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kami42

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kami42 Newbie

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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eatmeat4good Enthusiast

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!

kami42 Newbie

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!

frieze Community Regular

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.

kami42 Newbie

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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    • Scott Adams
      This is a very common question, and the most important thing to know is that no, Guinness is not considered safe for individuals with coeliac disease. While it's fascinating to hear anecdotes from other coeliacs who can drink it without immediate issues, this is a risky exception rather than the rule. The core issue is that Guinness is brewed from barley, which contains gluten, and the standard brewing process does not remove the gluten protein to a level safe for coeliacs (below 20ppm). For someone like you who experiences dermatitis herpetiformis, the reaction is particularly significant. DH is triggered by gluten ingestion, even without immediate gastrointestinal symptoms. So, while you may not feel an instant stomach upset, drinking a gluten-containing beer like Guinness could very well provoke a flare-up of your skin condition days later. It would be a gamble with a potentially uncomfortable and long-lasting consequence. Fortunately, there are excellent, certified gluten-free stouts available now that can provide a safe and satisfying alternative without the risk.
    • MogwaiStripe
      Interestingly, this thought occurred to me last night. I did find that there are studies investigating whether vitamin D deficiency can actually trigger celiac disease.  Source: National Institutes of Health https://pmc.ncbi.nlm.nih.gov/articles/PMC7231074/ 
    • Butch68
      Before being diagnosed coeliac I used to love Guinness. Being made from barley it should be something a coeliac shouldn’t drink. But taking to another coeliac and they can drink it with no ill effects and have heard of others who can drink it too.  is this everyone’s experience?  Can I drink it?  I get dermatitis herpetiformis and don’t get instant reactions to gluten so can’t try it to see for myself. 
    • trents
      NCGS does not cause damage to the small bowel villi so, if indeed you were not skimping on gluten when you had the antibody blood testing done, it is likely you have celiac disease.
    • Scott Adams
      I will assume you did the gluten challenge properly and were eating a lot of gluten daily for 6-8 weeks before your test, but if not, that could be the issue. You can still have celiac disease with negative blood test results, although it's not as common:  Clinical and genetic profile of patients with seronegative coeliac disease: the natural history and response to gluten-free diet: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5606118/  Seronegative Celiac Disease - A Challenging Case: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9441776/  Enteropathies with villous atrophy but negative coeliac serology in adults: current issues: https://pubmed.ncbi.nlm.nih.gov/34764141/  Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS.
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