Totally Glutened...

[pixiegirl]

Well, every year I go to thanksgiving at my brother's house. I've only been gluten-free for 6 weeks, well now I'm back to square one. Sigh, its depressing, I was in Florida for 5 days and the nights we ate out I did better then eating at my brothers house.

I know everyone, including myself, is new with this, but I really felt a few times like it was just too much bother for everyone to watch out for me. They would stir a pot with "gluten something or other" in it and then stir my gluten free food. The turkey was stuffed and on Thanksgiving I ate meat from the outside of the bird but after that they tossed it all into one big tupperware thing and there was stuffing that was stuck on some of the turkey mixed in, so I could eat turkey after that.

Everyone kept telling me, "oh its just this one time" or "it can't hurt you on just one trip"... blah blah blah. No matter how many times I told them it never sunk in. At one point, again this is new to me so I was asked a lot of questions about being Celiac... and I told them 1 in about every 133 people have some sort of wheat/gluten intolerance and everyone at the table came down on me. No way, I'm wrong, they have never heard of it. Twice I was told I was a pain in the ass (by the same person). I got the distinct feeling they all thought I was making it up. Most of my life I've been very healthy and yet I was called a hypocondriac a few times. I never get sick, I never read about something and then "get it" I've never been close to being a hypocondriac!! I was really hurt and I'm not that easily offended.

And of course along with all this I've got the runs back and all my stomach problems, I know I was glutened every single day to various degrees. I'm home now and so so glad. Its my family so I'll give them another chance but it won't be for a while, this was waaaaay to much for me to handle.

Sorry for the whine....

Susan

[darlindeb25]

susan---you were doomed when you ate the turkey --it cant have stuffing in it at all for us to eat it--we cant eat from the outside even and when you saw them stirring your food with the glutened spoon , you should not have eaten it either---you arent being rude or anything like that--you are just taking care of you and that is the way it has to be forever and ever--you have to take care of you and you havent ruined weeks of work--you just messed up for a few days and just stay gluten-free and you will get better again--if you are with them all at christmas--you just have to "stick to your guns" and refuse to eat anything containing gluten--this is your lifestyle and they will have to get used to it--feel better deb

[dmchr4]

I'm really sorry your relatives just don't understand and don't want to listen! That's gotta be so hard.

So maybe in your Christmas letter to your relatives you can include a celiac article from a "reliable" source (since YOU obviously aren't one - according to them anyway).

Here's one: Open Original Shared Link

Here's a list of articles:

Open Original Shared Link

Or there was another magazine article that come out in June or July I think that mentioned the 1 in 133 statistic and the average time to diagnosis as 20 years that was in Time or another major magazine like that but I can't find it.

There was also an article in the Reader's Digest this past summer about 10 diseases that doctors miss, and celiac was one of them.

Or maybe you can just have the article on hand next time you see them and if they try to tell you that just a little bit won't hurt you, you can give them the article.

Good luck!

[tarnalberry]

Don't let yourself be guilt-tripped by the ignorant any longer. Nor physically harmed by them! While even I (who often profess to having fabulous family who may not have heard much of this, but accept it even when it's a pain) felt a bit bad about always checking on the double dipping situation and so forth during Thanksgiving (I did the cooking, I was worried about the pumpkin butter on the bread!), at the end of the day, we need to have the confidence that we've made the right choice for us, regardless of what others think.

We are nitpicky about this because our bodies are giant chemical vats, and chemistry is nitpicky. What anyone else thinks is irrelevant to the choices of what you put in your mouth once you have decided that you are doing the right thing. It's great that you'll be giving your family forgiveness, but I hope we can help give you some steel rods in that spine! ;-) :-D

[mommida]

I never thought I would find more patience and understanding from strangers, rather than my own family. My family who should be tested for their own health, will not.

I could complain about them for hours.

This is my body and now I know how to keep myself healthy. No one will put my health at risk. My family is not allowed to touch my food. I will bring my own where ever I go.

Laura

[pixiegirl]

Thanks everyone for all the replies... Laura if you want to complain I'll be happy to listen, I'm feeling the same way about my family right now, sigh. I'm actually thinking of skipping Thanksgiving next year and doing it here with my daughter.... because in truth if I would have stuck to my guns I'd not have been able to eat virtually anything.

Eating in my family is.... well its how we socialize, it always has been, I know most of your families are probably the same but mine takes it to a different level for sure. Other then Turkey day we ate out every single evening (leftovers were for lunch) and as you all know its hard in restaurants.... no one in my family would even consider going to Outback or PF Changs, I'd guess they have never been in one and they wouldn't go. All meals are eaten in small very nice, very expensive restaurants (however I honestly felt more concern about my condition in the restaurants then at my brothers house), with wine flowing, appitizers, bread, many courses, dessert, coffee, after dinner liquores... food is what we do... we have a number of food reviewers (journalists) in the family.... anyhow, in truth I just don't fit in like I use too.

Any how thanks for the kind words... I can't wait for my symptoms to go away!

Susan

[dbuhl79]

Susan,

I just wanted to offer a few words of support! At least you have this forum backing you! I know its tough, with a family of "food lovers". Personally I come from a family of bread/carb loving fanatics. We all grew up with a mother who had a loaf of fresh homemade bread in the oven almost every morning! Now that I've expressed to many family members my possible issues with gluten I've heard many respond "Oh I could never live without bread!!" So I know it can be tough getting them to accept your disease.

My other suggestion would be to explain to them how awfully ill it makes you, in significant detail. Not everyone wants to talk to freely about their symptoms or reactions to gluten, but its seemed to work well for my family! Once they've heard some of the "gorey" reactions I've had to ingesting it they seem to understand that I'd rather live without that misery and survive without the luxury of bread.

I wish you luck in their ability to grow and understand your situation and what you can and can't have. It can be tough, but the relief you receive should be worth the agony they may put you through in the process of their learning. They can only refuse to understand it for so long.. Its just the time in between may be tough!

Good luck!!

[Guest imsohungry]

Awww, Susan (((HUG)))

First of all, it is hard. You probably did exactly what I would have done in your situation! Actually, we gathered at my mom's house for thanksgiving for breakfast. She made a huge breakfast and tried to cook me plenty of gluten-free things Unfortunately, she made a breakfast "buffet" and placed all the food together like a long salad-bar for our family to serve themselves (there was about 20 of us). Cross-contamination was everywhere!

However, she had tried so hard, that I HAD to eat. (She was so proud of herself for working to make gluten-free food...it was so sweet). So, I ate. (I did explain about the spoon cross-contamination thing for next time). But like you, I know I was glutened (I felt it).

My point is...sometimes you feel you gotta do what you gotta do. I understand your "need" to eat something...even though you knew it was going to make you sick. I just hate it for you that your family was soooo rude (I hope that doesn't offend you)...but they were acting like as*holes to you!

I'm sending you hugs and hoping the next holiday is better for you. Why not pack a little something in your purse/suitcase as a "stand-by" for the nights that they all go out to eat?

Much hugs. -Julie

[deedee1022]

I truly feel for you. I've only been gluten-free for 2 weeks, having been diagnosed on 11/11, and I'm already dreading the family visits (of course, when THEY are being high-maintenance for a dozen different reasons, that's different!)

It's great that we have places like this where people understand! I don't know how I'd be starting out on this long journey without it.

we understand

[pixiegirl]

Thanks again everyone!! You all made me feel better, I don't know how we all survived before the internet.

There were times where my family was a bit rude but I think some of it (not all for sure) was just due to the fact they have never even heard of Celiac before, I guess it all takes some getting use too. But I have told my mom that I'm thinking of doing Thanksgiving at home next year.

Eating other meals at my brothers house won't be as difficult, he is a fabulous chef but at home they often eat very simply, grilled fish, veggies and rice... I will say the nicest person was my brothers girlfriend (of 7 years, girlfriend sounds so insignificant) she was very careful with the other meals and told me all the ingredients of their marinades and such, so that was very nice.

Thanksgiving is such a gluten heavy meal.... Oh well, thanks for your support!!

Susan

[Peggy33]

I totally know how you feel. I was in the kitchen making sure any cross contamination didn't happen and my 76 year old grandma rolled her eyes, like I was being to paranoid or making up my sickness..

Luckily my mom understands and tried very hard during my visit. I have been gluten-free for a couple of months now. Good luck. Something we will have to live with for a very lond time

[bklyn]

I totally relate to relatives who don't get it. Just yesterday, my husband said to me "I don't think you really have this disease" How about that! He was in the room when the doctor showed me my biopsy! This attitude is because I do not react to gluten. I was totally shocked. I will be going to the Celiac Center at Columbia University so I can positively justify my diet.

[Guest imsohungry]

I've learned something over the years.

There are two types of insensitive people:

1. Those who are simply uneducated and ignorant to a problem

2. Those who are educated and choose to be rude

The good news is that there is HOPE for those who are uneducated and willing to learn

The bad news is that those who are educated and choose to be rude have made a decision to remain that way.

My point??? Some people/relatives are uneducated about celiac disease and ignorant to the problems and complications that it creates. For those people, we must be patient and educate them to the best of our ability.

Now, some relatives will take this new knowledge and work to incorporate it, others will go through a period of denial, and still others will choose to ignore the issue completely.

I try to remember that, in a way, my relatives are going through the same stages I did when diagnosed. First I was curious and wanted to know more information, then I was a little relieved and scared, then I wanted to cheat "just a little," then I got irritatated that this dang diet is such a pain in the butt, and now...I'm gradually learning to work with it and actually enjoy the learning and the results (feeling better)!

I send hugs to you all. -Julie

[dbuhl79]

Julie,

What a great perspective to take. Thanks for posting that. I think I'll utilize that in my strategy to dealing with relatives and friends regarding my new gluten-free lifestyle. I know I have a few ignorant friends who just won't understand, and well so be it.

Thanks!

[Maggie1956]

Hi everyone.

Well, I've been gluten-free for just one day, having received the results of my biopsy and blood workd two days ago. which confirmed why I have had pain and problems since I was a baby. I'm now 48! So, it's a final relief....(well, at least I know now).

With Christmas coming up, there's going to be get-togethers with family and friends. Some of them are great, and understand about coeliac disease and gluten intolerance. While others we will be having a meal with are totally ignorant, but sweet people. I'm hoping there will be food there which is ok for me.

This forum is awesome. I've already found a lot of information which is helping me understand celiac disease more, and the diet.

Are there many of you who have an intollerance to rice as well as all the other things? I'm finding it hard to find a breakfast cerial here. I guess I could make myself a baked custard or something else, but I'm often really tired...I also have chronic fatitue so I usually want something quick and easy first thing in the morning with my cuppa.

Hope I haven't raved on too much. Good luck to you all.

Maggie

[darlindeb25]

welcome maggie---where are you from---i take it rice bothers you, that could limit the cereal you can have--there are corn cereals----if you can eat rice, post fruitty and cocoa pebbles are gluten-free---health valley has rice or corn crunch ums, they are similiar to chex's--there's gorilla munch---cranberry sunshine--i eat quaker cracker jack corncakes (only the original, not butter toffee, it contains barley) with peanut butter and quaker caramel corn cakes are good too--my dad is into scrambled eggs for breakfast, he doesnt like any of the cereals---- you have found the best forum for questions--we are a good bunch of people in here and i think many of us have become friends through here-- deb

[cdobbs]

hello everyone,

well i also understand the whole family thing. my grandmother made thanksgiving this year and it was 99% gluten-free. my mother and i provided the turkey,bread and cornmeal for the stuffing. my grandmother worked her behind of so that my parents and my family could eat gluten-free. it was the aunts that cause a fuss. my aunt called and was griping about how the dressing was going to taste gross bc it was gluten-free. my grandmother explained that it is the exact same as non gluten-free except we had to provide the gluten-free cornmeal. she couldnt grasp that. she was so mad that she brought her own dressing. that caused an even bigger fuss bc she had to do that. my mother also baked all the pies and to my aunts surprise they were pretty darn good. but all the other non celiac members were upset bc she made it all gluten-free for the 5 of us. when there was 10 of them. but my grandmother stuck to her guns. she even let eneryone know that if the spoons out of each bowl left that bowl sh ewas going to let them have it. i think she has been more supportive of the whole thing bc of how sick my dad has been. she has watched him go in and out of the hospital. shes already lost one child and now has my father with celiac disease and one of my aunts with some deteriorating disease. it turned out to be wonderful. every year our family fights over the chocolate covered cherries my grandmother makes and in the end i nicely stole my aunts 4 cherries she had hidden in the kitchen. revenge is tastefully sweet in this case. i hope you get better and that your family will one day come to understand that gluten is gluten no matter how you look at it.

christi

[Pegster]

My Thanksgiving started out with rolling eyes and "You're not doing that diet thing TODAY are you?" Followed by a spoon covered with flour being shoved into a casserole that I would have been able to eat! Also my hostess had promised a turkey breast on the routisserie with no stuffing in addition to the stuffed bird but CHANGED HER MIND! (Didn't think anyone would eat it). Boy was I cranky!!!

[Maggie1956]

Sorry Deb for not posting earlier. I got lost!

I'm in Australia. Yes I do have a problem with oats, rice, maybe corn, I know peanut butter is out

I tried a rice ceriel, which ended up tasting like a really badly made rice pudding.

That was before I realised that rice makes me really sick as well.

It seems that we don't have the great variety of cerials that you have..I may have to immigrate!

I've been having scrambled eggs...boring! I see a dietician in two weeks, so maybe she will help me get started on something which fills me up, but doesn't make me sick.

Now, I'm trying to think of something nourishing for lunch. I tried gluten-free bread. I didn't like it at all. I'm not a bread eater anyway, so I probably won't miss it too much.

It will be great to feel better. I'm looking forward to that!

Maggie

[tom]

With Christmas coming up, there's going to be get-togethers with family and friends. Some of them are great, and understand about coeliac disease and gluten intolerance. While others we will be having a meal with are totally ignorant, but sweet people. I'm hoping there will be food there which is ok for me.

Maggie,

Many times i just eat before i go. I've found it far easier to not expect any suitable food at all, and i have a MUCH better time than reading all the ingred labels and having to decide whether to bother correcting person X's "so it's an allergy?" question and wondering whether any backseat chefs thought 'it needed a little more ______' and used a non-gluten-free version of an ingred while a gluten-free brand sat nearby. And on and on.

I'm better off just leaving the issue at home and enjoying myself.

This'll be my first xmas gluten-free, and now i realize i don't really know what i'll do. I'd like to bring something to eat at the table during THE dinner. Hmmm 23 days to figure it out !

[wclemens]

Hi,

Somebody asked me what I had for Thanksgiving at my daughter's house: TURKEY! It was great--so moist and flavorful. And I sat quietly enjoying it as the others ate. I eat mine with lots of Kraft Mayonnaise on it. No one gave me a moment's trouble. Of course I've had years to help them get used to the idea that most foods are poison for me, so that helps (I'm intolerant of all grains, milk & dairy, egg whites, and yeast). I've managed to lose about 20 pounds and keep it off, so that helps too, while everyone else is always struggling with their weight.

Here's the part I really like--I went shopping and bought oranges for Ambrosia Salad (it also has cocoanut & walnuts), canned pumpkin to mix with egg yolks and brown sugar to bake, raspberry sorbet and vanilla soy ice cream to cover with pecans, my own turkey, and a few other things that sounded good, then I prepared them before I went to our family dinner, so when I came home I celebrated my own little Thanksgiving, all by myself, after having a beautiful day with my family.

The topic of food never came up in a negative manner, and this is a true triumph, because last Christmas I even bought each family member a Celiac home test kit from Enterlab, at $118 each. When they mostly didn't get used I learned there has to be a better way than talking, so I have resolved to just be the most positive, healthy-looking individual I can be, taking care of myself in such a way that I really will be healthy, and that's the hard part. I'll take my own bag of food anywhere. It doesn't matter to me anymore what anyone thinks. I'm not breaking my diet for any reason. And this week, when exhaustion set in, I isolated to my home and took good care of myself. Now I'm feeling better, so I can help take care of others too. Welda

[gypsyfey]

Believe it or not Maggie, many cold cereals are gluten free. Of course you have to go over the label pretty well.

I was pretty lucky for thanksgiving, my inlaws are also gluten-free and we went to their place. My own family on the other hand thinks i'm exaggerating, or overreacting or whatever....my mom has made a point to look for gluten free recipes for me for my holiday baking. But the rest of the family just doesn't get it. I think they look at it as a 'diet', something that you can cheat on when its inconveinient. But really, I'm the only one who has to understand, its my body my choice and my pain.

If you end up going somewhere for Christmas that doesn't have safe food, you might try bringing your own. You can always say that you didn't want anyone to have to go to any trouble because of your ILLNESS. Let them know that Thanksgiving made you sick for days. They will get it or not, but you won't be at their mercy.

[pixiegirl]

Wow, I'm glad I started this thread, its really made me feel better to know that its just not my darn family. I'm actually considering next year to fly into my brother's house the day after thanksgiving... everyone stays for a few days after and that way I can eat good food and still see everyone.

Since Thanksgiving I've spoken to my mom and sister in law about the holiday... my sister in law says don't be mad at everyone, life is too short, and I agree, I'm not mad I was just disappointed. My mom..... sigh.... well she listened to what I had to say and agreed with me and said she is still learning about Celiac and will be more intuned to my diet issues without nasty comments, which of course was good. But then she said maybe you shouldn't be so sensitive.... well I was sick for 5 days, it tends to make you a bit sensitive! Oh well. We'll see how it goes.

Thanks again, Susan

[Maggie1956]

Thanks Tom and Gypsyfey for your ideas of eating before going out to a friends place Christmas night, and also for the suggestion of taking my own food with me.

They are great ideas that I will most likely take up.

I went with my husband tonight to his work Christmas party. I was glad when the waiters brought out trays of food, as it meant it was a 'help yourself' thing, rather that having to eat what they gave you.

Well, I tried to be sensible. I had salad (it's summer here in the land Down Under) , one baked potato (not a good choice I don't think) a couple of oysters, and roast lamb with mint jelly.

I have 'that feeling' in my tummy now, and know there was something (s) that must have had gluten. I feel as big as a house, and really windy.

I reckon it sounds like a REALLY good idea to eat before leaving home in this situation, and I will strongly concider taking some 'good' food with me on Christmas Day.

Maggie

[ssantori]

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