[cyanide_sunshine]

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.

[KaitiUSA]

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]

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

[cyanide_sunshine]

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]

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]

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]

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.

[gf4life]

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

[pewpewlasers]

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?

[damnceliacdisease]

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

[Laura1436]

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

[Youngceliac16]

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!