10 Things I Hate About Celiac

[annie76]

So, so many I can list, but you guys covered most of them to a tee! This one really gets me! -Having friends who are jealous that you are so "slim" and they wish they could have celiac for awhile to achieve their weight loss goals!! Ugh! Ya, its sad that people want to "look" thin so badly that they would be sick to do it!

[Guest Happynwgal2]

And this gem from a relative who has an in-law with Celiac--"After you've been on the diet for a while, you can get away with having gluten once in a while".

Sigh, I have heard a version of this one, too. An old boyfriend, meaning well, brought me two loaves of bread that were made with sprouted wheat, thinking that would be OK for me. His old mother thought I should be able to eat that. I did not, and tried to explain, but I don't think it sunk in...

My frustrations; mostly when I go shopping, seeing all I can't eat any more, reading labels, and then finding some tiny amount of gluten hidden in the ingredients. Happens all the time, as you all probably know. I bought a small (1.5 inhes diameter) magnifying glass - I HATE THE SMALL PRINT ON SOME OF THE INGEDIENTS. Sigh... The magnifying glass fits into my wallet. Can't do without it...

I LOVE salads, but it gets boring after a while... I miss freshy baked white bread.... And Little Debbies snack cakes, the "Bosten Cremes"...

I have 11 days of vacation coming up in May which will be spent with my little granddaughter (sweetheart of 4) and a gluten free cookbook... she and I will test out receipes so Granny can find some more interesting foods...

[HannahHannah]

So, so many I can list, but you guys covered most of them to a tee! This one really gets me! -Having friends who are jealous that you are so "slim" and they wish they could have celiac for awhile to achieve their weight loss goals!! Ugh! Ya, its sad that people want to "look" thin so badly that they would be sick to do it!

This is so true Annie76! I've lost a stone and a half after becoming gluten freen since February. All of my friends at work are constantly commenting on me looking thinner, and how they wish they could have my 'will power'!!!

I try to explain to them that willpower doesn't even come in to it...!

[NoGluGirl]

Dear luckygfme,

Yep, I went through all of that, too. Doctors are complete idiots! They said the exact same thing to me. "It is all in your head" is their favorite phrase. Their second favorite is "I want you to take this anti-depressant.." I was doped up on so many of those things it was unreal.

They also told me, fiber was good for me. FiberCon nearly killed me! I also was told to eat Raisen Bran daily. Talk about death waiting to happen! We are lucky we finally found out the real cause of our fake IBS, and discovered the actual disease causing all of this.

Sincerely,

NoGluGirl

[luckygfme]

Dear luckygfme,

Yep, I went through all of that, too. Doctors are complete idiots! They said the exact same thing to me. "It is all in your head" is their favorite phrase. Their second favorite is "I want you to take this anti-depressant.." I was doped up on so many of those things it was unreal.

They also told me, fiber was good for me. FiberCon nearly killed me! I also was told to eat Raisen Bran daily. Talk about death waiting to happen! We are lucky we finally found out the real cause of our fake IBS, and discovered the actual disease causing all of this.

Sincerely,

NoGluGirl

UGh yeah we are definately lucky. I think Fibercon was what he gave me. He was such a uesless doctor

[Kyalesyin]

Things I hate about Celiac-

1: The days my wife comes home from work and mutters 'They offered me cake again.'

2: The mood swings and the 'I'm gonna jump off the harbour if I can't have cake' days, although those have eased now that the glutening is under control.

3: Can you kill gluten by cooking it well? Uhhhh.... no.

4: Signs in stores that say 'New! Improved recepie!' and the sinking feeling it causes in my stomach.

5: The people who think that I'm making it all up and making my wife think that she's sick, and that I'm controlling becuase I read the labels and don't let her eat wheat. That hurts more than anything else, because they knew her before she was sick, and they comment on how much better she is now, but the in the next sentence take me to one side and ask 'are you sure you know what you're doing?' I'm not a controlling partner- I actually defer to her in every situation pretty much- I know better than to mess with my wife! But when she says to me- 'I'm gonna get irrational sometimes, I might need your help' what am I supposed to do?

5 is really my big rant for the day. She's too shy to ask in restaurants about a gluten-free option half the time, so I ask, and then the people we're eating with take it the wrong way and....

*bashes head against desk*

Wait, someone said you can get glutened by orange juice! Wanna fill the ignorant partner in before I screw up?!

[Mountain Mama]

Yes, please tell us about the oj! I haven't heard that one yet!

[jaten]

Personally, I've always found it humorous that people ALWAYS ask me the effects of being "glutened" at the dinner table.

If I had a nickel for every time that i have said "Digestive Trauma" in an effort to subtly answer that question, I would be a millionaire.

YOU, TOO??? What is up with that? When these pour, silly fools ask such ridiculous questions during a meal, I'm thinking, "You really don't want to ask this right now...you REALLY don't." But to say that is almost as bad as the explanation. My euphemism has always been, "digestive issues."

[Kyalesyin]

YOU, TOO??? What is up with that? When these pour, silly fools ask such ridiculous questions during a meal, I'm thinking, "You really don't want to ask this right now...you REALLY don't." But to say that is almost as bad as the explanation. My euphemism has always been, "digestive issues."

In my house, we say 'explosive rear-end-itis' if people are rude, and simply 'bathroom issues' if people are being polite. Should have seen the look on my grandmother's face after we said 'explosive rearenditis'

[jaten]

8. Trusting a product or someone to cook for you and having it back-fire.....

[Mtndog]

In my house, we say 'explosive rear-end-itis' if people are rude, and simply 'bathroom issues' if people are being polite. Should have seen the look on my grandmother's face after we said 'explosive rearenditis'

:lol: :lol:

As far as the oj goes, when I first went gluten-free in 2005, Tropicana wouldn't guarantee the gluten-free status of their products, except the 100% pure premium juices, with the exception of two of their plants. I drank Tropicana lemonade and barfed my guts out for two days. Now I won't buy any of their products on principal.

[Kyalesyin]

:lol: :lol:

As far as the oj goes, when I first went gluten-free in 2005, Tropicana wouldn't guarantee the gluten-free status of their products, except the 100% pure premium juices, with the exception of two of their plants. I drank Tropicana lemonade and barfed my guts out for two days. Now I won't buy any of their products on principal.

Hmmm.... we buy supermarket own-branded stuff. I'm hoping thats ok. It says 'pure from concentrate', so I'm hoping that means 'nothing but apples' or something similar, since all it ever lists on the box is apple juice and sometimes a stabilising agent, which my chemistry proffessor assured me was harmless.

[skinnyminny]

I am genticly thin and goin to the lady doctor today and I told her about my diet and on top of things that my family is thin, and she said do you not EVER just give in and eat a piece of pizza she was so rude! I told her no you do not understand a crumb makes me sick and she thinks I try to make myself thin..Doctors make me so mad! when I was diagnosed 5 years ago I was at that teenage year and they told me it was all in my head and I was making myself sick! Are you serious? The doctor refused to test me for celiac when I brought it to his attention. THE REASON being he could not give me medicine or sugery like every other thing he put me through that made him MONEY! wow that feels better!!!!

[NoGluGirl]

UGh yeah we are definately lucky. I think Fibercon was what he gave me. He was such a uesless doctor

Dear luckygfme,

Doctors are so incredibly stupid! They think they are Psychologists, too! They know nothing about it! The FiberCon probably nearly killed you, too! Anything with psyllium husk really hurts me. I do not trust doctors anymore.

Dear Kyalesyin,

O.J. can be dangerous! I can second that Mtndog is right about Tropicana. I did not chance it. If they are not clear about what is in their stuff, I won't eat or drink it! I have gotten to the point the only thing I drink is water from our house, or Fruit 2-0. I also occaisionally have Diet Rite. One cup of coffee a day is a necessity, too.

ANOTHER CRUMMY THING ABOUT BEING A CELIAC

NOT BEING ABLE TO EAT MY FAVORITE CHINESE FOOD THAT DAD KNOWS I CANNOT HAVE, BUT BRINGS IT HOME ANYWAY!

Guess what he brought home tonight?

Sincerely,

NoGluGirl

[key]

1. Family that don't understand or believe you have celiac disease.

2. Never being able to eat out without getting sick.

3. I miss going to social events that all revolve around food.

4. Traveling is a pain in the butt!

5. I hate it that I am a vegetarian too!

6. THat I am STILL sick over 50% of the time, even though I am gluten free and not sure why I remain sick to some degree. Wheat makes me even more violently ill!

7. I can't stand making 5 different meals every meal for my family of 5 and washing my hands 100 times in the process.

8. I am SOOOOOOOOOOOOOO sick of everything I eat. I just want someone to make me a meal and it be different and taste good.

I am sure there are a thousand other things, but thanks for this thread.

Oh, and now I am pregnant and just want to eat a real cracker with cheese!!!!

Monica

[johnsoniu]

I am genticly thin and goin to the lady doctor today and I told her about my diet and on top of things that my family is thin, and she said do you not EVER just give in and eat a piece of pizza she was so rude! I told her no you do not understand a crumb makes me sick and she thinks I try to make myself thin..Doctors make me so mad! when I was diagnosed 5 years ago I was at that teenage year and they told me it was all in my head and I was making myself sick! Are you serious? The doctor refused to test me for celiac when I brought it to his attention. THE REASON being he could not give me medicine or sugery like every other thing he put me through that made him MONEY! wow that feels better!!!!

Congratulations, your doctor just made my list of "idiots whose a** I have to kick".

Please forward her name and location and it will be taken care of. Make sure to post anonymously so as not to implicate yourself

[mamatide]

I have 11 days of vacation coming up in May which will be spent with my little granddaughter (sweetheart of 4) and a gluten free cookbook... she and I will test out receipes so Granny can find some more interesting foods...

I highly recommend buying the Incredible Edible Gluten Free Food for Kids book:

Open Original Shared Link .com/Incredible-Edible-Gl...6431&sr=8-1

The foods are kid-friendly and we use most of them for our entire family here - especially the corn dogs (better than the normal ones), the deep fried chicken nuggets (which we use to make sweet and sour chicken balls for chinese food) and the waffles (they are delicious).

Granny and Granddaughter will find lots of great goodies in there!

Have fun.

mamatide

[Kyalesyin]

I am genticly thin and goin to the lady doctor today and I told her about my diet and on top of things that my family is thin, and she said do you not EVER just give in and eat a piece of pizza she was so rude! I told her no you do not understand a crumb makes me sick and she thinks I try to make myself thin..Doctors make me so mad! when I was diagnosed 5 years ago I was at that teenage year and they told me it was all in my head and I was making myself sick! Are you serious? The doctor refused to test me for celiac when I brought it to his attention. THE REASON being he could not give me medicine or sugery like every other thing he put me through that made him MONEY! wow that feels better!!!!

Sounds like my wife's doctors. She was a university student when she first got diagnosed, and you know what he asked, as soon as she sat down? He was literally a case of "What have you taken, how much have you had to drink and who have you slept with?"

You'd think the wedding ring, the doting partner, and the 'sXe for life' shirt would have been at least a little obvious... We found out later, after they said pretty much the same thing three times in a row, that they had those three questions along with "Could it be food poisoning", "How much caffene do you drink in a day" and "Could this be homesickness?" on a prompt sheet on their desk. They pretty much went deaf if you didn't answer one of those specific questions.

We paid out massive ammounts of money for a private lab to do the testing, and haven't been back to the doctor since.

[Guest AlabamaGirl]

4) Having to become paranoid.

Here! Here! I feel like I have become paranoid about my food and life, constantly asking the questions ...

Does it or doesn't it??? (have some trace amount of gluten)

Now where in the heck did I get into it??? (that trace amount of gluten)

The MAIN thing I hate ...

All the dad-gum energy this lifestyle takes when I'd rather be spending my brainpower and time doing other things (besides being a food sleuth)

[Guest AlabamaGirl]

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 . . .

God bless you! This brought tears to my eyes. What a precious, precious post. Kudos to you, for you are bearing much of the burden for her whether you realize it or not.

[sfm]

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.

I hear what you're saying, Deb. I do, sometimes, get frustrated because I have to be so careful about CC, and that my friends and family try, but don't always understand how easy it is to accidentally get glutened. But they do try to understand, and I appreciate that they try.

I would never expect someone not to have their own gluten - laden food simply because I cannot eat it - but my boyfriend will go out of his way to make sure I don't get sick - sometimes he just misses some little detail, that's all. I guess I do, too, sometimes - I get so tired of having to be so vigilant, and then when I'm sick, I remember why...

I try to be gentle about it - my kids, 10 and 7, will wipe up after they have snacks so that I don't have to wash my hands for the 100th time. But I do have to remind them. They probably have the most first hand experience with how sick I really was, living with me. I have heard my daughter tell my boyfriend's son that she doesn't "want to watch my mom throwing up anymore." They know how sick I get because I can't always hide it from them, as much as I have tried.

I do, sometimes, get so tense and angry at the whole situation - I did some traveling recently, and eating nothing but fruit while stopping to get the kids snacks and lunches, and not being able to find anything safe for me to eat, I was about ready to scream. And like someone else said, how many salads with grilled chicken can one eat before developing a deep-seated hatred for salad with grilled chicken??? And I felt really helpless, and I hate feeling like a victim, but that's how I felt, like I was alone and no one could possibly understand...

I think that venting is probably a healthy thing, as long as you don't blame family members for the condition itself. It totally sucks sometimes, but it is still my condition and mine to take care of, I think. And since it was so difficult for me to figure out how something like this could make me so sick, I guess I cut people a little slack for not quite getting it sometimes - it was hard enough for me, and I'm the one in pain and throwing up, you know?

Sheryll

[sfm]

So, so many I can list, but you guys covered most of them to a tee! This one really gets me! -Having friends who are jealous that you are so "slim" and they wish they could have celiac for awhile to achieve their weight loss goals!! Ugh! Ya, its sad that people want to "look" thin so badly that they would be sick to do it!

Oh, yeah, I've had that one, too!! And you want to tell them you'd kill someone for a slice of apple pie that doesn't taste like dirt...!

[sfm]

Things I hate about Celiac-

1: The days my wife comes home from work and mutters 'They offered me cake again.'

2: The mood swings and the 'I'm gonna jump off the harbour if I can't have cake' days, although those have eased now that the glutening is under control.

3: Can you kill gluten by cooking it well? Uhhhh.... no.

4: Signs in stores that say 'New! Improved recepie!' and the sinking feeling it causes in my stomach.

5: The people who think that I'm making it all up and making my wife think that she's sick, and that I'm controlling becuase I read the labels and don't let her eat wheat. That hurts more than anything else, because they knew her before she was sick, and they comment on how much better she is now, but the in the next sentence take me to one side and ask 'are you sure you know what you're doing?' I'm not a controlling partner- I actually defer to her in every situation pretty much- I know better than to mess with my wife! But when she says to me- 'I'm gonna get irrational sometimes, I might need your help' what am I supposed to do?

5 is really my big rant for the day. She's too shy to ask in restaurants about a gluten-free option half the time, so I ask, and then the people we're eating with take it the wrong way and....

*bashes head against desk*

Wait, someone said you can get glutened by orange juice! Wanna fill the ignorant partner in before I screw up?!

The restaurant thing took me awhile. It's hard when you feel like you're going to be seen as 'high maintenance'. I have found that most places are more than willing to do their best. I had a waitress make my salad herself to make sure there was no chance it was contaminated, and this was just a little pub restaurant... Orange juice? I never heard that one.

[NoGluGirl]

Dear Monica,

It really is a sucky situation. We have to worry about being paranoid all the time. Washing your hands a million times a day takes its toll on your hands! Especially when you have eczema. I think most people around us just think we are fruitcakes. I am done associating with such people. Family is supposed to be supportive, not belittling.

Sincerely,

NoGluGirl

[Mtndog]

Honestly, the thing that bugs me the most is trying SO hard and being So careful and still getting sick and not knowing why

I think it's pretty valid to be darn angry when people don't ATTEMPT to understand OR they maliciously try to prove you're not sick. There's a thread on here about someone whose spouse put gluten in the food just to prove he/she wouldn't get sick.