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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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    • Advil (ibuprofen) is gluten-free, but can be a stomach irritant, especially if taken on an empty stomach. That said, I will also place my bet on the garlic and onions. As Raven said, eating more than once a day may also help. An empty stomach is likely to be an irritable stomach.
    • Another link: http://naldc.nal.usda.gov/download/7351/PDF
    • Thanks for posting.  I know it is difficult to talk about these sorts of things even on a webforum.  It is good thing for people to be aware though about celiac disease and that it can cause mental problems.  Gluten can cause brain damage and it can cause anxiety. If the brain does heal it may take a long time. I know that gluten can cause anxiety and obsessive thoughts.  My experience has been similar to your experience. When I first quit eating gluten I had a similar constant loop and strong negative feelings. There are lots of people on this forum who get anxiety when they eat gluten. Some people also experience gluten withdrawl where they experience anxiety after giving up gluten. It can take a long time for the body to heal and for obsessive thoughts to go away.
       It is normal for people to socialize with each other and to be comfortable about it. You said you have problems still socializing and being around people. It might be a depressing thought but it sounds to me like you still have problems with anxiety.  I would recommend considering what options you have available to treat the anxiety. When I quit eating Gluten I still had some symptoms, even though I felt much better. I have been slowly recovering over a period of about three years. I had obsessive thoughts even after I quit eating gluten.  Now I very rarely if at all think about those things. My experience is that my mind would latch on to certain things that caused me anxiety and focus on those things. Sometimes my focus would shift and I would latch onto other things. My ability to socialize has also improved greatly with time. I have made some dietary changes which I believe have helped greatly. It sounds to me like you have obsessive thoughts about things and maybe some brain damage. My experience has been that my obsessive thoughts about different things went away with time. I feel my obsessive thoughts were caused by gluten and not by what people did around me or any events. As my brain healed I became more self aware and things became less stressful.  I can't give medical advice on this forum but I can talk about my current diet and my experience with celiac disease. My experience with gluten is different from a lot of other people so it is a good idea to ask other people and to talk to a doctor.  I avoid oats and avoid almost all processed foods. I buy certified gluten free food. I eat healthy and I exercise every day. I take st John's Wort as I have read studies that say it may be as effective as some other anti-depressants for treating certain types of anxiety. It is available over the counter. I started with a small dosage and then stepped it up over time. I think it helps a lot.  This is also something that you should talk to a doctor about first. https://www.researchgate.net/profile/Martin_Mahoney2/publication/7426926_St._John's_wort/links/540d8acc0cf2f2b29a386673.pdf A lot of people with celiac disease have vitamin deficiencies.  Vitamin b deficiency can cause anxiety. Some people do not process the synthetic form of vitamin b (from normal pills)  very well, and do better on an activated form of vitamin b. I take:
      1 activated vitamin b12 daily
      1 activated vitamin b6 every once in a while. 1 regular vitamin b multivitamin
      1 magnesium pill every day.
      St Johns Wort daily.
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      I drink lots of Chamomile tea and decaf coffee. I avoid most caffeine. 
      I think each of these helps lower my anxiety level.  I eat fruit with every meal. Canned fruit from walmart is cheap and good for you. I eat salad and and vegetables and avoid dairy.  I eat frozen fish often as it has healthy proteins. Eating healthy is very important. I eat potatoes and rice. http://www.livestrong.com/article/454179-what-is-methyl-b12/ I avoid eating soy sauce, soy, cheese, aged meats and fermented foods (I do drink certain types of alcohol in moderate amounts.) These foods contain lots of Tyramine. I might (or might not) have "monoaine oxidase deficiency" and if so high Tyramine foods should be avoided.  I thought I might have problems with elevated ammonia in my blood, but I am not convinced of that anymore. I limited my consumption of meat for a while as well as dairy but I am not sure if i helped.  I have heard that Celiac disease can effect other organs besides the brain and those organs can have an effect on the brain.  My current diet is working so I am going to stick with it for now. I try not to worry about things that are outside of my control. Be patient as it took me a long time to recover.  Let me know if you have any questions. There is a lot of information on this site and people who are willing to help.
       
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