Can I have an autoimmune disease with perfect lab results?

Posted by millyg6 @millyg6, May 20, 2023

I have been suffering with different pains for 5 years and I’m currently 18. It started with pains in my chest and back after I got sick for about a week. My doctor said they didn’t know what it was and that it was most likely just a weird symptom from a normal cold. A couple months later the same thing happened with less pain in my back and more in my chest. I went to the doctor again and they said that it only hurt because I had a sleepover the weekend before. Every few months I would be in extreme pain that would keep me in bed for about a week then it would go back to normal. After happening a few times my doctor finally did some blood test but my blood work came back perfectly normal so the doctor sent me home with no answer. After 3 years of mysterious flare ups of pain, the worst one happened. It started with my chest but I then got rashes all down my legs and arms, as well as redness on mostly one side of my face that was extremely hot even though I had no fever. My joints were also really hurting (it felt like really bad growing pain) mostly in my ankles and legs. This time the pain lasted for about a month and if I got out of bed to eat or do something I would end up on the floor crying in pain. This is when we finally forced the doctor to give us a referral to some more doctors. I then saw pulmonary, gastrointestinal, dermatology, physical therapist, and rheumatologist who all did tests (or looked at my previous blood work) and said I was perfectly fine. My mom and I found autoimmune disease and I saw that cutting out gluten is the first step for autoimmune disease so that’s what I did. It has now been 2 years without gluten and I feel a lot better. I no longer have weeks spent with chest pain. I do get flare ups still but they are much better. I will get the rashes and a little bit of chest pain but not the same as it was. I do feel better than before but I am still suffering with pain and fatigue without any diagnosis and the doctors telling me I’m perfectly fine. Is it possible to have an autoimmune disease with perfect lab results? Or if anyone has any suggestions on how to move forward I would very much love to hear. Thank you!

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artemis1886 | @artemis1886 | Feb 13 9:15am

In reply to @tisme "I was told it can depend if you are having a flare up or not." + (show)

Your autoimmune markers have to be elevated and high to have autoimmune. I will tell you it’s a very frustrating journey. Mine started in 2002 and was finally diagnosed last year. Took pictures of the task on my face and body showed it to the rheumatologist but all labs in normal level except my sed rate, complement C3 and C4 elevated,
Ana elevated all my inflammatory markers high. Neurologist did a biopsy for small fiber neuropathy and EMG/ nerve conduction test for peripheral neuropathy. Diagnosed with severe axonal sensorimotor peripheral polyneuropathy, dysautonomia, cardiac autonomic neuropathy aka can along with CIDP. They knew mine was autoimmune but couldn’t find the cause. Last year my body decided to go awol I tested positive for lupus, sojourns, Hashimotos and mixed tissue disease. There a bunch of labs that haven’t probably been run on you. I went to see a research neurologist in Boston for answers. These are the labs she had me do before seeing me.

krg351 | @krg351 | Feb 13 10:14am

Unfortunately yes. I have Bechet’s disease and my labs are perfectly normal. I was only diagnosed because of the amount of oral sores I get at once. Hopefully you find some answers and get a diagnosis.

kathan55 | @kathan55 | Feb 14 12:07pm

I have a similar issue. My pain started within a month of receiving chemotherapy. But I have a lot of strange symptoms. I started pain management shortly after the pain started. That was 20 years ago.
Recently, I saw a rheumatologist. My ANA was. 1:80. I think 1:160 or higher is considered abnormal. I also had a positive SSA. My Rheumatologist didn’t offer any explanations. I get very itchy and sometimes have rashes.
I have really bad muscle spasms and weakness. I was a nurse so that’s not always a good thing.. I tend to look things up!! One thing I saw was dermatomyositis. That includes the skin and the muscles.
I haven’t been back to the rheumatologist, but I plan to. I don’t like feeling like a hypochondriac. But I think we know our bodies. Best of luck to you. I pray you find what’s going on and get good relief.

animallover25 | @animallover25 | Feb 14 10:57pm

In reply to @jodiemc "Hi, I'm 36 and I am currently experiencing a myriad of symptoms including: heat in soles..." + (show)

@jodiemc I have a few of the symptoms you have. I have the heat in the soles of the feet, pain in the neck, chills, tingling in hands and feet and soreness around bottom of ribcage. Ask you Gastro Dr. to test you for Fatty Liver Disease. I had soreness for a long time under my ribcage, especially after eating fatty meats. Yes, I have Fatty Liver Disease, better to find out now if you have it, then later, as it can lead to fibrosis. I have shoulder issues and when I lay on my shoulder/side when I sleep, sometimes I have numbness and tingling in my hands. I have shoulder issues-impingement syndrome, bone spurs, arthritis and bursitis. I am gluten free and dairy free too. The hives sounds like an allergic reaction to foods or other chemicals. I would see a dermatologist for testing regarding the hives or an allergist for testing. I would highly recommend food testing and seeing a functional medicine Dr. They do way more bloodwork and labs than your primary care Dr. or a specialist. That is where I learned I had an intolerance to gluten/wheat and dairy. You may have a food allergy or intolerance. Pain in the neck-either see an Orthopedic Dr. or a Chiropractor. Acid Reflux, are you avoiding chocolate, tomatoes, spicy foods? Hope this helps and hope things have improved for you!

pb50 | @pb50 | Feb 15 4:14pm

In reply to @klcharris12 "I am really confused and concerned about my results. Every result has been in normal range,..." + (show)

@klcharris12 I didn't test positive for RA actor and wasn’t retested for 7 years when I moved and changed docs who got all new baseline data. I have never been much of a sweller. I rarely have blood results that are remarkable. Occasionally my Sed Rate goes up. But both Docs were/are awesome and experienced enough to trust their gut about the cause of my joint pain and stiffness and occasional pseudo gout. I am on Remicade infusions every 6 weeks and well controlled mostly. I have had four trigger fingers surgically released and currently am dealing with calcium crystals in my knee joint - aka pseudo gout.

A long way to saying yes 🙂

pb50 | @pb50 | Feb 15 6:19pm

@klcharris12 I didn't test positive for RA Factor when I was initially diagnosed and wasn’t retested for 7 years, when I moved and changed docs who got all new baseline data - and learned that somewhere along the way I had developed more characteristic RA Factor.

I have never been much of a sweller. I rarely have blood results that are remarkable. Occasionally my Sed Rate goes up. But both Docs were/are awesome and experienced enough to trust their gut about the cause of my joint pain and stiffness and occasional pseudo gout. There were also other family members with autoimmune disorders -such as reactive arthritis. I am on Remicade infusions every 6 weeks and well controlled mostly. I have had four trigger fingers surgically released and currently am dealing with calcium crystals in my knee joint - aka pseudo gout.

A long way to saying yes 🙂 and whoever said you need high blood levels of inflammation markers to have RA is simply incorrect. Lots of variability exists.