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I Can't Drink This Stuff!


Chelle15

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flagbabyds Collaborator

you would NOT like to be me then!

I have blood tests to monitor my thyroid every week at least cause my thyroid gets thrown off by such a little thing and makes me horibbly sick. So i am used to blood tests esp. cause it usually takes them about 5 pokes before they get my vein.


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wonkabar Contributor
Who thinks the IV is hard? I didn't feel anything more than when they take blood....just a little pinch and that was it!

I was more afraid of having an IV than being in labor...honest to God! No one can ever find my veins and my hand or arm is always swollen and killing me before, during and after. It usually takes a few sticks and different nurses b/f they can run the IV...yuck! I'm making a face just thingking about it! :o

CarlaB Enthusiast

They never have trouble finding my vein, it's very obvious. They don't have trouble getting it either, but for some reason, I still get huge bruises.

Nancym Enthusiast

Oh dear, the worst part for me wasn't the taste, it was the endless drinking and feeling like if I took another sip I'd throw it all up. No wait, the worst part was being up all night pooping. No wait.... the worst part was the time I didn't wake up in time.

Chelle15 Apprentice

I had mine done today. Thank god it is over. I was so worried about gagging. They sprayed the stuff in my throat, and I was pretty much out of it for that. The colonoscopy, though, I was awake for most of it. I watched it on the screen. It was a tad uncomfortable, but I was relieved at how smoothly it went. I did not want to be awake at all, but I was. However, I still go to the bathroom alot...

The doctor didn't talk to me cuz she another procedure she was in went over. I was told everything looked normal but I will get the biopsies back in 10 to 14 days. Any chance if everything looks normal that the biopsies could still show damage?

CarlaB Enthusiast

The damage can be microscopic.

Both my biosies and my blood tests were negative, but I went to Enterolab, whose testing is more sensitive, and got positive results.

Glad you got it over with!

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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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