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Looking for answers :(


Kimberlee170

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Kimberlee170 Newbie

Hello everyone,

First time posting on the forum as I'm now desperately seeking answers to my ill health over the last few months.

Around about November 2018, I started to lose all energy and have severe fatigue. My life had been busy and I had just opened my own business so I put it down to that. I'm a vegan as well, but have never had problems with energy before. I took myself to the docs in early january, where she said she would 'bet her house' that I was anemic before sending me for blood tests. 

The tests came back fine, I was a tiny little bit low on iron and my white blood cells were slightly off but she said nothing to be concerned about. She fobbed me off with iron tablets and told me I might be depressed.

A week later, I went back (I changed docs) and she said I looked unwell, did another blood test and my white blood cells were even more off. Apart from fatigue, i've missed a period, had a massive change in my bowels, mainly diarrhea or soft stools. Most noticeably I feel like I need to go straight after food. Not to be too graphic here, but my stools are really stinky the last few months (I mean, seriously WTF and to the point my partner has commented on it when using the bathroom afterwards) and they are ALWAYS floating and different colours (a light, pale brown mixed with darker brown) and they look like my body isn't absorbing my food properly. I've lost my appetite and I'm only eating when I feel I need to I guess. I keep waking up in the middle of the night, and the last week I've had tingling and numbness all over my body.

My sister is in the healthcare industry and she is pushing me to ask the docs about if it's celiac disease. I'm going back to my GP in two days for more tests.

Does anyone have any information or ideas?

Thank you so much for your time :) 


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cyclinglady Grand Master

Welcome, the only way to know for sure is to get tested:

http://www.cureceliacdisease.org/screening/

Keep eating  gluten until all testing is complete!  

Scott Adams Grand Master

Your symptoms do seem consistent:

So the hard part, at least with some doctors, is getting them to order the blood tests. If you have trouble with this imaware (a sponsor of this site) and other companies do offer inexpensive home test options.

Kimberlee170 Newbie

Guys, thanks so much for taking time out of your day to reply to me. I'm going to ask my doc for the test, she's super and I'm sure she will go for it. This whole thing has sure taken it's toll on me both mentally and physically the last couple of months... to be honest, I don't care if I have it or not, I just want to know what's going on :(

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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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