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 And Mono

cyanide-sunshine

Recommended Posts

cyanide-sunshine Rookie
cyanide-sunshine
Posted

Hey, I'm an 18 year old guy and I think I have celiac. I'm a little obsessive compulsive, but I'm at school, and the free clinic here is really bad. Plus I'm a pre-medical student.

So basically I told my doctor I think I had mono. He gave me a test and I did.

I'm 5' 5", always have had well you know (wierd stools), but recently it's gotten worse. My teeth have been bad colored as long as I can remember ( I must sound like a really attractive guy, heh).

My doctor ordered a recurrent EBV testing at a GOOD hospital, and was positive.

The problem was I had mono six months ago.

My complete blood count is almost normal except my liver enzymes AST and ALt are almost exactly twice what they should be.

I'm at the point where I ordered a celiac test kit from a lab, but I canceled my order cuz it was a 100 bucks.

Symptoms:

Stomach pain / growling after eating

Insomnia, in the mornings/ get up around six

Fatigue

Just pain all over my body, seems to be really random

Twitching (Methinks that's a lack of sleep)

I can't lift weights anymore, it's bad.

I had a CT scan (normal) and hepatitis (normal)

I have no family history.

Thanks kids.

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

Celiac.com Sponsor (A8-M):


KaitiUSA Enthusiast
KaitiUSA
Posted

All of my symptoms started around the time I had mono. About a year after being diagnosed with mono I was then diagnosed with celiac. They kept telling me that mono lasted a long time and needed to run its course but I never got better till going gluten free. There are over 200 symptoms that can come with celiac and some people may or may not have symtpoms. The symptoms you are describing are some of the ones that can come with celiac. Celiac can be triggered by such things as mono, extreme stress and so forth. My celiac was triggered by mono and I was healthy my whole life up to that point when my symptoms started. You should at least get tested for it. Nobody in my family ever heard of it before I was diagnosed now quite a few have it. IF you do have it your family should be checked because it does run in families and they don't have to have symptoms to have it.

MySuicidalTurtle Enthusiast
MySuicidalTurtle
Posted

You can always try going on the diet completely and see how you feel.

cyanide-sunshine Rookie
cyanide-sunshine
Posted
  • Author

I feel a ton better (even the past three days). But I read that you are supposed to not change your diet before you test for it. It's wierd, I never felt uncomfortable after drinking milk as I do now.

Jon

Edit: I am on the meal plan at college it kinda sucks for variety.

KaitiUSA Enthusiast
KaitiUSA
Posted

yes if you are gluten free before testing it can make the test come back negative. Some celiacs can't tolerate lactose due to the damage to the small intestine. I was lactose intolerant on and off my whole life and when I went gluten free I have no problem now.

Some people just have other intolerances besides gluten though.

Do you feel the need to be tested? If you want an official diagnosis you need to get tested to see if you have it. If you don't really care about the official diagnosis you could stick with the diet and see how you feel since you have already been seeing improvement.

It's all a matter of what you feel you need to do.

MySuicidalTurtle Enthusiast
MySuicidalTurtle
Posted

If you want to get out of the meal plan at Uni (get money back or have them be required give you gluten-free food) then you will probably need a diagnosis.

Other than that, you don't need to be officially diagnosed.

cdford Contributor
cdford
Posted

I am not a teenager, but am one of those less than 5% of people who did not get EBV (mono) by age 30. It was the trigger for my celiac disease symptoms. Looking back, I can see that I had the problem my whole life, just not badly enough for any doctor to take notice. My teeenage daughter also has recurring EBV. She has not been down badly with it in about a year since deciding that being gluten-free was not so bad. It just took her a long time to decide to deal with the celiac disease issue. Hopefully your immune system will stabilize once you are diagnosed and go gluten-free. Maybe then many of your symptoms will mediate.

The liver enzymes issues are also common. Mine went double the norm after the last accidental gluten ingestion. They had been higher than normal for several years. You may want to have the doc check your cholesterol. For many of us it is high and causes a problem with the liver much earlier than the population norm.

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

Celiac.com Sponsor (A8-M):


Guest ~wAvE WeT sAnD~
Guest ~wAvE WeT sAnD~
Posted

Oops, tried to edit, but actually posted twice! My original entry is either above/below, I can't tell from here!

Guest ~wAvE WeT sAnD~
Guest ~wAvE WeT sAnD~
Posted

Hey there!

I was diagnosed with celiac disease a year after I had Mono. I think that the reason it will continue to show up on the test is because your antibody count may still be high. Also, the Epstein-Barr virus will remain in your system for the rest of your life. I don't know if your doctor already told you all of this, but I figured that I'd share.

After you have Mono, you are also susceptible to relapse for the next four years.

I think there may definitely be a connection between Mono and Celiac--Mono has a HUGE impact on the Immune System.

  • 5 months later...
Guest maybird85
Guest maybird85
Posted

i was just wondering about any connection between mono and celiac. i had mono when i was 12 and i have never been the same and now i kind of suspect celiac.

gf4life Enthusiast
gf4life
Posted

My son Jacob was tested for EBV two years ago. His antibody levels were consistent with a past infection (of at least 12 months previous). The reason he was tested is that we were trying to figure out what was causing his recurrent high fevers. He would get a temp of between 103-105 that would last for 2-3 days and occur every 3-4 weeks, like clockwork. I could look at a calander and know when he would get another one! He had been getting fevers since he was at least 1 1/2 years old, possibly before. We spent a few years being told he was getting ear infections...

So they found the EBV and the doc said that was causing the fevers and he would eventually get better. His fevers continued and kept getting worse. Finally we were looking for Celiac and the pedi GI referred him to an infectious disease/rheumatologist/immunologist clinic. There the doctor said he thought it was Familial Mediteranean Fever, FMF for short. He put him on the meds (that ONLY work for FMF) and he did not have a fever for an entire year. Then they took him off the meds to see if his fevers came back. It has been over 3 months and he only had one time where he had a fever and it was possibly from a virus the rest of the family had, but exactly like his previous episodes. He didn't show signs of the virus until after his fever broke.

Anyway, to shorten my already long story, my problem is this. He started the gluten-free diet the same month that he started the FMF meds. Now he has gone over 2 months without a fever and I am wondering if maybe he doesn't have FMF. Maybe the EBV combined with the gluten damage was causing the fevers, and now that he has been gluten-free for 17 months the EBV is dormant and no longer causing him to be sick. Does anyone think this is a possibility?? We go back to the doctor next month and I will discuss this with him. Maybe I am grasping at straws here.

I would love for my son to not have to take another medication daily (he already takes two others daily), but if it will help him to not be sick...I just don't understand why he hasn't had a fever in 70 days! 25 of those days his temp went up between 99.1-99.8, and 6 days it went below 96.5. We chart his temp daily 3x a day. It drives me crazy, since I just want to make him all better. Does anyone else have problems regulating their body temperature??

God bless,

Mariann

  • 2 years later...
pewpewlasers Rookie
pewpewlasers
Posted

I'm glad I found this post.

I have been on my gluten free diet for a few weeks now and have been to the doctor to get tests for celiac. It turns out they did not test for celiac (which I asked for) but they did test for mono which came out positive. It seems like a waste of money to me because I am paying out of pocket and I feel like I just wasted 350 bucks for them to tell me to get rest and drink fluids.

Answer this doc, is it because of mono that I've felt horrible whenever I eat for years? Is it because of mono I've had the worst fatigue of my life for 14 months? Is it because of mono that I have terrible migranes?

Please, show me a doctor that isn't worthless and will actually run celiac tests when I ask for them.

Anyways...

Could there really be a connection between mono and celiac?

Why would they even run a mono test when I told them I've been having these symptoms for years and the past 14 months they've been worse?

  • 3 months later...
damnceliacdisease Newbie
damnceliacdisease
Posted

Hi,

Just thought I'd add my tuppence worth here. I'm 36 and I had no symptoms of celiac up until two years ago. Indeed I ate lots of cakes drank lots of beer all my life and never suffered any of the classic celiac symptoms. The first 'health' problem I had was an episode of panic attacks that I thought were related to a problem with the heart/lungs. This went on for some time with numerous visits to the doctor that checked bowel an also a bronchscopy. Nothing found. Gave up cigarettes for a while and the started on them again. After about 3 months started getting fevers at night, usually 2/3 days after heavy/moderete drinking on the weekend. This was accompnied with bloating, constipation, irregular stool formation Thought symptoms were drink related but kept having constant attacks and started to miss work due to night sweats/lack of sleep and energy. Of course this did nothing for the stress levels either and after about 6 doctor visits doctor sent off blood tests and they came back positive for Mono, EBV. Never had EBV diagnosed before so not sure if it was the first time I got it or whether it was dormant and came back due to stress/run down etc. Anyway EBV was diagnosed 6 motnhs ago. Lymph glands on left side of neck supraclavicular and also now a swelling of the left underarm (auxillary I think) are still swollen. Went to gastro specialist and he has now diagnosed me as having celiac disease. He noticed elevated levels in the blood (tTGA) and then did a biopsy of small intestine. Just started on gluten free diet now (damn its not nice to walk past the biscuit cake section in the supermarket) and will let you know how I get on in relation to my still enlarged lymph glands and EBV.

What is interesting here though is whether the EBV brought on the celiac or the other way around? This needs further research as in all my previous tests for the panic attacks my blood was tested with no postitive for EBV, Mono. It was only after 6 months of being diagnosed with EBV that celiac was tested.

hope this helps and keep me posted on any developments

  • 3 weeks later...
Laura1436 Newbie
Laura1436
Posted

hey guys,

I read this and thought that it was weird that so many other people had this happen to them. I am 18 and about a year ago i was "officially" diagnosed with celiac. Anyways, after about a year of wanting to be tested for celiac the doctors finally tested me and, of course, it came out positive. Then a week later I was diagnosed with mono. It was a very fun week, but anyways I feel a lot better than i did before but i still get sick a lot and my glands get swollen a lot also. Does anyone know if this is from the mono still?? or just getting sick from celiac with a weakened immune system?

THanks,

Laura

  • 2 weeks later...
Youngceliac16 Apprentice
Youngceliac16
Posted

I had no idea how much this happened! I tested positive for mono in january (before being diagnosed with celiac) and was sick for months without getting better. None of my doctors could figure out why I wasn't getting any better. I went to a naturalpath and got diagnose with celiac. I went on the gluten-free diet that day and started recovering from mono within the next week.

Anyway, if I were you I would get the bloodtest to test for celiac (while still on the gluten diet), then go off it for a few weeks and see if you fell any better (both with mono and possible celiac). Good luck!

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. knitty kitty
      - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      @Jane02, I hear you about the kale and collard greens. I don't do dairy and must eat green leafies, too, to get sufficient calcium. I must be very careful because some calcium supplements are made from ground up crustacean shells. When I was deficient in Vitamin D, I took high doses of Vitamin D to correct the deficiency quickly. This is safe...
    2. Jane02
      - Jane02 replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      Thank you so much @knitty kitty for this insightful information! I would have never considered fractionated coconut oil to be a potential source of GI upset. I will consider all the info you shared. Very interesting about the Thiamine deficiency. I've tracked daily averages of my intake in a nutrition software. The only nutrient I can't consistently...
    3. knitty kitty
      - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      Hello, @Jane02, I take Naturewise D 3. It contains olive oil. Some Vitamin D supplements, like D Drops, are made with fractionated coconut oil which can cause digestive upsets. Fractionated coconut oil is not the same as coconut oil used for cooking. Fractionated coconut oil has been treated for longer shelf life, so it won't go bad in the...
    4. Scott Adams
      0

      Penobscot Bay, Maine: Nurturing Gluten-Free Wellness Retreat with expert celiac dietitian, Melinda Dennis

      until
      Hello! Join me and treat yourself to a four-day, three-night restorative gluten-free retreat in a peaceful, private coastal retreat setting near Penobscot Bay in Maine. Dates: April 10-13, 2026 Enjoy engaging classes...
    5. Scott Adams
      - Scott Adams replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      I do not know this, but since they are labelled gluten-free, and are not really a product that could easily be contaminated when making them (there would be not flour in the air of such a facility, for example), I don't really see contamination as something to be concerned about for this type of product.
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,332
    • Most Online (within 30 mins)
      7,748
    Nicolah
    Newest Member
    Nicolah
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

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

  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • knitty kitty
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By knitty kitty · Posted

      @Jane02, I hear you about the kale and collard greens.  I don't do dairy and must eat green leafies, too, to get sufficient calcium.  I must be very careful because some calcium supplements are made from ground up crustacean shells.  When I was deficient in Vitamin D, I took high doses of Vitamin D to correct the deficiency quickly.  This is safe and nontoxic.  Vitamin D level should be above 70 nmol/L.  Lifeguards and indigenous Pacific Islanders typically have levels between 80-100 nmol/L.   Levels lower than this are based on amount needed to prevent disease like rickets and osteomalacia. We need more thiamine when we're physically ill, emotionally and mentally stressed, and if we exercise like an athlete or laborer.  We need more thiamine if we eat a diet high in simple carbohydrates.  For every 500 kcal of carbohydrates, we need 500-1000 mg more of thiamine to process the carbs into energy.  If there's insufficient thiamine the carbs get stored as fat.  Again, recommended levels set for thiamine are based on minimum amounts needed to prevent disease.  This is often not adequate for optimum health, nor sufficient for people with absorption problems such as Celiac disease.  Gluten free processed foods are not enriched with vitamins like their gluten containing counterparts.  Adding a B Complex and additional thiamine improves health for Celiacs.  Thiamine is safe and nontoxic even in high doses.  Thiamine helps the mitochondria in cells to function.  Thiamine interacts with each of the other B vitamins.  They are all water soluble and easily excreted if not needed. Interesting Reading: Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet https://pubmed.ncbi.nlm.nih.gov/19154566/ Safety and effectiveness of vitamin D mega-dose: A systematic review https://pubmed.ncbi.nlm.nih.gov/34857184/ High dose dietary vitamin D allocates surplus calories to muscle and growth instead of fat via modulation of myostatin and leptin signaling https://pubmed.ncbi.nlm.nih.gov/38766160/ Safety of High-Dose Vitamin D Supplementation: Secondary Analysis of a Randomized Controlled Trial https://pubmed.ncbi.nlm.nih.gov/31746327/ Vitamins and Celiac Disease: Beyond Vitamin D https://pmc.ncbi.nlm.nih.gov/articles/PMC11857425/ Investigating the therapeutic potential of tryptophan and vitamin A in modulating immune responses in celiac disease: an experimental study https://pubmed.ncbi.nlm.nih.gov/40178602/ Investigating the Impact of Vitamin A and Amino Acids on Immune Responses in Celiac Disease Patients https://pmc.ncbi.nlm.nih.gov/articles/PMC10814138/
    • Jane02
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Jane02 · Posted

      Thank you so much @knitty kitty for this insightful information! I would have never considered fractionated coconut oil to be a potential source of GI upset. I will consider all the info you shared. Very interesting about the Thiamine deficiency.  I've tracked daily averages of my intake in a nutrition software. The only nutrient I can't consistently meet from my diet is vitamin D. Calcium is a hit and miss as I rely on vegetables, dark leafy greens as a major source, for my calcium intake. I'm able to meet it when I either eat or juice a bundle of kale or collard greens daily haha. My thiamine intake is roughly 120% of my needs, although I do recognize that I may not be absorbing all of these nutrients consistently with intermittent unintentional exposures to gluten.  My vitamin A intake is roughly 900% (~6400 mcg/d) of my needs as I eat a lot of sweet potato, although since it's plant-derived vitamin A (beta-carotene) apparently it's not likely to cause toxicity.  Thanks again! 
    • knitty kitty
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By knitty kitty · Posted

      Hello, @Jane02,  I take Naturewise D 3.  It contains olive oil.   Some Vitamin D supplements, like D Drops, are made with fractionated coconut oil which can cause digestive upsets.  Fractionated coconut oil is not the same as coconut oil used for cooking.  Fractionated coconut oil has been treated for longer shelf life, so it won't go bad in the jar, and thus may be irritating to the digestive system. I avoid supplements made with soy because many people with Celiac Disease also react to soy.  Mixed tocopherols, an ingredient in Thornes Vitamin D, may be sourced from soy oil.  Kirkland's has soy on its ingredient list. I avoid things that might contain or be exposed to crustaceans, like Metagenics says on its label.  I have a crustacean/shellfish/fish allergy.  I like Life Extension Bioactive Complete B Complex.  I take additional Thiamine B 1 in the form Benfotiamine which helps the intestines heal, Life Extension MegaBenfotiamine. Thiamine is needed to activate Vitamin D.   Low thiamine can make one feel like they are getting glutened after a meal containing lots of simple carbohydrates like white rice, or processed gluten free foods like cookies and pasta.   It's rare to have a single vitamin deficiency.  The water soluble B Complex vitamins should be supplemented together with additional Thiamine in the form Benfotiamine and Thiamine TTFD (tetrahydrofurfuryl disulfide) to correct subclinical deficiencies that don't show up on blood tests.  These are subclinical deficiencies within organs and tissues.  Blood is a transportation system.  The body will deplete tissues and organs in order to keep a supply of thiamine in the bloodstream going to the brain and heart.   If you're low in Vitamin D, you may well be low in other fat soluble vitamins like Vitamin A and Vitamin K. Have you seen a dietician?
    • Scott Adams
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Scott Adams · Posted

      I do not know this, but since they are labelled gluten-free, and are not really a product that could easily be contaminated when making them (there would be not flour in the air of such a facility, for example), I don't really see contamination as something to be concerned about for this type of product. 
    • trents
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By trents · Posted

      Contact them.
×
×
  • 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.