Undiagnosed Autoimmune Disease - No one will listen to me

@bostonian71 try going to Keto diet it may help

Have you done any type of food logs and marking down any type of symptoms or change in symptoms with the different foods you eat? I use a medical journal; clever fox has some great ones you might want to check out.

Have you been tested thoroughly for food allergies/intolerances, Celiac/sensitivities? The Functional Medicine Dr. should have done this. If they haven't, I would request that be done. I'm not Celiac, however I have an intolerance to wheat, gluten, dairy and egg. I avoid all of these, it is difficult, but I do it and I feel so much better. I still struggle even with gluten free foods. I had no clue food was causing my tummy problems, acid reflux, diarrhea, throwing up, etc... When I got tested at an alternative Internal Medicine Dr. for food allergies, he caught it and told me to change the way I eat. There are the allergy Dr. traditional prick type tests and then there is the blood type testing. You actually need both as they both results in different results. I am rare, I have CVID- Common Variable Immune Deficiency, so I get lots of sinus, ear and upper respiratory infections. I do infusions also weekly for my immune deficiency. It cuts back on the number of infections I get each year. I'm sorry you are going thru all of this, I understand the ongoing part of it, however in a different way for me. I know auto-immune and immune deficiencies are connected; however, Dr's just aren't sure exactly how. Do you use filtered water to drink? I have a reverse osmosis system that I use. Cut back on chemicals for cleaning and products you use for your home/yard, etc... I use an air purifier in our home; it is a medical grade hospital kind one and it helps me. I wear a mask outside and when I am around a lot of people in public to protect myself. Hope you get some answers soon! I know the Functional Medicine Dr's do vary, so you could always go to a different one and get a different viewpoint, with different testing.

Hello, Gm. I’m sorry to hear that you are going thru it!

Please ask your doctor about
https://connect.mayoclinic.org/group/polymyalgia-rheumatica-pmr/
I hope this may be of some help to you!

@dainamerritt

MCTD = Mixed connective tissue disease
"Mixed connective tissue disease, also called MCTD, has symptoms of more than one rheumatic condition. These conditions include lupus, scleroderma and myositis. Many people who have mixed connective tissue disease also have inflammatory arthritis and Sjogren syndrome. Mixed connective tissue disease is not common." https://www.mayoclinic.org/diseases-conditions/mixed-connective-tissue-disease/symptoms-causes/syc-20375147

"Fibromyalgia is a long-term condition that involves widespread body pain. The pain happens along with fatigue. It also can involve issues with sleep, memory and mood. Researchers think that fibromyalgia affects the way the brain and spinal cord process painful and nonpainful signals. That increases your overall sensitivity to pain."
https://www.mayoclinic.org/diseases-conditions/fibromyalgia/symptoms-causes/syc-20354780

It is real. One thing I would check, however, is to reduce as much pesticides, preservatives, or anything mildly toxic in your food, for instance, eating organic and unprocessed. In most people that might not make a difference, but for you, it might.
I have an unidentified autoimmune disease, known as Central Sensitization Syndrome as part of a catch-all, but we found that limiting toxins in foods, and also perfumes, diesel, harsh cleaners, and especially stuff like wormers (skin contact causes a reaction), sprays (hair or air freshener) allowed us to manage it.
I guess it reduces the strain on the body, and especially as you have chronic kidney disease, I suspect it may help, even if only a little.

@marilynredder2367 who did you see at the Mayo Clinic in Minnesota? Rochester?

@bostonian71
I have also had severe allergies for 50 years. I was allergic to my own skin at age 10, Pemphigus foleousis , severe environmental allergies and the last 10 years have been dealing with food, allergies, 55 high IgE levels. I have been to multiple allergist immunologist with no help. I finally found a Dr in St Louis that diagnosed me with oral allergy syndrome and mast cell activation syndrome in July 2025. I started Xolair injections 525 mg every two weeks and it has helped. No anaphylactic reactions since I started Xolair. I still take 7 to 10 allergy medicines a day. But I am able to re-introduce some foods and not have reactions. Objectively.

@fessenbeck65 who did you see in St. Louis.? I live there and trying to find some Doctor who has a clue about treating theses different disease states.

I have the same symptoms as described in the original post as Undiagnosed Autoimmune Disease.
My diagnosis is systemic sclerosis or scleroderma, confirmed by SCL-70 blood test. It started 3.5 years ago with just a little bit of skin involvement over the fingers and then progressed rapidly to all skin, joints, and GI. Most difficult symptoms are fatigue, and joint stiffness, swelling, and limited mobility. Joint involvement in scleroderma is similar to inflammatory arthritis or seronegative RA.
Did anyone have good response to IL-17 Inhibitors?

@kjoeme1978 I see Dr Jennifer Monroy @
Washington University./Barnes Jewish hospital. She is awesome! She reviewed my previous medical records from the multiple different allergist, immunologist I had seen and hospitalizations prior to my visit and apologize that nobody had been able to help me the past 8 yrs. She answered my questions and concerns.