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
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,394
    • Most Online (within 30 mins)
      7,748
    Graceland.h
    Newest Member
    Graceland.h
    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
      Coeliac UK Research Conference 2025

      By Scott Adams · Posted

      Thanks for sharing this!
    • Scott Adams
      Shingles - Could It Be Related to Gluten/ Celiac

      By Scott Adams · Posted

      I had the same thing happen to me at around your age, and to this day it's the most painful experience I've ever had. For me it was the right side of my head, above my ear, running from my nerves in my neck. For years before my outbreak I felt a tingling sensation shooting along the exact nerves that ended up exactly where the shingles blisters appeared. I highly recommend the two shot shingles vaccine as soon as your turn 50--I did this because I started to get the same tingling sensations in the same area, and after the vaccines I've never felt that again.  As you likely know, shingles is caused by chicken pox, which was once though of as one of those harmless childhood viruses that everyone should catch in the wild--little did they know that it can stay in your nervous system for your entire life, and cause major issues as you age.
    • trents
      Blood tests low iGA 4 years later digestive issues

      By trents · Posted

      Keep us posted.
    • Clear2me
      Gluten free nuts

      By Clear2me · Posted

      Thanks for the info. I recently moved to CA from Wyoming and in that western region the Costco and Sam's /Walmart Brands have many nuts and more products that are labeled gluten free. I was told it's because those products are packaged and processed  in different  plants. Some plants can be labeled  gluten free because the plant does not also package gluten products and they know that for example the trucks, containers equipment are not used to handle wheat, barely or Rye. The Walmart butter in the western region says gluten free but not here. Most of The Kirkland and Members Mark brands in CA say they are from Vietnam. That's not the case in Wyoming and Colorado. I've spoken to customer service at the stores here in California. They were not helpful. I check labels every time I go to the store. The stores where I am are a Sh*tshow. The Magalopoly grocery chain Vons/Safeway/Albertsons, etc. are the same. Fishers and Planters brands no longer say gluten free. It could be regional. There are nuts with sugar coatings and fruit and nut mixes at the big chains that are labeled gluten free but I don't want the fruit or sugar.  It's so difficult I am considering moving again. I thought it would be easier to find safe food in a more populated area. It's actually worse.  I was undiagnosed for most of my life but not because I didn't try to figure it out. So I have had all the complications possible. I don't have any spare organs left.  No a little gluten will hurt you. The autoimmune process continues to destroy your organs though you may not feel it. If you are getting a little all the time and as much as we try we probably all are and so the damage is happening. Now the FDA has pretty much abandoned celiacs. There are no requirements for labeling for common allergens on medications. All the generic drugs made outside the US are not regulated for common allergens and the FDA is taking the last gluten free porcine Thyroid med, NP Thyroid, off the market in 2026. I was being glutened by a generic levothyroxin. The insurance wouldn't pay for the gluten free brand any longer because the FDA took them all off their approved formulary. So now I am paying $147 out of pocket for NP Thyroid but shortly I will have no safe choice. Other people with allergies should be aware that these foreign generic pharmaceutical producers are using ground shellfish shell as pill coatings and anti-desicants. The FDA knows this but  now just waits for consumers to complain or die. The take over of Wholefoods by Amazon destroyed a very reliable source of good high quality food for people with allergies and for people who wanted good reliably organic food. Bezos thought  he could make a fortune off people who were paying alot for organic and allergen free food by substituting cheap brands from Thailand. He didn't understand who the customers were who were willing to pay more for that food and why. I went from spending hundreds to nothing because Bezo removed every single trusted brand that I was buying. Now they are closing Whole foods stores across the country. In CA, Mill Valley store (closed July 2025) and the National Blvd. store in West Los Angeles (closed October 2025). The Cupertino store will close.  In recent years I have learned to be careful and trust no one. I have been deleberately glutened in a restaurant that was my favorite (a new employee). The Chef owner was not in the kitchen that night. I've had  a metal scouring pad cut up over my food.The chain offered gluten free dishes but it only takes one crazy who thinks you're a problem as a food fadist. Good thing I always look. Good thing they didn't do that to food going to a child with a busy mom.  I give big tips and apologize for having to ask in restaurants but mental illness seem to be rampant. I've learn the hard way.          I don't buy any processed food that doesn't say gluten free.  I am a life long Catholic. I worked for the Church while at college. I don't go to Church anymore because the men at the top decided Jesus is gluten. The special hosts are gluten less not gluten free. No I can't drink wine after people with gluten in their mouth and a variety of deadly germs. I have been abandoned and excluded by my Church/Family.  Having nearly died several times, safe food is paramount. If your immune system collapses as mine did, you get sepsis. It can kill you very quickly. I spent 5 days unconscious and had to have my appendix and gall bladder removed because they were necrotic. I was 25. They didn't figure out I had celiac till I was 53. No one will take the time to tell you what can happen when your immune system gets overwhelmed from its constant fighting the gluten and just stops. It is miserable that our food is processed so carelessly. Our food in many aspects is not safe. And the merging of all the grocery chains has made it far worse. Its a disaster. Krogers also recently purchased Vitacost where I was getting the products I could no longer get at Whole Foods. Kroger is eliminating those products from Vitacost just a Bezos did from WF. I am looking for reliable and certified sources for nuts. I have lived the worst consequences of the disease and being exposed unknowingly and maliciously. Once I was diagnosed I learned way more than anyone should have to about the food industry.  I don't do gray areas. And now I dont eat out except very rarely.  I have not eaten fast food for 30 years before the celiac diagnosis. Gluten aside..... It's not food and it's not safe.  No one has got our backs. Sharing safe food sources is one thing we can do to try to be safe.        
    • Mmoc
      Blood tests low iGA 4 years later digestive issues

      By Mmoc · Posted

      Thank you kindly for your response. I have since gotten the other type of bloods done and am awaiting results. 
×
×
  • 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.