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Swollen Lymph Nodes


Emma R.
Go to solution Solved by Scott Adams,

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Emma R. Apprentice

Hello my gluten free friends, 

I am 2 years out from diagnosis and doing well. A year prior to having any symptoms I noticed a swollen lymph node. This has been 3ish years ago now. The lymph node currently is still swollen. I recently went back to the doctor for it. They did an ultrasound and found it to have “no suspicious activity and benign in nature”. My doctor said it could have been one of the first signs my body was giving me that I had an autoimmune disorder. She said it may go away eventually or could always stay slightly swollen because of the disease. Has anyone else experienced something similar? I don’t know if I should ask for a biopsy to confirm it’s not cancerous. 
 

Emma 


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  • Solution
Scott Adams Grand Master

Your experience with a persistently swollen lymph node is understandable, especially given your autoimmune diagnosis. It’s reassuring that the ultrasound showed no suspicious features and your doctor attributes it to your autoimmune condition—this is actually quite common. Many people with autoimmune disorders (like celiac disease, rheumatoid arthritis, or lupus) report swollen lymph nodes as their immune system remains in a heightened state of activity. Since your node hasn’t changed significantly in years and imaging supports its benign nature, cancer is unlikely, but your concern is valid.

If the node grows, becomes painful, or develops other worrisome changes (like hardness or irregular shape), pushing for a biopsy would be reasonable. However, given your stable history and medical reassurance, monitoring it may be the best approach for now. That said, if anxiety persists, discussing a biopsy with your doctor for absolute peace of mind is never wrong—your comfort matters too. Others in autoimmune communities often share similar stories of "reactive" nodes that linger indefinitely, so you’re not alone. Trust your instincts, but also take comfort in the ultrasound results and your overall stability since diagnosis. Keep your doctor updated if anything shifts!

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    • par18
      Thanks for the reply. 
    • Scott Adams
      What you’re describing is actually very common, and unfortunately the timing of the biopsy likely explains the confusion. Yes, it is absolutely possible for the small intestine to heal enough in three months on a strict gluten-free diet to produce a normal or near-normal biopsy, especially when damage was mild to begin with. In contrast, celiac antibodies can stay elevated for many months or even years after gluten removal, so persistently high antibody levels alongside the celiac genes and clear nutrient deficiencies strongly point to celiac disease, even if you don’t feel symptoms. Many people with celiac are asymptomatic but still develop iron and vitamin deficiencies and silent intestinal damage. The lack of immediate symptoms makes it harder emotionally, but it doesn’t mean gluten isn’t harming you. Most specialists would consider this a case of celiac disease with a false-negative biopsy due to early healing rather than “something else,” and staying consistently gluten-free is what protects you long-term—even when your body doesn’t protest right away.
    • Scott Adams
      Yes, I meant if you had celiac disease but went gluten-free before screening, your results would end up false-negative. As @trents mentioned, this can also happen when a total IGA test isn't done.
    • Seaperky
      I found at Disney springs and Disney they have specialist that when told about dietary restrictions they come and talk to you ,explain cross contamination measures tsken and work with you on choices. Its the one place I dont worry once I've explained I have celiac disease.  Thier gluten free options are awesome.
    • Churley
      Have you tried Pure Encapsulations supplements? This is a brand my doctor recommends for me. I have no issues with this brand.
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