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

Enlarged Spleen


alevoy18

Recommended Posts

alevoy18 Explorer

Hi Everyone,

I was diagnosed by tTG blood test and positive biopsy (Marsh 3B) in November 2009. Over the last couple of years I've had a few ultrasounds, due to finding lymph nodes in my neck/armpit. Prediagnosis I had a Ultrasound that showed my spleen as 11cm long. 6 months later after going gluten free, I had another ultrasound which showed my spleen was still normal sized at 10.6cm long. On my most recent U/S (Feb 2), my spleen was 14cm long and listed as mild/moderate splenomagly.

Has anyone experienced this? I have had issues with my RBC/HB/HCT counts being borderline low for the last couple of years and my reticulocyte (immature red blood cells) counts being extremely low. I saw a hematologist, but they were not concerned until my red cells dropped lower. I'm just curious if anyone knows what the enlarged spleen is likely from or if I should see my doctor about it. A specialist ordered the U/S for the lymph nodes, no nodes were found in the abdominal section, just the spleen size. Is the spleen something that needs to be investigated or do I not need to bring it up to my family doctor?

As for the lymph nodes, last check the largest in my neck was 2.0cm x 0.8cm and the largest in my right armpit is 3cm x 1.5cm. The biopsy of the armpit had a damaged specimen, so I am awaiting to see if I need another one. This is all likely nothing since my CBC tests are only borderline low, but I would like a bone marrow biopsy to ease my mind. Does anybody agree with the biopsy being done or am I just worrying too much?

Thanks a lot!


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



Celiac.com Sponsor (A8-M):



ravenwoodglass Mentor

If your doctors are not concerned you should try not to be either. Many things can cause enlarged lymph nodes and not all are dire. The inflammation from celiac can do it and it does take a very, very long time for them to go down. The spleen is I think a sort of filter and if the amount of increase was something to worry about the doctor should let you know. If you are really concerned make an appointment with your doctor to discuss it.

Looking for answers Contributor

I have enlarges lymph nodes in my neck that have been there for years. Most of my blood count comes back in on the low end as well, and sometimes low and out of range. I had a CT scan done on my neck for the lymph nodes, and results said they were not found to be malignant. For years I stirred about it, and sometime still do. However, I've seen several doctors and naturpaths that all say enlarged lymph nodes are completely "normal" for people with autoimmune issues and are nothing to be concerned about. So, basically, unless they suddenly balloon which would result in cause for concern, I just have to learn to live with them. :rolleyes:

SaraKat Contributor

I had enlarged axillary lymph nodes on the left side and that really scared me- that was before the celiac dx. I thought I had lymphoma. I guess it is from celiac, they have gone down, but they were a little over 2cm (there were 2 that were enlarged). I never had an issue with the spleen though.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,027
    • Most Online (within 30 mins)
      7,748

    EmmaGraceeee
    Newest Member
    EmmaGraceeee
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Scott Adams
      Your experience is both shocking and critically important for the community to hear, underscoring the terrifying reality that cross-contamination can extend into the most unexpected and invasive medical devices. It is absolutely devastating that you had to endure six months of sickness and ultimately sustain permanent vision loss because a doctor dismissed your legitimate, life-altering condition. Your relentless research and advocacy, from discovering the gluten in MMA acrylic to finding a compassionate prosthodontist, is a testament to your strength in a system that often fails celiac patients. While the scientific and medical consensus is that gluten cannot be absorbed through the skin or eyes (as the molecules are too large to pass through these barriers), your story highlights a terrifying gray area: what about a substance *permanently implanted inside the body*, where it could potentially shed microparticles or cause a localized immune reaction? Your powerful warning about acrylic lenses and the drastic difference with the silicone alternative is invaluable information. Thank you for sharing your harrowing journey and the specific, severe neurological symptoms you endure; it is a stark reminder that celiac is a systemic disease, and your advocacy is undoubtedly saving others from similar trauma.
    • Scott Adams
      Those are driving distance from me--I will try to check them out, thanks for sharing!
    • Scott Adams
      I am so sorry you're going through this bad experience--it's difficult when your own lived reality of cause and effect is dismissed by the very professionals meant to help you. You are absolutely right—your violent physical reactions are not "what you think," but undeniable data points, and it's a form of medical gaslighting to be told otherwise, especially when you have a positive HLA-DQ2 gene and a clear clinical picture. Since your current "celiac specialist" is not addressing the core issue or your related conditions like SIBO and chronic fatigue, it may be time for a strategic pivot. Instead of trying to "reprove" your celiac disease to unwilling ears, consider seeking out a new gastroenterologist or functional medicine doctor, and frame the conversation around managing the complications of a confirmed gluten-free diet for celiac disease. Go in and say, "I have celiac disease, am strictly gluten-free, but I am still suffering from these specific complications: SIBO, chronic fatigue, dermatological issues, and high blood pressure linked to pain. I need a partner to help me address these related conditions." This shifts the focus from a debate about your diagnosis to a collaborative plan for your current suffering, which is the help you truly need and deserve to work toward bouncing back.
    • NanCel
      Hello, no I had to have them re done and then used a liner over the top.  Many dentists are not aware of the celiac effects.  Best of luck.   There is other material, yet, very expensive.
    • sleuth
      He is not just a psychiatrist.  He is also a neuroscientist.  And yes, I have already read those studies.   I agree with benfotiamine.  This is short term while glutened/inflammation occurs.  As I had already mentioned, these symptoms no longer exist when this phase passes.  And yes, I know that celiac is a disease of malnutrition.  We are working with a naturopath.
×
×
  • 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.