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

Can Mono Trigger Celiac Disease?


Kelevandras

Recommended Posts

Kelevandras Newbie

Hello,

I had Mono 5 years ago and it seems that I just never got better. Two years ago I was diagnosed with Hypothyroidism and last month I was diagnosed with Celiacs. IGG and IGA like a hundred more than normal. Before Mono I had tons of energy, could eat anything without ill effect, no pains, just enjoying life. So I am wondering if perhaps the mono triggered the celiacs? Does anyone have a similar experience or have info reguarding this suspiscion? Any insight would be great!!!


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



Celiac.com Sponsor (A8-M):



jerseyangel Proficient

Hello,

I had Mono 5 years ago and it seems that I just never got better. Two years ago I was diagnosed with Hypothyroidism and last month I was diagnosed with Celiacs. IGG and IGA like a hundred more than normal. Before Mono I had tons of energy, could eat anything without ill effect, no pains, just enjoying life. So I am wondering if perhaps the mono triggered the celiacs? Does anyone have a similar experience or have info reguarding this suspiscion? Any insight would be great!!!

Hi and welcome.

Mono can definitely trigger Celiac--I've seen many here over the years who feel that their symptoms began after a bout.

Mine kicked into high gear after a bad case of influenza.

Kelevandras Newbie

Hi and thanks! Are there studies out there? It would be interesting to see how often that occurs.If that is the case then why don't doctors check for those things in the first place if they have a good case history?

I had to literally doctor hop to figure out what the heck was wrong with me after Mono. I knew it was time to find a new doc when they asked "are you depressed?" ( I got that one twice), until I finally got my answers. I have the feeling that I would not be out of place here to say that " Wow most doctors suck."

Skylark Collaborator

Mine kicked into high gear after a bad case of influenza.

Wow - mine too! I had gluten issues all along, including a childhood wheat allergy, but a severe flu where I ran a fever for days was the start of all my depression and fatigue that has since resolved gluten-free.

Mono can trigger celiac. There are a couple old case studies in the medical literature but you would have to go looking for them. So can Campylobacter food poisoning.

mushroom Proficient

Mono triggered both celiac and CFS in my niece.

Bottom line, doctors cannot solve the celiac jigsaw puzzle. Maybe we are better at it because we see the picture on the front of the box - all they see is unrelated (to them) pieces.

shopgirl Contributor

Definitely. I've traced my symptoms back to an interminable bout of bronchitis I had my freshman year of college

  • 10 months later...
Februaryrich Rookie

Mono triggered gluten/dairy intolerance here!


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



Celiac.com Sponsor (A8-M):



Duhlina Apprentice

Huh. Funny you mention this. I had never put it together, but now that I think about it I think it may have been the trigger for me too. I've always had celiac symptoms, right back to the 7th grade, but about 2-3 years ago I was so exhausted I was falling asleep at red lights. I had all kinds of tests run and the doctor said I had "recurring mono" (hubby did too at the same time)....but I had never had mono before! After that bout of mono, I just never felt like I fully recovered 100%.

Februaryrich Rookie

Huh. Funny you mention this. I had never put it together, but now that I think about it I think it may have been the trigger for me too. I've always had celiac symptoms, right back to the 7th grade, but about 2-3 years ago I was so exhausted I was falling asleep at red lights. I had all kinds of tests run and the doctor said I had "recurring mono" (hubby did too at the same time)....but I had never had mono before! After that bout of mono, I just never felt like I fully recovered 100%.

Are you a diagnosed celiac?

ElseB Contributor

Any kind of severe physical or emotional stress can trigger it. In my case it was C.Difficile.

Myou Newbie

Add another ex-Mono Celiac to the list, here. Just like you, I got Mono in my teens...and I was devastated when it just "never went away." In fact, it only seemed to get worse. However, because the symptoms were so "atypical" (manifesting as joint pain, muscle wasting, fatigue, rapid weight loss), I wasn't diagnosed with Celiac Disease for another ten years, once all those sexy bowel issues became more than I could handle.

Mononucleosis really is one of those socially underrated, yet extremely powerful childhood diseases, and I can certainly see why there is keen suspicion of a link between that kind of overwhelming immune system disruption, and the triggering of autoimmune diseases.

Februaryrich Rookie

Add another ex-Mono Celiac to the list, here. Just like you, I got Mono in my teens...and I was devastated when it just "never went away." In fact, it only seemed to get worse. However, because the symptoms were so "atypical" (manifesting as joint pain, muscle wasting, fatigue, rapid weight loss), I wasn't diagnosed with Celiac Disease for another ten years, once all those sexy bowel issues became more than I could handle.

Mononucleosis really is one of those socially underrated, yet extremely powerful childhood diseases, and I can certainly see why there is keen suspicion of a link between that kind of overwhelming immune system disruption, and the triggering of autoimmune diseases.

My story is similar to yours, minus 9 years. Did you not have bowel issues for like 10 years? I don't quite understand. May I ask if you gained the lost weight back?

Myou Newbie

My story is similar to yours, minus 9 years. Did you not have bowel issues for like 10 years? I don't quite understand. May I ask if you gained the lost weight back?

I apologize for not being very clear, Februaryrich. I'll try to better explain. :D

When my symptoms first began, they started up right after a particularly bad bout of Mono. Suddenly, an active 15 year old was swept up in a storm of joint pain and weakness, which were my main symptoms for about three years. I went to many doctors with these symptoms, but they were unconvinced due to how vague my complaints seemed. However, at about the three-year-mark, I do recall noticing some stomach problems when eating certain foods, but I couldn't make the connection. I had some cramping and some occasional diarrhea, but I don't think I thought it was relevant. It probably didn't help that I was also a pretty shy teenager, who wouldn't find it very "polite" to speak of such "indignities." :rolleyes: (Happily, I don't have that problem anymore.)

At about that same time, I began losing a lot of weight. People (and GPs) started to suspect I was anorexic. Yet, my main complaints were still very vague, and easily dismissed by any physician I visited.

Four years in, things got...weird. I was having rashes, fevers, joint swelling, and terrible headaches. My eyelids were puffy, my fingers and toes were turning blue in mildly chilly weather. My mouth was full of sores, and I slept 12 hours a day without any release from exhaustion. "All your blood tests are fine," I was told. I just needed to live with it (since it was obviously a psychological problem, dontchya know), and, well, I suppose I kinda did, floating around miserably for years in this medical limbo. If things got bad, or a new symptom popped up on my ever-growing laundry list of problems (like once I developed fainting and arrhythmia), I went to see a new doc. They still couldn't help me, even the well meaning ones.

Yet, despite all that, it wasn't until about 8 years into this whole ordeal that my intestines just finally...couldn't take it anymore. It seemed like over night I was suddenly having stomach issues. Again, I visited doctors who found this newest problem more troubling, but durnit, NO MEDICAL PROFESSIONAL I SAW HERE COULD PIECE THIS MONSTER TOGETHER! Over the next two years, it got so bad that I was afraid to leave the house for fear of not being near a bathroom.

Out of desperation, I began some intense research, and stumbled upon the topic of Celiac Disease online. I brought this up to my doctor at the time, who hadn't even considered it an option. We did an elimination diet test, and my life changed forever. (Even if it was a rough road at first.)

I did gradually gain the weight back, and now hover in the low-normal range for my height. Which, believe me, is a great improvement.

I'm coming up to a full year now on my gluten free life change, and I can happily say that about 90% of my original problems are completely gone! However, I have a lot of healing to do, I am told, and am still recovering from a lot of damage.

Duhlina Apprentice

Are you a diagnosed celiac?

I tested low positive on the blood test and I am going for an endoscopy on Monday to confirm. So yes, I believe I'm a diagnosed celiac.

  • 5 months later...
Mandylea12 Newbie

WOW ....after reading all the posts here I think I may know whats wrong with my mother! We have been trying to find a diagnosis for her since August of 2011. She started rapidly losing weight(50 lbs total), would NOT eat, extreme fatigue, fibromyalgia, depression, and deficiencies in every vitamin with anemia! She ended up having a feeding tube and still to this day cannot eat but every few days. She is slowly getting better but the only thing she EVER tested positive for is the antibodies for mono. Not until I recently got diagnosed with a wheat intolerance did I think she could have celiac disease, because of the high hereditary rate. I stated researching and stumbled upon this blog. Thanks for the info. She sees Mayo Clinic docs so maybe they will help me understand all this.

Mom-of-Two Contributor

Yes!!

I didn't have mono but a ruptured appendix with a 7 day ICU stay due to sepsis five years ago-- had to undergo open abdominal surgery and a difficult recovery. I also feel the extended antibiotics due to all of that contributed to gut issues. I of course had the IV medsin hospital but at least 4 weeks of antibiotics beyond that.

I fully believe stress, illness, or any trauma to the body can bring celiac and other autoimmune issues to life.

mushroom Proficient

It did for my niece.

BabsV Enthusiast

Mine seemed to trigger after a particularly nasty virus -- thought it was just a stomach flu at the time but it laid me out for days. Three weeks later the slippery slope of symptoms began. I think I was lucky to be diagnosed in less than a year. I was fine up until I caught that virus.

  • 4 weeks later...
CeliacAndCfsCrusader Apprentice

Add me to the list, but it wasn't Mono, I was diagnosed with Chronic Fatigue Syndrom. I have family in the medical field and no amount of guidance/suggestions would lead me to Celiac until 20 years later (after a car accident which I thought gave me "peripheral neuropathy....low and behold it's Celiac).

I adjusted my lifestyle after being diagnosed with CFS and got mostly better, but never "right". Exertion of any kind would fatigue me.

So, the good news is that being off of gluten has eliminated the physical symptoms of CFS. The bad news is that the car accident replaced them with other symptoms. :-)

Why the smiley? There's hope for car accident recovery and little hope for CFS (....CFS, like any other serious health issue, made be a better,, more understanding person and I'm grateful for that).

Silver linings, we all end up looking for them or creating them if we can't find them. Onward!

hexon Rookie

I believe my gluten intolerance was triggered after C. diff. At the time I was tested for celiac because of the stomach pain and D, not thinking that C. diff would've been the dx in a healthy 20 year old not on antibiotics. It came back negative. My last doctors appointment in November was negative for recurrent C. diff and I didn't think to get retested for celiac. Oh well, guess I'll never know unless they come up with a new test. It's intriguing to see everyone else's' experiences.

pricklypear1971 Community Regular

Mono has been mentioned many times in my readings over the years as an autoimmune trigger.

Try googling "autoimmune trigger" and see what you come up with.

I had a great sheet about endometriosis and autoimmune diseases that I can't find. But it was a great listing of triggers.

aliceintown Newbie

That's really interesting, I had glandular fever (i.e. mono) for a couple of years before I found out I was celiac. Never told once by a doctor though. :rolleyes:

  • 1 year later...
CJCarter Newbie

Wow! I just google searched this and can't believe how many other people this is frustrating for. I can't believe the medical community hasn't put these things together yet!

 

I had mono 10 years ago and ever since then, certain things have just never been right with my body. Nothing too serious, my whole family is in the medical field so I don't actually like to bother doctors with small symptoms. I guess over the years I just started to accept things as normal. Well this time I think my body has reached its apex. I am not diagnosed with Celiacs but I am almost 100% positive I have a gluten sensitivity after reading all of this.

I had blood work done because I didn't know what was wrong with me. I suspected either, thyroid, anemia or CFS. Since all my blood tests for thyroid were in the "normal" range they aren't looking at that further. The only things that were weird on my blood work was low iron, low B12 and low Vit D. The iron I was attributing to my heavy menstrual cycle, that has always been the case. But the Vit D and B12 made me think wait! B12 deficiency is usually seen in the elderly because of malabsoprtion. So why am I, a 27 year old have B12 deficiency?! After talking to a friend with Fibro and she told me about going gluten-free and how its helped her I started researching. Gluten intolerance can cause absorption problems with all those same nutrients as well as have the same symptoms as celiacs!  Why do I have to figure all these things out!!

 

Anyways, I am only just beginning my gluten-free journey, like today! So we will see if my suspicions are correct, but I have a feeling after everything I have seen it will be a big improvement in my CFS/fatigue symptoms. 

 

Thanks everyone for contributing!

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,963
    • Most Online (within 30 mins)
      7,748

    AlissaW
    Newest Member
    AlissaW
    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
      If black seed oil is working for his Afib, stick to it, but if not, I can say that ablation therapy is no big deal--my mother was out of the procedure in about 1 hour and went home that evening, and had zero negative effects from the treatment. PS - I would recommend that your husband get an Apple watch to monitor his Afib--there is an app and it will take readings 24/7 and give reports on how much of the time he's in it. Actual data like this should be what should guide his treatment.
    • Jacki Espo
      This happened to me as well. What’s weirder is that within a couple hours of taking paxlovid it subsided. I thought maybe I got glutened but after reading your post not so sure. 
    • Mari
      Hi Tiffany. Thank you for writing your dituation and  circumstancesin such detail and so well writte, too. I particularly noticed what you wrote about brain for and feeling like your brain is swelling and I know from my own experiences that's how it feel and your brain really does swell and you get migraines.    Way back when I was in my 20s I read a book by 2 MD allergist and they described their patient who came in complaining that her brain, inside her cranium, was swelling  and it happened when she smelled a certain chemical she used in her home. She kept coming back and insisting her brain actually swelled in her head. The Drs couldn't explain this problem so they, with her permission, performed an operation where they made a small opening through her cranium, exposed her to the chemical then watched as she brain did swell into the opening. The DRs were amazed but then were able to advise her to avoid chemicals that made her brain swell. I remember that because I occasionally had brain fog then but it was not a serious problem. I also realized that I was becoming more sensitive to chemicals I used in my work in medical laboratories. By my mid forties the brain fog and chemicals forced me to leave my  profession and move to a rural area with little pollution. I did not have migraines. I was told a little later that I had a more porous blood brain barrier than other people. Chemicals in the air would go up into my sinused and leak through the blood brain barrier into my brain. We have 2 arteries  in our neck that carry blood with the nutrients and oxygen into the brain. To remove the fluids and used blood from the brain there are only capillaries and no large veins to carry it away so all those fluids ooze out much more slowly than they came in and since the small capillaries can't take care of extra fluid it results in swelling in the face, especially around the eyes. My blood flow into my brain is different from most other people as I have an arterial ischema, adefectiveartery on one side.   I have to go forward about 20 or more years when I learned that I had glaucoma, an eye problem that causes blindness and more years until I learned I had celiac disease.  The eye Dr described my glaucoma as a very slow loss of vision that I wouldn't  notice until had noticeable loss of sight.  I could have my eye pressure checked regularly or it would be best to have the cataracts removed from both eyes. I kept putting off the surgery then just overnight lost most of the vision in my left eye. I thought at the I had been exposed to some chemical and found out a little later the person who livedbehind me was using some chemicals to build kayaks in a shed behind my house. I did not realize the signifance  of this until I started having appointments with a Dr. in a new building. New buildings give me brain fog, loss of balance and other problems I know about this time I experienced visual disturbances very similar to those experienced by people with migraines. I looked further online and read that people with glaucoma can suffer rapid loss of sight if they have silent migraines (no headache). The remedy for migraines is to identify and avoid the triggers. I already know most of my triggers - aromatic chemicals, some cleaning materials, gasoline and exhaust and mold toxins. I am very careful about using cleaning agents using mostly borax and baking powder. Anything that has any fragrance or smell I avoid. There is one brand of dishwashing detergent that I can use and several brands of  scouring powder. I hope you find some of this helpful and useful. I have not seen any evidence that Celiac Disease is involved with migraines or glaucoma. Please come back if you have questions or if what I wrote doesn't make senseto you. We sometimes haveto learn by experience and finding out why we have some problems. Take care.       The report did not mention migraines. 
    • Mari
      Hi Jmartes71 That is so much like my story! You probably know where Laytonville is and that's where I was living just before my 60th birthday when the new Dr. suggested I could have Celiacs. I didn't go on a gluten challange diet before having the Celiac panel blood test drawn. The results came back as equivical as one antibody level was very high but another, tissue transaminasewas normal. Itdid show I was  allergic to cows milk and I think hot peppers. I immediately went gluten free but did not go in for an endoscopy. I found an online lab online that would do the test to show if I had a main celiac gene (enterolab.com). The report came back that I had inherited a main celiac gene, DQ8, from one parent and a D!6 from the other parent. That combination is knows to sym[tons of celiac worse than just inheriting one main celiac gene. With my version of celiac disease I was mostly constipated but after going gluten-free I would have diarrhea the few times I was glutened either by cross contamination or eating some food containing gluten. I have stayed gluten-free for almost 20 years now and knew within a few days that it was right for me although my recovery has been slow.   When I go to see a  medical provide and tell them I have celiacs they don't believe me. The same when I tell them that I carry a main celiac gene, the DQ8. It is only when I tell them that I get diarrhea after eating gluten that they realize that I might have celiac disease. Then they will order th Vitamin B12 and D3 that I need to monitor as my B12 levels can go down very fast if I'm not taking enough of it. Medical providers haven't been much help in my recovery. They are not well trained in this problem. I really hope this helps ypu. Take care.      
    • knitty kitty
×
×
  • 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.