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. suek54
      - suek54 replied to suek54's topic in Dermatitis Herpetiformis
      7

      Awaiting dermatitis herpetiformis confirmation following biopsy

      Wow KK, thank you so much for all your attached info. I had a very quick scan but will read more in depth later. The one concerning corticosteroid use is very interesting. That would relate to secondary adrenal insufficiency I think , ie AI caused by steroids such as taken long term for eg asthma. I have primary autoimmune AI, my adrenals are atrophied...
    2. knitty kitty
      - knitty kitty replied to suek54's topic in Dermatitis Herpetiformis
      7

      Awaiting dermatitis herpetiformis confirmation following biopsy

      Welcome to the forum, @suek54, I have Dermatitis Herpetiformis, too. I found taking Niacin B3 very helpful in clearing my skin from blisters as well as improving the itchies-without-rash (peripheral neuropathy). Niacin has been used since the 1950's to improve dermatitis herpetiformis. I try to balance my iodine intake (which will cause flairs...
    3. suek54
      - suek54 replied to suek54's topic in Dermatitis Herpetiformis
      7

      Awaiting dermatitis herpetiformis confirmation following biopsy

      Thank you all for your advice and the dermatitis herpetiformis article. The latter made me realise I had stopped taking my antihistamine, which I will restart today. The Dapsone has cleared the rash entirely but I still get quite a bit itching, absolutely nothing to see though. I know its notoriously hard to clear and its still relatively early days for me...
    4. trents
      - trents replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      how much gluten do I need to eat before blood tests?

      So, essentially all of the nutrition in the food we eat is absorbed through the villous lining of the small bowel. This is the section of the intestinal track that is damaged by celiac disease. This villous lining is composed of billions of finger-like projections that create a huge amount of surface area for absorbing nutrients. For the celiac person, when...
    5. catnapt
      - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      how much gluten do I need to eat before blood tests?

      thank you so much for your detailed and extremely helpful reply!! I can say with absolute certainty that the less gluten containing products I've eaten over the past several years, the better I've felt. I wasn't avoiding gluten, I was avoiding refined grains (and most processed foods) as well as anything that made me feel bad when I ate it. It's the...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,258
    • Most Online (within 30 mins)
      7,748
    Tdodge
    Newest Member
    Tdodge
    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

    • suek54
      Awaiting dermatitis herpetiformis confirmation following biopsy

      By suek54 · Posted

      Wow KK, thank you so much for all your attached info. I had a very quick scan but will read more in depth later.  The one concerning corticosteroid use is very interesting. That would relate to secondary adrenal insufficiency I think , ie AI caused by steroids such as taken long term for eg asthma. I have primary autoimmune AI, my adrenals are atrophied, no chance if recovery there. But I am in touch with some secondaries, so something to bear in mind. .  Niacin B3 Very interesting too. Must have a good read about that.  Im sure lots of questions will arise as I progress with dermatitis herpetiformis. In the mean time, thanks for your help.
    • knitty kitty
      Awaiting dermatitis herpetiformis confirmation following biopsy

      By knitty kitty · Posted

      Welcome to the forum, @suek54, I have Dermatitis Herpetiformis, too.  I found taking Niacin B3 very helpful in clearing my skin from blisters as well as improving the itchies-without-rash (peripheral neuropathy).  Niacin has been used since the 1950's to improve dermatitis herpetiformis.   I try to balance my iodine intake (which will cause flairs) with Selenium which improves thyroid function.   Interesting Reading: Dermatitis herpetiformis effectively treated with heparin, tetracycline and nicotinamide https://pubmed.ncbi.nlm.nih.gov/10844495/   Experience with selenium used to recover adrenocortical function in patients taking glucocorticosteroids long https://pubmed.ncbi.nlm.nih.gov/24437222/   Two Cases of Dermatitis Herpetiformis Successfully Treated with Tetracycline and Niacinamide https://pubmed.ncbi.nlm.nih.gov/30390734/   Steroid-Resistant Rash With Neuropsychiatric Deterioration and Weight Loss: A Modern-Day Case of Pellagra https://pmc.ncbi.nlm.nih.gov/articles/PMC12532421/#:~:text=Figure 2.,(right panel) upper limbs.&text=The distribution of the rash,patient's substantial response to treatment.   Nicotinic acid therapy of dermatitis herpetiformis (1950) https://pubmed.ncbi.nlm.nih.gov/15412276/
    • suek54
      Awaiting dermatitis herpetiformis confirmation following biopsy

      By suek54 · Posted

      Thank you all for your advice and the dermatitis herpetiformis article. The latter made me realise I had stopped taking my antihistamine, which I will restart today. The Dapsone has cleared the rash entirely but I still get quite a bit itching, absolutely nothing to see though. I know its notoriously hard to clear and its still relatively early days for me.  The iodine issue is very interesting. I do eat quite a bit of salt because I have Addison's disease and sodium retention is an issue. I also have autoimmune hypothyroidism, not sure how a low iodine diet would play into that? Because of my Addison's I am totally steroid dependent, I take steroids 4 x daily and cannot mount any defence against inflammation. I need to increase my meds for that. Now that I know what is wrong I can do just that if Im having a bad day. Life is very sweet, just so damn complicated sometimes! Hey ho, onwards. Thank you again for your advice.  
    • trents
      how much gluten do I need to eat before blood tests?

      By trents · Posted

      So, essentially all of the nutrition in the food we eat is absorbed through the villous lining of the small bowel. This is the section of the intestinal track that is damaged by celiac disease. This villous lining is composed of billions of finger-like projections that create a huge amount of surface area for absorbing nutrients. For the celiac person, when gluten is consumed, it triggers an autoimmune reaction in this area which, of course, generates inflammation. The antibodies connected with this inflammation is what the celiac blood tests are designed to detect but this inflammation, over time, wears down the finger-like projections of the villous lining. Of course, when this proceeds for an extended period of time, greatly reduces the absorption efficiency of the villous lining and often results in many and various nutrient deficiency-related health issues. Classic examples would be osteoporosis and iron deficiency. But there are many more. Low D3 levels is a well-known celiac-caused nutritional deficiency. So is low B12. All the B vitamins in fact. Magnesium, zinc, etc.  Celiac disease can also cause liver inflammation. You mention elevated ALP levels. Elevated liver enzymes over a period of 13 years was what led to my celiac diagnosis. Within three months of going gluten free my liver enzymes normalized. I had elevated AST and ALT. The development of sensitivities to other food proteins is very common in the celiac population. Most common cross reactive foods are dairy and oats but eggs, soy and corn are also relatively common offenders. Lactose intolerance is also common in the celiac population because of damage to the SB lining.  Eggs when they are scrambled or fried give me a gut ache. But when I poach them, they do not. The steam and heat of poaching causes a hydrolysis process that alters the protein in the egg. They don't bother me in baked goods either so I assume the same process is at work. I bought a plastic poacher on Amazon to make poaching very easy. All this to say that many of the issues you describe could be caused by celiac disease. 
    • catnapt
      how much gluten do I need to eat before blood tests?

      By catnapt · Posted

      thank you so much for your detailed and extremely helpful reply!! I can say with absolute certainty that the less gluten containing products I've eaten over the past several years, the better I've felt.   I wasn't avoiding gluten, I was avoiding refined grains (and most processed foods) as well as anything that made me feel bad when I ate it. It's the same reason I gave up dairy and eggs- they make me feel ill.  I do have a bit of a sugar addiction lol so a lot of times I wasn't sure if it was the refined grains that I was eating - or the sugar. So from time to time I might have a cookie or something but I've learned how to make wonderful cookies and golden brownies with BEANS!! and no refined sugar - I use date paste instead. Pizza made me so ill- but I thought it was probably the cheese. I gave up pizza and haven't missed it. the one time I tried a slice I felt so bad I knew I'd never touch it again. I stopped eating wheat pasta at least 3 yrs ago- just didn't feel well after eating it. I tried chick pea pasta and a few others and discovered I like the brown rice pasta. I still don't eat a lot of pasta but it's nice for a change when I want something easy. TBH over the years I've wondered sometimes if I might be gluten intolerant but really believed it was not possible for me to have celiac disease. NOW I need to know for sure- because I'm in the middle of a long process of trying to find out why I have a high parathyroid level (NOT the thyroid- but rather the 4 glands that control the calcium balance in your body) I have had a hard time getting my vit D level up, my serum calcium has run on the low side of normal for many years... and now I am losing calcium from my bones and excreting it in my urine (some sort of renal calcium leak) Also have a high ALP since 2014. And now rapidly worsening bone density.  I still do not have a firm diagnosis. Could be secondary HPT (but secondary to what? we need to know) It could be early primary HPT. I am spilling calcium in my urine but is that caused by the high parathyroid hormone or is it the reason my PTH is high>? there are multiple feedback loops for this condition.    so I will keep eating the bread and some wheat germ that does not seem to bother me too much (it hasn't got enough gluten to use just wheat germ)    but I'm curious- if you don't have a strong reaction to a product- like me and wheat germ- does that mean it's ok to eat or is it still causing harm even if you don't have any obvious symptoms? I guess what you are saying about silent celiac makes it likely that you can have no symptoms and still have the harm... but geez! you'd think they'd come up with a way to test for this that didn't require you to consume something that makes you sick! I worry about the complications I've been reading about- different kinds of cancers etc. also wondering- are there degrees of celiac disease?  is there any correlation between symptoms and the amnt of damage to your intestines? I also need a firm diagnosis because I have an identical twin sister ... so if I have celiac, she has it too- or at least the genetic make up for having it. I did have a VERY major stress to my body in 2014-2016 time frame .. lost 50lbs in a short period of time and had severe symptoms from acute protracted withdrawal off an SSRI drug (that I'd been given an unethically high dose of, by a dr who has since lost his license)  Going off the drug was a good thing and in many ways my health improved dramatically- just losing 50lbs was helpful but I also went  off almost a dozen different medications, totally changed my diet and have been doing pretty well except for the past 3-4 yrs when the symptoms related to the parathyroid issue cropped up. It is likely that I had low vit D for some time and that caused me a lot of symptoms. The endo now tells me that low vit D can be caused by celiac disease so I need to know for sure! thank you for all that great and useful information!!! 
×
×
  • 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.