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Another Rib Cage Pain Question...


SaraKat

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SaraKat Contributor

Mine is 95% of the time on the left side. In the last 12 months I have had a CT scan, chest XRAY, AB ultrasound, and an endoscopy. All they found was celiac, so I am guessing it is the celiac, but it is scary how bad the pain is.

I was beginning to think something with my pancreas, but all other tests were normal, so I am led to think it is a celiac thing.

Thanks!


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cyberprof Enthusiast

Mine is 95% of the time on the left side. In the last 12 months I have had a CT scan, chest XRAY, AB ultrasound, and an endoscopy. All they found was celiac, so I am guessing it is the celiac, but it is scary how bad the pain is.

I was beginning to think something with my pancreas, but all other tests were normal, so I am led to think it is a celiac thing.

Thanks!

I had the same pain and had all the same tests. Negative on anything that could cause pain. Pain went away after I was reliably gluten-free - maybe 2-3 months. Hope your pain goes away soon.

julandjo Explorer

Always on the left side. I've had so many tests and procedures done, thinking it was my heart, and then maybe esophageal spasming, etc... nobody has ever found anything except the celiac and a vit. D deficiency. It's reassuring that it's probably not my heart, but boy does it feel like it is!

HardcoreDior Newbie

Hey,

You're not alone, I have that pain too. I have had similar tests done, all negative, and I am also assuming it is celiac.

I have been gluten free for about 2 months now, and it hasn't gone away yet. However, I did also figure out that I am tapioca intolerant a few weeks ago, so it may be a while longer for me. . .

I hope your pain, and mine, goes away soon! But you're definitely not alone.

HardcoreDior Newbie

Oh, and mine is always on the left side too.

julandjo Explorer

You guys, I can't tell you how reassuring this is to read! Not that I wish these sensations on anyone, but for years now I've been fairly convinced that something is so wrong with me that maybe I'd die suddenly (no joke) and doctors wouldn't figure it out until my autopsy. Thank you so much for sharing what you've shared here!

SaraKat Contributor

Dior- how did you find out about the tapioca thing? I am wondering if I should get additional food testing done.

JulandJo- This is definitely reassuring, I have seriously had the same thoughts!! I said to my husband- how can I be in this much pain and not be dead yet. That is how bad it is!! I even went to an oncologist before the celiac diagnosis, I thought it was cancer.


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WheatChef Apprentice

Almost every other person I talk to with a gluten intolerance gets that pain on the left side in the region of the spleen. Pain on the right side would be possibly related to the gallbladder and possibly a different condition.

julandjo Explorer

JulandJo- This is definitely reassuring, I have seriously had the same thoughts!! I said to my husband- how can I be in this much pain and not be dead yet. That is how bad it is!! I even went to an oncologist before the celiac diagnosis, I thought it was cancer.

Hugs to you! I know, I've vacillated between thinking it's my heart, to maybe lung cancer, to "well, even though it feels like it's inside my chest, maybe it's really breast cancer". After reading these chest pain threads today I called my husband and my mom and told them all about it. This has seriously made my whole month!

kayo Explorer

I had that same pain for years and had so many tests, all negative. Turns out it was SIBO (small intestine bacterial overgrowth). I've since been treated (round of antibiotics) and I'm doing well. I have not had that pain since treatment. I can even tolerate cassein now. I'm able to have lactose free yogurt and lactose free yogurt cheese. I also follow the FODMAP diet to keep the SIBO at bay. Knock on wood!

GlutenFreeManna Rising Star

You guys, I can't tell you how reassuring this is to read! Not that I wish these sensations on anyone, but for years now I've been fairly convinced that something is so wrong with me that maybe I'd die suddenly (no joke) and doctors wouldn't figure it out until my autopsy. Thank you so much for sharing what you've shared here!

OMG I have had these thoughts as well! I went to see a pulmonologist today sure I had lung disease or cancer or something. He spent a long time basically telling me I have GERD and I need to lose weight. I already know I need to lose weight (and I have been working on it) but this doctor had no idea about gluten. I don't think I have GERD either after looking it up. I told him I don't eat gluten, dairy or soy and then when he was giving me advice about what to eat he said I should not eat things like pizza and fried chicken! I said I already CAN'T eat those things (Unless I make them gluten free and thats a special treat). I eat grilled or baked chicken and steamed veggies mostly. Then he said I could have a sandwhich every once in a while if I ate it on whole wheat or multigrain bread instead of white. :o At least I wasn't talking to a GI doctor, but still annoyed me.

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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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