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Struggling with symptoms and need some advice


will4318

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Fenrir Community Regular

So they retested you and it came back positive?


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will4318 Apprentice
18 minutes ago, Fenrir said:

So they retested you and it came back positive?

Yes, I eventually had a pill cam test looking for crohn's disease, but instead they thought they saw some villous atrophy so I had another biopsy which was positive this time. 

Fenrir Community Regular

Nice! You're lucky. Many people's Dr. give up after the first one and refused to go any further. At least you have your answer. 

It takes time to heal. It took about a month for most of my symptoms to go down quite a bit and about 6 months for a full recovery.

cyclinglady Grand Master

Thank you for reporting back.  I am sorry that you had to wait two years before getting a correct diagnosed (missed small intestinal damage during the first endoscopy).  Glad the pill camera caught damage allowing for the second endoscopy.

I am going to bookmark your post to show persistence in obtaining a diagnosis and the supporting fact that small intestinal damage can be spotty.  

I hope you recover fast!  

will4318 Apprentice
2 hours ago, Fenrir said:

So they retested you and it came back positive?

Yes, I eventually had a pill cam test looking for crohn's disease, but instead they thought they saw some villous atrophy so I had another biopsy which was positive this time

 

41 minutes ago, cyclinglady said:

Thank you for reporting back.  I am sorry that you had to wait two years before getting a correct diagnosed (missed small intestinal damage during the first endoscopy).  Glad the pill camera caught damage allowing for the second endoscopy.

I am going to bookmark your post to show persistence in obtaining a diagnosis and the supporting fact that small intestinal damage can be spotty.  

I hope you recover fast!  

Thanks both, I was seeing a private consultant thanks to insurance and he was very persistent thankfully 

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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.
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      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. 
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