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I have celiac disease - AMA!

Its mostly in the title but for a bit of background I'm a teen girl who has celiac disease, AMA! 😊

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what are your symptoms?
Original post by Anonymous
what are your symptoms?


Well, before I was undiagnosed I had loads. When I had to eat gluten for my diagnosis endoscopy, it felt like a knife was being driven into my left side for most of the day, every day. I had certain symptoms I feel uncomrtable discussing (lol) that relate to my intestine also. I got muscle spasms after eating gluten in all of my limbs and abdomen, my brain was so foggy I could barely pay attention to anyone. I felt exhausted and horribly weak constantly - no break from the lethargy. I found out later that my iron stores had been almost depleted or something along that line. I'd get random ticks (I think thats what you call them) for example I'd just randomly have to shake my arm or turn my head a couple of times and I'd have no control over it. I got a rash on my face and its caused long lasting problems with my stomach acid. My nails were so weak parts of them would flake off and my hair was horrible and dry (unhealthily, not caused by heat products and such) I had bad headaches all the time and my vision went so blurry a couple years before diagnosis I needed glasses to read (My vision is fine now after not eating gluten) So yeh, lets just say I had a lot of symptoms 😂
(edited 3 years ago)
When were you diagnosed? I have celiac disease too, since I was 2 years old.
What triggered your decision to have an endoscopy?
Original post by sister of turtle
When were you diagnosed? I have celiac disease too, since I was 2 years old.


When I was 13 but I had symptoms as early as when I was 8
Original post by AnaClarkson
What triggered your decision to have an endoscopy?


I could barely get out of bed because my symptoms were too bad and I wanted a proper diagnosis of why I felt like that
Do you believe there are coeliacs who are asymptomatic, despite having an endoscopy?
Original post by AnaClarkson
Do you believe there are coeliacs who are asymptomatic, despite having an endoscopy?


Yep you can be completely asymptomatic. Some coelicas can eat gluten and feel nothing but its still damaging their intestines in the same way
Original post by LimeElephant
Yep you can be completely asymptomatic. Some coelicas can eat gluten and feel nothing but its still damaging their intestines in the same way

Okay, just checking! I always feel like a fake when I explain it!
How did you find the endoscopy?
Original post by black tea
How did you find the endoscopy?


I had general aneasthetic so I slept throught the whole thing. My throat hurt afterwards slightly though
Is there any very cheap and extremely simple food you eat? Say, for instance, when you can't grab a sandwich.

I'm looking for ideas for very basic food beyond rice (TKG in particular for breakfast), baked potatoes, and nuts and raisins.
Original post by Surfer Rosa
Is there any very cheap and extremely simple food you eat? Say, for instance, when you can't grab a sandwich.

I'm looking for ideas for very basic food beyond rice (TKG in particular for breakfast), baked potatoes, and nuts and raisins.


Usually if I cant find a gluten free sandwhich I'll go to the gluten free section and try find some bread rolls or something and then get fruit. Its really boring but theres not too much choice, especially if its a shop like the co-op
Reply 14
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Ðeggs
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Do you think that with the rise or celebrities and magazines promoting “gluten free” diets as healthy, weight losing slimming etc, people and eating establishments are underplaying the risk of coming into contact with gluten for people coeliac disease and treating cross contamination concerns as insignificant?
Original post by Deggs_14
Do you think that with the rise or celebrities and magazines promoting “gluten free” diets as healthy, weight losing slimming etc, people and eating establishments are underplaying the risk of coming into contact with gluten for people coeliac disease and treating cross contamination concerns as insignificant?


Definetely! Its so annoying when I cant find normal gluten free pizza and whatnot because the only options are 0% fat 0% salt 0% everything thin stone baked crust with vegetables

And Papa Johns released this year a gluten free pizza with a base made from butternut squash of all things that they say people with gluten sensitivities/celiacs cant eat because of kitchen methods.
Original post by LimeElephant
Usually if I cant find a gluten free sandwhich I'll go to the gluten free section and try find some bread rolls or something and then get fruit. Its really boring but theres not too much choice, especially if its a shop like the co-op

Can you tolerate barley?
Original post by Muttley79
Can you tolerate barley?


No, not unless its barley with the gluten taken out
Original post by LimeElephant
No, not unless its barley with the gluten taken out

Some coeliacs can but many can't - how careful do you have to be about contamination? We have to use different cooking trays and spoons ....

Do beware - some of the gluten free cereal is very high in sugar - the one that isn't is £3.70 a packet [they are a bit like weetabix to look at].
Original post by Muttley79
Some coeliacs can but many can't - how careful do you have to be about contamination? We have to use different cooking trays and spoons ....

Do beware - some of the gluten free cereal is very high in sugar - the one that isn't is £3.70 a packet [they are a bit like weetabix to look at].


Very careful, I dont take the class anymore but when I used to do food tech I couldnt be in the classroom when they were cooking (with flour) because once the class was making pizza (I wasnt doing any cooking but I was in the classroom) and I when I was breathing it in and stuff it must have found its way into my mouth because I had to have a day off school the next day I felt so bad.

And yeh the gluten free prices are terrible!
(edited 3 years ago)

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