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

Celiac From Mono?

flowerpower12

Recommended Posts

flowerpower12 Rookie
flowerpower12
Posted

Well, so I've always been a very healthy person..but around about November I started to go to bed earlier, and I noticed I didn't eat as much and had little appetite. I also lost about five lbs, and was constantly tired and just thought I was worn out. I went on vacation over Christmas and that's when it all really started. I came down with what I thought was just your average cold, until it didn't go away. I kept trying to tell my mom I didnt feel well but she insisted I go to school, that I was just in a weird phase. I then woke up one night with constant chills and then sweats, chills then I'd sweat. I went to school that morning, with a low fever of about 99 and then ended up going home early because I couldn't stand it anymore- I felt horrible. I went to a walk-in clinic, where the fever was then at 102 degrees, and I was diagnosed with a small case of tonsilitis. Then I went back and forth between doctors and emergency rooms, because we couldn't figure out what was going on. Turns out it wasn't tonsilitis. I've had literally every symptom you could possibly imagine-diarrhea, constipation, nausea, vomiting, high fevers, low fevers, body aches, sore throat, headaches, stomach aches, loss of appetite, dehydration, side aches(around my liver and kidneys), enlarged spleen, dizziness, fatigue, hallucinations, the whole nine yards. Eventually I was diagnosed with mono and ended up in the hospital because I lost so much weight and was extremely dehydrated. They still do not know why I lost as much weight as I did..I was 93 lbs(I'm usually about 112). I have managed to gain some of the weight back since being discharged from the hospital but not all of it. Since then I have been extremely sick, and feel worse after I eat..my stomach will cramp up often and I will randomly get sharp pains for no reason. It will feel sour and acidic at times and gets to the point of bringing me to tears it hurts so much. If I go for awhile without eating I feel OK and my stomach doesn't seem to act up as much and is just a straight dead line for awhile but its only a matter of time before I need to eat again(I've learned to force myself to or else I don't and it will just make me even more sick in the end) and I end up feeling the same way- I go from feeling anywhere from nauseous to cramped, bloated or sour. I get gas as well...basically I just really don't want to eat..I know that a lot of people have said that after having mono they haven't felt the same. So I guess my question is, does it sound like Celiac? Or is it just a bad case of mono? This has been going on for months now and I'm beginning to get worried as I have been diagnosed with mono for 8 weeks and I should have started to feel better awhile ago but I still don't feel right.

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

Celiac.com Sponsor (A8-M):


ravenwoodglass Mentor
ravenwoodglass
Posted

I so sorry you have been so sick for so long. It's hard. I would ask your doctor to run a celiac panel as a first step. Mono can be a trigger illness with celiac, as can other illnesses and stressors. It can take a long time to resolve but a lot of what you are describing sounds IMHO like it may be celiac related.

flowerpower12 Rookie
flowerpower12
Posted
  • Author

I so sorry you have been so sick for so long. It's hard. I would ask your doctor to run a celiac panel as a first step. Mono can be a trigger illness with celiac, as can other illnesses and stressors. It can take a long time to resolve but a lot of what you are describing sounds IMHO like it may be celiac related.

Thank you..

this makes me feel better like im not just imagining it all or anything..

flowerpower12 Rookie
flowerpower12
Posted
  • Author

so it is possible that the mono could have triggered Celiac?

Coleslawcat Contributor
Coleslawcat
Posted

so it is possible that the mono could have triggered Celiac?

Yes it is. I am fairly certain my celiac was triggered by mono. I developed mono when I was 21 and had 2 years of illness that followed and was never diagnosed. The doctors were considered lupus, chronic fatigue syndrome, fibromyalgia among other options. They never even mentioned celiac. Eventually, I was starting to feel somewhat better and just gave up on all the testing. Now, 10 years later, I got my celiac diagnosis. I didn't even realize I was still sick when I was diagnosed, but looking back it is clear to me that mono was the trigger.

I hope you get answers soon and start to feel better.

flowerpower12 Rookie
flowerpower12
Posted
  • Author

Yes it is. I am fairly certain my celiac was triggered by mono. I developed mono when I was 21 and had 2 years of illness that followed and was never diagnosed. The doctors were considered lupus, chronic fatigue syndrome, fibromyalgia among other options. They never even mentioned celiac. Eventually, I was starting to feel somewhat better and just gave up on all the testing. Now, 10 years later, I got my celiac diagnosis. I didn't even realize I was still sick when I was diagnosed, but looking back it is clear to me that mono was the trigger.

I hope you get answers soon and start to feel better.

thank you.

funny that you mention fybromialgia because my doctor was talking about that the other day...my mom seems to think all my stomach problems are just mono but I'm starting to really wonder if it is Celiac or not...

It really does not feel like Mono anymore. Seems to me more like something else is really going on with me.

Painted Newbie
Painted
Posted

That sounds horrible!! Ugh!

Can Mono really trigger celiac? I seriously just had Mono myself last semester. I was feeling like I was finially over Mono, but I just wasn't getting better. I was just not feeling as good as I was before... tired and achy, and all sorts of stomach problems. Then I went on a gluten free diet - 3 weeks later I feel better then ever!

I hope you figure out what's wrong and get better!

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

Celiac.com Sponsor (A8-M):


luvs2eat Collaborator
luvs2eat
Posted

There was a thread on here a few years back asking people to tell what their "trigger" was. There were lots of triggers, but if I remember correctly, a good case of mono was the overwhelming response.

jerseyangel Proficient
jerseyangel
Posted

There was a thread on here a few years back asking people to tell what their "trigger" was. There were lots of triggers, but if I remember correctly, a good case of mono was the overwhelming response.

Yes, I remember that too. Seems it's quite a common trigger.

flowerpower12 Rookie
flowerpower12
Posted
  • Author

Yes I had some ramen noodles last night and not even an hour after I ate them my left side was cramping up and I felt horrible, I really hope I get some answers soon.

This is getting very old.

Brien Rookie
Brien
Posted

have you tried seeing a holistic doctor?

flowerpower12 Rookie
flowerpower12
Posted
  • Author

No?

This isn't a mental issue..

there is definitely something going on with my health.

Archived

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

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. lizzie42
      - lizzie42 posted a topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      0

      Low iron and vitamin d

      Hi, I posted before about my son's legs shaking after gluten. I did end up starting him on vit b and happily he actually started sleeping better and longer. Back to my 4 year old. She had gone back to meltdowns, early wakes, and exhaustion. We tested everything again and her ferritin was lowish again (16) and vit d was low. After a couple weeks...
    2. Scott Adams
      - Scott Adams replied to Atl222's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      3

      Increased intraepithelial lymphocytes after 10 yrs gluten-free

      Celiac disease is the most likely cause, but here are articles about the other possible causes:
    3. Scott Adams
      0

      Celiac Disease and Longevity: Can Treatment and Healing Improve Long-Term Survival?

    4. xxnonamexx
      - xxnonamexx posted a topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      0

      FDA looking for input on Celiac Gluten sensitivity labeling PLEASE READ and submit your suggestions

      Please read: https://www.fda.gov/news-events/press-announcements/fda-takes-steps-improve-gluten-ingredient-disclosure-foods?fbclid=IwY2xjawPeXhJleHRuA2FlbQIxMABicmlkETFzaDc3NWRaYzlJOFJ4R0Fic3J0YwZhcHBfaWQQMjIyMDM5MTc4ODIwMDg5MgABHrwuSsw8Be7VNGOrKKWFVbrjmf59SGht05nIALwnjQ0DoGkDDK1doRBDzeeX_aem_GZcRcbhisMTyFUp3YMUU9Q
    5. cristiana
      - cristiana replied to Atl222's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      3

      Increased intraepithelial lymphocytes after 10 yrs gluten-free

      Hi @Atl222 As @trents points out, there could be many reasons for this biopsy result. I am interested to know, is your gastroenterologist concerned? Also, are your blood tests showing steady improvement over the years? I remember when I had my last biopsy, several years after diagnosis, mine came back with with raised lymphocytes but no villous...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,208
    • Most Online (within 30 mins)
      7,748
    Mike Maurillo
    Newest Member
    Mike Maurillo
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • lizzie42
      Low iron and vitamin d

      By lizzie42 · Posted

      Hi, I posted before about my son's legs shaking after gluten. I did end up starting him on vit b and happily he actually started sleeping better and longer.  Back to my 4 year old. She had gone back to meltdowns, early wakes, and exhaustion. We tested everything again and her ferritin was lowish again (16) and vit d was low. After a couple weeks on supplements she is cheerful, sleeping better and looks better. The red rimmed eyes and dark circles are much better.   AND her Ttg was a 3!!!!!! So, we are crushing the gluten-free diet which is great. But WHY are her iron and vit d low if she's not getting any gluten????  She's on 30mg of iron per day and also a multivitamin and vit d supplement (per her dr). That helped her feel better quickly. But will she need supplements her whole life?? Or is there some other reason she's not absorbing iron? We eat very healthy with minimal processed food. Beef maybe 1x per week but plenty of other protein including eggs daily.  She also says her tummy hurts every single morning. That was before the iron (do not likely a side effect). Is that common with celiac? 
    • Scott Adams
      Increased intraepithelial lymphocytes after 10 yrs gluten-free

      By Scott Adams · Posted

      Celiac disease is the most likely cause, but here are articles about the other possible causes:    
    • xxnonamexx
      FDA looking for input on Celiac Gluten sensitivity labeling PLEASE READ and submit your suggestions

      By xxnonamexx · Posted

      Please read: https://www.fda.gov/news-events/press-announcements/fda-takes-steps-improve-gluten-ingredient-disclosure-foods?fbclid=IwY2xjawPeXhJleHRuA2FlbQIxMABicmlkETFzaDc3NWRaYzlJOFJ4R0Fic3J0YwZhcHBfaWQQMjIyMDM5MTc4ODIwMDg5MgABHrwuSsw8Be7VNGOrKKWFVbrjmf59SGht05nIALwnjQ0DoGkDDK1doRBDzeeX_aem_GZcRcbhisMTyFUp3YMUU9Q
    • cristiana
      Increased intraepithelial lymphocytes after 10 yrs gluten-free

      By cristiana · Posted

      Hi @Atl222 As @trents points out, there could be many reasons for this biopsy result.  I am interested to know, is your gastroenterologist concerned?  Also, are your blood tests showing steady improvement over the years? I remember when I had my last biopsy, several years after diagnosis, mine came back with with raised lymphocytes but no villous damage, too! In my own case, my consultant wasn't remotely concerned - in fact, he said I might still get this result even if all I ever did was eat nothing but rice and water.   My coeliac blood tests were still steadily improving, albeit slowly, which was reassuring.
    • trents
      Increased intraepithelial lymphocytes after 10 yrs gluten-free

      By trents · Posted

      Welcome to the celiac.com community, @Atl222! Yes, your increased lymphocytes could be in response to oats or it could possibly be cross contamination from gluten that is getting into your diet from some unexpected source but not enough to damage the villi. And I'm certain that increased lymphocytes can be caused by other things besides celiac disease or gluten/oats exposure. See attachment. But you might try eliminating oats to start with and possibly dairy for a few months and then seek another endoscopy/biopsy to see if there was a reduction in lymphocyte counts. 
×
×
  • 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.