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

Resurrecting The Celiac-Mono-Fatigue Connection


AlwaysLearning

Recommended Posts

AlwaysLearning Collaborator

Does anyone out there have any understanding of the connections between celiac and mononucleosis, interleukin 15, and long lasting symptoms of mono (Chronic Fatigue Syndrome) amongst celiacs?

 

I was doing a ton of reading last night that led me to believe that mono is a common trigger for activating the genes that celiacs may have had previously, but hadn't been turned on - therefore activating their celiac disease. And that once activated, interleukin 15 is the molecule that celiacs overproduce which tells the T cells to go on the attack against gluten peptides, and that this molecule also has a connection to mono.

But everything I was reading was at least four years out of date. Has the science gotten any better? Have I oversimplified the scientific language I was reading last night? Did I misunderstand something?

And for as many people as are mentioning fatigue as a symptom even after they've gone gluten free, should they be looking into Chronic Fatigue Syndrome in addition to celiac and blame the Epstein Barr Virus instead of gluten for some of their symptoms?

Curious minds want to know.


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



Celiac.com Sponsor (A8-M):



nvsmom Community Regular

I know there is a connection but that's all I really learned. I had celiac symptoms 15 years before I had mono, and after having mono I was in a fairly symptom free time of my life so I am pretty sure it didn't kick it off for me... But that is just me.

 

I know it is connected to SLE as well.

1desperateladysaved Proficient

I believe I had symptoms early, such as I lost the enamel off my teeth, but it was after a bout of mono there were undeniable symptoms.  I noticed bloating, fatigue, and sensitivity to perfumes and cigarette smoke.  I am currently thinking that the celiac brought on the stress that allowed the mono to devastate me.  I guess I may never really know for sure.  Incase you are curious, I have 2 DQ2 and  2 DQ8 genes which means I got the genes from both sides of the family. 

BeccaMeadows Newbie

Hmm... never heard of mono leading to celiac disease, although I got mono in grade 10 and was laster diagnosed with celiacs in grade 12 after years of symptoms.  Have heard of mono leading to type 1 diabetes though, and there is a connection between diabetes and celiac diease. 

 

Can rationalize though that it would be a lot harder to recover from mono if someone with celiac was eating gluten, or eating gluten would lead to mono especially if exposed to the virus, even if years prior to. 

GottaSki Mentor

One of my sons had a six month serious autimmune symptom flare ... this was before our dx ... interesting thing was when he was finally feeling better docs tested him for mono....they could determine he had had mono but not when.

Sorry I have no recent research into the connection.

mommy2krj Explorer

I have nothing to share that points in any direction but find it interesting as my friend who passed away had mono when we were teenagers and ended up having Crohn's and Ulcerative Colitis (and probably Celiac though she was never tested for it!) in her adult years.

 

I find the connection interesting and wish they would pursue it further.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,035
    • Most Online (within 30 mins)
      7,748

    bostonbell
    Newest Member
    bostonbell
    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

    • Jmartes71
      Thankyou so much for your words.Its a hard battle when a supposed well known hospital whose celiac " specialist " has down played me because my colon looks fine and put it in my medical and so pcp doesn't take seriously. In their eyes we all carry that gene.Im having alot of bad days trying to be positive because of it.
    • 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.
×
×
  • 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.