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GFreeMO

The Most Annoying Thing About Celiac Is...

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Well, obviously if eating gluten free is not the entire solution and it does not appear to be other intolerances, then further investigation is required, which would probably include scoping. But the scoping can be done independent of celiac testing.

I agree with your order of investigation: blood test first - if negative, gluten free; if still problems, further investigation possibly including scope. And quit talking about "allergies" when you are referring to celiac :blink::P


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

Celiac.com - Celiac Disease Board Moderator

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Watching friends and family enjoy foods that I used to.Having friends and family appologize to me while enjoying the foods i used to.


Positive bloodwork

Positive biopsy

Gluten Free 10/2010

At the end of the game the Pawn and the King are placed in the same box.

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Being scared to travel.

My husband and I have dreamed for many years of travelling extensively in Asia. Our oldest kids will be leaving home soon and we had hoped to start travelling with (or without) the two youngest in the next few years. I've realized that eating in Asia will be so difficult. No street food, huge language barrier, ingredients in CJK characters... and so on and so forth.

We hope to take cruises and travel in Europe instead so I can run a better chance of not getting sick but it's hard to let that lifelong dream go.


Sara

Busy mom to 3 great kids (4, 8 and 18)

Gluten free since April 6, 2011 ~ Also sensitive to coconut, coffee and food dyes

Joint pain, mouth sores, back and neck pain, migraines, stomach pain, chronic fatigue, ADD and depression are all gone.
Wishing I had been diagnosed before celiac robbed me of the cartilage in my toes and the 3 babies we lost to miscarriages.

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Please give some advice Meatballman to me, the gluten-eating wife of a super-sensitive celiac...I find myself on occasion apologizing to him when I eat gluten in front of him. I can't help it! I know he wishes he could share...what's more annoying - me turning down his suggestion that I have that cinnamon roll (becuase he feels guilty if I don't eat what I can) or me eating it in front of him (then I feel guitly while I do.)

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Please give some advice Meatballman to me, the gluten-eating wife of a super-sensitive celiac...I find myself on occasion apologizing to him when I eat gluten in front of him. I can't help it! I know he wishes he could share...what's more annoying - me turning down his suggestion that I have that cinnamon roll (becuase he feels guilty if I don't eat what I can) or me eating it in front of him (then I feel guitly while I do.)

I guess for me.I wish it could just be like it used to be.I didnt know I had this until I was 41.I was a big guy with a huge appetite.Now I feel weak and like everyone is always trying to please me.Sounds silly but I wish everyone including my gluten eating wife and daughters would just eat stop saying they are sorry.I cant speak for your husband.If he is like me Im sure he knows you are sorry and support him.I think he would want you to enjoy that cinnamon roll.To answer your question the annoying part are the apologies.Just act like you always have and eat what you must.I think drawing attention to it all the time frustrates me.Possibly he may feel the same.Anyway Im rambling now.Hope I helped.


Positive bloodwork

Positive biopsy

Gluten Free 10/2010

At the end of the game the Pawn and the King are placed in the same box.

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That sometimes you have to lie and say you have a wheat allergy just to get people to take you seriously.

People calling gluten free diets/gluten free products in grocery stores just a "fad".

When the person closest to you in the whole entire world doesn't take you seriously and says you'll grow out of it. Despite already being an adult.

How so many products on the shelves out there are full of weird stuff. Sometimes you just want a brownie to taste like a brownie, not a fig newton.

When people buy you gluten free stuff without being asked. And then expect you to give them money for it.

Maybe this isn't an annoying thing exactly, but coming to the realization that the majority of the people in the food services industry know so little about the food they are serving you it should make everyone run screaming for the hills.

And I could go on lol. I can't pick a most annoying thing.

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When someone thinks that just because it is gluten free you can eat it :ph34r:


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

Celiac.com - Celiac Disease Board Moderator

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I ate boring food while everyone around me was able to enjoy a better meal, and I STILL got sick.

My child has to fight tooth and nail to keep her food safe, because the in-laws can't seem to understand cc and simply brush the gluten crumbs away from her food, insisting it'll be 'fine.' (...and they wonder why I won't let them babysit anymore :rolleyes: )

My kids are in pain and it's because I made the wrong decision about the safety of the food I allowed them to eat. :(


T.H.

Gluten free since August 10, 2009.
21 years with undiagnosed Celiac Disease

23 years with undiagnosed sulfite sensitivity

25 years with undiagnosed mast cell activation disorder (MCAD) 

 

Daughter: celiac and MCAD positive

Son: gluten intolerant
Father, brother: celiac positive

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I do have another pet peeve actually.

I would like to go to the store and buy some gluten free cookies/bread/cereal/cake mix/snacks/frozen meals. Not gluten free, corn free, dairy free, egg free, organic, vegan, fat free, peanut free, seed free and fair trade.

It's not that any of those other things are bad but I get annoyed when all the "special diet/allergy" groups are lumped together into one really expensive and substandard product.

I like eggs and dairy and nuts and meat and fat in my food.

Same goes for cookbooks.


Sara

Busy mom to 3 great kids (4, 8 and 18)

Gluten free since April 6, 2011 ~ Also sensitive to coconut, coffee and food dyes

Joint pain, mouth sores, back and neck pain, migraines, stomach pain, chronic fatigue, ADD and depression are all gone.
Wishing I had been diagnosed before celiac robbed me of the cartilage in my toes and the 3 babies we lost to miscarriages.

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Constant planning.

Not wanting to cook but being bored to death of the 3 places I can safely eat.

How my in-laws put ritz crackers in EVERYTHING and then act like they "forgot" I couldn't eat this or that.

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Having to always ask questions, read labels and being so careful. I miss being able to eat anything I wanted without thinking about it!!


Yesterday is not ours to recover but today is ours to win or lose!

Miscarriage, Kidney stones, Anemia, Pneumonia, Migraines, Restless leg, Bone fractures, Blurred/Double vision, Extreme fatigue, Bone & Joint Pain, Thyroid nodule, Celiac diagnosed 2011, Spine and leg bone loss, GERD, Vitamin deficiencies, Malabsorbtion, Neuropathy issues, Ataxia, Raynaud's Syndrome. Currently on diet with limited grain and sugar.

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Paying twice as much for a box of gluten free bisquick that's 2/3 the size of a regular box.

Worrying about what I'm going to eat at social event or if I can eat anything at all.

Having to become a high-maintenance person when I go out to eat. I'm not that way at all. It's hard having to be particular about things.


Blood tested 8-11 positive, Biopsy 9-11 negative (long story, most gastro drs. are morons)

gluten-free 7-11, Dairy Free (mostly) 8-13 - Everything but butter.  Can't live life without butter....
 

DS - negative blood test, just diagnosed with ADD and other learning disorders, DNA test positive - high risk

Issues related to gluten: depression, low iron, hair loss, positive ana test for lupus, low vitamin D, headache, sinusitis, environmental allergies, brain fog, GI problems, weight gain....the list goes on....

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I do have another pet peeve actually.

I would like to go to the store and buy some gluten free cookies/bread/cereal/cake mix/snacks/frozen meals. Not gluten free, corn free, dairy free, egg free, organic, vegan, fat free, peanut free, seed free and fair trade.

It's not that any of those other things are bad but I get annoyed when all the "special diet/allergy" groups are lumped together into one really expensive and substandard product.

I like eggs and dairy and nuts and meat and fat in my food.

Same goes for cookbooks.

I hate going to the store and finding delicious-looking gluten-free things that either contain soya, contain dairy, or are CC'd with soya/dairy. :(


gluten-free 25 Feb 2011
soy-free 30 March 2011

dairy-free 30 August 2011 (roughly)

25 yrs old
diagnosed Celiac through biopsy and blood test (WAY positive) as of 25 Feb 2011

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I hate going to the store and finding delicious-looking gluten-free things that either contain soya, contain dairy, or are CC'd with soya/dairy. :(

Fair enough. When I'm looking at the everything-free cookies that cost $7 for a box of 6 I try to remind myself that there are people who are extremely thankful that these cookies exist for their kids (or themselves).

It's a petty pet peeve especially since I am able to make pretty much everything from scratch anyway. I should just be thankful I can have soy and dairy.


Sara

Busy mom to 3 great kids (4, 8 and 18)

Gluten free since April 6, 2011 ~ Also sensitive to coconut, coffee and food dyes

Joint pain, mouth sores, back and neck pain, migraines, stomach pain, chronic fatigue, ADD and depression are all gone.
Wishing I had been diagnosed before celiac robbed me of the cartilage in my toes and the 3 babies we lost to miscarriages.

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thinking and over thinking.

thinking.....

-can i eat it?

-what can i eat? here? now? at that store? at that restaurant? at his/her house? at the party? at the event? on vacation? on the road? in the car? as a snack?

-planning ahead....hmmmm what/how/when will i be able to eat?

-if i eat it, will i... be sick? from what? and for how long? will i have an allergic reaction? is my allergic reaction 'real' or psychosomatic? is the anxiety a reaction to the food i've just consumed or to the state of mind i've put myself thinking about eating the food i've just consumed....

-what will they think? im a hypochondriac? a health nut? a nut job? telling the truth?

-how do i tell them i can't/won't/don't want to eat the food they've prepared?

-how will i find a compromise in this scenario...(fill in the blank)....and not draw too much attention to myself, feel comfortable, help others to feel comfortable, not be rude AND find something to eat!!! :rolleyes:

too much thinking.....


Lactose Intolerant 2004, Gluten Intolerant 2010

Negative blood test for Celiac 2011, but incomplete testing....

All recent: Soy, casein and egg sensitive. Peanut and Shellfish allergy.

Still learning about what all this means....

Barn's burnt down-

now

I can see the moon.

Masahide, Japanese poet, 1657?

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Hands down...watching my teen-aged sons struggle with the "oh goodness that pizza looks and smells great" while hanging with friends. I got so sick that I'm grateful for health and being in control of my food....yet for my kids the symptoms are bad but not incapacitating...very tough to stick to it in social situations.


-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)

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I do have another pet peeve actually.

I would like to go to the store and buy some gluten free cookies/bread/cereal/cake mix/snacks/frozen meals. Not gluten free, corn free, dairy free, egg free, organic, vegan, fat free, peanut free, seed free and fair trade.

It's not that any of those other things are bad but I get annoyed when all the "special diet/allergy" groups are lumped together into one really expensive and substandard product.

I like eggs and dairy and nuts and meat and fat in my food.

Same goes for cookbooks.

I'm with you.

I know there are people who appreciate these things, but it annoys me to have dietary needs lumped in with dietary choices.

I don't have a problem with anyone who wants to eat Vegan, Organic, etc. - that is their personal choice - but I don't want to be grouped in the same category.


Positive Celiac (Blood & Biopsy) - April 2011

Peanut Allergy

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That you cannot eat gluten...c'mon...this was obvious. :)

I'm w/ you Chad. It's a no brainer.

How simple my life was before celiac and there are some foods and activities I miss so terribly...

My mom's thanksgiving stuffing

My love of baking

Eating out w/o difficulty

etc, etc, etc.


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!!

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Always having to be the food preparer, even when you are "going out" to eat.


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

Celiac.com - Celiac Disease Board Moderator

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