Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

  • Announcements

    • admin

      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Celiac And Mono
0

15 posts in this topic

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.

0

Share this post


Link to post
Share on other sites


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.

0

Share this post


Link to post
Share on other sites

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

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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

0

Share this post


Link to post
Share on other sites

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?

0

Share this post


Link to post
Share on other sites

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

0

Share this post


Link to post
Share on other sites

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

0

Share this post


Link to post
Share on other sites

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!

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      102,669
    • Total Posts
      914,333
  • Topics

  • Posts

    • Gluten free backing food
      I just went back & checked the ingredients in those gluten-free MRE's. It says modified food starch & doesn't specify from what so if I were you I would certainly check with the company & have them clarify that to your satisfaction.
    • Blood sugar, hunger, celiac
      So I have celiac disease and also Hashimoto's thyroiditis (but not on meds because it's apparently "not bad enough" yet...). When I was still on gluten, I had chronically high cortisol and also high blood sugar and insulin. And when these were high (cortisol, blood sugar, insulin) I had constant hunger. Like I was starving all the time, and eating didnt help and often actually made me hungrier. It was a pretty horrible time, and no one even thought to test my blood sugar for a long time because I was young (21/22), thin (bmi 19), and have ZERO family history of diabetes. When I got off the gluten, cortisol came down over time, blood sugar improved some but still not ideal. (Getting glutened raises these again) For further blood sugar support, I took chromium and cinnamon and cut down on carbs (I'm not super low carb though). A few months ago I started taking berberine and that's helped a lot. My recent blood tests showed that my fasting blood sugar was 4.7 and my A1c was 5.6. My doctor was pleased. However, what I don't get is that I still have hunger issues at times. I mean, it has improved a ton since the worst times. I do have meals where I feel satisfied. But other times I feel like I haven't eaten very much at all after a meal. I thought when I got my blood sugar into the normal range I wouldn't have to think about this anymore, i would just eat, feel satisfied, not start feeling hungry until at least a few hours later, etc.It doesn't even seem to correlate to whether the meal is higher carb or not.
    • Gluten free backing food
      This is not going to be easy for you. You're going to have to change the foods in the pack out from time to time rather than just packing it & leaving it for years. I'm thinking weight is a factor too. I have a few suggestions..... http://www.walmart.com/ip/13398018?wmlspartner=wlpa&adid=22222222227010019313&wl0=&wl1=g&wl2=c&wl3=40886859272&wl4=&wl5=pla&wl6=78817797152&veh=sem      Tuna in pouches. Powdered milk https://jet.com/product/detail/cbb5f52fcf294bd3b66d8a77b268c584?jcmp=pla:ggl:loser_jd_food_beverages_tobacco_a3:food_items_cooking_baking_ingredients_canned_dry_milk_a3_other:na:na:na:na:na:2&code=PLA15&k_clickid=00396dda-02b2-63e9-5200-000028bca9be&abkId=403-1014808&gclid=CjwKEAiArdG1BRCLvs_q-IObwxMSJACXbLtzFTLkAO24ayN9WARBR06XXmQZEMdF8eZC4EZoCsSgfBoC8Gzw_wcB Nuts & dried fruits Instant oatmeal https://jet.com/product/detail/34cb04f4695e4978899c8b60b7b1aed8?jcmp=pla:ggl:jd_food_beverages_tobacco_a3:food_items_grains,_rice_cereal_oats,_grits_hot_cereal_a3_other:na:na:na:na:na:2&code=PLA15&k_clickid=00396dda-02b2-63e9-5200-000028bca9be&abkId=403-171581&gclid=CjwKEAiArdG1BRCLvs_q-IObwxMSJACXbLtzyw9QEXipSuCld5x1nxjMxV9PL-PM3ISAGik8XU2LphoCRuLw_wcB
        I did find a company that does gluten free MRE's: http://www.preparewise.com/food-storage/gluten-free-food-storage.html
    • What does this all mean?
      It's terrible that you are left hanging like this! I'm so sorry. Can you get to the doctors office & get a copy of the of the test results? If you can, then you could post them here & we have people who can interpret them for you.  
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      59,681
    • Most Online
      1,763

    Newest Member
    WillWeaverRVA
    Joined