Cons.; cramping/uncomfortable abdomen; rash on forehead; extreme fatigue; sometimes excruciating abdominal pain; feeling of weakness; acid reflux

**New to the gluten free way of living, but feeling like my old, healthy self again!!**

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Hi again everyone,

Thanks sooo much for all the responses!

It is really nice to see that other gluten-intolerant poeple out there have ben put in this same situation and had the courage to just bring their own food and be firm.

I realize now that this is MY body and MY health, and people inviting me over for dinner will never really understand the hell I go through when I am glutened, despite their best intentions.

Also, you guys made me see that there is no need to just "put up with it"....I mean, it really does affect me badly for a few days after, as you all know. So for them it's a temporary thing and they think that a "pinch" of this or a dash of something else with gluten won't hurt because they think it's not enough. But the truth is, I know that I am very sensitive and therefor I should take charge of my own health and speak up.

Thanks for reminding me that this is my body and it is okay to say no to poeple and bring my own food....and that's just what I have to do.

Wishing you all a grrrreat rest of the week! Thanks again for the replies! I look forward to making this community a part of my new gluten-free life.

:)

-Glutina :D

the other difficult thing with eating at friends and relatives and restaurants is that they usually have been cooking with utensils exposed to gluten, not to speak of pots and pans and counters... The best way to deal with this is to bring your own no matter what the host says. Tell them its a medical problem and you can't compromise whether they would be disapointed or not. If its not in a restaurant make enough to share so your friends can find out gluten free doesn't have to be bad or tasteless... Or maybe suggest a picnic instead...


Diagnosed celiac sprue as infant: failure to thrive & pneumonia-back on grains age 4. Began herbs 1971 combating chronic kidney disease/general ill health 1973. Avoid wheat family and "allergens" by 1980. Late 80's doc. diagnosed candida: cave-man diet. Diagnosed degraded myelin sheath 2006; need co-enzyme B vitamins. Discovered celiac fall 2007; finally told diagnosis as infant. Recently found I am salicylic acid intolerant. Ironically can't tolerate most herbs now. Can now eat brown rice & other gluten-free grains (except corn) & even maple syrup & now homeopathic medicine works! Am still exploring the shape of this elephant but I've made progress!

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