Do You Ever Start To Think...

[Natlay]

that this is all in your head? I had been eating gluten free/dairy free for a few months and felt sooo much better...then it started again so I got tested for corn and soy intolerance too. I felt a lot better after taking these foods out but then the test came back negative. I started this week eating only meat, fruit, and vegetables and finally feel good again. But...I miss all my favorite foods I find myself constantly daydreaming about my favorite cookies and chips and then I tell myself that the blood test was negative so I can have these things again. Then I remember how much better I feel without them...

(Apparently I go crazy when deprived of cookies , I had been eating 3 or 4 boxes of enjoy life cookies in one sitting)

[plantime]

Some people have tried telling me that it's all in my head, but I know that it is also in my body. I am not allergic to chocolate, but it sure does make me sick if I eat it.

[Natlay]

Yeah...I know that my body doesn't like certain foods and I feel better when I don't eat them. But...my mouth doesn't really care how my stomach feels...it wants cookies I've been very good about eating this week but sometimes it's really hard. I just have to remind myself how good my stomach feels without these things.

[Kyalesyin]

When my partner first started suffering we got told that it was just an anxiety disorder and painful periods and she should shut up and 'just ignore it'. Its probably worse for younger people, because the doctors treat us like kids and act like we can't possibly know whats going on in our own bodies. We just got told we were overreacting and they refused to do food tests. We had to get them done independantly, so we still don't have an official diagnosis.

It did honestly get to the point where we were gonna give up and say 'Ok, maybe we are just overreacting', but a gluten/wheat free diet has worked wonders.

[prinsessa]

Sometimes I feel like it is all in my head....until I get glutened and I realize how sick I was feeling. I thought it was normal for me to have gas all the time and be constantly tired. Now I realize that it isn't normal for me. I still get cravings sometimes, but they are starting to go away. It has been about 6 months since starting the gluten free diet and I have never felt better.

[Debbie65]

I don´t feel like it´s all in my head but I sometimes feel that I´m not sure if I´ve been glutened or if I have a virus or something and I´m just blaming the symptoms on Coeliac.

Doesn´t matter I suppose, if I´m sick, I´m sick wether gluten or some other culprit is to blame.

[PJKR]

Ouch Debbie! That's how I learn too!

I was told my life long stomach problems were "in my head" and because I was "so high strung" by the Dr's in my family. "The physician that treats himself has a fool for a patient" sort of thing.We were too close for any kind of clinical detachment. However, the Prozac did help the depression until I found out what was wrong so it was a win/lose sort of situation like most things.

So... when my youngest and I eat gluten,we get sick. Period. Medicine isn't infallible and people know their bodies better than a stranger no matter what that stranger might or might not have seen or studied.

Also, I have noticed that a happy medium is the way to go! In everything. Eating 3 or 4 boxes of cookies,a whole cake(hadn't had one in 3 yrs and I was skinny darn it!) or anything else that takes on an extreme is likely to have negative effects. Also, if I get glutened I am much more sensitive to the foods I can eat fine in moderation as well. I hope you get better soon.PJ

[Debbie65]

Ouch Debbie! That's how I learn too!

I was told my life long stomach problems were "in my head" and because I was "so high strung" by the Dr's in my family. "The physician that treats himself has a fool for a patient" sort of thing.We were too close for any kind of clinical detachment. However, the Prozac did help the depression until I found out what was wrong so it was a win/lose sort of situation like most things.

So... when my youngest and I eat gluten,we get sick. Period. Medicine isn't infallible and people know their bodies better than a stranger no matter what that stranger might or might not have seen or studied.

Also, I have noticed that a happy medium is the way to go! In everything. Eating 3 or 4 boxes of cookies,a whole cake(hadn't had one in 3 yrs and I was skinny darn it!) or anything else that takes on an extreme is likely to have negative effects. Also, if I get glutened I am much more sensitive to the foods I can eat fine in moderation as well. I hope you get better soon.PJ

Doctors are such idiots(SOME OF THEM). My father had ME about 15 years before anybody knew what it was and was sent to pshyciatrists for years. Once they had a label - everything that went wrong with him after that was ME - no invetsigations, nothing.

Now my father is very sick, he has ME, psorisic arthritis, some bone problem, all diagnosed recently but blame don ME for years.

Now he has a liver problem with all the pain killers they´ve given over the years. Once they have a label .....

[Kyalesyin]

Doctors are such idiots(SOME OF THEM). My father had ME about 15 years before anybody knew what it was and was sent to pshyciatrists for years. Once they had a label - everything that went wrong with him after that was ME - no invetsigations, nothing.

Now my father is very sick, he has ME, psorisic arthritis, some bone problem, all diagnosed recently but blame don ME for years.

Now he has a liver problem with all the pain killers they´ve given over the years. Once they have a label .....

I hear you with the 'once they have a label' thing, although in our case it was 'fussy young woman'. They took one look my wife's symptoms and knew somehow that it was 'all down to the hormones' and told us just to stop worrying.

[ebrbetty]

never, not with the stomach pain I get..I wish I could die its so bad

I don't think other celiacs get severe pain like i do, at least I don't see much talk about it

[Debbie65]

I hear you with the 'once they have a label' thing, although in our case it was 'fussy young woman'. They took one look my wife's symptoms and knew somehow that it was 'all down to the hormones' and told us just to stop worrying.

Yeah,

I was once sent home with an ill 10 month old baby from the hospital 5 nights in a row with a condescending " babies do vomit you know" My answer was

" have you seen the Exorcist?"

After 2 more days a young pre med couldn´t rule out meninjitis and sent me to the hospital with a letter and my son was in an isolation ward for 10 days. They eventually cultivated a "rota " virus in the lab and men in white suits came and tested averthing in the house and found nothing.

I´ve since read on the net that children under 1 can die from this.

I understand that when new things arise that the doc´s can be as puzzled as we are( this was 16 years ago) but they should not try to cover their lack of knowledge by making the patient feel stupid.

[Kyalesyin]

Yeah,

I was once sent home with an ill 10 month old baby from the hospital 5 nights in a row with a condescending " babies do vomit you know" My answer was

" have you seen the Exorcist?"

After 2 more days a young pre med couldn´t rule out meninjitis and sent me to the hospital with a letter and my son was in an isolation ward for 10 days. They eventually cultivated a "rota " virus in the lab and men in white suits came and tested averthing in the house and found nothing.

I´ve since read on the net that children under 1 can die from this.

I understand that when new things arise that the doc´s can be as puzzled as we are( this was 16 years ago) but they should not try to cover their lack of knowledge by making the patient feel stupid.

For us it was only grudgingly admitted that there might be the 'outside chance' of a food intolerance after everything else had been ruled out, and by everything, I mean everything. Liver, thyroid, diabetes, hormones, anaemia, the works. She had a totally unecessary laparoscopy because it was more likely, in the eyes of the doctor, that the pain, bloating and exhaustion were caused by 'ovarian cysts' than a food intolerance.

I guess I was lucky in that the two things I struggle with, one I got from my mother and so never really ate anyways, and one was blindingly obvious because the results were instant when I had it.

We always had to see the doctors at the university, and their first assumption was always 'drugs' 'too much alcohol' or 'who have you slept with?'

I dread to think what could have happened if someone went in with something more serious.

[Debbie65]

never, not with the stomach pain I get..I wish I could die its so bad

I don't think other celiacs get severe pain like i do, at least I don't see much talk about it

I get pain like that, my husband knows when I have it because when he wakes up I´ve either fallen asleep in a sort of foetal position with a hot water bottle between my legs and my stomach to ease the pain or he finds me in a bath that´s so hot my skin is red raw. These are the only things thatPARTIALLY sooth the pain when it gets that bad.

[Kyalesyin]

never, not with the stomach pain I get..I wish I could die its so bad

I don't think other celiacs get severe pain like i do, at least I don't see much talk about it

My wife got the pain you were describing. Of all things, clutching a bag of frozen peas to her stomach eased things off. She was sometimes in so much pain she coudn't move, and got told by the doctor that it was most likely cysts on her ovaries. Its very distressing to see someone in that much pain.

Since we started going gluten-free its eased, athough she still has troublesome periods.

[ravenwoodglass]

never, not with the stomach pain I get..I wish I could die its so bad

I don't think other celiacs get severe pain like i do, at least I don't see much talk about it

Your not alone. The pain is worse than giving birth to my 10 lb child.

[PJKR]

The PAIN! Ug! I've had a large baby like Ravenwoodglass. The pain of gluten right up there! My labor to Mr.Big baby lasted 4 hrs ,it was over and I was happy! This lasts DAYS sometimes and I'm desperalty trying to function and just want to sit in the middle of the floor and cry. I "sedate" myself with catnip,take hot baths and sleep with a pillow smashed into my stomach. My periods have always been awful too. I passed out a couple times as a teen. I was so damn skinny I didn't even get my period until I was 16! At least I got it late so I had to suffer less! They've gotten much better since I've gone gluten-free. My PMS doesn't make me completely psycho either!("What in H*ll do you mean by what time is it???") Eeek! PJ

[up-late]

I got told my pain was IBS, it took them two years to come to this conclussion. I don't know if the pain is gluten related yet (only just started the diet) but from what I'm hearing it's sounding familiar.

My pain was so bad for the first few years that it was worse than child birth, it was worse than ovarian cysts, it was even worse than kidney stones. I'll never forget how it felt, the thought of it comming back that bad terrifies me, every time I get pain I get panicky, the only thing that worked was a few sips of plain pepermint tea, rubbing my stomach very gently in one direction and a very warm bed where I couldn't move because the minute I did my stomach started to spasm. If that was IBS then it should qualify as a disability.

[ms-sillyak-screwed]

-

[Corkdarrr]

never, not with the stomach pain I get..I wish I could die its so bad

I don't think other celiacs get severe pain like i do, at least I don't see much talk about it

Nope, me too. Stomach pains. Horrible, awful, literally crippling pain. I don't know how else to describe it. I've been getting them again lately, which tells me that my diet has gotten very messy. The other day I was sitting on the floor waiting for a class, and my friend came to help me up by my arm. I made a pathetic little noise and doubled back over onto the floor. Between that and headaches, I honestly don't know how I get anything accomplished!

I guess it doesn't get talked about as much on here because it doesn't have all the glamour and action of D and vomiting!

-Courtney

[pamelaD]

Mine was triggered after having my gall bladder out at the age of 40!

[nikki-uk]

We always had to see the doctors at the university, and their first assumption was always 'drugs' 'too much alcohol' or 'who have you slept with?'

One of the forst questions my husband's G.I doc asked him was

''Do you take illegal drugs?''

LOL!-He should of answered ''Only when the pain in my gut is bad''!!

Only joking of course,but I know he was quite offended by that question!!

[plantime]

Pain? Yep, pain. When I get glutened, it feels like my gut is being ripped out, and it lasts for several days. I can't move, sit, stand, or lie down. I was amazed the last time it happened, I fully expected to find massive amounts of blood in my stool, it hurt so bad. There was none, thankfully, but I would not have been surprised.

Welcome, Mike-Sans-Gluten. This board is a very good place to talk, vent, and learn.

[sillyyak]

Do I ever start to think this is in my head? Interesting question!

I USED to think it was all in my head - prediagnosis. Not only did I think it was in my head, I would use self-validating statements to "justify" what I thought was the way I was supposed to feel (such as, "I have diarrhea because I am nervous about X" or "I cannot eat before I take a plane because I get airsick and then I will have diarrhea" or things of the like). The curious thing is that I thought this was the way EVERYONE felt. It never occured to me that I had sprue. Never.

AFTER I was diagnosed and went gluten free- essentially cold turkey - and started feeling better after about 6 months- like not having diarrhea after every meal and the almost complete eradication of fatigue and body aches, I KNEW it was NOT in my head. And it made me angry to know that I was supposed to be feeling one way when all my life I was feeling the opposite AND thought that the way I was feeling pre-diagnosis was normal!

I know it is not in my head.

[jerseyangel]

Do I ever start to think this is in my head? Interesting question!

I USED to think it was all in my head - prediagnosis. Not only did I think it was in my head, I would use self-validating statements to "justify" what I thought was the way I was supposed to feel (such as, "I have diarrhea because I am nervous about X" or "I cannot eat before I take a plane because I get airsick and then I will have diarrhea" or things of the like). The curious thing is that I thought this was the way EVERYONE felt. It never occured to me that I had sprue. Never.

AFTER I was diagnosed and went gluten free- essentially cold turkey - and started feeling better after about 6 months- like not having diarrhea after every meal and the almost complete eradication of fatigue and body aches, I KNEW it was NOT in my head. And it made me angry to know that I was supposed to be feeling one way when all my life I was feeling the opposite AND thought that the way I was feeling pre-diagnosis was normal!

I know it is not in my head.

This is very true for me, too!

I went for years thinking it was just the way I worked--I thought I was "just nervous" or some such thing. I thought that the stress was making me get "sick" so often. It didn't help that the people around me thought the same thing and labeled me "the sensitive one"

It was after I began to rid my diet of the gluten, and then the other sensitivites that I realized that it was never all in my head!

[ebrbetty]

I should print this out, my Dr still tells me Celiac CAN NOT cause severe pain, when I mention other ppl with celiac disease said they also get it so bad they want to die he said "its not Celiac disease they think they have!!!! GGGRRRR