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We'Ll All Be Eating Gluten In About 15 Minutes...Sorry


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32 replies to this topic

#16 Welda Johnson

 
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Posted 16 January 2010 - 10:45 AM

Boy, you've gotten some good advice here. Your health is your number one concern. I'm sure your friends would miss you greatly if you were unable to be there because you were sick. At age 65 I've lost a lot of friends who didn't take such good care of themselves, and now I realize the importance of taking care of myself. I hope you find your value and self-worth, and are able to put that above any other concerns. My family & friends are now so used to me bringing my own food, that on Christmas Eve one of them explained to a newcomer who asked me what I was eating, since it was different than the other guests, "Oh she always brings her own food." Those words were music to my ears, because it has been 8 years of education to get to that point. Maybe you could transfer your focus to the wonderful news that you can eat and enjoy the foods you can, since many of us have other food intolerances as well as to grains. I, personally, can eat only meat, fruits & vegetables. All grains, all milk & dairy, egg whites, yeast, casein, whey, msg, and maltodextrin and modified food starches from sources other than corn are off-limits. Yet I am still grateful that I can eat salads, beans, corn tortillas, rice, tamales, chicken, turkey, beef, fish, and have even recently found a salad dressing from Walden Farms that has no grains, no milk or dairy, or anything else that is harmful. I'll be hoping that you will find happiness in your new lifestyle. I'll bet your family and friends will LOVE the new, more independent, determined and HEALTHY you! Please email me at welda@att.net if I can help in any way. Welda
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#17 Fiddle-Faddle

 
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Posted 16 January 2010 - 01:18 PM

Regarding your friends and family, there are two aspects where you do have some control.

While you don't have control over their lack of sensitivity, you DO have control over their ignorance. As said by other posters, you can educate them.

The other aspect is COMMUNICATION.

Yes, they know you have a problem with gluten. But you can communicate your situation very effectively by saying things like, "No, I can't prepare XYZ because I haven't yet learned how to make it without gluten. I can make ABC instead."

Notice how I didn't say, "Is it OKAY if I make....instead?" That would give them the opportunity to guilt-trip you into making what THEY want. I don't know if your friends would do that, but why give them the opening if you can avoid it while still being sweet, polite, friendly, etc?

If you are invited to THEIR house, tell them up-front, "Hey, since I can't eat gluten, how about if I bring something to share that I can eat, too? Would you like me to bring a main course or a side?"

I have to say, my friends and family have NEVER made me feel left out or uncomfortable. They have been fabulous. Sure, they've all asked the same question we all have, "aww, just a little won't hurt, will it?" To which I've replied, "darn it, I wish it wouldn't, but it really does very nasty stuff to me!!" And I agree with them that, yes, this is SUCH a big pain in the butt. And I try to do it all with at least a semblance of a smile. ;)

I never got nearly as sick as some of the people here (before starting the diet), but even so, those who knew the problems I had before the diet TOTALLY understood the difference it made for me.

I'm assuming that your friends and family are not the world's most insensitive clods, but that they are just new to the whole idea of food intolerances and how they can be as severe as peanut allergies. Many of us here have had trouble wrapping our minds around that fact! But if it turns out that they ARE insensitive clods, even after learning how it affects you, well, then that's a whole different ball game.

Hang in there--we're all rooting for you!
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#18 camprunner

 
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Posted 16 January 2010 - 03:27 PM

Thanks so much. I really appreciate the replies and there are lots of good suggestions. I will stock up on the gluten free pasta and I've been eying the Better Batter but I'm having a tiny problem with night shades at the moment. If I'm able to add them back into my diet, I will order it for sure. I have learned to make a lot from scratch and it pretty much comes second nature to us by now (been working on it since September of 09) but that's probably why it's frustrating and I'm not understanding others.

As for my mom, she admits she messed up so we may go back as long as it's clear that I will be bringing my own food. She is very money consious and feels that us bringing food is not good manners on her part. She also knows I like her vegetable soup that has noodles in it and she really wanted to please us (with the soup) and at the same time apparently set boundaries that I would not be "getting my way" with everything hence only offering me broccoli for Thanksgiving dinner when we'd offered to purchase the turkey. By the time we left, I'm sure she wished she hadn't.

My husband was really good about the gluten until about a week ago when I realized the pain I was in was probably from nightshades. It was his suggestion that the nightshades were causing the problem, but we were eating them at every meal and he's a little miffed that my diet is losing foods. I have talked with him about giving me a little warning about the gluten and nightshades but he's suddenly inistent that I shouldn't need time to mentally prepare for everyone else eating a food that I would like to be sharing.

On Thursday, we are invited to an italian covered dish LOL. That one is going to be fun but I have time to figure out what to bring and bring something that I can eat! Hopefully all will be fine. I know there will be gluten and nightshade filled food there by default but I've had time to think about that.
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HLA-DQB1 Molecular analysis, Allele 1: 0201
HLA-DQB1 Molecular analysis, Allele 2: 0301

Food Sensitivities: gluten, nightshades, soy
Gluten Free since September 2009

Self-diagnosed with doctor support based on DQ2 gene and some serious improvement on the gluten free diet.

Other Dx: Hashimotos Thyroidits

#19 Lynayah

 
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Posted 16 January 2010 - 05:37 PM

We all feel your pain! Many of us have gone through similar experiences and have had to learn -- sometimes over and over again, what works and what does not.

As someone said earlier, it really is all about educating those around you. If they don't get it -- REALLY get it, they won't know what to do or how to act. Part of the educating process is sticking to your guns, in an assertive (not aggressive and most certainly not passive-aggressive) way.

Many of us have special lines we use to help educate people. Some of my favorites:

"I'm so sensitive that I even have to use a separate can opener, toaster, chopping block, cookware than everyone else."

"I have to be so careful that I can't even allow someone to pass the bread plate over my plate . . . if even so much as one crumb of wheat falls into my food, I will be sick for at least a week . . . and the more often I mess up, the more the risk of additional disease and subsequently, early death, increases for me."
[/b]

That one works particularly well.

Most people just don't realize the ins and outs. For example, a good friend of mine said to me "You can have the pizza . . . all you have to do is take the topping off the crust and eat it!"

People just don't get it, unless you let them know. Unfortunately, many of us tell our family and friends we can't eat gluten, and then we expect them to take it from there. When they don't act appropriately, we get angry or hurt (and for many of us, a bit passive-aggressive) because they didn't understand . . . when in fact, we didn't take the necessary measures to educate them and/or stand our ground. That's certainly been true for me!

A favorite "trick" with many for being assertive is to use the phrase "I need you to understand that . . ." followed with "because . . ."

So, for example, with the chicken nuggets: "I really wish I could bring chicken nuggets, but I need you to understand that it would be difficult for me to bring them, because I am keeping a gluten-free kitchen -- even my cookware or hands touching it could make me sick . . . especially if I accidentally drop a crumb onto something or put my hand in my mouth without thinking about it."
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Gluten Intolerant with double HLA-DQ6. Pre-diagnosis: Weight gain, swelling, diarrhea, mouth sores, back pain, body aches, fatigue, muscle weakness, BRAIN FOG, runny nose, recurrent sinus infections, bruising, low white cell count (whole life), and more. My feet were so bad, I could hardly walk. Toward the end: Chronic Vit. D deficiency (almost no D in my body despite a quality multi-vit. each day).

There is hope! Gluten-free since Sept. '09, and I have my life back - I feel better than in many, many years!

Favorite quotation: "You must do the thing you think you cannot do." - Eleanor Roosevelt

#20 Lynayah

 
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Posted 16 January 2010 - 05:44 PM

I just wanted to add that, one thing that's worked for me when dining at someone else's house, I ask them to please, please not make anything for me and to please allow me to bring my own food. I will usually bring enough for everyone else, too.

I don't expect anyone to change a recipe or, well, ANYTHING just because I have to eat gluten-free.

The best part of this is that people feel free to invite me over all the time! Because they aren't intimidated by having to figure out how to cook for me, they relax and open the doors.
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Gluten Intolerant with double HLA-DQ6. Pre-diagnosis: Weight gain, swelling, diarrhea, mouth sores, back pain, body aches, fatigue, muscle weakness, BRAIN FOG, runny nose, recurrent sinus infections, bruising, low white cell count (whole life), and more. My feet were so bad, I could hardly walk. Toward the end: Chronic Vit. D deficiency (almost no D in my body despite a quality multi-vit. each day).

There is hope! Gluten-free since Sept. '09, and I have my life back - I feel better than in many, many years!

Favorite quotation: "You must do the thing you think you cannot do." - Eleanor Roosevelt

#21 ravenwoodglass

 
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Posted 16 January 2010 - 05:54 PM

On Thursday, we are invited to an italian covered dish LOL. That one is going to be fun but I have time to figure out what to bring and bring something that I can eat! Hopefully all will be fine. I know there will be gluten and nightshade filled food there by default but I've had time to think about that.


See if a store near you carrys Tinkyada (I think that's the spelling) pasta. They make lasanga noodles. Just make it like you would with wheat noodles. I bet no one knows they're gluten free if you don't tell them.
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Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying
"I will try again tommorrow" (Mary Anne Radmacher)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

#22 mushroom

 
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Posted 16 January 2010 - 06:14 PM

I would think a lasagna would be great too, the white one with the bechamel sauce and spinach and mushrooms, and three cheeses. It is so yum.
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Neroli


"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein

"Life is not weathering the storm; it is learning to dance in the rain"

"Whatever the question, the answer is always chocolate." Nigella Lawson

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

Caffeine free 1973
Lactose free 1990
(Mis)diagnosed IBS, fibromyalgia '80's and '90's
Diagnosed psoriatic arthritis 2004
Self-diagnosed gluten intolerant, gluten-free Nov. 2007
Soy free March 2008
Nightshade free Feb 2009
Citric acid free June 2009
Potato starch free July 2009
(Totally) corn free Nov. 2009
Legume free March 2010
Now tolerant of lactose

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#23 mysecretcurse

 
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Posted 17 January 2010 - 08:02 AM

All I can really add is you need to make your pity party short and turn it into what IMHO it should be anger. These freinds and family are being nothing short of cruel. You need to sit these folks down and hand out some info on celiac, the reactions, the extra kitchen precautions we need to take and the the length of time we feel the results of a glutening. If they don't understand and show some compassion after that they are not worth your time.


Thanks Ravenwood for saying just what I wanted to say...

These people don't seem to love you very much, OP... I'm very sorry for that and very sorry for your pain and you have every right in the world to be angry. My family and friends have been noting short of wonderful and supportive to me. There were times in the beginning that they didn't understand the seriousness, etc and needed some education but they were always willing to listen. Hell, some of my friends have even gone gluten free themselves out of support or just from learning about how icky gluten is. And NO ONE in my life who loves me or cares about me would ever, EVER expect me to touch, bring, or even be around a gluten meal. All of them eat gluten free when in my presence.

I'm only telling you all that so you know the supportive wonderful people who DO exist in this world and use that as a comparison for how you are being treated. This is pretty jacked up, you should be pissed off. I realize you are stuck with your family no matter what, but if something doesnt change with these "friends" Id say find better friends.

Good luck! <3
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#24 Takala

 
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Posted 17 January 2010 - 12:05 PM

Polenta (gluten free corn meal mush) and Risotto (creamy cooked rice casserole) are famous Italian dishes..... so is Pesto sauce over rice pasta, the Pesto being made with basil, garlic, chopped almonds instead of pine nuts and extra virgin olive oil, you should go to Recipezar or whatever that cooking website w/ recipes is called, and pull up some authentic Italian dishes, not "American Italian," which is just Tomato Sauce Over Wheat ad Nauseum.

If you can eat peanuts, you can do a killer Thai or oriental style peanut sauce over rice noodles, too. San J makes a gluten free soy sauce.

Many Asian Indian recipes using lentils, rice, potatoes are gluten free as long as you are careful to use spices with out it. Be careful with yogurts, if you can eat dairy that is low in lactose, because some yogurts are not made/aged in a way that gets rid of it. I can eat hard cheeses without a problem, but still react to some yogurts and have had some exasperating reactions to some that were supposedly gluten free.

You have to politely but firmly lay down the law with all clueless people, that you don't eat food that makes you sick, end of trying to co- opt you into doing otherwise, because otherwise they will continue to try to do just that.

Keep a bag or a lunchbox in the kitchen or hallway entry packed w/ non perishable gluten free snacks, (can include single size, personally packed, rice noodles or instant rice, that you just add hot water to) that you can just grab on your way out the door. If you get in the habit of always packing safe food, you can avoid all excuses to make yourself sick just to please others. And you can share with others as an educational device when they complain they're hungry....
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#25 camprunner

 
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Posted 17 January 2010 - 03:12 PM

Thanks for the posts! I am definitely going to use some of these ideas!
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HLA-DQB1 Molecular analysis, Allele 1: 0201
HLA-DQB1 Molecular analysis, Allele 2: 0301

Food Sensitivities: gluten, nightshades, soy
Gluten Free since September 2009

Self-diagnosed with doctor support based on DQ2 gene and some serious improvement on the gluten free diet.

Other Dx: Hashimotos Thyroidits

#26 gabby

 
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Posted 18 January 2010 - 04:36 AM

Thermos! Thermos! Thermos! I have several in various sizes (tall, thin, wide, short, big, little) and I take one or two along whenever I go to a dinner or someone's house. I fill it with whatever I feel like eating: sometimes it has hot soup, or hot stew or hot risotto, chili, creamy polenta and sauce, gluten-free noodles and sauce, etc. Everything will stay hot and delicious for around 8 hours. I will also bring a smaller thermos that has my own hot coffee or hot tea in it. I always explain ahead of time to people that I'm bringing my own food.

If I want to eat something cold, then I bring my lunch-sized thermos bag that will keep things cold for a good 4-6 hours. In there I'll stash cold drinks, or cold chicken salad/tuna salad/gluten-free noodle salads, veggies and dip, etc.

I always carry a knapsack with me that is always stuffed with things I might need including: fresh washed fruit, nuts, safe popcorn, etc. Plus I always carry my own little stash of cutlery, small plastic plates, safe packets of salt/pepper/condiments/sugar, a bottle of water. If I need any of these things, I just get them out. If I don't need these things, I leave them in the bag and use them at a later date. The point is that I'm always prepared. The first 2 or 3 times people see you drag out your knapsack, they'll comment on the strangeness of it. But by the 4th or 5th time, they won't even blink an eye. Seriously.

Hope this helps!
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#27 captaincrab55

 
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Posted 17 December 2011 - 05:23 AM

I do not necessarily expect the world to revolve around my diet, however I do expect people to consider my feelings.

Mostly just hurt that these are all people who are supposed to love me and don't understand.

camprunner, Your issues with pizza & other foods at home are issues that can be worked out... On the other hand, going out to visit friends and family can create issues... Trveling to visit can cause bigger issues... I have 2 simple rules; True Friends and Loving Family Members will accept me to judge their food, "As safe for me to eat or allow me to bring my own food" or stay at home... True Fiends and Family will miss you and then work out the food issue with you... I find that people who ask what they need to do to prepare a meal for me, are usually ill equipped or lack the ability to comprehend the total picture of details.. So Rule #2; If they need to ask how to prepare a gluten free dish or meal, I just assume they can't pull it off and offer to just bring my own food... I suffered way to many years to chance eating food prepared by someone trying to accommadate my diet without knoweledge of gluten free food prep... I will trust my Daughter's cooking...
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I'm a New Man Without GLUTEN!

#28 Elizabeth5220

 
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Posted 17 December 2011 - 06:22 AM

I like to use analogies...and I while allergy is not quite accurate, for many uneducated, non-celiacs, it makes sense. Tell your family that while some people are allergic to peanuts, you are allergic to wheat. You get sick if you eat it. Ask them if they would give booze to an alcoholic? It's not quite the same thing, but you get the picture... :)
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#29 Cathey

 
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Posted 17 December 2011 - 09:32 AM

I'm sorry your having such a hard time with family and friends understanding your health. Remember NO ONE can take advantage of you unless you let them. Take as much pre-made food as you can with you to eat, make meals and freeze them, pack in ice and travel keeping in mind your health is the most important thing and have an enjoyable Holiday.
I was just speaking today to my son, Christmas Eve has been moved to my brothers instead of my sisters. My sons response "guess you have to bring me a meal". He and my niece are Vegetarians, where ever we go I always bring several dishes for them. Last time my SIL had nothing for them to eat. That's why I always bring my own for them. This year Christmas Eve my sons girlfriend is flying in and she is also gluten-free. She is revealed to know our home is gluten free. Amazing how accommodating some family members can be, Thanksgiving my other sister when above and beyond to make sure I would not be CC in her home.
Have a wonderful holiday and plan ahead, don't worry about how they will feel if you don't eat their food, you are the most important one.
Cathey
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#30 mamabear272

 
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Posted 23 December 2011 - 06:17 AM

I have to say that this post infuriates me! :angry: My family isn't very understanding of my disease but they NEVER tell me I can't bring gluten-free things to functions. My friends are really goo about making sure they have plenty of gluten-free items for me and in my house, my hubby (when he makes dinner) makes it gluten-free. I just can't imagine friends and family being quite that un-accepting. You have to take care of you and if your family doesn't get that then I wouldn't visit them!
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Molly
dx: celiac sprue 6/7/2011 via blood test and biopsy
gluten-free: 6/7/2011




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