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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 Symptoms Did You Not Even Realize Were Symptoms?
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29 posts in this topic

I think I'm at the very beginning of this process, so I'm kind of trying to get a feel for where everyone else started out. I've felt subpar for quite awhile, but I don't know that I'd go all the way to calling most of the little annoyances "symptoms". I'm sitting on a bunch of "mild" diagnoses (narcolepsy without cataplexy, vertigo/Meniere's, IBS) and I'm wondering if I should really be so bold as to hope this could fix them all.

From what I understand, it's usually something like digestive problems (loose stools, bloating, stomach pains, reflux) that convinces a doctor to check for celiac/gluten intolerance (not sure I know the difference yet), but once someone stops eating gluten, a whole bunch of other things get better as well.

What other ways has your health improved that have surprised you or that you weren't expecting when you first eliminated gluten?

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The most surprising for me was my daughter's gag reflex going away. She is finally able to eat yogurt and mashed potatoes without throwing up:)

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At the time I did not realize it but I strongly suspect that all my miscarriages were due to celiac disease. My tooth enamel is much stronger than six months ago (had dental appointment last week). My teeth are no longer sensitive at all. I also used to have ridges in my fingernails and they are now smooth so I am absorbing nutrients properly! :)

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My brain fog and low stamina went away. I knew nothing about celiac - except it was a "stomach thing". I attributed those symptoms to Hashis. My hands got steadier - had no idea gluten did that.

Ironically, I struggled with C a long time (again, assumed thyroid) and now I'm having a hard time determining normal potty routines because I have no frame of reference. life was C or D - no in between. I'm having a lot of in between, and quite frankly don't know what to do with it.

Also, my eyesight changed. Dint know if it's better or worse because I haven't been to the dr. yet - but it is different.

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Are there any medical conditions that aren't on that list? Whoa...

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Bipolar illness and canker sores in my mouth were my surprises.

The list is so long because vitamin, mineral, and trace element deficiency can really mess people up!

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At the time I did not realize it but I strongly suspect that all my miscarriages were due to celiac disease. My tooth enamel is much stronger than six months ago (had dental appointment last week). My teeth are no longer sensitive at all. I also used to have ridges in my fingernails and they are now smooth so I am absorbing nutrients properly! :)

Never thought about the tooth enamel. I am soo new to this. I have very sensitive teeth. And the nails thing. Wow!!! Things just keep adding up.

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The extreme mood changes before my period. My husband would comment that I was a whole different person and down right not fit to be around. In the past I wasn't like that. Since gluten free it is no longer an issue.

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I had suffered from chronic pain in my neck and around the base of my skull since a car accident some 9 years ago. This pain vanished 24 hours after going gluten free and has not returned. A recent blood test had also shown post-menopausal levels of estrogen (the level was extremely low). My cycle restarted shortly after going gluten free. I also haven't had any migraines in the last month of being gluten free, which I had also not expected.

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I was just happy to get rid of a constant D that even would wake me out of a sound sleep but was surprised when I stopped getting migraines, my off and on depression ended, I was eventually able to walk unaided, my kidney problems resolved and my arthritis that was so bad I couldn't hold a cup, pen or at times walk resolved, I became able to speak normally and remember things like the names of objects and strings of numbers, my skin rashes went away, my asthma and chronic broncitis went away along with most of my allergies and even after almost 9 years I never catch a cold or virus (knock wood). It amazes me even now how many systems can be impacted.

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I learned how to spell diarrhea.

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I learned how to spell diarrhea.

LOL true story !!

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I learned how to spell diarrhea.

....and dermatitis herpetiformis!

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Looking back now I think several things were clues: mono twice as a child, continual infections with acne as a teen, being able to peel off layers of my nails, repeated strep throat thru 20's and 30's, lifelong anemia, then came the migraine headaches, blurred and sometimes double vision, constantly tired thinking it was a light deprivation problem, stomach stuff that I couldn't pinpoint. All the while docs telling me it was age, and told there was nothing wrong, no tests ran. It wasn't til I landed in ER sicker than a dog that docs started realizing something was going on.

What was first thought of as parathyroidism has proved itself to be celiac. My blood calcium levels were above high without taking supplements before I went off glutens which is a good indicator that my parathyroids are messed up. Then low and behold, I went off glutens and my calcium levels dropped to borderline low levels which is absolutely amazing and pretty much summed up and more questions for the docs. That pretty much sealed my diagnosis, as if I were not Celiac and had gone on a gluten-free diet and had parathyroid disease my calcium would have continued to rise.

It's taken a long time as my system was a mess but I finally feel like I am getting my life back!

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I didn't realize that my unexplained migraines and unexplained depression as a teen were most likely the first signs that I had celiacs. Even then I was only diagnosed because my GI doctor couldn't figure out why I had constant side pain and some random GI symptoms. The doc said "I don't think you have this but I have nothing else I can test you for" and even he was a little baffled when they blood work came back positive.

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I also think my infertility and miscarriages were indirectly caused by Celiac. After the third one I was tested for various things that cause miscarriage and had the AntiPhospholipid Antibody Syndrome (an autoimmune syndrome) test come back faintly positive. On my next (and last) pregnancy I injected myself with blood thinners every day and had a succesful pregnancy. The autoimmune disorders are all so closely tied together, perhaps the celiac triggered the APAS.

The most unexpected results I have had have been the return of my libido and the lessening of my PMS symptoms. I don't vomit when I ovulate or when I have my period anymore. My breasts don't ache to the point where I can't wear a bra for almost 2 weeks and my night sweats aren't as severe. Obviously there has been a major evening out of hormones for me.

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vertigo, ear aches, and headaches are gone. I used to get sick constantly, nearly every month. I have had one cold in 2 years of being gluten-free. Carpal tunnel and plantar fasciitis went away. Numbness in toe went away. Nerve pain in both arms, and down both legs is completely gone. A little twinge left in my neck if I hit it wrong, but it is steadily improving, so I have faith that it'll go away eventually, too.

Injuries that never quite healed finally did. I had a bum knee, a bum ankle, and a couple teeth that never recovered from having cavities filled. All are better now.

Depression disappeared. Insomnia went away, and so did that exhausted feeling in the mornings.

I used to feel overwhelmed by sounds and touch in a crowd, get really irritable and just want to scream and get somewhere that no one could talk to me or touch me. Lights at night were very harsh and too bright. I loved sweet things and anything bitter was extremely unpleasant. That all changed. My senses seem to go a bit hyper on me if I get 'glutened.' Without gluten, though, crowds aren't a big deal, the taste of food is different and less bitter, and night time lights are not a big deal. That one really floored me - so weird!

I used to feel the urge to pee all the time, and that left, too. At first I thought maybe I finally healed up a low grade infection, but it pops back into being every time I get glutened, so I'm thinking it's a symptom for me, too.

Memory issues and ADHD like concentration went away. The anxiety that used to make social occasions much more painful is now gone, too.

Honest to god, huge aspects of myself, from what I liked and what bothered me, to how I thought my body 'just was,' have turned out to be the results of gluten. I feel like a totally different person since the diet.

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This can affect your teeth? Oh my. I am newly diagnosed and the last few weeks I am noticing my teeth are VERY sensitive.

I have numbness in my hands and feet. Its driving me crazy! I really hope this is also part of it and it goes away.

My body literally 'crashed' the end of June (long story) and since being on a gluten-free diet for 4 weeks I am already doing SOOOO much better.

I miss my energy. The vertigo was awful.

Ok, rambled enough. Thanks for listening.

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This can affect your teeth? Oh my. I am newly diagnosed and the last few weeks I am noticing my teeth are VERY sensitive.

I have numbness in my hands and feet. Its driving me crazy! I really hope this is also part of it and it goes away.

My body literally 'crashed' the end of June (long story) and since being on a gluten-free diet for 4 weeks I am already doing SOOOO much better.

I miss my energy. The vertigo was awful.

Ok, rambled enough. Thanks for listening.

It sure affected my teeth. They have been sensitive for years and to be honest I thought nothing of it. So what? But about two months ago (after being gluten-free four months) I noticed no zaps whilst eating a popsicle. Now neither hot nor cold bother them whatsoever. A small perk, but I'll take it! :)

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I had suffered from chronic pain in my neck and around the base of my skull since a car accident some 9 years ago. This pain vanished 24 hours after going gluten free and has not returned. A recent blood test had also shown post-menopausal levels of estrogen (the level was extremely low). My cycle restarted shortly after going gluten free. I also haven't had any migraines in the last month of being gluten free, which I had also not expected.

Wow - that is incredible! I would do ANYTHING to alleviate my severe chronic and debilitating pain. I've been strictly gluten free for six months, dairy free maybe five weeks and soy free a few weeks and my back has, in fact, become progressively worse (when I didn't think that was even possible). Consequently my chronic insomnia is running rampant as well. It would be a miracle even if my pain decreased by 30%. One can always hope! :)

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I used to feel overwhelmed by sounds and touch in a crowd, get really irritable and just want to scream and get somewhere that no one could talk to me or touch me. Lights at night were very harsh and too bright. I loved sweet things and anything bitter was extremely unpleasant. That all changed. My senses seem to go a bit hyper on me if I get 'glutened.' Without gluten, though, crowds aren't a big deal, the taste of food is different and less bitter, and night time lights are not a big deal. That one really floored me - so weird!

That describes my experience as well. Any noises, lights, people, sounds... they used to drive me crazy, to the point I would either run away or zone out to avoid the overload.

I also was surprised to find my migraines, which were accompanied by nearly constant vomiting for 20+hours, disappeared. My mood improved, and my nails and hair are stronger and healthier.

Also, I've got a bigger butt, too. I still have a "pancake butt" as one of my friends calls it, but it has grown a bit bigger since going gluten free. I don't look as strange anymore. ;)

The numbness in my arms and hands has gone away, as have the muscle cramps in my feet and legs. My hands and feet don't get as cold anymore. And my knees and ankles have stopped "popping" and "cracking" as much (still happens every once in a while, but before it was almost constant).

This is all in addition to my chronic D, dizziness if I closed my eyes, skin rashes, acne, bloating, stomach aches, constant headaches...

And I wasn't even diagnosed by a doctor. I discovered all of this by deciding to try an elimination diet.

Go figure!

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Love2travel - I am sorry you are suffering such pain. It really makes things hard. I see from your signature that you developed conditions which are not as fixable as mine. Most of my spinal pain after the accident was alleviated by physical therapy, but I didn't really get a grip on it until I found a PT who adapted pilates exercises, and this has been something I have kept up, with just my neck/head remaining stubbornly painful. However this year I developed shoulder problems and systemic inflammation which I now know was worsening celiac symptoms. These problems prevented me from obtaining any benefit from exercising, no matter how gentle, as I was just too sore and stiff. I hope that soon I can get back to it, but don't feel up to it just yet.

BTW I saw on another thread that you spend time in Croatia. We went there on holiday this year and loved it! It is just so beautiful. Best wishes.

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Love2travel - I am sorry you are suffering such pain. It really makes things hard. I see from your signature that you developed conditions which are not as fixable as mine. Most of my spinal pain after the accident was alleviated by physical therapy, but I didn't really get a grip on it until I found a PT who adapted pilates exercises, and this has been something I have kept up, with just my neck/head remaining stubbornly painful. However this year I developed shoulder problems and systemic inflammation which I now know was worsening celiac symptoms. These problems prevented me from obtaining any benefit from exercising, no matter how gentle, as I was just too sore and stiff. I hope that soon I can get back to it, but don't feel up to it just yet.

BTW I saw on another thread that you spend time in Croatia. We went there on holiday this year and loved it! It is just so beautiful. Best wishes.

Thanks, Gail. I am in the middle of nearly agonizing pain at the moment - I cannot walk on my own, nor can I sit. My SI joint is out and keeps popping out nearly daily. We are to leave for our house in Croatia next Saturday so I am in a panic. Plus my sister who has never been to Europe before is to come with us - she got her passport, bought luggage, clothes, etc. just for the trip and cannot go at any other time. So, we had the talk today - I told her it is highly unlikely we will be going and she is devastated and I do not blame her. Glad you were able to spend time there - we love it so much! Our house is in Istria, just a 3-hour drive from Venice.

It is SO hard when desperate pain prevents one from doing things. I cannot tell you how much I anticipated this trip and not being able to go is difficult mentally. It is what I look forward to most.

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I used to get random blurry vision, especially at night. I couldn't watch TV, read, or even see the computer screen. This totally went away when I went gluten-free. I got gluttened last night, and one of my first symptoms was blurry vision!! Now I know! :rolleyes:

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    • A good diet for avoiding type 2 diabetes
      Hi cristiana, The paleo diet and the ketogenic diet would probably be helpful to read up on.  Snack on protein, not sugar and carbs.  You should have protein with every meal.  Protein reduces the meal total glycemic index and lengthens the time before you feel hungry again.   Sugar and carbs shorten the time to feeling hungry again. Or you could just ignore the whole thing and eat lots of sugary foods and carbs like my brother does.  And go half blind and have joint pain and nerve pain.  Those sugary snacks are a poor trade for your health.  
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