Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Salivary Glands


Moongirl

Recommended Posts

Moongirl Community Regular

About the same time i was dx with celiac disease...i started feeling this funny 'lump' underneathe my jaw on my right side.

after about 2 years to the ENT dr, and the dx of dry salivary gland, it seems to begetting worse. So i was for a CT scan to rule out a stone.

And I got the all clear, nothing is there.

So my question is, could it be only dehydration? I noticed when i was eating sour candy i had much relief. Also when he was checking for the saliva secretion under my tongue, there wasnt much.

so my next phone call to the dr, i kinda want to have an idea what to ask him what my next steps are...

any advice or comments would be greatly appreicated.

Thanks :)


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



jewi0008 Contributor
About the same time i was dx with celiac disease...i started feeling this funny 'lump' underneathe my jaw on my right side.

after about 2 years to the ENT dr, and the dx of dry salivary gland, it seems to begetting worse. So i was for a CT scan to rule out a stone.

And I got the all clear, nothing is there.

So my question is, could it be only dehydration? I noticed when i was eating sour candy i had much relief. Also when he was checking for the saliva secretion under my tongue, there wasnt much.

so my next phone call to the dr, i kinda want to have an idea what to ask him what my next steps are...

any advice or comments would be greatly appreicated.

Thanks :)

I have a question, then, for you. Does your mouth/tongue annoy you? That is my BIGGEST problem! I always think I feel little lumps underneath my jaw.

Moongirl Community Regular
I have a question, then, for you. Does your mouth/tongue annoy you? That is my BIGGEST problem! I always think I feel little lumps underneath my jaw.

Nope Ive never had a problem with my mouth or tongue. its just my salivary gland on one side...i cant seem to figure out whats causing the lumpiness....they keep saying it dehydration, but i dont think thats the only thing. <_<

Katydid Apprentice

I couldn't believe it when I saw your post about salivary gland issues. My husband, who has been celiac for 20 years gets a 'lock jaw' like syndrome. He goes to the doctor and they call it a salivary gland inflamation. They give him antibiotics and it goes away. I never dreamed it might be celiac related.

CDFAMILY Rookie

Well, this is definitely my area. I had my left gland swell so bad I was sent to the ER. I was in for 3 days to get the swelling down on drips, steroids and antibiotics. They were afraid the swelling would close my airway. That was last April 2006. I would periodically get swollen glands since then. By January of this year this happened again and called doctor and got a prescription but nothing helped and I ended up in the ER begging for morphine. My gland was huge, my tongue was swollen and I was running a 102 fever. By evening, out popped a 4mm stone.

My Xray in April of 2006 showed nothing but of course now I know I had a stone just waiting to come out. I have had my glands swelling for years and always thought it had to do with my body trying to fight an infection, but now I know it was really a stone.

They tell me to suck on sour candy which helps if it is barely swelling, but once the stone starts moving, and the gland becomes inflamed, you really can't suck on anything let alone eat.

Gemini Experienced

I posted on another thread about this but you need to be tested for Sjogren's Syndrome. Sjogren's is another autoimmune disease that Celiac's often get also. Causes dry eyes and dry mouth AND causes

swelling of the salivary glands as a result of the inflammation. I never had the swollen glands but have the dry eyes and mouth. I believe stones are also a problem for some.

Tests are blood work and are called SSA and SSB. Doctor's rarely get this right and dehydration is not the cause. There are products to use that can make the symptoms easier to deal with but, of course, there is no cure. I am now on Restasis eye drops and they have made a HUGE difference in my eyes.

Sorry to bring more bad news but I felt I should tell you all this so you can be tested and get some relief. Otherwise, you'll just be plied with antibiotics and other meds that won't do anything long term.

Good luck to all!

Archived

This topic is now archived and is closed to further replies.

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,200
    • Most Online (within 30 mins)
      7,748

    TGE
    Newest Member
    TGE
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • Scott Adams
      Celiac disease is the most likely cause, but here are articles about the other possible causes:    
    • xxnonamexx
      Please read: https://www.fda.gov/news-events/press-announcements/fda-takes-steps-improve-gluten-ingredient-disclosure-foods?fbclid=IwY2xjawPeXhJleHRuA2FlbQIxMABicmlkETFzaDc3NWRaYzlJOFJ4R0Fic3J0YwZhcHBfaWQQMjIyMDM5MTc4ODIwMDg5MgABHrwuSsw8Be7VNGOrKKWFVbrjmf59SGht05nIALwnjQ0DoGkDDK1doRBDzeeX_aem_GZcRcbhisMTyFUp3YMUU9Q
    • cristiana
      Hi @Atl222 As @trents points out, there could be many reasons for this biopsy result.  I am interested to know, is your gastroenterologist concerned?  Also, are your blood tests showing steady improvement over the years? I remember when I had my last biopsy, several years after diagnosis, mine came back with with raised lymphocytes but no villous damage, too! In my own case, my consultant wasn't remotely concerned - in fact, he said I might still get this result even if all I ever did was eat nothing but rice and water.   My coeliac blood tests were still steadily improving, albeit slowly, which was reassuring.
    • trents
      Welcome to the celiac.com community, @Atl222! Yes, your increased lymphocytes could be in response to oats or it could possibly be cross contamination from gluten that is getting into your diet from some unexpected source but not enough to damage the villi. And I'm certain that increased lymphocytes can be caused by other things besides celiac disease or gluten/oats exposure. See attachment. But you might try eliminating oats to start with and possibly dairy for a few months and then seek another endoscopy/biopsy to see if there was a reduction in lymphocyte counts. 
    • Scott Adams
      This is a solid, well-reasoned approach. You’re right that “koji” by itself doesn’t indicate gluten status, and the risk really does come down to which grain is used to culture it. The fact that you directly contacted Eden Foods and received a clear statement that their koji is made from rice only, with no wheat or barley, is meaningful due diligence—especially since Eden has a long-standing reputation for transparency. While the lack of gluten labeling can understandably give pause, manufacturer confirmation like this is often what people rely on for traditionally fermented products. As always, trusting your body after trying it is reasonable, but based on the information you gathered, your conclusion makes sense.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.