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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Getting Diagnosed
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14 posts in this topic

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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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.

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Thanks for the info. That helps a lot!

-Lexi

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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.

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

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

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Are you trying to say something celiac3270? :P

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

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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

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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?

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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

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Lexi-

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

Good Luck in school!

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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?

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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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    • Thanks everyone. I appreciate the answers. I'm waiting to hear back from her dr and then we will go from there. If the dr doesn't think the results show anything then I will get a second opinion thanks to everything that has been shared on here. I will make sure and not change her diet for now.  I am planning on getting tested myself, I have had suspicions since last summer that I could have it. I have a form of autoimmune arthritis, just unclear exactly what it is at this time. I  going to ask to be tested for celiac at my next appt though.
    • I was diagnosed in 2002 and I think I have had maybe 2 actual colds since then. I figured the same as you that with my immune system not having to try and 'save' me from gluten that it now is able to fight off the occasional virus.  The only thing it hasn't been able to fight off is shingles. Thankfully those are clearing and I blame myself for that with lack of sleep and a very poor diet for a bit. Lesson learned, one does not live off crackers and cheese alone.
    • Welcome to the board. I agree with the previous posters that you are very likely looking at celiac. Please do keep her on gluten until all celiac related testing is finsihed. After that do give the diet a good strict try even if the biopsies are negative. Also keep in mind that celiac is genetic so it would be a good idea to screen others in the family even if they don't seem to have symptoms.
    • @jddh So...did the restricted diet you were going to implement work (FODMAP or Whole Foods)?  I recall that you were mis-diagnosed at one point with refractory celiac disease, but it was later determined that you were getting trace amounts of gluten in your diet.  If you are not catching colds, I assume that you have healed from the damages of celiac disease?  I hope so!!! 😊
    • Peter is correct.  You do have a positive so that warrants further investigation.  Here is a link supporting our comments: http://www.cureceliacdisease.org/faq/are-raised-dgp-igg-levels-an-early-sign-of-celiac-disease/ http://www.mayomedicallaboratories.com/it-mmfiles/Celiac_Disease_Diagnostic_Testing_Algorithm.pdf Does she have celiac disease?  You will never know for sure without an endoscopy.  Even then, there is a chance the biopsies are negative, but keep in mind that she might just be starting to develop celiac disease or that the damage was not captured (the small intestine is the size of a tennis court if spread out).   Personally, I tested negative on all but the DGP IgA, yet I had moderate to severe intestinal damage.  The celiac blood tests are good, but they do not catch all celiacs,  some celiacs can even test negative to ALL the blood tests. Consider yourself fortunate that your doctor ordered several of the tests and not just the screening TTG IgA (very good, keeps cost down, but does not catch all).    The DGP is the preferred test in small children.  I do not know why it caught me because I am old,  but it did!   Confusing, isn't it?  I wish there was an easier way to diagnose, but  we have to work with what we have available to us.  
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