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. - knitty kitty replied to Jmartes71's topic in Related Issues & Disorders
      1

      New issue

    2. - knitty kitty replied to GlutenFreeChef's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      6

      Blood Test for Celiac wheat type matters?

    3. - trents replied to Charlie1946's topic in Related Issues & Disorders
      38

      Severe severe mouth pain

    4. - knitty kitty replied to Charlie1946's topic in Related Issues & Disorders
      38

      Severe severe mouth pain

    5. - Caligirl57 replied to Charlie1946's topic in Related Issues & Disorders
      38

      Severe severe mouth pain

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,084
    • Most Online (within 30 mins)
      7,748

    BlueIcyRose
    Newest Member
    BlueIcyRose
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • knitty kitty
      @Jmartes71, Sorry you've been feeling so poorly.   Are you taking any medication to treat the SIBO?   Are you taking any Benfotiamine?  Benfotiamine will help get control of the SIBO.  Thiamine deficiency has symptoms in common with MS. Have you had your gas appliances checked for gas leaks and exhaust fume leaks?  Carbon Monoxide poisoning can cause the same symptoms as the flu and glutening.  Doctors have to check venous blood (not arterial) for carbon monoxide.  Are other inhabitants sick, or just you?  Do they leave the house and get fresh air which relieves their symptoms?  
    • knitty kitty
      European wheat is often a "soft wheat" variety which contains less gluten than "hard wheat" varieties found in the States.   In European countries, different cooking methods and longer  fermentation (rising or proofing) times allow for further breakdown of gluten peptides. Wheat in the States is a blend of hard and soft wheat.  Gluten content can vary according to where the wheat was grown, growing conditions, when harvested, and local preference, so a blend of both hard and soft wheat is used to make a uniform product.   I moved around quite a bit as a child in a military family.  I had different reactions to gluten in different areas of the country every time we moved.  I believe some wheat breeds and blends are able to provoke a worse immune response than others.   Since European soft wheat doesn't contain as much gluten as American wheat, you may try increasing your intake of your soft wheat products.  A minimum of ten grams of gluten is required to get a sufficient immunological response so that the anti-gluten antibodies leave the intestines and enter the bloodstream where they can be measured by the tTg IgA test.  Your whole wheat bread may only have a gram of gluten per slice, so be prepared...  
    • trents
      From my own experience and that of others who have tried to discontinue PPI use, I think your taper down plan is much too aggressive. It took me months of very incremental tapering to get to the point where I felt I was succeeding and even then I had to rely some days on TUMS to squelch flareups. After about a year I felt I had finally won the battle. Rebound is real. If I were you I would aim at cutting back in weekly increments for two weeks at a time rather than daily increments. So, for instance, if you have been taking 2x20mg per day, the first week cut that down to 2x20mg for six days and 1x20 mg for the other day. Do that for two weeks and then cut down to 2x20mg for five days and 1x20 for two days. On the third week, go 20x2 for four days and 20x1 for 3 days. Give yourself a week to adjust for the reduced dosage rather than reducing it more each week. I hope this makes sense. 
    • knitty kitty
      Talk to your doctor about switching to an antihistamine, and supplementing essential vitamins and minerals.  Dietary changes (low carb/paleo) may be beneficial for you.  Have you talked to a dietician or nutritionist about a nutrient dense gluten free diet?   It's harder to get all the vitamins needed from a gluten free diet.  Gluten containing products are required to be enriched or fortified with vitamins and minerals lost in processing.  Gluten free facsimile processed foods are not required to be enriched nor fortified.  So we have to buy our own vitamin supplements.   Glad to be of help.  Keep us posted on your progress!
    • Caligirl57
      I’m pretty sure they do. I have been on myfortic, tacrolimus since 2021 for my liver transplant and added prednisone after kidney transplant.  I’m going to try to cut back omeprazole to 20 mg a day and then after a week try to stop altogether. Thank you for your help.
×
×
  • 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.