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.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      8

      how much gluten do I need to eat before blood tests?

    2. - trents replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      IBS-D vs Celiac

    3. - trents replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      8

      how much gluten do I need to eat before blood tests?

    4. - SilkieFairy posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      IBS-D vs Celiac

    5. - catnapt posted a topic in Related Issues & Disorders
      0

      anyone here diagnosed with a PARAthyroid disorder? (NOT the thyroid) the calcium controlling glands

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

    • Total Members
      133,322
    • Most Online (within 30 mins)
      7,748

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

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • catnapt
      oh that's interesting... it's hard to say for sure but it has *seemed* like oats might be causing me some vague issues in the past few months. It's odd that I never really connect specific symptoms to foods, it's more of an all over feeling of unwellness after  eating them.  If it happens a few times after eating the same foods- I cut back or avoid them. for this reason I avoid dairy and eggs.  So far this has worked well for me.  oh, I have some of Bob's Red Mill Mighty Tasty Hot cereal and I love it! it's hard to find but I will be looking for more.  for the next few weeks I'm going to be concentrating on whole fresh fruits and veggies and beans and nuts and seeds. I'll have to find out if grains are truly necessary in our diet. I buy brown rice pasta but only eat that maybe once a month at most. Never liked quinoa. And all the other exotic sounding grains seem to be time consuming to prepare. Something to look at later. I love beans and to me they provide the heft and calories that make me feel full for a lot longer than a big bowl of broccoli or other veggies. I can't even tolerate the plant milks right now.  I have reached out to the endo for guidance regarding calcium intake - she wants me to consume 1000mgs from food daily and I'm not able to get to more than 600mgs right now.  not supposed to use a supplement until after my next round of testing for hyperparathyroidism.   thanks again- you seem to know quite a bit about celiac.  
    • trents
      Welcome to the celiac.com community, @SilkieFairy! You could also have NCGS (Non Celiac Gluten Sensitivity) as opposed to celiac disease. They share many of the same symptoms, especially the GI ones. There is no test for NCGS. Celiac disease must first be ruled out.
    • trents
      Under the circumstances, your decision to have the testing done on day 14 sounds very reasonable. But I think by now you know for certain that you either have celiac disease or NCGS and either way you absolutely need to eliminate gluten from your diet. I don't think you have to have an official diagnosis of celiac disease to leverage gluten free service in hospitals or institutional care and I'm guessing your physician would be willing to grant you a diagnosis of gluten sensitivity (NCGS) even if your celiac testing comes up negative. Also, you need to be aware that oats (even gluten free oats) is a common cross reactor in the celiac community. Oat protein (avenin) is similar to gluten. You might want to look at some other gluten free hot  breakfast cereal alternatives.
    • SilkieFairy
      After the birth of my daughter nearly 6 years ago, my stools changed. They became thin if they happened to be solid (which was rare) but most of the time it was Bristol #6 (very loose and 6-8x a day). I was on various medications and put it down to that. A few years later I went on this strict "fruit and meat" diet where I just ate meat, fruit, and squash vegetables. I noticed my stools were suddenly formed, if a bit narrow. I knew then that the diarrhea was probably food related not medication related. I tried following the fodmap diet but honestly it was just too complicated, I just lived with pooping 8x a day and wondering how I'd ever get and keep a job once my children were in school.  This past December I got my yearly bloodwork and my triglycerides were high. I looked into Dr. William Davis (wheat belly author) and he recommended going off wheat and other grains. This is the first time in my life I was reading labels to make sure there was no wheat. Within 2 weeks, not only were my stools formed and firm but I was only pooping twice a day, beautiful formed Bristol #4.  Dr. Davis allows some legumes, so I went ahead and added red lentils and beans. Nervous that the diarrhea would come back if I had IBS-D. Not only did it not come back, it just made my stools even bigger and beautiful. Still formed just with a lot more width and bulk. I've also been eating a lot of plant food like tofu, mushrooms, bell peppers, hummus etc which I thought was the cause of my diarrhea before and still, my stools are formed. In January I ran a genetics test because I knew you had to have the genes for celiac. The report came back with  DQ 2.2 plus other markers that I guess are necessary in order for it to be possible to have celiac. Apparently DQ 2.2 is the "rarer" kind but based on my report it's genetically possible for me to have celiac.  I know the next step is to bring gluten back so I can get testing but I am just not wanting to do that. After suffering with diarrhea for years I can't bring myself to do it right now. So that is where I am!   
    • catnapt
      learned I had a high PTH level in 2022 suspected to be due to low vit D  got my vit D level up a bit but still have high PTH   I am 70 yrs old (today in fact) I am looking for someone who also has hyperparathyroidism that might be caused by malabsorption    
×
×
  • 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.