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How Long Did It Take You Yo Be Diagnosed With Celiac?

jamrock

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jamrock Rookie
jamrock
Posted

How long did it take you to be diagnosed?

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Ursa Major Collaborator
Ursa Major
Posted

Well, it took me 52 years of symptoms before I diagnosed MYSELF. All my life doctors were too ignorant to see I have celiac disease (or at the very least, gluten intolerance).

My long list of symptoms as a child (up to the age of 26) were: Skinny as a rail with inability to gain weight, chronic back pain, extreme fatigue, brain fog, intermittent diarrhea and constipation, gas, bloating, rashes, joint and muscle pain...........I am probably forgetting a few.

Then, when I got pregnant, uncontrollable weight gain with each pregnancy (I gained 47 pounds with the first pregnancy) and afterwards inability to lose the weight. Terrible pregnancies, with bleeding episodes, and feeling sick for the whole nine months every time. Plus I had eight miscarriages.

Then in May 2005, after trying a herbal bowel cleanse, I got really sick, with chronic watery diarrhea, and being bedridden much of the summer, until I finally figured it out on October first of that year.

jamrock Rookie
jamrock
Posted
  • Author

Ursa

Did you have any cramping all over your body? Any shortness of breath as if you were dying?

Ursa Major Collaborator
Ursa Major
Posted

Yes, I did get cramping. If you consider regularly almost dying of asthma attacks (not a real problem any more), then obviously I had severe shortness of breath.

But apart from the asthma, I get shortness of breath simply from lack of energy right now, which I attribute to adrenal fatigue and thyroid problems.

jamrock Rookie
jamrock
Posted
  • Author

yep I several of those almost dying asthma attacks that sent me to the ER so many times each time No clue or answer to my problems Ive been tp all the major hospitals in my island both public and private from one extreme of testing to the other I think Ive been thru so much blood panels it is unbelievable.

My husband thought I was faking these attacks to get attention :rolleyes: and then things got worse and still the doctors kept saying they dont know but thank God for www and this forum finally I can identify the problems I am having. Everday I read more and say "Someone else has experienced these symptom too.

I am now trying deal with the food choices.

thanks for responding Ursa you've been great help

Kaycee Collaborator
Kaycee
Posted

Jamrock

It took a long time for me to realise I had coeliac. Like Ursa, I have probalby had it most of my life. Things slowly got worse until about two years ago when things got worse quicker, but I still put off going to the doctor as I was acared. But with a little research and a bit self diagnosing I figured it out and went to the doctor and it was confirmed not long later.

I feel good now and wonder why I had to put up with things for so long.

I have heard it can take a long time to get a diagnosis from the medical profession as the doctors are not always thinking about coeliac, but I believe that is changing.

Cathy

wowzer Community Regular
wowzer
Posted
How long did it take you to be diagnosed?

I am still trying to figure all of this out. I decided to try the gluten free diet. Officially started on New Year's Day. I seem to feel hungry and can't decide what to eat. I grew up with a little sister that celiac, so I have a good basis of the diet. Anyone know of a good granola like bar that is gluten free? For some reason I'm finding breakfast the hardest. I ususally take my breakfast to work and snack on it. Any ideas would be appreciated.

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GlutenWrangler Contributor
GlutenWrangler
Posted

I was lucky. It was only 2.5 years before my diagnosis, but those 2.5 years were pure hell.

-Brian

Guest cassidy
Guest cassidy
Posted

It took me 29 years for my mother to diagnose me and 53 years for her to figure it out for herself. I also had asthma attacks when I was little. We were at the hospital so much they knew my name. They thought I was faking so they gave my mom a shot of saline to give me to see if I would stop because they always gave me epi shots at the hospital. It didn't work, and we were back in the er and I had a bruise because my mother couldn't give shots. My last asthma attack prompted me to try to figure all this out - I was at a bar and it was cold outside and smoky. My husband had never seen me like that and it was awful. I also had an attack at a football game - spent the whole game in the stadium emergency area - another embarassing one.

Good luck with the diet - it does get easier.

I am still trying to figure all of this out. I decided to try the gluten free diet. Officially started on New Year's Day. I seem to feel hungry and can't decide what to eat. I grew up with a little sister that celiac, so I have a good basis of the diet. Anyone know of a good granola like bar that is gluten free? For some reason I'm finding breakfast the hardest. I ususally take my breakfast to work and snack on it. Any ideas would be appreciated.

There are tons of granola bars that are gluten-free. If you search here under granola I bet a post will come up with a big list.

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      Hi,  My 7 year daughter has complained of this in the past, which I thought were part of her glutening symptom, but more recently I have come to figure out it's part of her histamine overload symptom. This one symptom was part of her broader profile, which included irritability, extreme hunger, confusion, post-nasal drip. You might want to look up "histamine intolerance". I wish I had known of this at the time of her diagnosis, life would have been much easier.  I hope you are able to figure out. 
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