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Please help!! auto immune illness even w/ normal blood test results?
Autoimmune Diseases | Last Active: Nov 30, 2025 | Replies (52)Comment receiving replies
@wonderwall12345 Hi! I know this is old but I came across your post about unknown autoimmune disease. It sounded almost exactly like me. Even down to the eye rashes. All of my blood work is always normal except my ANA and my WBC and platelets go low. Negative colonoscopy. My doctors have diagnosed me with Lupus and Behcets, but they still aren't sure. I went through so many different specialists. I finally had an immunologist who had me do a gluten free low fodmap diet since he said I'm one of their hypersensitive people. We didn't know why I was randomly getting hives. It turns out I am allergic to gluten and sensitive to several other food and additives, but it hasn't helped my autoimmune symptoms except for easing some of the digestive issues I've had for years. Everything else remains the same. I have quite a few more symptoms than what you mentioned but I have the same symptoms you mentioned too. I'm wondering if you got a diagnosis yet? Are you on any sort of medications? Did you just find maybe you were sensitive to gluten?
Replies to "@wonderwall12345 Hi! I know this is old but I came across your post about unknown autoimmune..."
Hi @linsayculver
I have many of the same symptoms, including mesenteric panniculitis and puffy face. My diagnosis is Scleroderma (skin tightening) with GI involvement (mild fibrosis of the intestines). I have learned about panniculitis from a CT scan of the lower abdomen. GI discomfort existed for many years before I got Scleroderma, and now it is worse. The symptoms are: tightness in the lower abdomen as if someone is pulling it into a knot, getting worse on walking, GI discomfort with constipation, particularly post high protein meals, or prepared meals with preservatives. My GI is very sensitive to acidic foods like citrus. No acid/vinegar in the food, or high salt, or spices, which eliminates all sauces. Geri-Kot (Senna) was recommended for constipation to ensure daily bowel. Medications can make GI pain worse. Take medications with meal. Doctors do not suggest any specific treatment for panniculitis but a diet of freshly cooked meat, fish, and vegetables, and avoiding things that make it worse. Does anyone else have mesenteric panniculitis? What are the symptoms and how are you dealing with it?
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Welcome @linsayculver, I'm not sure the member is still following Connect as she last posted in May 2024. Hopefully she will see your post. The good news is that you are not alone. @celia16 and others that are still following this discussion may have some suggestions. @linsayculver did mention that the first response in the discussion shown below was helpful.
Did you see the first post in the discussion by @slkanowitz? - https://connect.mayoclinic.org/comment/1030839/