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15 replies to this topic

#1 Brigit

 
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Posted 28 March 2011 - 10:59 PM

We were invited for supper last night, to a friend who has been very aware of my last 6 week journey with gluten, so I thought she'd be fine with regards to what to cook, as she went dairy and wheat free while breastfeeding her baby. I arrive to see that she's made spaghetti bolognese, a beautiful looking loaf of bread, small green salad and cake for dessert.

Then you just feel silly. Saying sorry I can't eat that. People honestly think it's just a phase, or a picky diet.

Sad & frustrating!
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#2 Loey

 
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Posted 29 March 2011 - 02:59 AM

We were invited for supper last night, to a friend who has been very aware of my last 6 week journey with gluten, so I thought she'd be fine with regards to what to cook, as she went dairy and wheat free while breastfeeding her baby. I arrive to see that she's made spaghetti bolognese, a beautiful looking loaf of bread, small green salad and cake for dessert.

Then you just feel silly. Saying sorry I can't eat that. People honestly think it's just a phase, or a picky diet.

Sad & frustrating!


Hi Brigit,

I'm sorry you were so frustrated. I find that the longer I'm on the diet, the more people around me pick up on what foods I can eat. I usually have people over to my house for dinner because it just makes it easier. Hang in there and remember that you're not alone. Feel free to PM if you need to vent.

Loey



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#3 ravenwoodglass

 
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Posted 29 March 2011 - 03:46 AM

That's why it is always a good idea to bring a bit of food with you or eat before you go. It is also a good idea to ask what is being served when you get the invite so you can be best prepared. That must have been quite disappointing for you but hopefully you were able to enjoy the company and conversation.
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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)

#4 luvs2eat

 
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Posted 29 March 2011 - 05:20 AM

A fad?? Just being picky?? I'd invite them to stay w/ me for a day or 2 after eating gluten. That would make it crystal clear!!
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luvs2eat
Living in the beautiful Ozark mountains in Arkansas
positive blood tests and later, positive biopsy
diagnosed 8/5/02, gluten-free (after lots of mistakes!) since that day
Dairy free since July 2010 and NOT happy about it!!

#5 Brigit

 
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Posted 29 March 2011 - 05:55 AM

A fad?? Just being picky?? I'd invite them to stay w/ me for a day or 2 after eating gluten. That would make it crystal clear!!



he he - yeah exactly!

Thankfully my husband understands, so I'm not 'in this' alone and he was really cool about it all last night. That helped.
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#6 IrishHeart

 
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Posted 29 March 2011 - 06:09 AM

Sorry, sweetie.

Have you told her you have celiac and you must maintain a lifelong avoidance of gluten to keep you healthy? She may need to be educated a bit.

My family and friends have been educated, but sadly, they still don't grasp it entirely.

In time, I hope they will.
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"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif


#7 hnybny91

 
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Posted 29 March 2011 - 07:42 AM

I am sorry to say this but if she was very aware and still made all of that food she doesn't sound like much of a friend at all :(
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#8 IrishHeart

 
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Posted 29 March 2011 - 07:46 AM

I am sorry to say this but if she was very aware and still made all of that food she doesn't sound like much of a friend at all :(



I was hesitant to say this, too...but...DOES she know you are a celiac, Brigit? If so, then, yes, what was she thinking?????? :blink: :o :o
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"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif


#9 lynnelise

 
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Posted 29 March 2011 - 07:48 AM

Wow, I think that would have really hurt my feelings! You just don't expect that from friends who know the issues you are dealing with! I hope she just had a serious memory lapse and wasn't being intentionally malicious! I'm sorry you were put in such an awkward situation! :(
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#10 Marilyn R

 
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Posted 29 March 2011 - 06:09 PM

We were invited for supper last night, to a friend who has been very aware of my last 6 week journey with gluten, so I thought she'd be fine with regards to what to cook, as she went dairy and wheat free while breastfeeding her baby. I arrive to see that she's made spaghetti bolognese, a beautiful looking loaf of bread, small green salad and cake for dessert.

Then you just feel silly. Saying sorry I can't eat that. People honestly think it's just a phase, or a picky diet.

Sad & frustrating!


Oh Bridget, I'm so sad that your friend did that! What's so frustrating is that if you were a vegetarian, she probably would have made you a separate dish of spagetti with marinara sauce.

People "get" vegetarian. They understand kosher or kosher style. gluten-free is really tough for them to comprehend, especially with CC issues. And our diet isn't a choice.

It you were able to extract yourself from that situation with any grace whatsoever, you deserve stand up applause. :)
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Positive improvement from elimination diet. Mother dx'd by Mayo Clinic in late 1980s. Negative blood tests and Upper & Lower GI biopsy. Parathyroidectomy 12/09. Recurring high calcium level 4/10. Gluten-free 4/10. Soy & Dairy Free 6/10. Corn free 7/10. Grain free except rice 8/10. Legume free 6/11. Fighting the battle of the battle within myself, and I'm going to win!

As of 2/12, tolerating dairy, corn, legumes and some soy, but I limit soy to tamari sauce or modest soy additives. Won't ever try quinoa again!

Discoid Lupus from skin biopsy 2011, discovered 2/12 when picking up medical records. Systemic Lupus Dx 6/12. Shingles 10/12.

#11 Brigit

 
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Posted 30 March 2011 - 12:54 AM

Hi all,
Thanks for your support and advise!

So what I've just done took a lot of guts, but I emailed a bunch of my friends and people I work with and explained word for word what was going on with me and what Celiac Disease meant. I hope it makes things easier into the future. I don't expect understanding from strangers or new friends, but from old friends and family, I really need support and understanding. So hoping the email makes sense to them. I also had to write it, as I'm struggling to want to be around people at the moment, and am wanting to 'run and hide' to a place where this isn't happening to me. So now that I've been honest with my friends, maybe I will be calmer about managing and coping around them in social gatherings.

So here's hoping for easier times! :)
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#12 ciavyn

 
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Posted 30 March 2011 - 04:07 AM

Brigit -- just a few thoughts...

1. My best friend thought I was a little loopy, but as is her nature, she trusts me to do what is best for me. As it works out, she also may have Celiac's disease, and my willingness the last year and a half to face some discomfort around others has encouraged her to make the switch. She is feeling 100% better, but as frustrated as I was when I first started. So I can help her, because we've been very open about my struggle.

2. Your friends and coworkers also have issues. Some of them you don't know, because they are too embarrassed to share them. So you being willing to be open is giving them the freedom and permission to do the same. That is a gift, and I applaud you for it.

3. Be social -- bring your own dish to add to the event, along with your own plate of it for yourself (to avoid cross contamination but also to ensure you have it made exactly the way YOU want it.) If it's a restaurant, learn some standbys and you'll be fine. A well-questioned and educated server will get you a burger, fish or chicken with nothing on it, and a plate of fries (if safe) or vegetable happily. Just tip them well, show your gratitude, and believe you me, I would have done anything for a good customer when I was a waitress, just for some appreciation.

4. Hang in there. It gets easier, I swear. I'm very social, and love hanging out with folks. It just is a learning curve, and it's hard to be patient when the risk is getting ill.

Best, Ci :)
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Gluten free: Nov. 2009
Peanut and dairy free: Dec. 2009
Rediscovered dairy: March 2010 (in small quantities)
Peanuts added back: June 2010 (in small quantities)

#13 kellynolan82

 
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Posted 30 March 2011 - 04:26 AM

I really have a lot of time for your patience, Brigit! It is a real virtue and I feel that we need to be open (not whinging) but not guilty and/or worried about what others think too overly.

I always say to 'do your best and let others do or say whatever'.

All the best :)
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#14 IrishHeart

 
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Posted 30 March 2011 - 07:52 AM

Hi all,
Thanks for your support and advise!

So what I've just done took a lot of guts, but I emailed a bunch of my friends and people I work with and explained word for word what was going on with me and what Celiac Disease meant. I hope it makes things easier into the future. I don't expect understanding from strangers or new friends, but from old friends and family, I really need support and understanding. So hoping the email makes sense to them. I also had to write it, as I'm struggling to want to be around people at the moment, and am wanting to 'run and hide' to a place where this isn't happening to me. So now that I've been honest with my friends, maybe I will be calmer about managing and coping around them in social gatherings.

So here's hoping for easier times! :)


Good for you, Kiddo!

I want you to know that I have informed all of my family and friends, too, right from the beginning....and they still "don't get it" but they try. Some do. Some have taken to ignoring me. It hurts my feelings, but so be it.

You just keep taking care of YOU right now.

One thing most of us forget is...this is a disease of malnutrition. It takes time for the body to recover and it affects us emotionally as well as physically.

It made me "not me" for a long time. I was unrecognizable, even to myself....and that is slowly reversing. If not for my devoted husband, who is my best friend, I do not know what would have become of me. He says I'm a fighter and could have done it solo, but we both know that is not true.

I would like my friends and family to be more supportive, but I think they are bewildered by it all and because I was ill for so long, they are tired of hearing about it. (Some of my family is not listening to me anyway because I tell them they probably have gluten issues, too and they don't want to hear it. Heads are in the sand!!)

They just want me to "be me" again. When I am more recovered, I will try educating them further. In time, all will resolve itself.

With education, perhaps your friends will be more understanding of you as well.

It is a good that you have a loving spouse. Hang in there, honey...you're doing a great job coping with this whole thing, from what I can tell!! ;)
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"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif


#15 hammergirl

 
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Posted 18 April 2011 - 05:47 PM

This is just so sad. I know I often feel the same way, that if you tell someone how you need your food prepared in order to avoid extremely painful consequences in a few hours, but they look at you like you're just being high-maintenance, picky, or whiny. I get that a lot from the servers at restaurants. I've had to send food back numerous times due to their ignoring or forgetting my explicit 'do NOT put crutons on my salad please'.

Hang in there! I know that telling those around you will really help out. I truly hope that I have the guts to do this sort of thing when the time comes.
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