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Please Please Help Me


elaine1956

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elaine1956 Newbie

It's been 7 months of deathly nausea, gas, pain, tests and frustration. I am good mentally but do not know where to turn. Other than thyroid disease, hysterectomy, and now a year of watery diarrhea and severe nausea and gas, I have been healthy. I am so sick. gall bladder surgeon thinks I'm nuts and gp has given up on me. thank you, elaine


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HawkFire Explorer

Perhaps fibromyalgia?

forget that adcice above... you need to go gluten free now. Stop waiting. Do it now.

Lisa Mentor

Elaine:

Join the club. :) So many of us have had doctors that haven't had a clue what was wrong with us. Your symptoms may indicate Celiac Disease. But I would also advise not to put all your apples in one basket.

Have you done a search for Celiac Disease as there is good information on the Internet. The site here can be worth it's gold in information for those that are suffering. Read as much as you can on the posts here. It will be incredibly information.

To help us help you, please give us a little more background regarding your symptoms and a time frame. Celiac often need as trigger to kick in full blown symptoms as, stress, birth, mono, illness.

There is a reason for your discomfort and it may be Celiac.

Lisa

CarlaB Enthusiast

Have you been tested for celiac disease? The blood test is easy, but you need to be gluten-free.

Have you tried the diet? If you respond well to being gluten-free, you can do the diet without anyone's permission or support ... and I'm talking specifically about doctors.

Daxin Explorer

No one has ever suffered from going lguten free. I agree. You could get the blood test done, and see where that gets you, but in the mean time, you could trial the gluten free diet and see what happens.

All the other memebrs of my household (those old enough to speak) tell me that they notice less gassy and bloated when they follow my diet with me for a few days. There may be something there. It can't hurt.

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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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      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/ 
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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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      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.
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      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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