Celiac's Not Sticking To The gluten-free Diet

[tennisman]

Tonight I feel so angry because yesterday I read on a different site a idiot who apparently has celiac disease and didn't stick to the gluten-free diet for years . I have read so many stories of dingbats who think there so cool by not sticking to the gluten-free diet and than suddenly they want to stick to it. Makes me so angry I know it's there choice and I will admit this is really about my frustrating health problems , it annoys me so much , I have been ill for 7.5 years I stuck to my diet 1000 % since day one and have problem after problem and than I read comments about people who apparently have celiac disease don't stick to the diet and are fine health wise These people should be ill and going through bad pain and tests , not people who take the gluten-free diet seriously ! Rant over !

Anyone else get annoyed by Celiac's who think the gluten-free diet doesn't apply to them ?

[nvsmom]

It's more of a head shaker for me. Just like my uncle who had lung cancer and still smokes, and a diabetic friend who eats a bunch of sweets.... Just not smart... and it makes them seem...weak to me.

[kareng]

The ones that really make me mad are the parents who take their kids off the gluten-free diet or let them cheat. Especially the parents who have read all the info and know there is no cure but feed them gluten still!

[tennisman]

It's more of a head shaker for me. Just like my uncle who had lung cancer and still smokes, and a diabetic friend who eats a bunch of sweets.... Just not smart... and it makes them seem...weak to me.

I know it's there choice but it's disgraceful making themselves ill and risking the future for the sake of food . I agree I believe most Celiac's are strong because sticking to the diet can be tough at times . I shouldn't laugh but sometimes I hear people on simple diets complain about there diet is hard us Celiac's have things 10 x worse than any diet . celiac disease just annoys me lots stupid disease .

[tennisman]

The ones that really make me mad are the parents who take their kids off the gluten-free diet or let them cheat. Especially the parents who have read all the info and know there is no cure but feed them gluten still!

Wow that's crazy , I feel sorry for the kids

[IrishHeart]

I feel sorry for any celiac who chooses to ignore the only treatment available for this life-threatening disease. It's not rocket science and it's not that horrible. We're lucky we have a treatment for our AI disease that does not require drugs.

I used to get pissed off at the "cheaters" but now, I just think "well, it's your life and your choice". But if you do it, you do not get to b%$@# when you develop other AI diseases down the road.

And if you are a celiac who is also a parent and you ignore the treatment and then, cannot be there for your kids because you are too sick to function, well, I have absolutely no patience or empathy for that kind of foolish thinking at all. And I am all about compassion. But that is just plain stupid.

[mushroom]

Well, that's why so many people don't want to know they have it Because they know they would be one of those people who would have to cheat and them be berated by people like us, so they choose to believe they do not have it and then they can eat what they want without opprobrium.

My sister is one of these. She knows better than complain to me about her ailments, because I will just say to her, "Weeelll, could be the gluten, ya know?" Her latest was that she and her daughter (my neice) both have psoriasis. She has seen what I have been through with my psoriatic arthritis and how I have to go to the U.S. every year to get my Humira, and yet she still couldn't resist telling me! And when I started my "Weeelll.." she changed the subject.

[Adalaide]

It used to make me crazy. Now it only drives me up a wall if they are trying to kill their celiac kids. That is the one that really bothers me. Other than that though? Wanna kill yourself? Be my guest. I've known people who have both attempted and actually killed themselves through more traditional means. I have no patience or time for these people. I don't care by what means you are committing suicide, but by all means, spare all of us the sob stories about how much your life sucks because you can't put down the donut.

[IrishHeart]

okay, I just have to give props to Shroom for using "opprobrium" in a rant. .........just . so . cool beans

[mushroom]

okay, I just have to give props to Shroom for using "opprobrium" in a rant. .........just . so . cool beans

Glad you liked it; I slipped that in there just for you

[IrishHeart]

Glad you liked it; I slipped that in there just for you

[JNBunnie1]

Glad you liked it; I slipped that in there just for you

That's what she said.....

[mushroom]

That's what she said.....

And she not only liked it, she it.

[Adalaide]

That's what she said.....

It never crossed my mind that I would see a "that's what she said" joke around these parts. You never fail to crack me up. I'm sure my husband thinks I'm halfway crazy, as I frequently am laughing while perusing these forums or other random celiac related sites.

[JNBunnie1]

I couldn't let that one by, I just couldn't....

[IrishHeart]

I'm sure my husband thinks I'm halfway crazy, as I frequently am laughing

mission accomplished then..... cuz If you ain't laughing, you ain't feeling better, toots..

[KMMO320]

I hear what you are saying, and yes I agree with you.

Here is my thing though,

I have been sick for years with stomach issues (IBS, as they said) but it wasn't until 2 years ago that I started having bigger issues, brain fog, stuttering, numbness in my hands, dizzy spells, waves of nausea. I have been through so many tests in the last 2 years that have all come back negative for Celiac Disease, but I am IGA deficient, and my symptoms are fairly recent. My GI believes I am in the beginning stages, that I don't have much damage so the Endo didn't show much other than Ulcers, and I was negative for HPylori, and some slight inflammation. It wasn't enough to convince her at first that it was celiac disease.

She put me on the gluten-free diet any way and it was evident that after just a few weeks, my migraines stopped, the dizziness, nausea and stomach "distress" stopped. I start to stutter within 20 mins of eating gluten. SO she said OK..it MUST be Celiac Disease..and diagnosed me.

For me..I have a hard time wrapping my head around it. I was raised to trust doctors and I sort of feel like she wasn't totally sold on the idea, but she diagnosed me because I was really pushing it. It has only been since October that I was formally diagnosed and I go through phases of denial.

For the most part, I eat gluten-free. I even went to Disney World the first week of December and was strictly gluten-free, the chefs were amazing. But what happens is I go so many weeks of feeling awesome that I begin to doubt that I actually have a gluten problem...so then I will eat something. Some times, I feel sick right away, some times, it is days later. SO then I wonder...most people with celiac disease get violently ill, but I dont. I just get really uncomfortable.

I read on these boards of people who get deathly ill, but I have never felt that way. I don't know if my reactions are different, or if I was diagnosed before that happened to me, or if my reactions will get worse the longer I am gluten-free.

SO I guess I do cheat, because I am stupid and am still having a hard time wrapping my brain around it. I question whether I really have a problem, and then I have no doubt that there is..

I work with a kid who has been diagnosed since he was little (21 now) but he still eats gluten and never gets sick, but he is SO TINY.

So I think, as I have said, it is a psychological thing for me.

99% of the time I stay gluten-free, but I guess I test myself now and then, waiting for a big reaction...which is stupid, but I dont know how to change my thinking.

[Gemini]

I think a lot of people cheat and it seems to be largely younger people. I also think that it's the same mindset as the diabetic who cheats and they cheat a lot!

For the older people like myself, you can't do that so much when you get past 50 as the bite in the arse is really bad. If you get deathly ill from eating gluten, and I am one of them, you don't cheat. I could see how you might think that cheating is OK but if you persist in this behavior, you may pay a big price down the road. It's the one thing you have to focus on when tempted to cheat. What I don't understand is how you could see a resolution in symptoms and go back to feeling awesome and yet still question the diagnosis? Maybe a form of denial?

I hope you will work on this and strive to eat well and ditch the gluten for good. Get creative in the kitchen and then you will not feel deprived. It really does work. And stop relying so much on what a doctor thinks and says and listen to your body. Doctors are human and make many mistakes with this disease because the testing is not concrete like an x-ray. They see black and white....not grey.

[kareng]

I used to get upset by the adults here that cheated. I used to feel I should try very hard to keep them from all the problems that can happen to a Celiac who doesn't eat gluten-free - infertility, other autoimmune diseases, anemia and all the problems that causes, osteoporosis, on and on. I have decided that they are adults & they can choose to take their chances with these illnesses if they want. That is between them and their families or their god.

So people who have the info and choose a course that may not be the medically advised course, what can I do? If they don't have the info, then I feel we should help them understand Celiac and the " treatment".

I do get upset for children who have no say in their lives.

The kid who is " tiny" and whose parents didn't think his growth was reason enough to keep him gluten free.....those people make me mad.

I also feel bad for the children of a parent that thinks its Ok to not be the best physically they can be. The kids who have to watch Mom eat something they know she shouldn't and then she is in bed with a migraine or the bathroom with D and misses their events or just play time. I wonder if they are like children with substance abusers for parents - thinking the parent is choosing the " drug" over them.

[IrishHeart]

I hear what you are saying, and yes I agree with you.

I have been sick for years with stomach issues (IBS, as they said) but it wasn't until 2 years ago that I started having bigger issues, brain fog, stuttering, numbness in my hands, dizzy spells, waves of nausea. I have been through so many tests in the last 2 years that have all come back negative for Celiac Disease, but I am IGA deficient, and my symptoms are fairly recent. My GI believes I am in the beginning stages, that I don't have much damage so the Endo didn't show much other than Ulcers, and I was negative for HPylori, and some slight inflammation. It wasn't enough to convince her at first that it was celiac disease.

She put me on the gluten-free diet any way and it was evident that after just a few weeks, my migraines stopped, the dizziness, nausea and stomach "distress" stopped. I start to stutter within 20 mins of eating gluten. SO she said OK..it MUST be Celiac Disease..and diagnosed me.

SO I guess I do cheat, because I am stupid

YOU HAVE CELIAC ! and Yes, if you cheat, SORRY but you are not very smart. There, I said it. So, STOP IT!!!

I think a lot of people cheat and it seems to be largely younger people. I also think that it's the same mindset as the diabetic who cheats and they cheat a lot!For the older people like myself, you can't do that so much when you get past 50 as the bite in the arse is really bad. If you get deathly ill from eating gluten, and I am one of them, you don't cheat. I could see how you might think that cheating is OK but if you persist in this behavior, you may pay a big price down the road. It's the one thing you have to focus on when tempted to cheat. What I don't understand is how you could see a resolution in symptoms and go back to feeling awesome and yet still question the diagnosis? Maybe a form of denial?

well said, GEM....and here is what I say.. You Cheat , You gonna die.

I used to get upset by the adults here that cheated. I used to feel I should try very hard to keep them from all the problems that can happen to a Celiac who doesn't eat gluten-free - infertility, other autoimmune diseases, anemia and all the problems that causes, osteoporosis, on and on. I have decided that they are adults & they can choose to take their chances with these illnesses if they want. That is between them and their families or their god.

So people who have the info and choose a course that may not be the medically advised course, what can I do? If they don't have the info, then I feel we should help them understand Celiac and the " treatment".

I do get upset for children who have no say in their lives.

The kid who is " tiny" and whose parents didn't think his growth was reason enough to keep him gluten free.....those people make me mad.

I also feel bad for the children of a parent that thinks its Ok to not be the best physically they can be. The kids who have to watch Mom eat something they know she shouldn't and then she is in bed with a migraine or the bathroom with D and misses their events or just play time. I wonder if they are like children with substance abusers for parents - thinking the parent is choosing the " drug" over them.

AMEN, K...

[IrishHeart]

Sorry, peeps! .....but there comes a time when even the most "oh honey" type response, like you will get from me will eventually become.......

WTF! this is your life! Knock it off!

The treatment for celiac is a gluten-free diet . It is not a huge burden to be gluten-free!

It is a huge burden to be disabled, in a wheelchair, brain damaged and full of cancer and dying because you did not follow the prescribed treatment !!

(I know, I was almost there and NOW, I am NOT!) We have many beloved members battling cancer and all sorts of horrible diseases because they simply DID NOT KNOW they had celiac!!

But you all know the treatment so, stop being a dope! period!!

Enough said???

[Adalaide]

I used to get upset by the adults here that cheated. I used to feel I should try very hard to keep them from all the problems that can happen to a Celiac who doesn't eat gluten-free - infertility, other autoimmune diseases, anemia and all the problems that causes, osteoporosis, on and on. I have decided that they are adults & they can choose to take their chances with these illnesses if they want. That is between them and their families or their god.

So people who have the info and choose a course that may not be the medically advised course, what can I do? If they don't have the info, then I feel we should help them understand Celiac and the " treatment".

I do get upset for children who have no say in their lives.

The kid who is " tiny" and whose parents didn't think his growth was reason enough to keep him gluten free.....those people make me mad.

I also feel bad for the children of a parent that thinks its Ok to not be the best physically they can be. The kids who have to watch Mom eat something they know she shouldn't and then she is in bed with a migraine or the bathroom with D and misses their events or just play time. I wonder if they are like children with substance abusers for parents - thinking the parent is choosing the " drug" over them.

This is very much my attitude. I look at those children and it just breaks my heart. No, mommy isn't addicted to crack, she is addicted to bread. It is so simple to be healthy for your children. I didn't know why I was so sick, I look back and it just kills me a little inside to think of what my children were robbed of because of this. There was, in the not so distant past, a woman who just couldn't give up wheat, not even for her kids, and several were berated for finally giving her a good swift kick in the arse. (Which I only pray helped her see the light. I hope she has finally gotten help.) Doctors are only human, hell I basically had a screaming neon celiac sign over my head for 3 decades and was still only diagnosed by accident. Eat wheat, don't, whatever, but Irish is 100% right. If you have celiac and you're eating wheat you aren't exactly the sharpest spoon in the shed. We all give time to come to terms with it but eventually we'll all give you a collective swift kick. And don't do it for years then cry about your 5 new auto-immune diseases. You knew the risk. That is what bothers me, people know damn well what they're doing to themselves, know the risk but then cry when they lose the lottery. It is pretty much like crying because you threw yourself in front of a moving car and it actually hit you. DUH!!! It may hit the brakes, it may stop in time, but what kind of person takes that risk?

[IrishHeart]

Doctors are only human, hell I basically had a screaming neon celiac sign over my head for 3 decades and was still only diagnosed by accident. Eat wheat, don't, whatever, but Irish is 100% right. If you have celiac and you're eating wheat you aren't exactly the sharpest spoon in the shed. We all give time to come to terms with it but eventually we'll all give you a collective swift kick. And don't do it for years then cry about your 5 new auto-immune diseases.

I agree. After I was misdiagnosed for my entire life, and I FIGURED IT OUT MYSELF, I said to my new GI doc,

"seriously? I may as well have had a GIANT RED ARROW pointing down to my head Glowing Celiac! Celiac! Celiac!"

and he said: "I'm sorry. I see it ...and I cannot apologize enough for my profession."

This is not about how long we all went UnDXED (because we all have horror stories that make us weep) . It is about making an adult rational decision to follow the only KNOWN prescribed EFFECTIVE protocol we know for this AI disease when we are diagnosed

(We are lucky; it does not involve drugs)

Anyone who chooses to ignore it is just foolish.

Sorry for the CAPS but sometimes, I think maybe it HELPS TO seem like I am YELLING!!

[Adalaide]

After I was misdiagnosed for my entire life, and I FIGURED IT OUT MYSELF, I said to my new GI doc,

"seriously? I may as well have had a GIANT RED ARROW pointing down to my head Glowing Celiac! celiac! Celiac!"

and he said

I'm sorry. I see it and I cannot apologize enough for my profession.

This is not about how long we all went UnDXED, or what we do once we learn.. It is about making an adult decision to follow the only KNOWN prescribed EFFECTIVE protocol we know for this Ai disease (we are lucky, it does not involve drugs)

Anyone who chooses to ignore it? Is just foolish.

Yes. I only pointed that out because of the mention of not entirely trusting a doctor and diagnosis. Lots of us don't always trust doctors, but so what? There is one thing we can certainly trust and it is our bodies. So yes, if you respond well to not eating gluten, then respond poorly to eating it, choosing to eat it is simply foolish. (In my defense, I am much better at real conversation and don't make myself look like a moron quite as often!)

[IrishHeart]

And it is seemingly insignificant, I know, but since I am on a ranting roll...what the heck!

Um,.....it is "celiacs" (plural form ) ...not "celiac's.".... (possessive form)

SO sorry, but l see this mistake all the time and I had to get that out of my English Professor system.

With all due respect, tennisman. Please, please ..... do not be mad at me?

I am thinking....perhaps this was just a typo.?

Whew!.....thanks, I feel so much better.

Big hugs to all! XX