← Return to 18 year old battling stomach issues - what should I do?

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@shelleyw

Hi there, I'm beginning to think that the DRS are less than useless. What genetic condition do you have? Any autoimmune diseases? You said food tests and celiac look normal. Have either of you had an endoscopy with biopsies tested at a pathology lab?
I have plenty of severe GI issues that no dr. and no meds help. I have Celiac with severe villi destruction, yet I am asymptomatic on/off gluten; pSS, primary Sjögren's syndrome, this affects SO MANY OTHER BODILY ISSUES, not just dryness. My pSS is increasing lymphocytic infiltration in lungs and pancreas (due to pSS), CIC -completely Treatment resistant for 17 yrs. I have to keep my poop very thin with miralax. I am 65, fighting everything for 15+- yrs.
If you want to, what are yours and your daughters symptoms? I am just another sufferer like you guys... but maybe we have ideas, from trial and error, that we could share. Take care, Shelley

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Replies to "Hi there, I'm beginning to think that the DRS are less than useless. What genetic condition..."

Oh wow I never heard of this and I am sorry you have suffered so long. Ours is called Alpha-1 Antitrypsin Deficiency and it affects mostly lung and liver but also many other organs in the body. Not technically autoimmune but there are similarities. All of the women with this gene in our family have lost their gallbladders. My issues are esophageal & just discovered I have a small hiatal hernia on top of severe asthma/allergies/sinus. My daughter has severe stomach pains after eating, sometimes gas & bloating. Diarrhea only sometimes. Also major sinus issues. She has been off dairy one week and I am suspecting lactose intolerance. What is the test for that? She has been allergy tested and is not celiac. As for me inflammation is my biggest problem (I get a lot of pain in neck & shoulders). I am still trying to figure out what foods cause it in me the most. Mayo Clinic is allergy testing us both end of July & very happy we are both visiting GI too. I now know how impossible it is to see GI.