Can I have an autoimmune disease with perfect lab results?
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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Yes, it is possible to have 'normal' ESR and CRP, the inflammation markers, and still have an autoimmune disease. Is it possible for you to get into rheumatology at a Mayo satellite or the Mayo Clinic itself? If not, to a teaching hospital in a city where the doctors have seen a wider variety of patients. I'm no doctor, but what you have experienced over a long period should have an explanation. I wish you the best because you are right in wanting to pursue this.💞
Hello @millyg6, I would like to add my welcome to Connect along with @grammy82 and others. I know it has to be pretty frustrating being so young and suffering with no diagnosis for 5 years. I'm hoping you can find some answers soon. I think @grammy82 's suggestion of seeking help at a teaching hospital or major health facility like Mayo Clinic would be a good option if possible.
I wonder if the tips provided by the Autoimmune Association might be helpful.
— Tips for Getting a Diagnosis of an Autoimmune Disease: https://autoimmune.org/resource-center/diagnosis-tips/.
You mentioned that eliminating gluten gave you quite a bit of relief. Wondering if this may be a tip as to what may be going on. Have you talked with the doctor about the changes that happened when you gave up gluten?
I’m so sorry for what you are going through. To answer your question, Yes. My lab results were good and the autoimmune psoriatic arthritis showed up in may sacrum. So, it is possible.
My NM doctor told me to diet, gluten free, low inlammatory diet with green and herbal teas, no dairy, no nuts or grains. Basically fruits, veggies and fish are okay. This is a recent and new eating program. She’s not sure if I have another autoimmune condition but we are working with this diet to see how I do and feel.
I think you need to go to a very knowledgeable rheumatologist, immunologist maybe allergist. I know you said you saw a rheumatologist there is nothing wrong with a second opinion.
I really hope you get answers sooner rather than later. I am glad you are having good results with dietary restrictions in place. Good going!!!
All the best.
I'm so sorry you are going through such a difficult time. You don't mention by name what tests you have had, and the rash on your face looks like a classic Lupus "Butterfly" rash and you also describe the symptoms of Lupus which is an autoimmune condition. Try some research on this topic and if you think your symptoms fit, find a good Rheumatologist for help and further testing.
My blood tests were normal for years. Then, we happened to draw blood at exactly the right time and found an anti-RNA test that gave a red flag. My blood still tests negative most of the time. I say it is because my body rocks at homeostasis, at least at the blood level. Unfortunately, that means that if they don't catch a blood sample at exactly the right time, they miss some of the odd fluctuations that are happening. For years, doctors told me there was nothing wrong. Then we jumped to a diagnosis of lupus after the anti-RNA finding. Since most doctors have not been able to replicate that finding, some of them dismiss the experience entirely and others say I have something called UCTD. I went to Mayo clinic when the neurological symptoms started. They found your basic small and large fiber neuropathy but they also found that my body makes extra proteins. This is a somewhat new area of research. I sometimes wonder if this extra proteins have affected my connective tissue as well as my nerves. No one really knows. At least not that I have found. Try not to let the lack of answers get you down. These doctors do not live inside your body, nor do they see you on a daily basis. And research takes time.
Yes, you can. I had connective tissue diseases (osteoaritris, psoriatic arthritis and rheumatoid arthritis) for 20 years and my test results are usually normal.
Yes, you can. I've had connective tissue diseases (osteoarthritis, psoriatic arthritis and rheumatoid arthritis) for 20 years and my test results are usually normal.
Fourteen years ago I had mostly joint pain and went to a rheumatologist (it was after getting H1N1 flu and stress from guys trying to kill me). He was going to put me on a drug regime. I ended up not doing that. I read that gluten free (GF) helps some symptoms, so tried that. My GI problems were gone in 3 days and my joint pain and skin rashes within a few months. My doctor ran a celiac blood panel and it was negative, and I had a endoscopy/colonoscopy scheduled in 4 months (also negative). The gastroenterologist only had me eating gluten for a week before the test and didn't believe I had celiac, so only took one endoscopy biopsy sample. I have the HLA DQ8 haplotype, but 30-40% of the population has that or HLA DQ2 (celiac if it is triggered). So, I have celiac and collagenous colitis, but negative celiac results. Even a bread crumb will result in skin rash, GI problems, joint pain, balance, and other problems, and they take 3-7 days to go away. Doctors are probably missing things with you; they tend to look for things that they know and other evidence slips through their fingers. With autoimmune diseases it is important to control stress (easier said than done) and have fun things to look forward to.
Yes, it is called being ‘seronegative’ ie. you have a disease/condition which can be diagnosed symptomatically (usually by a doctor worth their salt) but the blood markers remain negative.
For instance I was seronegative for Sjögren’s syndrome for eight years. I undoubtedly had that autoimmune condition quite severely but my blood markers always came back negative until one day…….they didn’t.
Oh yes! It can be so discouraging to get bloodwork that does "not match"… did that for many years.
But my rheumatologist said that "you treat the patient, not the lab work!"
Also, there is a blood test for Lupus that looks at your genes.. a very definitive test! Although I have all the symptoms at least Lupus is off my list.
Hang in there, having symptoms but not knowing exactly what's happening is frustrating. You need a good doctor who reads you and is supportive throughout this (sometimes very long) process. There are many of us who know exactly how discouraging this can be… all the best to you as you soldier on!