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Cd Doc In Kc, Mo


clanning

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clanning Rookie

I'm new to this forum. I have a GI doctor that I've fired several times. MY celiac disease is so out of control. My biopsy's were terrible (complete/total Villa atrophy), my lab's were all critical IGG (?#) IGA >150, Iron levels, sever anemia, WBC 3, low every thing.

I 2 wks ago I had to have my gallbladder remove due to severe chronic cholycystitis. Not helling well from it. Can not absorb the CO2 from the surgery. Dr's all say it's from my celiac disease being out of control.

I've since tried staying gluten-free but it's very hard. Getting recipe's now etc..

My GI doc tells me that I'm not going to be around in 3 yrs. if I do not straighten up. Does anyone know if that is true?

It has taken over my intestines. I'm ALWAYS constipated taking laxitives like candy (prescripted & OTC). I take several meds Nexium, Zelnorm, Lactulose, Mirlax and I'm still severly constipated.

I have weak spells & have recently passed out at work. (Thank God I work at a hospital) Migrains and a lot of the time the crabbiest person on earth.

I would like to find a DR. would listens to me!! Yes, I know I have to stay on the diet first.

I've read that a lot of people on this take other things, why is that and how does it help?

Charlotte


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    1. - Rogol72 replied to Butch68's topic in Gluten-Free Foods, Products, Shopping & Medications
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      Guinness, can you drink it?


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    • Celiac and Salty
      I have dealt with proctalgia fugax on and off for a year now. It feels almost paralyzing during an episode and they have started lasting longer and longer, sometimes 20+ minutes. I was recently diagnosed with celiac disease and wonder if the 2 are related. I did request a prescription for topical nitroglycerin for my PF episodes and that has helped tremendously!
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      Hey @Butch68, I also have dermatitis herpetiformis but don't suffer from it anymore. I used to drink Guinness too but I drink Cider now when out on social occasions. I assume you are in Ireland or the UK. If it's any good to you ... 9 White Deer based in Cork brew a range of gluten-free products including a gluten-free Stout. I'm not sure if they are certified though. https://www.9whitedeer.ie/ I haven't come across any certified gluten-free stouts this side of the pond.
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      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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      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. 
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