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Question


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 It's not a sign that she doesn't have celiac any more, her doctors are operating on seriously outdated information.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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    • trents
      Keep us posted and let us know the results of the biopsy. Your case is atypical in a way in that you have this high DGP-IGA but normal TTG-IGA so knowing how it turns out will give us more data for similar situations that may be posted in the future. 
    • Skg414228
      Fair enough! I very easily could have misread somewhere. Celiac is very confusing lol but I should know in a little over a month what the final verdict is. Just thought chatting with people smarter than myself would get me in the right mindset. I just thought that DGP IGA was pretty high compared to some stuff I had seen and figured someone on here would be more willing to say it is more than likely celiac instead of my doctor who is trying to be less direct. She did finally say she believes it is celiac but wanted to confirm with the biopsy. I did figure it wouldn't hurt seeing what other people said too just because not all doctors are the best. I think mine is actually pretty good from what I have seen but I don't know what I don't know lol. Sorry lot of rambling here just trying to get every thought out. Thanks again!
    • Scott Adams
      Yes, these articles may be helpful:    
    • trents
      No, you don't necessarily need multiple testing methods to confirm celiac disease. There is an increasing trend for celiac diagnoses to be made on a single very high tTG-IGA test score. This started in the UK during the COVID pandemic when there was extreme stress on the healthcare system there and it is spreading to the US. A tTG-IGA score of somewhere between 5x and 10x normal is good enough by itself for some physicians to declare celiac disease. And mind you, that is the tTG-IGA, not the DGP-IGA. The tTG-IGA is the centerpiece of celiac antibody testing, the one test most commonly ordered and the one that physicians have the most confidence in. But in the US, many physicians still insist on a biopsy, even in the event of high tTG-IGA scores. Correct, the biopsy is considered "confirmation" of the blood antibody testing. But what is the need for confirmation of a testing methodology if the testing methodology is fool proof? As for the contribution of genetic testing for celiac disease, it cannot be used to diagnose celiac disease since 40% of the general population has the genetic potential to develop celiac disease while only 1% of the general population actually develops celiac disease. But it can be used to rule out celiac disease. That is, if you don't have the genes, you don't have celiac disease but you might have NCGS (Non Celiac Gluten Sensitivity).
    • Skg414228
      Okay yeah that helps! To answer your last bit my understanding was that you need to have multiple tests to confirm celiac. Blood, biopsy, dna, and then I think symptoms is another one. Either way I think everything has to be confirmed with the biopsy because that is the gold standard for testing (Doctors words). You also answered another question I forgot to ask about which is does a high value push to a higher % on those scales. I truly appreciate your answers though and just like hearing what other people think. Digging into forums and google for similar stuff has been tough. So thank you again!
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