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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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I was told it can depend if you are having a flare up or not.
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1 Reaction@lisalisa
What is a new antihistamine and a steroid that were prescribed?
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1 ReactionI’m sorry you’re suffering. What labs have you had run? Did you have a complete Thyroid Lab run? That would include TSH, T3-free, T4-free and TPO Antibodies. If you have an autoimmune disease, which I do (Hashimoto’s), your TPO Antibodies will be elevated. I was diagnosed after a mild bout of Covid with Hashimoto’s and Hypothyroidism. I also have high Histamine in my body and it looks like you do as well, being so flushed in your photo. Have a food sensitivity test done to see what foods you’re sensitive to and try staying away from them. I eliminated eating gluten, dairy and soy and have lost a lot of body inflammation. I wish you well on your health journey!
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7 Reactions@tisme my daughter took 5 years at 32 to test positive for Lupus. Did not show antibodies until after childbirth. I was diagnosed with Myasthenia Gravis 8 years after symptoms began. I am what they refer to as seronegative . The known antibodies do not or have not been discovered yet but I have the disease. So yes you can. Get a good rheumatologist. The rash looks like it could be Lupus. Butterfly rash they call it. There is a book by renown Lupus researcher and doctor. Dr. Daniel Wallace.
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1 ReactionThere are rheumatologists and the there are RHEUMATOLOGISTS. Get a good one. Read my reply below, sorry it was a reply to a comment.
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1 Reaction@theresaag whish I could afford a private rheumy but I cant so I am stuck with the government funded one. as my family doc says " he doesnt know u "
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2 Reactions@lkirnbauer Should we add lupus to the list as well?
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1 ReactionYes, your labs can be normal and your face does have the look of a lupus related butterfly rash. Chest pains are not unusual and the leg pain is typical. You said you can't get to a rheumatologist. Where are you located? Did you ever have mono? Epstein Barr is the virus that causes mono and it is not unusual that a person who develops an autoimmune disorder has had Epstein Barr at some point. It is also true that gluten intolerance is frequently seen in autoimmune patients. Your best bet is a complete rheumatology work up when all your symptoms are active and visible. The rash can be biopsies, doesn't have to be from your face. Mine was biopsies from my chest with a very small scar. It's called a punch biopsy. Don't give up. It often takes years to be properly diagnosed. I wish you luck. Hang tough.
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1 ReactionI am really confused and concerned about my results. Every result has been in normal range, a couple of them show a trend where the numbers increased but the results are still in normal range. I wake up hurting on most days. My Rheumatologist has been proactive by prescribing Plaquenil, but I would love to be able to identify the reason behind all of this. This is exhausting.
Try taking out all dairy. If you were sensitive to gluten, dairy is probably the next one take out of your diet for a few months. When I have my food sensitivity test, some foods were taken out for 4 months, some for 6 months and some like gluten, forever out. Good luck.
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