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nikky

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nikky Contributor

ok ... my freinds sister was diagnosed with coeliac a while back .. a few days ago my freind (Chloe) said her sister (Genna) was wrongly diagnosed.

i wasnt aware that was possible ..

Me: Hows Genna?

Chloe: ooh i forgot to tell you she doesnt have coeliac.

Me: what .. i thought she tested positive

Chloe:yea she did but after 5 months they retested and she hasnt got it.

Me: was she gluten free when they tested her??

Chloe: yea

Me: then they are going to be negative *rolleyes*

Chloe: No, the doctors said the first tests must have been wrong

Me: you cant have a false positive for coeliac

Chloe: well Genna did....

Me: *headbang*

is chloe right?? ive always thought that you cant get a false poitive for coeliac.. thats how my peadiatrition diagnosed me whith coeliac even though i was pretty much asymptomatic and my biopsy was completely normal (5 pathologists looked at the samples and all agreed that there was no damage). Please help she confused me a little and now its bugging me.


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aikiducky Apprentice

If they retested her blood after five months gluten free, it's SUPPOSED to be negative, that's a sign that she has been following the diet. It's not a sign that she doesn't have celiac any more, her doctors are operating on seriously outdated information.

You could maybe try to show her dr. Greens book or something to show that you're not just making it up?

Pauliina

Ursa Major Collaborator

That is TERRIBLE! Of course those tests were negative, that showed she was doing a good job of doing the diet. I imagine she will be pretty sick again soon enough.

Many teenagers get what is called a 'honeymoon period' of celiac disease, when they show no symptoms, even when eating gluten. But eventually it will backfire big time, and they will get very ill. Many in their early twenties, and others later, in the meantime having acquired other autoimmune diseases on the way as a result of eating gluten.

HAK1031 Enthusiast

sigh. I have 3 friends that can't have gluten- 2 gluten intolerant, one celiac. One of the gluten intolerant ones routinely cheats, like full on eats cheez its and bread and what not, and just deals with the symptoms-in her case headaches that mean her liver and kidneys are having a hard time...brilliant, right? The other gluten intolerant one is pretty good, his mom is full on celiac so he gets it. But he still buys a sandwich in the cafeteria and then ditches the bread. The third one is very good, and she as been super helpful to me. I was at her house once and her sister was arranging a platter of chips and dip for a party, and a few of the chips accidently fell on a plate with pretzels. She told us "DON'T EAT THOSE!!! Those chips touched pretzels!!" So I know they're good. But she claims that, under the advice of her dietician, she is OK with oats (like quaker oats) and small amounts of barley malt. She is definitely celiac (endoscopy and bloodwork confirmed) but doesn't react to them (honeymoon phenomenon like Ursa described). She doesn't really understand that she's still doing damage. But she understands that these DO make me sick, and I avoid them like the plague.

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      thank you RMJ! That is very helpful advice. Good to know we aren’t crazy if we don’t do the endoscopy. We are going to try the gluten free and see how symptoms and levels improve.    thank you Wheatwacked (love the username lol) that is also reassuring. Thankfully she has an amazing and experienced pediatrician. And yesss I forgot to mention the poop! She has the weirdest poop issues.    How long did it take y'all to start seeing improvement in symptoms? 
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