Lymph nodes in neck + thyroid issues

[Blue Roan]

Hi there!

I know that celiac can present in hundreds of different ways, which is why I’m wondering if anyone else has had these same symptoms. 

I am a young adult in overall great health. I was diagnosed with celiac in February and have been extremely strict on maintaining a gluten-free diet. Thankfully, my stomach discomfort and other celiac symptoms are non-existent on most days. However, ever since the end of July, I’ve had a completely new set of issues. 

I’ve had on and off swelling in my lymph nodes below my jaw and my thyroid (not visibly or when touching my neck, but the sensation is there). I’ve been to my general doctor, endocrinologist and OBGYN. They’ve all said they don’t see/feel anything. I just got my thyroid panel back today and everything is normal (TPOAb is also normal so no Hashimoto’s). All of my other labs (A1C, CBC, glucose, potassium, iron, etc.) have been consistently normal and I’ve had to have them done multiple times this year. IGA is also significantly down since diagnosis. I’m literally at my wits’ end because they keep telling me I’m fine/paranoid but my throat/neck area has felt noticeably different for the past several months. 

I also have been taking Claritin consistently for weeks and use a humidifier at night in case it’s from seasonal allergies, but nothing is working.

So basically, I’m asking if any other celiacs had/has these symptoms and if so, how you managed them. I know celiac presents in hundreds of ways, but I’ve yet to see anyone mention these symptoms specifically. 

[knitty kitty]

Hi, @Blue Roan,

I have Sjogren's Syndrome that made my salivary glands under my jaw swell.  I also have dry eyes from Sjogren's.  Yes, Sjogren's is yet another fun autoimmune disease that can occur in Celiac Disease.  It starts in the salivary glands.

Vitamin D deficiency can also make salivary glands swell.  I was very deficient in Vitamin D also.  Vitamin D is instrumental in regulating the immune system and lowering inflammation.

My dentist checked for stones blocking ducts in the salivary glands, too, but I didn't have any of those.  Yeah! 

Try cutting out the antihistamines, because they make everything dry up.  

Correcting my Vitamin D level to 80-100 nmol/ml has helped immensely.  I also supplement with Omega Threes (flax seed oil, oil of evening primrose) which has also helped my dry eyes and reduced my enlarged salivary glands.  

Hope this gives you some direction to go next on your journey.  Wish it was better news.  Keep us posted on your progress!  

P.S. Interesting Reading:

Association Between Vitamin D and Minor Salivary Gland Inflammation

https://pmc.ncbi.nlm.nih.gov/articles/PMC9807185/

Outline of Salivary Gland Pathogenesis of Sjögren’s Syndrome and Current Therapeutic Approaches

https://pmc.ncbi.nlm.nih.gov/articles/PMC10342367/

Edited November 2, 2024 by knitty kitty
Added post script

[Scott Adams]

It’s understandable to feel frustrated, especially when you’re managing celiac well but still experiencing new, unexplained symptoms. Many people with celiac notice sensations around the neck and jaw area, even without visible swelling. Sometimes, lymph node sensitivity or a tight feeling in the throat can linger as part of the body’s inflammatory response, even if your thyroid and other tests come back normal. It sounds like you’ve been thorough with testing and have seen multiple specialists, which is great.

A few things might be worth considering: for some people with celiac, there can be lingering sensitivities to trace gluten, cross-reactive foods, or even certain environmental factors that can cause persistent inflammation. Since you’ve tried antihistamines and a humidifier, you might want to discuss options like different allergy medications or seeing an ENT specialist if you haven’t already. Some find that supplements (like anti-inflammatory options or probiotics) help support overall inflammation reduction, though you should always check with your doctor first. It’s frustrating when you feel the symptoms without an obvious cause, but trust your instincts—hopefully, with persistence, you’ll find answers and some relief soon.

[RMJ]

I’ve had on and off swelling of a salivary gland below my jaw - sialoadenitis.  It was very visible when it swelled though.

[Blue Roan]

@RMJ@Scott Adams@knitty kitty,

Thank you for all of your responses, tips, and suggestions. I'm very grateful that this website exists. It makes me feel a lot less alone in my celiac journey! 

The endocrinologist had me do a neck ultrasound just to be safe. Thankfully, thyroid and lymph nodes came back normal. knitty kitty, my Vitamin D is on the higher end of normal, but I will definitely consider the dentist route next time I have my checkup if I'm still noticing issues. Thank you! Scott, thanks for suggesting the ENT. I may consider seeing one if things don't resolve on their own. I am thankfully feeling a bit better now, so hopefully, this is just some sort of residual celiac inflammation like you mentioned, Scott.

After all of the numerous tests and clinical visits I've had all year, I'm going to give my body (and wallet) a break for a few months to rest and heal without the stress of doctor appts/labwork and whatnot. Perhaps the health anxiety is also contributing to some of my symptoms. 

Thank you once again for sharing your stories.