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Getting Diagnosed
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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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    • I'm actually scared to go to the doctor and could use some advice
      Hi Elle......do you think you would have better luck obtaining a full Celiac panel from your GP or a gastro doc?  You really need to be tested for Celiac because of all your symptoms.  Many other people probably thought they were dying of some horrible disease because they had so many symptoms that docs ignored.  Very common problem for us.  Plus, your Mom has had "IBS" all her life.  I should add that IBS is not a diagnosis.  No one needs to be told their bowel is irritated......they already know that.  This is where the medical establishment, no matter where you live in this world, fail us.  They need to find the root cause and there always is one.  You also do not need to have any gastro issues to be a Celiac but you do have some, along with all your symptoms mentioned.  Anxiety is a huge problem with Celiac Disease and for many, it goes away just fine on the gluten-free diet, without need of meds...which should always be a last resort measure.  I have never had an anxiety problem in my entire life until after I was diagnosed with Celiac.  I may have had it but with all the other numerous symptoms I had, the anxiety may have gotten buried somewhere.  But guess what? On the extremely rare occasion when I am glutened or cc'd, I get major anxiety for about 4 days and then its gone. B12 is a water soluble vitamin so whatever you don't use, it exits the body in your urine.  It is pretty damn hard to overdose on the stuff.  I take a B vitamin everyday, very high quality ones and my B12 is usually in the high 600 range.  Optimally, it should be between 650-800 so yours was abysmal pre-supplementation.  Absorption can also be affected by PPI's.  You did notice improvement with the tingling sensation and fatigue once your levels were way up so take notice of that. My biggest advice is to get your mother and you tested for celiac, with a FULL PANEL. Then you'll have to wait and see what that shows. You could always trial a gluten-free diet if all testing is complete and the results were either negative or inconclusive. That sometimes happens with people, especially if they have Celiac's other cousin......non-celiac gluten intolerance.  This would be the best route to go with regards to your anxiety, unless it becomes disabling and you need meds, short term. Make sure you tell them that anxiety is a HUGE symptom of Celiac and it is not normal for younger people to have extreme anxiety like that, for no reason. Good luck to you and please call and make the appointment. I understand your fear....I hate doctors and it's pure mistrust. But sometimes you have to address a problem head on.    
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      good to know. I am not going for a biopsy. I do not have health insurance, i know i know please no political comments. My children do. My husband and I don't right now. If we lived in another state, we would have coverage. I just made an appt to do a full blood panel for my daughter this week. I would rather find some confirmation for her through a blood test, i feel a scope is too invasive for a child. 
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    • I'm actually scared to go to the doctor and could use some advice
      Well, if I were you, I would go see your doctor and talk to him/her about all this.  Tell your doctor about your anxiety. When I finally did, my doctor prescribed a low dose of an anti-anxiety med and it has made a world of difference in my life.   About the whole thing with the B12 and the weird symptoms . Keep taking the B12 in the meantime to see if that helps again. But talk about it anyway.  If you want a celiac test, ask for the panel to be done. Your doctor may or may not want to send you to a GI for that. Remind him your mom is being tested. You do not have to wait for her results.  Work with your doctor if possible and if not, maybe find a doctor you can work with. If all you end up needing is b12, that's a good thing. If you end up needing more help, starting with your doctor and a heart to heart Talk will have you going in the right direction.
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