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

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But everything I was reading was at least four years out of date.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.

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

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





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - knitty kitty replied to Leslie Clark's topic in Gluten-Free Foods, Products, Shopping & Medications
      14

      Hidden Gluten in distilled vinegar

    2. - Manaan2 replied to Leslie Clark's topic in Gluten-Free Foods, Products, Shopping & Medications
      14

      Hidden Gluten in distilled vinegar

    3. - BIg Nodge replied to BIg Nodge's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      Opinions on my test results/symptoms

    4. - Dawn Meyers replied to Dawn Meyers's topic in Related Issues & Disorders
      16

      Vaccines

    5. - Scott Adams replied to Dawn Meyers's topic in Related Issues & Disorders
      16

      Vaccines


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      127,854
    • Most Online (within 30 mins)
      7,748

    Keithyboy
    Newest Member
    Keithyboy
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121k
    • Total Posts
      70.4k

  • Celiac.com Sponsor (A22):




  • Who's Online (See full list)


  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • knitty kitty
      @Manaan2, I was on Miralax for several months after I crushed three vertebrae and fractured my hip.  The compression fractures of my vertebrae affected the Vagus nerve that stimulates digestion and intestinal movement, peristalsis. Miralax just didn't relieve the constipation I was experiencing at all.  Nothing budged.  I tried Milk of Magnesia (magnesium oxide) which pulls water into the digestive tract, and found that rather harsh and dehydrating.   Bad idea. I was already taking thiamine in various forms, Benfotiamine, TTFD (tetrahydrofurfuryl  disulfude), Lipothiamine and Allithiamine.  Click on my name, then Activities in the pull down menu to get to my blog to learn more about my journey with thiamine.   Since we need more thiamine when we are physically ill and emotionally stressed, I decided to focus on TTFD,  Benfotiamine, and magnesium l-threonate.  Within a week of increasing my doses a bit, my constipation was gone.  It took several more months to heal the compressed nerve damage.  For pain, I take a combination of TTFD, Pyridoxine B 6, and  Cobalamine B12 which together have an analgesic effect.  I can't function with pharmaceutical pain killers, besides they cause constipation.   Mechanisms of action of vitamin B1 (thiamine), B6 (pyridoxine), and B12 (cobalamin) in pain: a narrative review https://pubmed.ncbi.nlm.nih.gov/35156556/ Yes, I did just stop the Miralax, but I wasn't on it as long as your daughter.  Yes, there's a difference between adults and children.  Yes, my circumstances were different than your daughter's, but thiamine deficiency does affect the nerves and the brain.  A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function (which activates the Vagus nerve and controls digestion).   I recommend you visit Dr. Chandler Marrs' website, hormonesmatter.com.  Dr. Marrs worked with Dr. Derrick Longsdale, a pioneer in thiamine research, specifically with children and autism spectrum disorders.  She has been very helpful to me when I reached out to her.  She would be better able to guide you about your daughter's care. https://hormonesmatter.com/sibo-ibs-constipation-thiamine-deficiency/#google_vignette Do stay in touch, please.  You can start another thread or personal message me any time.  My heart goes out to you, your husband, and especially your daughter.   Namaste
    • Manaan2
      @knitty kitty  The information you've provided is invaluable!  I have a lot more homework to do before we make the official switch but you have significantly increased my hope that we can get her off Miralax (she started at 3 years old and is almost 8!).  This weekend my husband and I plan to solidify all the details for a start point, then adjust as we go along.  I realize that everyone's body is different, then there's also the fact that she's a child but just out of curiosity if you don't mind sharing and if you'd rather not, no problem at all-how long did you take Miralax before switching and when you switched, did you just completely stop the Miralax or was there a period where you did Miralax and the supplements?  I plan to research that piece this weekend but just curious what you did.  
    • BIg Nodge
      Scott, thanks so much for the thoughtful replies. My doctor did actually just re-order thyroid labs to see what is going on with my TPOs. I agree that will be interesting information.  I think I know the answer to this, but as far as the biopsy . . .. that would be quite conclusive as far as celiac goes, but a negative result would not rule out NCGS, correct? Does NCGS also cause damage to the lower intestine/leaky gut?  I appreciate the thought that I should be open-minded to other causes. I did not have dysautonomia on my radar, so I will look into that. From a quick scan at the potential symptoms it seems like almost anyone could convince themselves they have it, very broad! I can see why that is a tricky one to diagnose. I did also show low vitamin D, I'm in New England so that is somewhat common. I have a memory of low iron on some lab result as well but I can't find it, so I'll look into that. My cholesterol is high too, so working on that.  While the initial adjustment was tough, I have actually adapted fairly well to going gluten-free at home. The tough part for me is I love eating out and traveling, so that has been a challenge. I suppose if the answer ends up being NCGS then I could maintain a mostly gluten-free diet but also experiment with the occasional splurges. Snowboarding just doesn't feel right without a beer in the lodge . . ... cider is just not the same!  Thanks again.  
    • Dawn Meyers
      I did some research and found out that vaccines put preservatives, sugar alcohols and metals in them. Which I have a intolerance too.  I was supposed to do testing to find out metal's I was allergic to because I can't  wear jewelry of any kind. Mayo felt I had other allergies also.
    • Scott Adams
      For individuals who have experienced negative reactions to the flu vaccine, there are alternative formulations that may reduce the risk of allergic responses. Traditional flu vaccines are typically produced using egg-based methods, which can pose issues for those with egg allergies. However, there are now several egg-free options available, such as cell-based and recombinant flu vaccines. Recombinant Vaccines (e.g., Flublok Quadrivalent): These are produced without the use of eggs and are grown in insect cells, making them a suitable option for individuals with egg allergies. Cell-Based Vaccines (e.g., Flucelvax Quadrivalent): These vaccines are also egg-free and are produced using mammalian cell cultures, which can be a safer alternative for those with egg allergies. Other Considerations: If you have had a reaction to a specific component of the flu vaccine (e.g., gelatin, preservatives, or antibiotics), discussing your medical history with a healthcare provider is crucial. They can help identify vaccines that exclude these ingredients. It's important to consult with an allergist or healthcare provider to determine the safest option based on your specific allergies and medical history. They can also provide guidance on pre-vaccination testing or desensitization protocols if necessary. Also, at @trents mentioned, could you be getting hidden gluten in your diet? Do you eat in restaurants? If so, this could be why you still have high gluten antibodies.
×
×
  • Create New...