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Well after a follow up to see the gastro, got some interesting news, I have been gluten free now for over five months, my epigastric discomfort and back/rib pain continue, but after a EGD on tuesday my biopsy is now reported as normal and my labs are also normal. So I guess I am happy, just still trying to figure out why my symptoms seem the same. Curious to know if the musculoskeletal pain, ribs, back, and belly continue even after your intestine looks normal under a microscope?? Any thoughts????

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My biopsy came back pretty much "normal" also (yea!) - but like you, my upper left GI pain continued... turns out my stomach was full of H Pylori. I am thinking that was a primary cause for the pain because - happy fo report - that pain has pretty much subsided now that I am about 2 weeks post antibiotic treatment.

So, I don't know if that helps or anything... but also - sugar, soy and dairy can bring the pain right back in my case.

I hope that you discover & eliminate the source(s) of pain soon!! I can empathize with you. So very sorry that you've been suffering!

Hang in there!

Pondy

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I have found eating more home made cultured food (yogurt, sauerkraut) and gluten-free miso to repopulate the gut with good bacteria really helps. It also helps to eat things like adzuki beans and avoid heavy animal fats for a while to give the liver and gall bladder a break. Better to eat fish and shrimp etc., and maybe some skinless chicken, but no other meat--and eat lots of fresh greens and drink lots of water. No doubt right now the liver/gallbladder and kidneys are overworked due to likely leaky gut going on because of the damaged villi in the intestines. This distress then gives one intestinal, back, neck and shoulder pain as well as headaches.

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Maybe it isn't gluten-related? Those without celiac disease can also have such problems as well.

Has your doctor looked into any other non-celiac reasons?

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I have had so many tests it seems that it is making me confused at times. Most of them continue to come back negative, yet the nausea, back and rib cage pain, and dizziness in the morning continue. Starting to feel helpless with finding an answer as I just want to feel better. Prior to August 9th I felt great and then bam overnight all of m symptoms came on. Never any GI problems before, but now overnight I have celiac disease, also never have I had any dairy problems for 41 years and now bam all of the sudden I allergy test to have a casein allergy?? I do what I am told, and eliminate these things, and no improvement, even had my gallbladder taken out, still nothing. I am beginning to think this is something neurologic, although MRI of brain looks normal. Really at this point I just want my life back from this nonsense. I will keep looking for answers until I come up with one that makes me better. Who knows maybe this is what I am to expect with celiac disease. Maybe even after the villi heal and labs normalize you still have symptoms. People talk of being glutened. I never knew really what that meant, because since the start of this on August 9th, I have never had one day of feeling well to know what getting glutened is?? Who knows?

Thanks for your answers I hope to read others insight, and hope that someone else has felt the way I do that can guide me in the righ direction

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After I was dx'd with celiac disease and casein allergy I went gluten/casein free. Symptoms continued. I soon suspected and stool test later confirmed soy intolerance. 2 years later ELISA tests confirmed 4 more delayed reaction (IgG mediated) food allergies. During the 4 yr period after my celiac disease I was tested for, dx'd with and treated for 8 different gut bug infections (5 bacterial, 2 parasitic, one yeast). Symptoms continued. I found a new ND who looked for why I kept getting symptoms (and infections). Tests showed low stomach acid production, low vit D3, low thyroid (Hashimoto's actually) and low white blood cells. After resolving with supplements and/or treating all that I finally have normal digestion and no more 'gluten' symptoms, which were really caused by a myriad of other things. I still have sensitivity to sorbitol and other alcohol derived sugars, because of leaky gut. The longer you had undiagnosed (or misdiagnosed celiac disease), the more likely you have leaky gut and/or other food alleries and/or autoimmune diseases and/or other complications.

After you eliminate gluten and all sources of cross-contamination, don't just assume your ongoing symptoms are gluten related. Get tested for other things from a holistic doctor who considers other delayed reaction food allergies, gastrointestinal infections, other digestive problems (like low stomach acid production) and other autoimmune disesases. (Hashimoto's causes constipation, which I thought was my celiac/food allergy reaction. Interestingly after I normalized my thyroid function with supplementa, I got diarrhea (instead of constipation) the next time I accidentally ingested one of my allergens. Depending on how long you had undx'd celiac disease, you may need to resolve many issues before you are symptom free. Nevertheless, the journey is well worth feeling healthy finally.

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Just another thought..I had been on PPI medication for relux for years. After going gluten-free and soy free, I was still having a burning pain, much like you described. I also have a low functioning gallbladder, and it was recommended I have it taken out.

In my search to find info about biliary dyskenesia, and what *might* help bring my function back to normal, I found a link between PPIs and dysfunction. I asked my new Dr. if he thought my GB function might improve off gluten and maybe off the PPI? He told me to try it and see if it helps.

Since stopping the PPI, my pain is much less. I also don't have the terrible GERD I had before my DX and going gluten-free. Now I'm assuming gluten was causing my reflux, not excess acid?

If you are on a PPI, ask your Dr. if it's safe to try going off it for a bit to see if it helps your pain?

You may also have areas that aren't healed 100%? The endoscope isn't long enough to check your entire small intestine, and if samples were taken from the part it could reach, it's possible there's patchy areas that are still healing? It would be hard for the Dr. to know to grab a sample in one of those areas if the damage isn't obvious to the naked eye? It sounds like you are on the right path to healing though!

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