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nonnarae

Astonished By Insensitivity

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Since being diagnosed with celiac disease, I have read so many accounts of non-supportive family and friends. I had never experienced it first hand though. I thought I understood and could

 

sympathize with others in this position. I was wrong!

 

I have two sisters from my father's side of the family. I have seen them maybe 5 times in the past 25 years. Most of our interaction has been over facebook and such things. We really wanted to spend some time building a stronger relationship. We decided to go on vacation. They came my direction from ohio and florida. We made plans for a trip even farther west than where I live to Cali. As we planned I was very clear 
" I must have a room with a kitchenette." I will bring all my own pots and pans and such things, but I will NEED to cook my meals at the room or have a cooler of things that I can eat with us. I am very sensitive and have not had great success in eating out. My house and car are COMPLETELY gluten-free. " I was trying to be understanding and even said " You two can take my car if you want to eat out. I know that for a lot of people that is a big part of vacation." They seemed all on board and excited about saving money by eating in some etc.. 

 

Then came the airport pick-up. We stop for snacks. My sister picks up chex mix with cheez-it and pretzels in it. I was like oh you can't eat that in my car or in my house. I then pointed out the lays and the ruffles and fritos, cheetos etc.... all gluten-free snack options. Oh I love lays chips and fritos etc... But I want these. Ok you can eat them on my porch. REALLY? yes really.

 

. I made Lemon poppy seed muffins and blueberry muffins ( both of which they requested the flavors) that I have served to people not gluten-free that never knew and ate multiple muffins. for the car ride. I even found a completely gluten-free resteraunt in Hollywood for us to try . Only the Absolute ATTITUDE  I got about having to go out of the way and WASTE 20 extra minutes to go there was so Overwhelming I allowed myself to be cowed into once again trying to eat out in a reteraunt they wanted to go to. 30 minutes of them picking things like Pizza parlors that I had to say I cannot even attempt to eat there I finally exploded and was like

 

 " I told you not to worry about me just pick a place to eat and I will go on my own and find something I can eat!" ( we were walking in an open air market area) They looked at me like I was so crazy and mean for getting upset when they were trying so hard. So they went and got two whole pizzas and I went and found a sushi place. (This was usually a good option for me) After about 45 minutes I got a little nauseous and a lot of GERD ( my first symptoms of being glutened). The next day we ended up at a taping. Again we couldn't bring our own food in so I eneded up eating a snack bag of fritos while they ate burgers, fries and wraps. No biggy. It was noones fault. We didn't know.  after the taping I NEEDED food. I wanted to stop at a gas staion to warm up my hamburger ( I had brought pre-cooked burgers and buns) only they were not hunger and just wwanted to get to the next hotel that was 2 hrs away. 

 

Now I have to wait 2 more hours. We get tot he hotel I want to get to the grocery and make some food I feel safe eating. Oh no they want to go to the beach. I put my foot down. I am going I need to eat. They go with me. After I get stomping and slammed doors because they missed the sunset on the beach because I " rolled  eyes" just had to go to the store right then.

 

I look over and on the table is a crumpled crumby cookie exploded all over the food preparation area. I almost cried. 

 

When I finally tried to open a conversation I got "We washed our hands and tried to keep our food away from you. Its our vacation and we are not gluten-free so we should not have to deal with your problems on our vacation!"

 

Really, you cant eat your cookie outside or your pie in the restaurant. Those things were so dang hard so that I could enjoy a pain free healthy vacation.

 

Anyway I decided to come home a lone and they could not have to deal with my illness interfering with their need for cookies and pies. Now they are calling me crazy and told me I don't deserve to breathe because I left them there.  

 

I feel somewhat guilty about that, but they were sneaking their crumbly cookies and cheez its in my car. CRUMBS everywhere that I put my groceries! UGHHH. They didn't want to respect my property or my health or make any sacrifice to have me with them. I gave them what they wanted. To bad they now have a new set of issues to deal with like renting a car ( both are capable of for sure)  and now finding lodging for the next 7 days. 

 

They also have lost any opportunity to have any relationship with me. 

 

To those of you that have to deal with this sort of insensitivity and lack of concern on a regular basis..... My prayers and thoughts and love to you all.  

 

 

 

 

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i'm sorry :(  i feel ya, been there, done that <well, not exactly that, but i know the feeling)  people are always so: " oh, it'll be NO PROBLEM !  you'll be fine, we'll find a way around it, BLAH BLAH BLAH BLAH"  but when it comes right down to it, they DO have a problem with it.  and the attitude??  PUHLEASE!  wow, i'm so sorry you feel so bad for me that you find it hard to go enjoy your restaurant.  no, i don't want to go watch you eat things (ok, if i hafta watch, and it's something i like to eat, sorry, i'd rather watch cartoons somewhere else, thanx)  NO, I DON'T WANT EVERYBODY TO STAY HOME JUST BECAUSE I DON'T WANT TO EAT A TURKEY SAMWICH IN THE CAR.  ugh, excuse the hell out of me.

 

now, i allow gluten in the house, we just make sure to keep it in a separate area and to clean up afterwards.  but, people are nervous eating at my house, so now nobody wants to come and stay.  WHAT?  just make a freaking sandwich, i have separate cutting boards and gluten pans i keep for the mister, IT'S NOT THAT HARD.  but, i guess it is......  

 

and, don't even get me started on people who can't get past the 'o, i know where there's a whole foods and they have lots of gluten free stuff' people when you're talking to them.  i'm like:  my store is good.  i just eat plain food.  and this one person in particular, wow, it's hard not to tell her where they sell diet foods, as she is 300 lbs and has diabetes to the point she is losing her eyesight!!!!  and that's the only thing some people can think of to talk about.  nevermind that i volunteer for numerous community organizations, nevermind my never-ending love for music and cartoons and bad movies.  nevermind i just grew the mammajamma of all green pepper crops, etc etc.  you look at me and all you can remember is that i can't eat gluten??  talk to the hand.

 

so:  i'm sorry my disease is such an inconvenience to you.  

 

((((HUGS))))  people suck.

 

thank you for letting me rant.  i was going to start a rant thread, anyway, lolz i'll go on vacation with you :)


arlene

misdiagnosed for 25 years!
just as i was getting my affairs in order to die of malnutrition...
gluten free 7/2010
blood test negative
celiac confirmed by endoscopy 9/2010

 

only YOU can prevent forest fires - smokey t. bear

 

have a nice day :)

Celiac.com - Celiac Disease Board Moderator

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(((((Hugs))))

That sounds awful. I'm really sorry that happened to you. Last summer a big gluten eater stayed at our house and glutened me. She just doesn't get it. As she's eating a quesadilla from Chipotle she asks if I want some. Ummm...no I can't eat that. It has gluten. Well you can have the filling. Umm no, it's sitting on the gluten? Urgh! The 4th day she was here I got sick and was sick for 2 weeks. I had only eaten food at home...but I got cc'd by her. She's constantly eating crackers and cookies and getting stuff everywhere. Learned a lot from that though and changed how I handle people and their gluten.

We should all go on vacation together...We'd all get it. That would be so cool.


January 2014-Celiac

August 2014- Hashimoto's

"You never know how strong you are, until being strong is your only choice."

Bob Marley

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(((((((((((((((((((((((((((((hugs)))))))))))))))))))))))))))))

to you all and anyone who has to put up with stuff like this. People can be such jerks it is hard not to wish celiac on them at some point in their lives.


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)

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 in time with proper diagnosis of Celiac November 2002

 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)

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Thank you all for understanding. I even got the whole " you should have gotten your own room and never let us stay at your house". Really because all the treats I spent hours and hours making for you were not enough. Well they certainly will not be staying at my house ever again.

 

 

(((((Hugs))))

That sounds awful. I'm really sorry that happened to you. Last summer a big gluten eater stayed at our house and glutened me. She just doesn't get it. As she's eating a quesadilla from Chipotle she asks if I want some. Ummm...no I can't eat that. It has gluten. Well you can have the filling. Umm no, it's sitting on the gluten? Urgh! The 4th day she was here I got sick and was sick for 2 weeks. I had only eaten food at home...but I got cc'd by her. She's constantly eating crackers and cookies and getting stuff everywhere. Learned a lot from that though and changed how I handle people and their gluten.

We should all go on vacation together...We'd all get it. That would be so cool.

This is exactly why I do not allow gluten in the house. It is not beccause I can't keep things seperate, it is because others have no respect or consideration. The worst part is just knowing they are going to eat their cookies and then stick their hands in the bread bag ( you know the stuff that I spend ages making so I can have bread) without washing. No I need my places to feel safe so I can let my guard down. Everyone I know (friends included) have had no issues and support me completely. I just went on vacation with a fully Gluten eating couple. We even shared a kitchen. Amazingly they had no problems and since they kept their gluten foods away from where the shared foods would be stored and preped I didn;t get ill and we all had a great time. Just shows who cares and who doesn't I guess. 

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man we should plan a serious gluten-free support holiday! How nice would it be to know the people around you understood and could talk about other things and eat together too!

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man we should plan a serious gluten-free support holiday! How nice would it be to know the people around you understood and could talk about other things and eat together too!

They have gluten-free camps for kids, but not for adults! I would go! Just the luxury of not worrying about meal preparation! As it is, we love our gluten-free Motorhome. We camp and travel in comfort. My hubby resisted an RV and said it was a money pit, but he admitted that he never gets glutened. He can really enjoy his time off!


Non-functioning Gall bladder Removal Surgery 2005

Diagnosed via Blood Test and Endoscopy: March 2013

Hashimoto's Thyroiditis -- Stable 2014

Anemia -- Resolved

Fractures (vertebrae): June 2013

Osteopenia/osteoporosis -- June 2013

Allergies and Food Intolerances

Diabetes -- January 2014

Celiac.com - Celiac Disease Board Moderator

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I'll soon be going on my first visit to family since realizing that I need a super gluten free diet (avoiding gluten ingredients wasn't enough for me). I have found two gluten free restaurants in the area, and my brother and his wife are willing to have me supervise the cooking in their kitchen. But my father says "don't worry about it, we can just eat at The Club." (Golf/country club where he eats many meals). I had to explain that I wanted to try the gluten free restaurants and that gluten free on a menu doesn't mean it isn't contaminated. I have to stand up for myself and I find that hard to do with my father. He's not insensitive, he just doesn't understand contamination and is insistent on where he likes to eat.

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It's funny, just this summer I was on a family vacation to Orlando and did okay.  My aunt agreed to keep our room gluten free, I survived going out.  My father had a hard time with cross contamination.  He did not understand that we can't food share anymore.  But after coming home my grandmother, who went to my dr appointments with me, decided not to use the gluten free cutting board at the family cabin and I got sick.  It was right next to the contaminated board.  It wasn't even any extra work to use it.  I'm especially frustrated because I took it to the cabin because I've gotten sick from cutting boards before.  But grandma thought it must have been my period since she "didn't think the cutting board would matter."

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I am feeling better now that I have been home around those that really care and do their best to give me all the support I need. I hope everyone has at least that core group of loved ones that give them support and understanding! I cannot imagine having to go through this with noone in my corner. It did make me very very appreciative of my family and friends here at home!

 

 

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I can empathize with all of you.  Luckily, my home and car are gluten free zones.  My husband understands completely and has even gone gluten free as a sign of support.  I'm amazed.  NOBODY else in my life understands Celiac or gluten free no matter how many times I try to explain it.  My mother and my siblings don't understand; and frankly, they don't want to understand.  They keep "forgetting" that I have Celiac and that I need to be gluten free.  They make no accommodation for me.  When I respond, again, that I need to be gluten free; they ask the very same questions all over again.  I've given up explaining things to them because they are not interested in hearing the answers.  I get more understanding from grocery clerks.  This diagnosis only highlights just how selfish they are.  So very sad for them.

A major problem is when they say, "But I see gluten free food everywhere"!  No understanding of cross contamination.

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