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Do You Have These Symptoms Too?


CeliaCelia

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CeliaCelia Newbie

I apparently don't have symptoms that appear to be celiac though I've tested positive for it. I would like to list these symptoms and ask if anyone else has them too:

extreme nausea (due to motion sickness, hypersensitivity to smell, and certain foods)

must eat every 2.5 hours or I lose mental function, have muscle weakness, and in the case of the worst incident, unable to move.

acne

VVS (women only, but I am particularly interested to know if there is a correlation between VVS and celiac disease)

lightedness that leads to temporary blackouts but NOT fainting

a feeling of hypoglycemia several times a day

susceptibility to warts

I do know that celiac presents these symptoms in me because 2-3 weeks after I started on the diet, these symptoms all cleared up.

Also--and this is something no doctor could understand, least of all me!--birth control pills (Microgestin to be exact) masked these symptoms for some reason. For about 6 years I felt I did not need to go on the celiac diet since the birth control pills kept my symptoms (except acne) at bay. But there is apparently no logical reason for this. One PT doc said that perhaps the hormones in the pills elevated my blood pressure enough to cause a physiological change in my body to make a difference.

I'd really love to hear from any folks who had any of these symptoms while NOT on the diet.

Thanks! ;)


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MySuicidalTurtle Enthusiast

Some of those sound like Celiac symptoms, but most people react differently. The wart thing may be related to a weakened immune system, but I don't know that for sure- just a guess.

I am glad your symptoms cleared up after going gluten-free!

daphniela Explorer

I've had everything but blackouts and VVS prior to going gluten fee.

caligirl2001 Newbie

Extreme nausea was one of the main symptoms of my intolerance to gluten. I still get extremely dizzy & lightheaded, even being on a gluten free diet. I have always had a problem with motion sickness. I don't know if the hypoglycemic type symptoms you describe are related to celiac or not.

CeliaCelia Newbie
Extreme nausea was one of the main symptoms of my intolerance to gluten. I still get extremely dizzy & lightheaded, even being on a gluten free diet. I have always had a problem with motion sickness. I don't know if the hypoglycemic type symptoms you describe are related to celiac or not.

Thanks to all of you thus far for your replies. About the nausea: have you ever tried the OTC medicine called meclizine? I have occasional vertigo due to a 27% ear imbalance (unrelated to celiac) and meclizine really set me back on level ground again (quite literally!). I've not tried it for regular motion sickness but I bet it might help alleviate your nausea. Just a thought.

  • 2 weeks later...
CeliaCelia Newbie

Have any others here noticed a correlation between VVS (Vulvar Vestibulitis Syndrome) and Celiac Disease?

LadyBugLuv Rookie

I've had the nausea, the acne, the warts (when I was a kid... I had a lot of them on my hands), the feeling of hypoglycemia and the need to eat every few hours...

I guess I never thought the acne or warts could be connected...

Kind of frustrated w/ acne, because you think you'd outgrow it by the time you are in your late 20's... haha.

haven't had the wart issue since I was a kid, though... but I had like 30 on my hands. it was just awful.

Don't really have these issues so much since I've gone gluten free...


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aheartsj Rookie
I apparently don't have symptoms that appear to be celiac though I've tested positive for it. I would like to list these symptoms and ask if anyone else has them too:

extreme nausea (due to motion sickness, hypersensitivity to smell, and certain foods)

must eat every 2.5 hours or I lose mental function, have muscle weakness, and in the case of the worst incident, unable to move.

acne

VVS (women only, but I am particularly interested to know if there is a correlation between VVS and celiac disease)

lightedness that leads to temporary blackouts but NOT fainting

a feeling of hypoglycemia several times a day

susceptibility to warts

I do know that celiac presents these symptoms in me because 2-3 weeks after I started on the diet, these symptoms all cleared up.

Also--and this is something no doctor could understand, least of all me!--birth control pills (Microgestin to be exact) masked these symptoms for some reason. For about 6 years I felt I did not need to go on the celiac diet since the birth control pills kept my symptoms (except acne) at bay. But there is apparently no logical reason for this. One PT doc said that perhaps the hormones in the pills elevated my blood pressure enough to cause a physiological change in my body to make a difference.

I'd really love to hear from any folks who had any of these symptoms while NOT on the diet.

Thanks! ;)

I was literally nausea for three months straight somedays I resorted to not eating at all because I had no appetite at all my first visit was to the emergency room after one month because I was so sick of being sick and after waiting for about four hours to even get seen they sent me home with nothing but a 500 dollar bill that I didnt have the money to pay for.My next visit was to the e.r. again after three straight days of not eating anything and throwing up and this time they told me you may have acid reflux they gave me a doctor appointment which was a month away and sent me home with yet another 500 dollar bill and no answers really I could have self diagnosed the acid reflux which I basically did they gave me some milk of magnesia but it was no help.I was getting sicker and I couldnt figure out why everyday I was in soooo much pain.It was to the point that even the faintest spell would make me nausea even foods and scents I liked would make me gag my boyfriend couldnt understand it he kept telling me how does even the smell of something good make you so nausea but i couldnt understand either.To shorten this I finally went to a private doctor and was diagnosed with celiac disease IBS acid reflux and was set up for an endoscopy when I got the results I was told not only did I have celiac disease acid reflux and IBS but also a list of other stomach issues.The doctor told me my stomach and esophagus were severly inflamed most likley caused by the acid reflux and other stomach problems he prescribed me something called KAPIDEX and I began taking them the next day and instantly I felt better yes my stomach still felt very sore but finally after almost four months no more constant nausea no more gagging at every single thing I smelled finally some sort of relief that in conjuction with eating gluten free has helped a lot.My problem now though..I have completley lost my appetite yesterday was the most food i had eaten in 6 days and thats not saying much since it was only a few pieces of watermelon but luckily I am able to keep drinking..gatorade has been my savior..:-)..Maybe you should think of having an endoscopy if you havent already there might be something else wrong in your stomach or you may be allergic to soy of dairy as a lot of celiacs become lactose intolerant..hope you feel better..(sorry it was so long))

karen McIntosh Newbie

I too had all those symptoms as a kid - my mother told me I was a celiac baby, but no one told me (or my parents) that I would have to be on a special gluten-free diet my whole life - unless my parents ignored the fact! In my late 40s I had so many severe symptoms, and like you experienced severe acid reflux, stomach and diarrhea issues and nausea. I finally went and had the blood test after suggesting to my doctor after many inconclusive "nasty" tests that maybe that was the issue - surprise.......it was positive and as soon as I adopted the gluten-free diet I felt much better and many of the symptoms lessened. However due to the frustration of worrying about every single thing I put in my mouth I often get "glutened" and still suffer from constant diarrhea with I will have to get under control. If anyone knows of a decent "cleansing" regimen I can go on for a short period to get back to "normal" I would appreciate all suggestions.

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    • Rogol72
      Hey @Butch68, I also have dermatitis herpetiformis but don't suffer from it anymore. I used to drink Guinness too but I drink Cider now when out on social occasions. I assume you are in Ireland or the UK. If it's any good to you ... 9 White Deer based in Cork brew a range of gluten-free products including a gluten-free Stout. I'm not sure if they are certified though. https://www.9whitedeer.ie/ I haven't come across any certified gluten-free stouts this side of the pond.
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      This is a very common question, and the most important thing to know is that no, Guinness is not considered safe for individuals with coeliac disease. While it's fascinating to hear anecdotes from other coeliacs who can drink it without immediate issues, this is a risky exception rather than the rule. The core issue is that Guinness is brewed from barley, which contains gluten, and the standard brewing process does not remove the gluten protein to a level safe for coeliacs (below 20ppm). For someone like you who experiences dermatitis herpetiformis, the reaction is particularly significant. DH is triggered by gluten ingestion, even without immediate gastrointestinal symptoms. So, while you may not feel an instant stomach upset, drinking a gluten-containing beer like Guinness could very well provoke a flare-up of your skin condition days later. It would be a gamble with a potentially uncomfortable and long-lasting consequence. Fortunately, there are excellent, certified gluten-free stouts available now that can provide a safe and satisfying alternative without the risk.
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      Interestingly, this thought occurred to me last night. I did find that there are studies investigating whether vitamin D deficiency can actually trigger celiac disease.  Source: National Institutes of Health https://pmc.ncbi.nlm.nih.gov/articles/PMC7231074/ 
    • Butch68
      Before being diagnosed coeliac I used to love Guinness. Being made from barley it should be something a coeliac shouldn’t drink. But taking to another coeliac and they can drink it with no ill effects and have heard of others who can drink it too.  is this everyone’s experience?  Can I drink it?  I get dermatitis herpetiformis and don’t get instant reactions to gluten so can’t try it to see for myself. 
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      NCGS does not cause damage to the small bowel villi so, if indeed you were not skimping on gluten when you had the antibody blood testing done, it is likely you have celiac disease.
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