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Getting Diagnosed


ErraticBinxie

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ErraticBinxie Explorer

This is the first celiac forum I have been a part of and I am so excited that I have found it. My name is Lexi, I'm 17 and I have been gluten-free for 9 years.

I have a question that is diagnosis related...

My mom was diagnosed with celiac when I was five and I started showing symptoms years later when I was eight and I started on the diet. I never was diagnosed by a doctor so when I need medical proof that I have celiac I can never get it. I asked for a blood test this year so I could finally be diagnosed. The lab said they could not detect gluten sensitivity unless I had been on a gluten diet for a period of time. Of course I can't just go off my diet. So I want to know if there are any ways to diagnose that would accomadate my situation now.

And one more thing...I have never met anyone my age that has celiac. So someone please contact me....

aim: ErraticBinxie

E-mail: Lexietualatin@juno.com


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tarnalberry Community Regular

Having been off gluten for a number of years, there is no test that will be able to tell you if you're celiac. The tests all check for gluten antibodies, and if you're not ingesting gluten, you won't produce antibodies to it. You could get the gene test. It won't tell you if you have celiac disease, but it will tell you if you have one of the two genes that leads to about 95% of all cases.

ErraticBinxie Explorer

Thanks for the info. That helps a lot!

-Lexi

stargirl Apprentice

I'm a clinical celiac. I went on the diet without a positive blood test or biopsy but my gastroenterologist supports me. He says that a clinical diagnosis is fine in this case, since celiac has such unusual symptoms. Why do you have to have a medical test to prove you're a celiac? I'm also 17 and have never met a celiac my age, so I would love to talk to you online sometime. My AIM is funnylaces. Hope to talk to you soon.

MySuicidalTurtle Enthusiast

Just a question. . .why would you need medical proof that you're a celiac?

celiac3270 Collaborator

Seems like a lot of 17-year-olds on the board :D

stargirl Apprentice

Are you trying to say something celiac3270? :P


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celiac3270 Collaborator

Say what? I'm not, but a LOT of people, particularly under the "17 with celiac" thread, are seventeen. :D

stargirl Apprentice

Surprisingly enough that is true, now everyone just needs to move to California so we can hang out together. Have a junk food night :D

  • 4 weeks later...
ErraticBinxie Explorer

The reason that I want to have medical proof that I have celiac disease is because of college. There are scholarships available for people that have celiac disease. Don't ask me why but they just do. And couldn't we all use a little money for college?

stargirl Apprentice

The only thing I would say to that is to look around and see if you can find a gastrointerologist who will give you a positive diagnosis without making you go on gluten and be biopsied. I found one who will legally state that I am a celiac even without what would be considered "conclusive results." Just an idea. Where have you found a scholarship for celiac disease? I'm in the market for scholarships but I haven't run across any for people with celiac disease. Thanks

Guest ~wAvE WeT sAnD~

Lexi-

They have scholarships? I should have gotten celiac disease three years ago!!! :D

Good Luck in school!

byuiemily Newbie

I didn't know they had scholarships for people with Celiac...boy could i use something like that! How did you find out about them?

ErraticBinxie Explorer

I don't know specifically where you can find scholarships but I think you will be able to find them online.

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    • trents
      Let me hasten to add that if you will be undergoing an endoscopy/biopsy, it is critical that you do not begin efforts to reduce gluten beforehand. Doing so will render the results invalid as it will allow the small bowel lining to heal and, therefore, obscure the damage done by celiac disease which is what the biopsy is looking for.
    • Scott Adams
      This article, and the comments below it, may be helpful:    
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      That’s a really tough situation. A few key points: as mentioned, a gluten challenge does require daily gluten for several weeks to make blood tests meaningful, but negative tests after limited exposure aren’t reliable. Dermatitis herpetiformis can also be tricky to diagnose unless the biopsy is taken from normal-looking skin next to a lesion. Some people with celiac or DH don’t react every time they’re exposed, so lack of symptoms doesn’t rule it out. Given your history and family cancer risk, this is something I’d strongly discuss with a celiac-experienced gastroenterologist or dermatologist before attempting a challenge on your own, so risks and benefits are clearly weighed.
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      https://celiac.org/glutenexposuremarkers/    yes, two hours after accidents ingesting gluten I am vomiting and then diarrhea- then exhaustion and a headache. see the article above- There is research that shows our reactions.
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