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      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.

***what Problems Did You Have After Having Mono?****
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12 posts in this topic

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.

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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:

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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.

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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

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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.

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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

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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

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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.

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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

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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! :)

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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.

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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.

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    • I am very interested in this too. My daughter tested negative for celiac, but has terrible primarily neurological symptoms. Because she tested positive for SIBO at the time and was having some GI symptoms, I was told it was just a Fodmap issue.  I knew better and we have been gluten free for 2 years.  Fast forward to this February. She had a SIBO recurrence that I treated at home with diet and herbal antibiotics because I couldn't get the insurance referral. She was doing great. Then stupid me brought in gluten containing chick feed for the new baby chicks we got.   Feed dust everywhere. Total mess.  Really, no GI symptoms (she was SIBO free by then)...but the neurological symptoms! my daughter couldn't walk for three days. Burning down one leg, nerve pain in the foot. Also heaviness of limbs, headache and fatigue. Better after three days. But unfortunately she had a TINY gluten exposure at that three day mark and had another severe reaction: loss of balance, loss of feeling in her back and arms, couldn't see for a few seconds, and three days of hand numbness, fatigue, concentration problems.  Well, I actually contacted Dr. Hadjivassilou by email and he confirmed that the symptoms are consistent with gluten ataxia but any testing would require a gluten challenge. Even with these exposures, antibodies would not be high enough.  His suggestion was maintain vigilance gluten free.  I just saw my daughter's GI at U of C and she really only recognizes celiac disease and neurological complications of that. But my impression is that gluten ataxia is another branch in the autoimmune side of things (with celiac and DH being the other two).   At this point, I know a diagnosis is important. But I don't know how to get there. We homeschool right now so I can give her time to heal when she is accidentally glutened, I can keep my home safe for her (ugh, that I didn't think of the chicken feed!)  But at some point, she is going to be in college, needing to take exams, and totally incapacitated because of an exposure.  And doctors state side that are worth seeing?  Who is looking at gluten ataxia in the US?
    • Caro..............monitoring only the TSH to gauge thyroid function is what endo's do who don' t do a good job of managing thyroid disease.  They should do the full panel and check the actual thyroid hormone numbers.........T3 and T4. The importance of the TSH comes second to hormone levels. In order to track how severely the thyroid is under attack, you need to track antibody levels.......not the TSH. I did not stay with endocrinologists because I found they did not do a very good job and found much greater help and results with a functional medicine MD.  You should not have a goiter if your thyroid is functioning well and your TSH is "normal".  Maybe they should do a full panel? Going gluten free can have a profound affect for the better on thyroid function and that is something that is becoming more and more accepted today.  Ask most people with Celiac and thyroid disease and they will tell you that. My thyroid never functioned well or was under control under after I discovered I had Celiac and went gluten free.  It was the only way I got my antibody numbers back down close to normal and they were around 1200 when it was diagnosed with Celiac.  I was diagnosed with Hashi's long before the Celiac diagnosis.  I am not sure Vitamin D has anything to do with thyroid antibodies but who knows?  Maybe it does have an affect for the better. It is really hard to get Vitmain D levels up, depending on where you live. Mine are going up, slowly, even after 12 years gluten-free but I live in the Northeast in the US and we don't have sun levels like they do in the South.  I take 5,000 IU daily and that is a safe level to take, believe it or not.  I get no sun on my job so the large dose it is! Having Celiac Disease should not stop you from being able to travel, especially S. America. I travel, although I do agree that some countries might be very difficult to be gluten free in. You can be a foodie and travel with Celiac so no worries on that front. You may not be able to sample from someone else's plate, unless they are eating gluten-free too but I have had awesome experiences with food when traveling so you can too!
    • I don't know what you drank or where.... so here are a few thoughts. - sure, a dive bar might have dirty glasses and serve a cocktail in a beer glass?  But a nice reminder place, with a dishwasher, should be fine.  If it's a sketchy place, Stick to wine, then it's served in wine glasses that aren't used for beer or bottled ciders in the bottle.   - ciders on tap might, just a slight chance, have an issue.  Because of beer on tap, mixed up lines, etc. - you may have a problem with alcohol - you may have issues with The  high sugar content of the drink.  I know I have similar issues if I drink serveral ciders of extra sugary brands - are you positive it was a gluten-free drink?  Not this " redds Apple" pretending to be a cider - it's beer with apple flavor.  Or one of those " gluten removed " beers?  
    • Hi Stephanie, I'm also from the UK, I've found this site more helpful than anything we have!  As already mentioned above, in my experience it could depend on what and where you were drinking. Gluten free food and drink isn't always (not usually) 100% gluten free as you may know, maybe you have become more sensitive to even a trace of gluten that is probably in gluten free food/drink. Is it possible you have a problem with corn, particularly high fructose corn syrup that is in a lot of alcoholic drinks? This was a big problem for me and the only alcoholic drinks I can tolerate are William Chase vodka and gin. I contacted the company last year and all their drinks are 100% gluten and corn free, made the old fashioned way with no additives, so maybe try their products if you like the occasional drink and see how you get on. If you drink out, not many pubs sell their products but I know Wetherspoons do and smaller wine bars may too. l was never a spirit drinker but I must say their products are absolutely lovely! Very easy on a compromised gut too considering it's alcohol. I second the suggestion on seeing a natural health practitioner. I've recently started seeing a medical herbalist, as I've got nowhere with my now many food intolerances since going gluten free last year and I've noticed a difference in my health already. 
    • Sorry for the very late reply and thanks for the replies, I didn't get a notification of any. In case anyone else comes across this and has been wondering the same as I was, I did try a vegetable broth and I did react to it in the same way as if I'd eaten the vegetables.  As for the candida, I've been using coconut oil and am seeing a medical herbalist for this and leaky gut. It's only been a few weeks but I've noticed an improvement all round.
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