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I'm Back, And I Have Celiac Disease!


Frances03

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Frances03 Enthusiast

so am I a Gold Star Celiac now?? LOL

I had my colonoscopy and it was FINE FINE FINE

I had my endoscopy and he said he could "see damage consistent with Celiac Disease" just from looking, of course he is sending all my stuff to be biopsied. But, I got so lucky, because he actually KNEW something about Celiac and said his former wife had written a book on the diet! I also have a hiatal hernia, and a lot of damage from heartburn type stuff, acid backing up my esophagus etc. So, I am to go gluten free right away, and get an appt with a dietician, and also he wants to recheck my anitbody levels to make sure I'm doing well on the diet!! I feel FANTASTIC!!! All these years of garbage and I finally have something I can TREAT! I will be HAPPY to eat gluten free the rest of my life!!! Thank you so much for your prayers and kind thoughts today also. I appreciate them all. And thank you for the support on this board. I will be sticking around and trying to educate everyone I know about Celiac Disease. Next, I will be getting my 3 children tested.


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sussarliv Newbie
so am I a Gold Star Celiac now?? LOL

I had my colonoscopy and it was FINE FINE FINE

I had my endoscopy and he said he could "see damage consistent with Celiac Disease" just from looking, of course he is sending all my stuff to be biopsied. But, I got so lucky, because he actually KNEW something about Celiac and said his former wife had written a book on the diet! I also have a hiatal hernia, and a lot of damage from heartburn type stuff, acid backing up my esophagus etc. So, I am to go gluten free right away, and get an appt with a dietician, and also he wants to recheck my anitbody levels to make sure I'm doing well on the diet!! I feel FANTASTIC!!! All these years of garbage and I finally have something I can TREAT! I will be HAPPY to eat gluten free the rest of my life!!! Thank you so much for your prayers and kind thoughts today also. I appreciate them all. And thank you for the support on this board. I will be sticking around and trying to educate everyone I know about Celiac Disease. Next, I will be getting my 3 children tested.

Glad to hear that you finally have answers!

Susan

happygirl Collaborator

Wonderful that you know now. I hope you stick around...this is a great resource!

Ahorsesoul Enthusiast

"I feel FANTASTIC!!!"

That sure does say it all! You are now an official member of the gluten free club! It's so nice to finally figure out what's wrong that we do cartwheels to find out we are celiacs. lol

Roda Rising Star

Sounds like he turned out to be alright. Now he needs to educate his nurse practitioner. Hope you feel better soon. Also after my confirmed diagnosis I asked my kids ped to screen and explained that I just had gotten a diagnosis. He refused to order the blood tests, saying they were fine. I was so mad! :angry: I had to call their allergist/immunologist in a town 70 miles away to get it orderd and they had no problem doing it. My oldest has been screened twice since all of the tests were not done the first time(lab problem). Good luck and be persistant.

Brooklyn528 Apprentice
so am I a Gold Star Celiac now?? LOL

I had my colonoscopy and it was FINE FINE FINE

I had my endoscopy and he said he could "see damage consistent with Celiac Disease" just from looking, of course he is sending all my stuff to be biopsied. But, I got so lucky, because he actually KNEW something about Celiac and said his former wife had written a book on the diet! I also have a hiatal hernia, and a lot of damage from heartburn type stuff, acid backing up my esophagus etc. So, I am to go gluten free right away, and get an appt with a dietician, and also he wants to recheck my anitbody levels to make sure I'm doing well on the diet!! I feel FANTASTIC!!! All these years of garbage and I finally have something I can TREAT! I will be HAPPY to eat gluten free the rest of my life!!! Thank you so much for your prayers and kind thoughts today also. I appreciate them all. And thank you for the support on this board. I will be sticking around and trying to educate everyone I know about Celiac Disease. Next, I will be getting my 3 children tested.

Just wanted to say that I am very happy to hear of your great doctors. Finding a good one is always a positive. I hope things start going your way. Also, good luck with your children. I just started working on getting things taken care of concerning my children. I can't bear the thought of them having to deal with the things I have had to already. Good luck in all you do! :P

ravenwoodglass Mentor

I am glad you were able to get a definate answer. Welcome to the family. I hope you are feeling great soon. Make sure you let all your first degree relatives know, brothers, sisters etc as well as doing the testing on your children.


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ang1e0251 Contributor

I'm so glad you have the answers! Now for a new life of great health for you and your family. Welcome into the group, hope you get the results for your children that they need.

Nadia2009 Enthusiast

I am so happy for you not happy you have celiac but it feels good to have answers. I am just expecting the same diagnostic. I did the celiac blood test for the second time this year and this time, I made sure it is the whole panel. My blood test was done in late September and it seems like I can't have results until late October and I am wondering if that means something.

Nadia

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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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