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    Do you have questions about celiac disease or the gluten-free diet?

kami42

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Hi Everyone! Just wanted to say hi and introduce myself. My name is Kelly, I am a 24 year old female. After years of multiple health issues and no diagnosis, I was compelled to research my every last symptom to see what was making me feel as if I was literally falling apart. My doctor kept telling me that all of my tests were normal and that she didn't understand why I had so many health problems for being a fit 24 year old female. I felt like a hypochondriac! I still had so many symptoms that I knew to go with my gut- I couldn't focus, headaches, no memory or mental focus "brain fog", anxiety, depression, bloating, always dizzy, fatigues as well as extreme eczema, a swollen inguinal lymph node (for years), irregular periods, constipation and hypertension to name a few. I have been on a gluten-free diet for a week now and already feel so much better. My skin looks brighter, my dark circles under my eyes have gone away, my eyes aren't red anymore, no more aching neck muscles, no more bloating, my lymph node is completely GONE. The one thing that helped me link the possibility of being gluten sensitive is my hidradenitis suppurativa. There's a link between the HS and gluten intolerance however after this week of going gluten-free the HS is almost GONE. I have not been diagnosed yet (my doctor retired) so I am going to look for a new doctor to help me determine if any damage was done during that time and to get an official diagnosis. As I read other's stories...I can relate so much...we are all in this together. It's true that I never realized how bloated and uncomfortable I was until I tried the gluten-free pizza at my favorite local pizza place. I was actually full without being swollen and so tired that I could pass out/throw up! I tried a piece of bread last night to test my theory and I feel miserable today- headache, red eyes, achey....etc :( I do know one thing- I will never eat gluten again! This is such a wonderful community from what I have read and experienced so far and I am so happy to not be in this alone. I am just looking for people to talk to and to help make my day to day life a little easier. I am always here to talk to if I can show any kind of support. I just want to talk to someone who understands!! Thanks for listening :)

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Wow! Welcome and I want to tell you your perseverance paid off. You are not a hypochondriac. I was in the same medical boat and it sunk. I was stuck in this limbo of Fobromyalgia, depression and weakness for years until I refused to leave the computer until I figured it out. It took a long time...due to brain fog. But I found this place and I am now one year gluten free and feeling great. Unless of course I get any traces of gluten. I've learned to be very careful. I am so happy for you that you are going to get to feel better now! And you are right this is an amazing informative site and no, you are not alone. Welcome to the rest of your life! I'm much older than you are and I get really happy when someone your age figures this out and saves themseves from a long debilitating journey. I know you have already been through a lot...but you have a lot of life to live and it is going to be so wonderful to feel healthy and well for it too! Happy for you!

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Thank you so much for your support. My dad and Aunt have alot of symptoms: anemia, graves disease, IBS, low calcium, arthritis, fybromyalgia, diabetes, pancreatic cancer. (to name a few). I know it is hereditary so I am suggesting that they go gluten-free or even get tested to see if that might be the case. I have also noticed my eyes get red when I first get glutened and then a headache/muscle soreness the next day and horrible bloating on day 2 (today). Do you ever experience anything like that? Is there anything known to help reduce the effects of being glutened? Probiotics maybe? I am so happy that I am not the only one who experienced the brain fog although I am sorry you had to go through that! It was the most horrible feeling ever along with the depression as you expreienced as well! I already feel so much better mentally despite eating that bread to test my theory but I do feel it physically as I said. That is amazing that you sat down on the computer and researched and researched...we have to be our own advocates. It seems we are alot alike :) I am so looking forward to this new journey and getting to know all the others that are fighting this battle!

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Thank you so much for your support. My dad and Aunt have alot of symptoms: anemia, graves disease, IBS, low calcium, arthritis, fybromyalgia, diabetes, pancreatic cancer. (to name a few). I know it is hereditary so I am suggesting that they go gluten-free or even get tested to see if that might be the case. I have also noticed my eyes get red when I first get glutened and then a headache/muscle soreness the next day and horrible bloating on day 2 (today). Do you ever experience anything like that? Is there anything known to help reduce the effects of being glutened? Probiotics maybe? I am so happy that I am not the only one who experienced the brain fog although I am sorry you had to go through that! It was the most horrible feeling ever along with the depression as you expreienced as well! I already feel so much better mentally despite eating that bread to test my theory but I do feel it physically as I said. That is amazing that you sat down on the computer and researched and researched...we have to be our own advocates. It seems we are alot alike :) I am so looking forward to this new journey and getting to know all the others that are fighting this battle!

Unfortunately, if you want traditional testing, you need to be eating gluten to get it done.

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Hi! Thanks so much for your reply, Frieze! I agree. My dad and aunt are eating gluten but I am not. I had such a horrible reaction this last week that I do not ever want to eat it again..I should post a pic I looked pregnant because I was so swollen in my lower abdomen and it hurt. I don't mind not getting tested per se but it would be nice to have a diagnosis so people do not think I am being a drama queen. However, if I am going to have to go through that much pain again then forget it. I am still suffering from the last exposure. Is there anything you can take to lessen the severity of getting glutened?

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    So, she had small intestinal damage?  Well, the elevated TTG IgA confirms the celiac disease diagnosis, in my non-medical opinion.   Going gluten free can be tough on a teen.  We are waiting for results of my kid’s celiac panel.  She has to be tested every few years since I have celiac disease (she just completed a three month gluten challenge as she had been gluten light).  Her first test was negative.  But since her Dad and I are gluten free, my daughter has learned to adapt to our gluten
    He ran the entire panel, but I had a GI consult for a colonoscopy because I had hit 50.  He read my chart and decided to test for celiac disease.  I do not know why I test positive only to the DGP IgA even in follow-up tests.  May it is the Hashimoto’s, who knows?  But most primary care physicians order just the TTG tests which catches most but not all celiacs.   With your sister having celiac disease, you should ask for the entire panel.  Even if negative on the entire panel, consider push
I guess I should have added that she already had an endoscopy and biopsy as follow up to an eosinophilic esophagitis diagnosis. The doctor ordered the bloodwork after getting the results back. She is a picky eater and I swear only eats gluten lol It is going to be a struggle if we have to go gluten free.
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