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yellowlilax

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yellowlilax Rookie

For years now, I have had random pains right below my ribcage on my left side (back). Nothing serious at all, just slight pain and probably happened once a year and sometimes not even that. Fast forward to now, I am 27 years old and had this stabbing/twisting pain in my lower left side and was having spotting or a light period that was entirely too early (2 weeks) The pain was just to the left of my pubic bone. From there, I had a gyno appt with an ultrasound for an eptopic pregnancy (negative), bloodwork for pregnancy (negative), saw no cysts, fluid, or abnormalties. I've been to several doctors and had stool samples, hormone levels checked, more pelvic exams, a CT scan and an MRI. Everything is negative and normal.

My period is messed up still, but I could very well chock that up to stress over this whole ordeal. I will say it's been VERY light and I havent had a "normal" period since December. My body is going through the motions like it always has with my cycle though - diarrhea, cramps, broke out face, mood swings. Right now, I am taking a probiotic because I've had loose stools, not necessarily diarrhea every morning lately. At first, I thought it was just because I was having my period so often (and i've always had diarrhea with that), that it was that. So I got on a very good probiotic and have been taking peppermint oil capsules as well. My stools are very soft and I guess I'd say loose, but not watery diarrhea or anything. I also go every day now and never did before (which is from the probiotic I'm sure).

My iron levels were fine and always have been, I do not have mucus or blood in my stools. No skin problems, weakness, tiredness, malnutrition or weight loss. As of the last few weeks, the sharp pain in my lower left side has subsided, but its now 3 months later and I still have days that the left side of my pubic bone is burning. I also have been to a massage therapist, who said that the muscle that runs across there is not abnormally tight or strained. I've also had a gyno check for a hernia as well. I have myself worked up (and have googled too much) that it could be celiac. The GI dr I've gone to says its nothing to worry about and since the pain hasnt bothered me lately, I really dont know where to go next. I've racked up 12,000 in medical bills over this. I really cant afford, nor do I know what to do next.

Sorry for going on and on, but does this sound like celiac to you? I eat organically for the most part, no processed foods, a good amount of fruits and veggies, whole grains and no red meat. I have no history that I know of celiac in my family, but from being on here I see that it goes undiagnosed a lot. I'm terrified I might have celiac, but the only symptom I would have I guess is loose stools in the morning and whatever that pain was I had for a couple of months (and the burning pain on my pubic bone that hasnt seemed to go away). I have a food journal, but can't see to make sense of any one thing that makes that pain flair up. I'll stop rambling. Thank you if you even made it this far!


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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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