10 Things I Hate About Celiac

[Anteau25]

I hate having to put my life on hold- dropping out of college and praying evrery day that god will get through another work day.

Explaining to my aunt for the 100th time that I will never be able to reintroduce gluten into my diet, and I will never "grow out of it."

Not being able to be spontaneous because I have to meal plan for diabetes and celiac.

[Julie-uk-nz]

I hate it when people say 'go on have a little bit, that won't harm you'

argh

Also, 'what happens when you eat gluten?'

and 'have you finished your special diet yet?'

and 'can you eat this?'

I must hear these things everyday!!!!!!!

[NoGluGirl]

The worst thing for me is that this illness has stolen my life. There are so many things this illness has brought on. Thyroid trouble...making it impossible to lose one lousy pound at times. Having everyday living in fear of becoming violently ill from the simplest food. Worrying about affording food I can have is another major issue. I am stuck here living with my parents at 24 years old because I am too ill to work, and cannot get disability. No one who really needs it gets it most of the time. The feeling of hopelessness about working so hard, and getting nothing but grief for it is difficult to deal with. Due to not being able to work, I cannot get my Associate's degree! I am only one class short, and despite working so hard for over two years doing advanced curriculum, will not be given the diploma I deserve to have. I resent the dog being more a priority than I am. His grooming is more important than my doctor's appointment to my mother. It is all infuriating.

Sincerely,

NoGluGirl

[darlindeb25]

Hate celiac disease, if you must:

for being so hard to diagnose

hate that other diseases have found their way into our systems because we were not diagnosed soon enough

hate the medical community for not recognizing celiac disease to begin with

But, don't hate family for not understanding something that even doctors don't understand. We are told often that "you will grow out of it" for many things and people do actually believe this statement. Don't expect others to take care of you, take care of yourself and teach others what they need to know. So many complaints here are about other people, yet I bet a good share of you would react the same way if you were not celiac. How many of you have asked a diabetic if they could eat candy? How many of you know what a diabetic goes through or any of the majority of diseases out there? We have to educate people, we can't take for granted that they should just know what does or doesn't have gluten in it. Most of us still are amazed at things we find that contain gluten!

Until you set the hate free, you will not beable to move on.

[Lauren M]

But, don't hate family for not understanding something that even doctors don't understand. We are told often that "you will grow out of it" for many things and people do actually believe this statement. Don't expect others to take care of you, take care of yourself and teach others what they need to know. So many complaints here are about other people, yet I bet a good share of you would react the same way if you were not celiac. How many of you have asked a diabetic if they could eat candy? How many of you know what a diabetic goes through or any of the majority of diseases out there? We have to educate people, we can't take for granted that they should just know what does or doesn't have gluten in it. Most of us still are amazed at things we find that contain gluten!

Until you set the hate free, you will not beable to move on.

Amen, Deb!

Before I was diagnosed with Celiac, I knew nothing of it. I probably would have asked the same questions that I get every day ("can you eat this?") It is almost never mean-spirited. It is honest questioning, and honest interest.

I like your example with diabetes. I have a good friend who is type 1 and my aunt also has type 1. I have done some research, but am by no means an expert. So I ask questions. And they may be stupid questions, but they are always met with a patient reply. After all, I am only asking out of concern.

- Lauren

[prinsessa]

When people order a pizza and tell me I could just order a salad (like that is the same thing....I wouldn't trust a salad from a pizza place anyway)

Seeing my kids get upset because they can't have what everyone else is eating.

When someone (including DH) orders an appitizer that my kids or I can't eat (like going out to eat isn't hard enough)

That there are quite a few people around me who are sicker than I was before I went gluten free, but they won't admit that something might be wrong.

[Cam's Mom]

Ok, I had to chime in as a non-celiac mother of a celiac child:

1. I hate that I can't make my little girl better

2. I hate that I can't protect her from danger (in the form of gluten)

3. I hate that I can't have this stinkin' disease for her

4. I hate that I whine about it WAY more than she does

5. I hate that even though she has not eaten a crumb of gluten in a year her tTg has not come down

6. I hate that she hyperventilates and passes out at every blood test

7. I hate that our wonderful friends and family try so hard to understand and want to cook things for her and I still have to say no because of cc issues and they think I am a freak!

8. I hate that I don't take my kids on all the fun outings and trips other kids go on because I worry about having to carry too much food.

9. I hate that someday the responsibility of this will shift from my shoulders to hers.

10. I hate that her childhood isn't carefree

And, no she won't grow out of it, and no I'm not over reacting and no she can't just have the frosting and no it couldn't just be a misdiagnosis.

And what happens to her if she eats gluten? "Nothing" she's a silent celiac - but we're thinking we'd like to keep that intestine a while . . .

[StrongerToday]

1. I hate it when my family is digging into something yummy and says "oh, sorry - ha ha, you can't have this". (no, really? Thanks for pointing that out. AGAIN.)
   
2. I hate that I drool over the thought of a Bacon Egg and Cheese biscuit from McD's
   
3. That I've burst into tears over an Olive Garden commercial
   
4. That I have to plan every meal, or be prepared to just get a plain steak and potato if I go out
   
5. I hate that I can't have a great, gooey, no good for me big ole donut at a meeting
   
6. I hate that gluten-free costs so darn much, the portions are so small, and you're gambling on the taste sometimes
   
7. I hate that I worry about licking an evelope, or a stamp, or the little things that never even entered my mind before going gluten-free like CC
   
8. I hate having to tell people that "yes, there IS wheat in white bread, pasta, soy sauce, _____," etc.
   
9. I hate that there is wheat is soy sauce! And Twisters. And Nacho Cheese Doritios, and.... everything else it doesn't need to be!!
   
10. "you can just get a salad right?" (if only it were that easy)
    

[Mtndog]

Hate celiac disease, if you must:

for being so hard to diagnose

hate that other diseases have found their way into our systems because we were not diagnosed soon enough

hate the medical community for not recognizing celiac disease to begin with

But, don't hate family for not understanding something that even doctors don't understand. We are told often that "you will grow out of it" for many things and people do actually believe this statement. Don't expect others to take care of you, take care of yourself and teach others what they need to know. So many complaints here are about other people, yet I bet a good share of you would react the same way if you were not celiac. How many of you have asked a diabetic if they could eat candy? How many of you know what a diabetic goes through or any of the majority of diseases out there? We have to educate people, we can't take for granted that they should just know what does or doesn't have gluten in it. Most of us still are amazed at things we find that contain gluten!

Until you set the hate free, you will not beable to move on.

Uh...Deb- this is a friendly reminder that I started this thread for people to VENT so if you don't want to listen to others vent, please don't read. There's an equally great thread on Things that are good about Celiac. Plenty of positivity there! remember...writing about it IS one way of letting go of the anger!

[Nantzie]

Uh...Deb- this is a friendly reminder that I started this thread for people to VENT so if you don't want to listen to others vent, please don't read. There's an equally great thread on Things that are good about Celiac. Plenty of positivity there! remember...writing about it IS one way of letting go of the anger!

I agree. I'm 98% up and positive about all of this. It's changed my life SO much for the better, but some of it just sucks. Being chronically ill is hard and when other people don't understand or think you're being over the top with it, it's a hundred times worse than it should be. I know every one of us have gone through this with other people. Some days it doesn't bother us and some days it does. On the days it does this is a great thread to come to.

Nancy

[Mtndog]

And you must admit that we have had some good laughs- like JestGar's invention. I'm contacting Coach, Dooney and Bourke, Chanel, Gucci and Kate Spade about this...we'll see who offers the most money. I think kate Spade will go for it as they are hip. But i'll let you know. All proceeds go to Jestgar to do as she wishes.

[lonewolf]

1. Passing Krispy Kreme almost every day and knowing that I will NEVER be able to eat one.

2. Knowing that 2 of my kids will never get to eat a Krispy Kreme.

3. Explaining that white flour comes from wheat - AGAIN!

4. Trying to get my 12 year old son to understand that this is for his good - I'm not being mean to insist that he not cheat. edit- by her son- i DON'T cheat

5. Pretending that it doesn't matter that I can't eat in social situations because I'm just there for the company.

6. Relatives who think I've gone overboard and there's nothing really wrong with me. (Well, there's not, now that I've figured out the problem!)

7. Explaining to my husband for the thousandth time that I want HIM to wipe up his crumbs from the counter.

8. Not getting to make/eat my delicious homemade sourdough bread ever again.

9. Knowing that 2 of my kids will feel out of place at every pizza party they're invited to.

10. The fact that several years of my life were basically ruined because no one could figure out what was wrong with me and all the doctors thought I was a hypochondriac and just wanted me to take pills.

11. The fact that I technically don't have Celiac, but have just as severe a reaction. No diagnosis to make me feel like I belong anywhere.

[Jestgar]

All proceeds go to Jestgar to do as she wishes.

I plan to develop automatically expanding pants so those gluten mishaps don't necessitate a day of discomfort. Something that looks like a regular type of dressy slacks but has cleverly tucked in elastic that gently changes the size of the pleats without looking like you're wearing an elastic waistband.

[Jestgar]

Oh wait - I forgot this was the grumpy thread. How about I cater the massive sit-in we'll organize at, say, Kellogg's to protest the indiscriminate use of barley malt.

[Debbie65]

I live in Mallorca where foreigners(can

[darlindeb25]

Uh...Deb- this is a friendly reminder that I started this thread for people to VENT so if you don't want to listen to others vent, please don't read. There's an equally great thread on Things that are good about Celiac. Plenty of positivity there! remember...writing about it IS one way of letting go of the anger!

Uh...Mtndog- this is a friendly reminder that I can vent just the same as everyone else--if you don't want to hear my vent, then please do not read my post. I have no problem with anyone hating celiac disease, but I do have a problem with those who blame everyone else for their problems. It's ok to hate that you have to miss all those things you loved, it's ok for a mom to hate that her child has this disease--it's not ok to hate your family and friends because they can't understand what you are going through.

And, it's ok for this to be my vent.

[ravenwoodglass]

I hate that celiac killed my mother so young.

I hate that she lived so many years off toast because it was good for an upset tummy.

I hate that celiac destroyed my twins liver.

I hate that I am so sensitive to CC that I bleed.

I hate that I am so afraid of cancer because of so many years of misdiagnosis.

I hate that my hands, always my best feature, are now knobby because gluten caused my own body to destroy bone.

I hate having osteoporosis.

I hate having diabetes because my own body hurt my pancreas

I hate that my son's growth was so badly stunted that girls won't even look at him.

I hate that my daughters second GI, after 2 years gluten-free, told her that she wasn't really gluten intolerant.

I hate that she listened.

I hate that it took away my children's childhood.

I think I went over, and I could go on. But I won't

[Nantzie]

I don't think anyone mentioned hating anyone. Being angry or upset or sad or frustrated and wishing family or friends or co-workers understood is completely different than hating someone. Hating what someone does doesn't mean you hate them.

I get what you're saying though. In vent form - You hate it when people with celiac get angry with other people when they don't understand, even though those other people have no way of understanding. You wish people would see that those people don't mean any harm and oftentimes think they are being helpful.

I hope I have that right?

Nancy

[Mtndog]

I have no problem with anyone hating celiac disease, but I do have a problem with those who blame everyone else for their problems. It's ok to hate that you have to miss all those things you loved, it's ok for a mom to hate that her child has this disease--it's not ok to hate your family and friends because they can't understand what you are going through.

And, it's ok for this to be my vent.

But it's not for you to decide how someone should feel about their family. You can't understand unless you have been in their shoes. If no GluGirl needs to get this out, she should feel free too.

[darlindeb25]

Yes Nancy, exactly what I meant. You hate it when people with celiac get angry with other people when they don't understand, even though those other people have no way of understanding. You wish people would see that those people don't mean any harm and oftentimes think they are being helpful. Exactly.

If no GluGirl needs to get this out, she should feel free too.I didn't mention any names and I was not referring to NoGluGirl. I am reading this over and over, anger at family for being uncaring. I truly do not think that most family is uncaring, they just do not understand.

My family understands, that I must eat differently, yet most of my kids do not understand just exactly what wheat is. In their minds, flour is flour, it doesn't occur to them that flour is usually made from wheat--it's just flour. One of my sons was at the grocery store buying rolls for a holiday dinner, he called and asked me which ones were the ones I COULD have. He knew I couldn't have gluten, yet he couldn't comprehend what gluten actually is. We didn't know at first either and many of you have glutened yourself's over and over from not knowing. How can you be angry or hate family that just doesn't understand?

Family members that tease purposefully are different, it's ok to be angry with them.

I am very angry with doctors that do not bother to research celiac disease. I finally talked 2 of my sons into being tested and their doctor's told them they don't look celiac, so there is no need to test at this time.

[HannahHannah]

Hi, I'm new

I've been gluten-free since the beginning of February this year and it's been so difficult. This morning I was feeling particularly depresssed just due to people in restaurants not understanding why I can't eat certain things....

Then I came across this thread!

It cheered me up no end . Thank you so much to everyone! I'm the only person I know who can't eat gluten and it is so nice to find people who have the same annoyances as I do!

Hannah

London, England

[Mtndog]

Hi, I'm new

I've been gluten-free since the beginning of February this year and it's been so difficult. This morning I was feeling particularly depresssed just due to people in restaurants not understanding why I can't eat certain things....

Then I came across this thread!

It cheered me up no end . Thank you so much to everyone! I'm the only person I know who can't eat gluten and it is so nice to find people who have the same annoyances as I do!

Hannah

London, England

Welcome Hannah! This is a great place to be!!!!!!!!!!!!!!!!!!!!!!!!!! I'm glad the thread cheered you up. Sometimes laughter and venting is the best medicine!

[NoGluGirl]

Dear DarlinDeb and Mtndog,

The people on this forum are my real family! They understand and care. The thing is, my family is stubborn and just plain nuts honestly. Monkeys on crack make more normal decisions than some of the ones these people make! The frustration is, people do not want to understand. They refuse to even try. Automatically labeling you as a hypochondriac is wrong and cruel. This is especially so when they are the ones being careless. That is why I keep getting glutened! I am paranoid careful, but that has not saved me from becoming terribly sick from cc all the time. The other day, it was the soda bottle lid that got me. It has gotten to the point eating and drinking anything is scary!

Sincerely,

NoGluGirl

[nikki-uk]

Speaking as a non- coeliac (but gluten-free )

I hate that not enough is known about celiac disease in the medical community.....and so

I hate it that by the time my hubby was dx irreversable damage was done to his body

I hate that my son has it ...I want to have it for him

Oh ,and I just hate the sheer thought and planning that has to go into eating!!!!

[luckygfme]

i hhhhhhhhate

* being told for years that it was all in my head, that my head was making my stomach sick

* the fact that my doctor prescribed me wheat fiber for irritable bowel syndrome and i was stupid and desperate enough to try it

*No pizza, ever agaiin

* Thyroid problems (these need to go away NOW, i don't care if it's only slight right now. IT needs to stop!)

* developing other intolerances and trying to figure out what's causing the problem

* Eating something that makes me sick, and then trying to figure out if was one of the ingredients (which one? ) or cross contamination from a tiny crumb

it's such an overall drag.