Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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

Lymph nodes?


kam00096

Recommended Posts

kam00096 Contributor

Hi guys it's been a tough day. I had to decide whether to go ahead with an endoscopy next week. GP wanted me to do it despite not having done a gluten challenge and being gluten-free for 5 months. I wasn't sure if there was any point at all at the moment and after spending most of the morning trying to get advice from anyone at the hospital the endoscopy team nurse eventually told me there was absolutely no point and that they didn't know why the consultant had referred me for it (I just can't do a gluten challenge right now, I'd be too ill to work, which I told the consultant). 

Anyways, after getting that sorted it's been replaced with a new, more worrying problem. I've had a swollen lymph node in my neck for the last 3 months (so since I went gluten-free). Doc said it was nothing to worry about a month ago but now I have 2 and they want me to get them biopsied. I've been getting night sweats again (along with other random symptoms) and a quick google has me completely panicking about lymphoma. I know from reading on here that some people have issues with lymph nodes, and my blood tests 6 weeks ago were totally fine, plus I've had the night sweats on and off for years, but with feeling so rough again lately and the increased risk of lymphoma, I'm really scared. 


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



Celiac.com Sponsor (A8-M):



ironictruth Proficient

I am so sorry. How scary. I do know others get swollen lymphnodes. It was mentioned to me twice that mine might have been but no other doc found it and my labs were good. I have had night sweats for years as well. I hope they rush your appointment so you can get an answer.

This is coming from someone who is totally freaked out herself so you are in good company.

I remember telling someone if my celiac gene was negative why bother with the biopsy and they responded: because you are having problems. 

And I was like, oh right, duh. 

So if you have been recently, or are dealing with digestive issues or heartburn, I would go ahead and do it. 

While being gluten-free may reduce accuracy of celiac biopsy, it does not erase the possibility of finding celiac related damage and it also may find or rule other stuff. 

 

 

katesyl Apprentice

I am sorry as well. I too am freaked out about other health related items right now. I know how Dr. Google makes us panic so badly... and yet... It's so hard to stay away.

I had neck swelling this summer noted on one of my routine doctor's exams. She rushed me off to get thyroid lab work and a thyroid ultrasound, all of which were normal. Mind you, I have been diagnosed with celiac disease as of three years ago. I do know I have been glutened from time to time at restaurants (UGH). I am not sure if this swelling was from being glutened or what the deal was. But during this time, I googled a lot and got myself worried about lymphoma as you are. I went to my primary care doctor later on this summer and she said my neck wasn't swollen anymore. They never said it was actually a lymph node but if it wasn't my thyroid then I don't know what else it would have been. But now I am seriously always "Checking" my neck by rubbing it. I am not sure I would even be able to tell much but my husband gets upset with me because he says that I will be the one to make my neck swell by rubbing it...he does have a point. 

Lymphnodes do swell from other things such as viruses and bacteria.

Let us know what you find out on your biopsy. I am glad you have a doctor that is being proactive now and wanting you to get things checked out. 

Ennis-TX Grand Master

Yeah, my first response to gluten is my lymp nodes swell, and I have been having the night sweats for a few years now. -_- Got to admit the doctors actually causally said I might have lymphoma but needed further testing. Sorry can not be of more help, I will respond here if they ever get back to me about it.

kam00096 Contributor

Thanks for the replies. Am sorry other folks are having similar problems. I'm trying to tell myself that I had noticed the swollen lymph nodes before my last set of bloods and they all came back great, and that the night sweats have been on and off for the last few years (in which time I've had hundreds of normal bloods done, and a clean chest X-ray) so it might not necessarily be connected. I've got a cough as well which is freaking me out more. Unfortunately I can't get bloods done for another week, and goodness knows when the biopsy will be, so could be in for a long spell of panic and not knowing. It's so hard not to go to the worst case scenario. 

  • 2 years later...
Shayla21 Apprentice

Hey I’m not sure if you will see this but how did you biopsy go? Did you node end up going away? 

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now

  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      129,536
    • Most Online (within 30 mins)
      7,748

    EKM
    Newest Member
    EKM
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.2k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Morgan Tiernan
      Hi all! Ive been away for a while navigating this new illness and also studying at university. But im back with so more updates and info, thank you all for your help and support.    Update: I suffered with an infection of my dermatitis herpetiformis a month or so ago. This resulted in a trip to a&e with an extremely swollen face, and a 2 week dose of doxycycline. Of course the infection went down but my dermatitis herpetiformis still remains to pop up every now and again. However, I’m coming up to almost a year being gluten free and I can honestly say the outbreaks are less often and more mild. But I’ve been eating extremely strict on a gluten-free diet (not much eating out and very cross contamination aware), so fingers crossed this continues.  As I am UK based, I have finally got through to dermatology and rheumatology in the NHS (no more private appointments which is great!) She was amazing and agreed on what sounds like dermatitis herpetiformis. However, she has also diagnosed me with chronic urticaria (hives) which will explain the swelling of my face, eyes, lips, and even sometimes tongue! So might be an allergy on the case, or perhaps another autoimmune condition due to the undiagnosed coeliac until this year. A skin biopsy has now been arrange for next month which is positive (there’s talks of me eating gluten for a day to activate the rash also, scary but they will have medication on site!)  Currently, I’m feeling more positive about my diagnosis and am so thankful to my hospital for the ongoing support I wasn’t able to get from my GP.  Things are looking up!
    • Morgan Tiernan
      Hi there! This is something I’ve often wondered too! I’m still going through the process of getting an official dermatitis herpetiformis diagnosis, however I’ve been battling for 3 years and the dermatologists are pretty certain it’s dermatitis herpetiformis/celiac disease with it’s classic appearance and symptoms (it’s nasty stuff!) About 2 years ago before dermatitis herpetiformis was on the cards, I suffered with a terrible episode of seb dermatitis, it was absolutely everywhere and was probs left undiagnosed for months before I could get in with a dermatologist! I used ketaconazole and it seemed to do the trick. However, knowing what we do now, the dermatitis herpetiformis was definitely aggravating/causing this and I found that it was the use of too many steroid creams (they thought I had eczema) and heavy moisturisers bothering my dermatitis herpetiformis.  Since being gluten free for a year, I haven’t really suffered with an episode of the seb dermatitis for a while. Just trying to navigate the dermatitis herpetiformis outbreaks now.  But definitely feel there could be a correlation! 
    • leahsch
      I have had very mild rosacea on my cheeks for years. I also am celiac abd have recently been diagnosed with rosacea in one eye. I have been prescribed eye drops during the day and a gel at night. 
    • JD-New to Celiac
      Although diagnosed with celiac and dermatitis herpetiformis, I was curious about the celiac genetics and had that testing done on my own. Unfortunately, the lab does not explain the results and any doctor I have asked said I would need to see someone specializing in genetics. I was hoping someone out there might help me understand. Here is what came back and although I understand the HLA DQ2 and HLA DQ8, I wasn't sure what the variants mean and why they repeat twice. Someone said it was a double marker meaning both of my parents gave me copies. I also read having this combination makes my celiac potentially much worse. HLA DQ2 - Positive | HLA DQ8 - Negative HLA Variants Detected: HLA DQA1*05 and again HLA DQA1*05 HLA DQB1*0201 and again HLA DQB1*0201
    • JD-New to Celiac
      Understanding that normal is <15, I started off with 250+, then using the same lab it took two years to get to 11, the last test was 3. So, it jumped back up for some reason which is why I suspected gluten in my diet somewhere. I do not do dairy, eggs, oats, or soy. I am vegan and gluten free, and take numerous supplements with the help of this forum.
×
×
  • Create New...