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

***what Problems Did You Have After Having Mono?****

azmom3

By azmom3
in Related Issues & Disorders

Recommended Posts

azmom3 Contributor
azmom3
Posted

My 8 year old had mono this past spring, then my 10 year old son got it shortly after that. It seems like it's been one problem after another ever since and neither seems like they've fully recovered. I'm curious to see what others have gone through.

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

Celiac.com Sponsor (A8-M):


Nadtorious Rookie
Nadtorious
Posted

I had mono in high school and my celiac symptoms developed shortly after recovery. I guess you could say I haven't been the same since :unsure:

sparkles Contributor
sparkles
Posted

I had mono my first year of teaching. I was 21. It took a good year before I really felt better. I caught everything that was going around which is a lot when you are surrounded by 30+ kids every day. I was also exhausted and tired for a really long time. Regardless of what the docs say, I think it takes a really long time for the immune system to get back to being able to fight off diseases. Rest is important.... as is keeping to a regular schedule of sleep, activity, and eating. I know that is hard to do with kids but it is really important. The body needs to heal. I think that it takes sometimes over a year for the body to get back to normal.... just my observation from what I have seen of others who have had the disease and my own experience. Good luck.

Michi8 Contributor
Michi8
Posted

Recovery time really depends on how severe the mono symptoms are, and how old you are when you have it. It went through our school last spring, and the really young kids who got it exhibited no more than cold symptoms. My 8 year old caught it and ended up with severe tonsilitis (had to go to emergency for treatment, because of worry about obstructed airway) and a swollen spleen. He never did experience exhaustion though. It took a couple of months for his spleen to return to normal. He's not experiencing any obvious symptoms now, except he is continuing with his constipation issues and is about as lethargic and moody as he was pre-mono. Those health issues aren't normal of course, but they don't seem to have been made worse since having mono.

Michelle

georgie Enthusiast
georgie
Posted

Azmom3, I remembered you from the other Thyroid thread. Is there a history of autoimmune Thyroid in your family ? Hashis Thyroid is genetic. And repeated infections and fatigue etc - 'can' be a Hypo symptom. I had mono too when 21. But it was my poor Thyroid function that kept me ill with 'CFS' for the next 25 years. All those years I blamed the mono when in fact the poor recovery was just a symptom of something else. Just a thought.

Nantzie Collaborator
Nantzie
Posted

My GI symptoms started after having mono when I was 17. I was basically never the same after that. I had "IBS" :rolleyes: , I was absolutely exhausted, never completed even a semester of college. It was awful. And I had no answers up until finding out about gluten a year ago. We have had discussions about mono here before, which you can do a search for if you want. Basically though, it seems to be a common trigger for celiac. You didn't mention if your kids already had celiac before the mono, but if they did, with mono on top of it, it totally makes sense that it's just going to take a while for them to feel better.

I did hear at one point that the virus that causes mono (Epstein-Barr Virus) can actually stay in your system for years, which is what I wrote off some of my lingering exhaustion as.

Nancy

eleep Enthusiast
eleep
Posted

I had mono my sophomore year in college and never quite got over the exhaustion and fatigue -- I know now that was the onset of my celiac symptoms.

eleep

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

Celiac.com Sponsor (A8-M):


azmom3 Contributor
azmom3
Posted
  • Author
My GI symptoms started after having mono when I was 17. I was basically never the same after that. I had "IBS" :rolleyes: , I was absolutely exhausted, never completed even a semester of college. It was awful. And I had no answers up until finding out about gluten a year ago. We have had discussions about mono here before, which you can do a search for if you want. Basically though, it seems to be a common trigger for celiac. You didn't mention if your kids already had celiac before the mono, but if they did, with mono on top of it, it totally makes sense that it's just going to take a while for them to feel better.

I did hear at one point that the virus that causes mono (Epstein-Barr Virus) can actually stay in your system for years, which is what I wrote off some of my lingering exhaustion as.

Nancy

The funny thing is that I don't think either of them have celiac. Our baby (well he's 2, now), is what brought us to this site as he's suspected of celiac and/or eosinophilic esophagitis. Our 10 year old tested negative for celiac, although I still suspect this as a possibility. I know it's possible, but I'd be very surprised if our daughter had it. If we find out for sure the baby has it, we will have our daughter tested also. We are retesting our son via blood here shortly, so I'm avoiding gluten-free stuff until then for him. So far, blood has shown me and our oldest son to be negative and the baby's had elevated IgG, but the others were normal. Biopsies for both celiac and EE are end of November for the baby. I thought I heard that the Epstein-Barr Virus stays in your system forever once you have it, but that usually your symptoms go away after anywhere from a few weeks to a couple years. I also heard that a large percentage of people get it (I want to say it was 85% or so....really high anyways), but that many people never even knew they had it. I wonder why some people get affected really bad and others have no idea they had it. Anyways thanks for your post.

Michi8 Contributor
Michi8
Posted
The funny thing is that I don't think either of them have celiac. Our baby (well he's 2, now), is what brought us to this site as he's suspected of celiac and/or eosinophilic esophagitis. Our 10 year old tested negative for celiac, although I still suspect this as a possibility. I know it's possible, but I'd be very surprised if our daughter had it. If we find out for sure the baby has it, we will have our daughter tested also. We are retesting our son via blood here shortly, so I'm avoiding gluten-free stuff until then for him. So far, blood has shown me and our oldest son to be negative and the baby's had elevated IgG, but the others were normal. Biopsies for both celiac and EE are end of November for the baby. I thought I heard that the Epstein-Barr Virus stays in your system forever once you have it, but that usually your symptoms go away after anywhere from a few weeks to a couple years. I also heard that a large percentage of people get it (I want to say it was 85% or so....really high anyways), but that many people never even knew they had it. I wonder why some people get affected really bad and others have no idea they had it. Anyways thanks for your post.

A lot of people carry Epstein Barr virus and never develop mono at all. According to the CDC, up to 95% of US adults between 35 and 40 have been infected.

Michelle

azmom3 Contributor
azmom3
Posted
  • Author
Azmom3, I remembered you from the other Thyroid thread. Is there a history of autoimmune Thyroid in your family ? Hashis Thyroid is genetic. And repeated infections and fatigue etc - 'can' be a Hypo symptom. I had mono too when 21. But it was my poor Thyroid function that kept me ill with 'CFS' for the next 25 years. All those years I blamed the mono when in fact the poor recovery was just a symptom of something else. Just a thought.

We have no history of autoimmune Thyroid in my family. Looking back though, I remember my mom always trying to get a nap in in the middle of the day whenever she could, and always looking exhausted (she raised 9 kids though, 3 of which had cystic fibrosis...so I always blamed her fatigue on all she had to deal with). She comes from a family of 5 girls, all who are probably considered obese...not sure how much the weight plays into everything.... So is it a routine test to check the thyroid...was that you that gave me a list on the other thread? I'm not sure if there are different tests for different things or what exactly I should be telling or asking my doctor. Thanks so much for your help! :)

georgie Enthusiast
georgie
Posted

Azmom3, Most Drs only do TSH test. But you need Antibodies for Thyroid tested. The Free T3, and Free T4 would be handy too. And be aware that about 10% of people get a false negative to the Thyroid Antibody test. Obesity can be a symptom. Sometimes the symptoms are mild and just feel like a sort of brain fog, and perpetual tiredness. You certainly don't need to have the classic 'dry hair falling out' as many Drs think. Feeling cold all the time can be a good indicator and if you basal temp sits way below normal you should check with your Dr.

lorka150 Collaborator
lorka150
Posted

i had mono when i was in grade eleven and had it so horribly bad. i was in the hospital, taking percocet, on steroids (for swelling in my throat, as it started to close), and missed three months of school. i never felt normal again - lo and behold, celiac arrived.

Archived

This topic is now archived and is closed to further replies.

Go to topic listing
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,641
    • Most Online (within 30 mins)
      7,748
    JennaK23222
    Newest Member
    JennaK23222
    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)

    • There are no registered users currently online

  • Upcoming Events

  • Posts

    • Jmartes71
      Second chance

      By Jmartes71 · Posted

      Thats the thing, diagnosed in 1994 before foods eliminated celiac by biopsy colonoscopy at Kaiser in Santa Clara  now condo's but it has to be somewhere in medical land.1999 got married, moved, changed doctor's was with former for 25 years told him I waz celiac and that.Fast forward to last year.i googled celiac specialist and what popped up was a former well known heard of hospital. I thought I would get answers to be put through unnecessary colonoscopy KNOWING im glutenfree and she wasn't listening to me for help rather than screening me for celiac! Im already diagnosed seeking medical help.I did all the appointments ask from her and when I wanted my records se t to my pcp, thats when the with holding my records when I repeatedly messaged, it was down played the seriousness and I was labeled unruly when I asked why am I going through all this when its the celiac name that IS what my issue and All my ailments surrounding it related. I am dea6eoth the autoimmune part though my blood work is supposedly fabulous. Im sibo positive,HLA-DQ2 positive, dealing with skin, eye and now ms.I was employed as a bus driver making good money, I loved it for the few years my body let me do until I was yet again fired.i went to seek medical help because my body isn't well just to be made a disability chaser. Im exhausted,glutenfree, no lawyer will help and disability is in limbo thanks to the lax on my health from the fabulous none celiac Google bay area dr snd team. Its not right.
    • trents
      Concerning GP advice

      By trents · Posted

      Welcome to the celiac.com community @EssexMum! First, let me correct some misinformation you have been given. Except in the case of what is known as "refractory" celiac disease, which is very rare, it is not true that the "fingers" will not grow back once a consistently gluten free diet is adopted. Celiac disease is an autoimmune condition whereby the ingestion of gluten triggers an inflammatory process that damages the millions of tiny finger-like projections that make up the lining of the small bowel. We call this the "villous lining". Over time, continued ingestion of gluten on a regular basis results in the wearing down of these fingers which greatly reduces the surface area of this very important membrane. It is where essentially all the nutrition from what we eat is absorbed. So, losing this surface area results in inefficiency in nutrient absorption and often to medical problems related to nutrient deficiencies. Again, if a gluten-free diet is consistently observed, the villous lining of the small bowel should rebound. "We was informed that her body absorbs the gluten rather then rejecting it and that is why she doesn't react to the gluten straight away, it will be a build up and then the pains start. " That sounds like unscientific BS to me. But it does sound like your stepdaughter may have a type of celiac disease we know as "silent" celiac disease, meaning, she is asymptomatic or at least the symptoms are not intense enough to usually notice. She is not completely asymptomatic, however, because you stated was experiencing tummy aches off and on. Cristiana gives some good suggestions about ordering "safe" food for your stepdaughter from restaurant menus in Europe. You must realize that as the step parent who only has her part of the time you have no real control over how cooperative her other set of parents are with regard to your stepdaughter's needs to eat gluten free. It sounds like they don't really understand the seriousness of the matter. This is very common in family settings where other members are ignorant about celiac disease and the damage it can do to body systems. So, they don't take it seriously. The best you can do is make suggestions. Perhaps print out some info about celiac disease from the Internet to send them. Being inconsistent with the gluten free diet keeps the inflammation smoldering and delays or inhibits healing of the villous lining. 
    • Scott Adams
      Gluten-Mimicking Proteins that can affect some Celiac individuals.

      By Scott Adams · Posted

      Here are some articles on cross-reactivity and celiac disease:      
    • knitty kitty
      Terrible Neurological Symptoms

      By knitty kitty · Posted

      @HectorConvector, Here are some articles about "dry Beriberi" and neuropathy.  I hope you've been able to acquire thiamine hydrochloride or Benfotiamine.  I'm concerned.   Dry Beriberi Due to Thiamine Deficiency Associated with Peripheral Neuropathy and Wernicke's Encephalopathy Mimicking Guillain-Barré syndrome: A Case Report and Review of the Literature https://pubmed.ncbi.nlm.nih.gov/30862772/ Dry Beriberi Manifesting as Acute Inflammatory Demyelinating Polyneuropathy in a Patient With Decompensated Alcohol-Induced Cirrhosis https://pmc.ncbi.nlm.nih.gov/articles/PMC7707918/ A Rare Case of Thiamine Deficiency Leading to Dry Beriberi, Peripheral Neuropathy, and Torsades De Pointes https://pmc.ncbi.nlm.nih.gov/articles/PMC10723625/
    • cristiana
      Concerning GP advice

      By cristiana · Posted

      Good evening @EssexMum You are quite right to be concerned about this situation.  Once diagnosed as coeliac, always a coeliac, and the way to heal  is through adopting and sticking to a strict gluten diet. That said... I have travelled twice to France since my diagnosis, firstly in May 2013 and again in August 2019.   My spoken French isn't bad, and whilst there I tried my best to explain my needs to chefs and catering staff, and I read labels very carefully when shopping in supermarkets, but both times I came away with worsening gastric symptoms and pain. Interestingly,  after the second holiday, my annual coeliac review took place the following month and although I'd been very careful to avoid gluten all year, thanks to that August holiday my coeliac antibodies were elevated,  Clearly I hadn't been imagining these symptoms and they must have been caused by gluten sneaking in somehow. When I spoke to my gastroenterologist on my return, who is an excellent doctor, he told me with a smile that this was a very common experience in France among his patients, and not to worry too much about it! In fact, before we went away in May 2013, which was just after I had been formally diagnosed, he told me not to even bother trying to adopt a gluten free diet until I returned, knowing what France was like, but I was feeling so awful at that time I ignored his advice and at least tried to make a start with it. (I ought to say - both these visits were some time ago, so perhaps things are a lot better there now.) So what to do?  I would say at least try to explain to catering staff the situation - they should be able to rustle up a plate of cheese, boiled eggs, tuna, salad and fruit, and if things like crackers and gluten-free pot noodle or oats can be packed in the UK, those can be produced at mealtimes.    Of course, most larger supermarkets in France do now cater for coeliacs, but when I was last there the the choice wasn't as wide a range as we have in the UK but I think that is partly because the French like to cook from scratch, whereas our gluten-free aisles have quite a lot of dried or pre-baked goods in them/convenience foods, because I think we as a nation tend to use them more. I would be worth doing a bit of research on the internet before the trip, - the words you want are 'sans gluten'.  I've just googled 'sans gluten Disney Paris" and this came up.  I do hope at least some of this is of help. https://www.tripadvisor.co.uk/Restaurants-g2079053-zfz10992-Disneyland_Paris_Ile_de_France.html  Whatever befalls in France, at least your stepdaughter can resume her usual diet on her return. On a related tack, would you be happy to post any positive findings/tips upon her return - it might be of use to others travelling to Disneyland Paris with children in future? Cristiana
×
×
  • 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.