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Sick Of Being So Different


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35 replies to this topic

#1 GFMochi

 
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Posted 11 December 2010 - 05:06 PM

Who else is sick of having to deal w celiacs? I hate having to be so careful w my food, having to make my own food to bring to parties. I hate it!! No one else in my family has this, they don't understand how bad it sucks to be so different. They keep telling me that I'm over reacting, it's not that bad to have this allergy, but they don't have it, it is not going to personally affect them! If they are hungry, they can grab anything.

I am so frustrated. I have 3 gatherings to go to next week, all surrounding food. I don't know how I am going to handle it. I was just curious how everyone else deals with it.
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#2 sb2178

 
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Posted 11 December 2010 - 05:26 PM

Ditto that.

1) excess chocolate.
2) occasional screw-ups (new rule: read the label TWICE, slowly, right, go on... do it again).
3) sometimes just plain feeling sorry for myself.
4) serious, serious training of my friends, who now ask me where to go for dinner, or what exactly they should bring. fortunately, they are mellow kind people and mostly saw me get sicker and sicker this spring.
5) high levels of involvement in the kitchen at family members/carrying own food.
6) mental map of where I can acquire "safe" snacks in the neighborhoods I frequent often.

Hey, should we start some google maps deal? there must be a way...
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2/2010 Malabsorption becomes dramatically noticable
3/2010 Negative IgA EMA; negative IgA TTG
4/2010 Negative biopsy
5/2010 Elimination diet; symptoms begin to resolve on gluten-free diet round two (10 days)
5/2010 Diagnosed gluten sensitive based on weakly positive repeat IgA & IgG TTGs and dietary response; decline capsule endoscopy.

Now, what to do about my cookbook in progress? Make it gluten-free?

#3 ravenwoodglass

 
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Posted 11 December 2010 - 05:33 PM

Yea it's frustrating. I handle it by eating before I go and keeping some kind of snack with me. You might want to bring a dish to pass that you know is gluten free and serve yourself first. Even if it is the only safe thing that is there at least you will have something safe. You might also want to have some gluten free treats on you, cookies or some cake etc. Just so when everyone is enjoying their dessert you have one too. If people ask you about it just tell them your celiac. You may even be surprised and discover someone else there is too. I was surprised to find someone diagnosed and his parents wondering if they were also at my table at my DD's wedding. As more people are being diagnosed we are getting less and less 'different' every day. Seems almost everyone I meet at least knows someone who is diagnosed.
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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 mushroom

 
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Posted 11 December 2010 - 05:57 PM

I attended an informal pot luck function last Friday evening for one of the groups I volunteer for. I took a big platter of fruit to share, and hub and I took separate plates of food in our picnic basket (the stand from the microwave that allows you to bypass the turntable works out great for this). It was only at the very end that one of the spouses of our group noticed that we were eating something different and, had we brought our own? And everyone raved about the fruit - it made a nice change from all the gluten they were eating :D Since everyone was taking food, I didn't feel different at all, and our coordinator for all the groups came over from the city - she brought the bread and bought two small delicious loaves from a gluten free bakery I didn't even know about, just for me (and hub who she didn't know was gluten free too) :D

But it is not always that easy not to stand out and not to feel different. We just need to develop a thicker hide than most have, learn what coping mechanisms work for us, and not care what other people think. This is totally unlike the way I was raised, where it was always "What will the neighbors think??", to which I now answer, "I don't care."
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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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#5 kareng

 
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Posted 11 December 2010 - 06:14 PM

Sometimes, I just don't go. I don't like it when it's a stand around the food and graze party. Sit-downs are different. I can bring my food and eat at the same time. If I know what is being served, I bring something similar. They had pasta and salad and cake at the football banquet. I made some pasta and broiled it with cheese on top ( stays hot longer).
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Thanksgiving dinners take 18 hours to prepare.  They are consumed in 12 minutes.  Half-times take 12 minutes.  This is not a coincidence.  - Emma Bombeck
 
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#6 Free_CountryGirl

 
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Posted 12 December 2010 - 08:25 AM

I understand how youn feel-I had a bit of breakdown yesterday since I'm the family baker and I can't eat any of that stuff and I just had to watch it and think of how good it looks. Gluten free mixes can be expensive. Everyone else has given you great advice, so I just thought I would offer the comfort or sympathy :) I was crying my eyes out, but I'm beginning to accept having Celiacs now. Some times a good cry just helps!
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"Lord make me a rainbow, Iíll shine down on my mother
She'll know Iím safe with you when she stands under my colors, oh and Life ain't always what you think it ought to be, no"


"If you are going through hell, keep going"
-Winston Churchill


Tired of such limited food options? Think about your pets. They eat the same food every single day of their lives! So suck it up.

#7 rustycat

 
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Posted 12 December 2010 - 08:56 AM

Yea it's frustrating. I handle it by eating before I go and keeping some kind of snack with me. You might want to bring a dish to pass that you know is gluten free and serve yourself first. Even if it is the only safe thing that is there at least you will have something safe. You might also want to have some gluten free treats on you, cookies or some cake etc. Just so when everyone is enjoying their dessert you have one too. If people ask you about it just tell them your celiac. You may even be surprised and discover someone else there is too. I was surprised to find someone diagnosed and his parents wondering if they were also at my table at my DD's wedding. As more people are being diagnosed we are getting less and less 'different' every day. Seems almost everyone I meet at least knows someone who is diagnosed.


This sounds like great advice; thanks for the information. I've been really struggling this week, too, since it's my first holiday season where I am totally gluten free. It helps to know that I'm not the only one feeling a bit frustrated.
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Rickets (severe Vitamin D deficiency) shortly after birth
First trip to Dr with severe C, age 7
Infertility, multiple miscarriages, eventually adopted 2 boys (not related)
2010: Negative celiac blood test, but staying on gluten free diet due to vast improvement in all symptoms
2011: June - started low salicylate diet to improve rosacea - it worked really well!
2012: May - started Paleo way of eating. Emotions and blood sugar seem to have evened out. Brain fog vanished.

2013: May - after 4 month elimination diet, was able to add back dairy, but nightshades are gone for good (my arthritis is gone, too!!!)


#8 Skylark

 
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Posted 12 December 2010 - 09:01 AM

I understand too. At work we had free lunch the other day, sandwiches and pizza. Then there were cupcakes and two different cheesecakes both with cake/crust parts at the send-off party for one of the guys in the lab an hour later. I'm open about my celiac. Between two rounds of food, couldn't just one measly gluten-free thing have been ordered? Just one? A measly salad at lunch to show that someone thought "gee, she can't eat all this bread"? OK. Done ranting.

I try to always have something really good to eat I bring myself. I focus on the friends and the companionship and try not to think about the food. Everyone has their cross to bear and this is ours.
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#9 kayo

 
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Posted 12 December 2010 - 11:32 AM

When I feel like this I remind myself to stop giving food so much power. It's just food. Fuel for our bodies. Fuel to put one foot in front of the other.
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40 year old former foodie on a quest to feel better!

-IgE to oats and rye
-Diagnosed with Colitis via endoscopy/colonoscopy Oct '10
-Following FODMAP diet since June '10, Positve SIBO test, July '10
-Diagnosed non-celiac gluten intolerant June '10 (celiac in March '10, endocsocopy in Oct '10 shows no signs of celiac)
-Osteopenia June '10
-Gluten free since July '09 & Soy free since December '09
-Dairy free since '06
-IBS & Sjogren's diagnosed '05
-RA diagnosed as a toddler


#10 FooGirlsMom

 
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Posted 12 December 2010 - 11:45 AM

Just wanted to lend another vote of support & sympathy. Even though I've only been gluten-free since October, I have been on a couple of long-term diets the past 15 years that were gluten-free, Sugar free, & dairy free and yeah you don't feel like you can eat anything. The only way I found I could cope with the restrictions was to make sure I always have leftovers and food cooked up in the 'fridge. Then I have the ability to toss together a "to go" tupperware container in 1 minute if necessary. Having refrigerated or frozen goodies help too - cupcakes, cake, cookies, you've made in advance. One of the real insider tricks to hassle-free cooking is always always always have certain staples on hand. For instance, I needed to toss together some "goodies" for my daughter's spur-of-the-moment get together with friends and in less than a 1/2 hour I had air popped popcorn with cheddar seasoning in gallon zip locks, and no bake cookies (made with gluten-free quick oats) ready to go.

It's a transition but learning to take food you love with you all the time is the only way to stay sane. I like the idea of knowing the safe snacks and where to buy them in neighborhoods you frequent. Another plus.

Hang in there. It's a cliche but we are all in this together. Life is going to be much easier as more people discover they have gluten issues.

Smiles,

FooGirlsMom
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When I saw this photo, I thought it truly represented my life prior to being gluten-free. It was like being rooted in place trying to survive a Category 5. Now that I am gluten-free, I feel like I just might make it :)

#11 Lincoln

 
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Posted 12 December 2010 - 03:04 PM

hey guys,
I don't really think that I can say I'm sick of being so different yet as I have only within the last week been diagnosed as having coeliac and then last night found out that I can't eat lecithin either, but mostly just other peoples responses is what has been getting me down. We very much do need to develop thick skins though. The thing that annoys me most though is that I have been diagnosed right before christmas. And through all of this I wonder what having coeliacs was like before the days of the internet.
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Coeliac (diagnosed December 2010)
Crohn's
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#12 MelindaLee

 
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Posted 12 December 2010 - 03:17 PM

We all feel frustrated at times. I feel fortunate that my family and friends try really hard. I have had more than one of them go out of their way to make sure that they had sothing I could eat. They don't make a fuss about what I eat or don't and defer to me for restaurant choices. I don't like the idea of "making a fuss", either, but they have each said to me at one time or another, "what if it was me?" They are right, I would be supportive and wouldn't criticize them.

I've only been doing this since August, but it does get easier. It still is WAY better than feeling lousy. I would rather eat differently vs feeling so rotten I wasn't well enough to go. Hang in there!
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#13 Amanda Lynds

 
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Posted 12 December 2010 - 05:13 PM

I wanna say it's getting easier, but it's not. I was diagnosed with celiacs in january, and in march, found out I was allergic to dairy, eggs, all citrus, all poultry, celery, strawberries and hazelnuts. This year I went to one party. I used to average about 15 a year. I've somehow grown tired of all my friends, so I barely talk to them, if at all. I've even grown tired of my boyfriend who seems to think i'm making it all up. I'm wondering if anyone else has inadvertently seperated themselves from the rest of the world. And any ideas on how to rebuild.
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#14 jessicalw28

 
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Posted 12 December 2010 - 06:24 PM

I haven't been doing gluten free very long, but I understand where you are coming from. It's hard for me because my family has always eaten out a few times a week. So every time we get ready to go somewhere I have to make sure they will have options for me and there's always a risk of cross contamination, but I don't want to be home by myself! It's especially hard starting this diet near the holidays. I have been to a couple of gatherings since starting the diet and just make sure I bring a few dishes that are gluten-free and serve myself first. I think one of my biggest problems is the fact that I feel different and don't want people to have to cater to my individual needs, but I will have to learn to accept that eventually.
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Jessica

"One person can make a difference, and everyone should try."- JFK

Self diagnosed gluten intolerant- December 2010
Lactose intolerant- since childhood

#15 chasbari

 
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Posted 12 December 2010 - 08:34 PM

I understand too. At work we had free lunch the other day, sandwiches and pizza. Then there were cupcakes and two different cheesecakes both with cake/crust parts at the send-off party for one of the guys in the lab an hour later. I'm open about my celiac. Between two rounds of food, couldn't just one measly gluten-free thing have been ordered? Just one? A measly salad at lunch to show that someone thought "gee, she can't eat all this bread"? OK. Done ranting.

I try to always have something really good to eat I bring myself. I focus on the friends and the companionship and try not to think about the food. Everyone has their cross to bear and this is ours.


My family threw me a birthday party recently ... and had cake, ice cream, punch.. and nothing..NOTHING ..for me to eat. What? I just sat there and watched everyone else eat..
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