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

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

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

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

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

Coleslawcat Contributor

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

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

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

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

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

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

have you tried seeing a holistic doctor?

flowerpower12 Rookie

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.

  • 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. - Mari replied to Jmartes71's topic in Coping with Celiac Disease
      2

      Related issues

    2. - MogwaiStripe replied to annamarie6655's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Airborne Gluten?

    3. - knitty kitty replied to Midwestern's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      16

      Gluten Issues and Vitamin D

    4. - knitty kitty replied to annamarie6655's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Airborne Gluten?


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,244
    • Most Online (within 30 mins)
      7,748

    tmperrella
    Newest Member
    tmperrella
    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

    • Mari
      Hi Jmartes, It sure is difficult to get useful advice from medical providers. Almost 20 years  ago a Dr suggested that I might have Celiacs and I took a Celiac Panel blood test. No gluten challenge diet. On that test the tTG was in normal range but an alpha antibody was very high. I went online and read about celiac disease and saw how I could investigate this low tTG and still have celiac disease. Normal tTG can happen when a person had been reacting for many years. Another way is that the person has not been eating enough gluten to raise the antibody level. Another reason is that the tTG does not show up on a blood but may show up on a fecal test. Almost all Celiacs inherit at least one of the 2 main Celiac genes. I had genetic tests for the Celiac genes at Enterolab.com. I inherited one main Celiac gene from one parent and the report said that the DQ gene I inherited from my other parent, DQ6, could cause a person to have more problems or symptoms with that combination. One of my grandmother's had fairly typical symptoms of Celiacs but the other grandmother had severe food intolerances. I seem to show some problems inherited from both grandmothers. Human physiology is very complex and researchers are just beginning to understand how different body systems interact.  If you have taken an autosomal DNA test you can download your raw data file and upload it to Prometheuw.com for a small fee and search for Celiac Disease. If you don't find any Cekiac genes or information about Celiac disease  you may not have autoimmune gluten intolerance because more than 99% of Celiacs have one or both of these genes.  PLEASE ASK QUESTIONS IF YOU WANT TO KNOW EHAT i HAVE DONE TO HELP WITH SYMPTOMS.  
    • MogwaiStripe
      I can't prove it, but I truly believe I have been glutened by airborne particles. I used to take care of shelter cats once per week at a pet store, and no matter how careful I was, I would get glutened each time even if I wore a mask and gloves and washed up well after I was done. I believe the problem was that because I'm short, I couldn't do the the tasks without getting my head and shoulders inside their cages, and so the particles from their food would be all over my hair and top of my shirt. Then I had to drive home, so even if I didn't get glutened right then, the particles would be in my car just waiting for me to get in the car so they could get blown into my face again. I gave up that volunteer gig and stopped getting glutened so often and at such regular intervals.
    • knitty kitty
      Hello, @MogwaiStripe, Vitamin D is turned into its activated forms by Thiamine.  Thiamine deficiency can affect Vitamin D activation. https://pubmed.ncbi.nlm.nih.gov/14913223/ Thiamine deficiency affects HLA genes.  HLA genes code for autoimmune diseases like Celiac, Thyroiditis, Diabetes, etc.  Thiamine deficiency inside a cell triggers a toggle switch on the gene which in turn activates autoimmune diseases carried on the gene.  The reference to the study is in my blog somewhere.  Click on my name to go to my page, scroll down to the drop down menu "Activities" and click on blogs.  
    • knitty kitty
      Hello, @annamarie6655, Yes, there's many of us who react to airborne gluten!   Yes, animal feed, whether for chickens or cats or dogs, can release airborne gluten.  I can get glutened from the bakery section at the grocery store.   The nose and mouth drain into the digestive system and can trigger systemic reactions.   I find the histamine release in response to airborne gluten will stuff up my sinuses and bother my eyes.  High histamine levels do cause anxiety and migraines.  The muscle spasms can be caused by high histamine, too.  The digestive system may not manifest symptoms without a higher level of gluten exposure.   Our bodies make an enzyme, DAO (diamine oxidase), to break down histamine.   Pyridoxine B 6, Cobalamine B12, Vitamin C, copper, zinc, and iron are needed to make DAO.  DAO supplements are available over the counter.  Taking a B Complex supplement and additional Thiamine in the form Benfotiamine or TTFD (tetrahydrofurfuryl disulfide) helps reduce the amount of histamine being released.  Mast cells without sufficient Thiamine have an itchy trigger finger and release histamine at the slightest provocation.  Thiamine helps mast cells refrain from releasing their histamine.    I find taking additional TTFD thiamine helps immensely with neurological symptoms as TTFD can easily cross the blood brain barrier without a carrier.  High histamine in the brain can cause the muscle spasms, anxiety and migraines.  Vitamin C really helps with clearing histamine, too.   The Digiorno pizza mystery reaction could have been caused by a reaction to the cheese.  Some people develop lactose intolerance.  Others react to Casein, the protein in dairy, the same as if to gluten because Casein resembles the molecular structure of gluten.  An enzyme used in some dairy products, microbial transglutaminase, causes a gluten reaction because it is the same as the tissue transglutaminase our bodies make except microbes make it.  Those tTg IgA blood tests to diagnose celiac disease measure tissue transglutaminase our bodies release as part of the autoimmune response to gluten.   You're doing great!  A Sherlock Holmes award to you for figuring out the connection between airborne gluten and animal feed!!!  
    • Scott Adams
      This article may be helpful:  
×
×
  • 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.