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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 Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease?  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 What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes
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Dizziness/vertigo

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I experience dizziness / vertigo every few months or so.. usually lasts for a few days, but I can't figure out from what. I'm not hypoglycemic, do not have low blood pressure or an ear infection. Does this happen to anyone else?

Gretchen

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I had severe vertigo before I went gluten-free. I still have some small spells every once in awhile. I wonder if it is from accidental gluten ingestion?

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So, I'm not the only one! I'm not gluten-free yet, and when it does happen, it's pretty bad where I've got to hold onto things.

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this def happens to me as well.. I've been gluten free for 3 yrs and it happens. good to know i'm not the only one :D

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I have them also. I spent the last few days feeling very dizzy, and after a while I start to get a sort of nausea (like motion sickness) from it. I used to think I was hypoglycemic, but was told I wasn't. I've gotten these for at least half my life, and still get them gluten-free. I seem to notice that around the time it happens I am not eating a very balanced diet. I make a conscious effort to get enough protein and fresh fruits and veggies. I haven't figured out if it helps or not, but at least none of us are alone in this, right?! This is about how I feel when I get this way... :wacko:

Anyone notice that we are all women, those of us that are complaining about the dizziness. Maybe it is hormonal? Are there any men who also get this? Might be interesting to find out.

God bless,

Mariann

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Mariann,

Lucky me wakes up this morning with it. I'm going to start marking my calendar for when it happens so I can see if it's hormonally-related. Strange thing is.. that it only started happening this year (which makes sense, as my symptoms starting changing this year). All I can say is that I felt gross, so I loaded up on some sugar to see if that helps (sweet tea & a Snickers). Who knows, it might be too much sugar.. and I might be having the hypoglycemic attack that other celiacs have. I had a big bowl of ice cream before I went to bed last night. Maybe the sweet tea & Snickers weren't a very good idea... I'll know later!

I too get the motion-sickness thing.... ewwww

http://www.glutenfreeforum.com/index.php?showtopic=1011

Gretchen

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Interesting subject...I'm a male, and have been gluten-free since March 2004 (except for 2 cross contaminations). For the past month, I have noticed that if I remain seated w/o moving for an extended period of time, like when I'm reading your posts, then I start to feel dizzy. Over a year ago, I was taking prednisone, which caused me to have diabetes, and I had to take medication for it. The diabetes is now resolved after stopping the prednisone. I periodically check my blood sugar, and it is in the low 90's. I think that my body is still in the process of readjusting to the gluten-free diet. Thanx for bringing up this subject.

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I also get vertigo.....

It is particularly bad for me in the car when I have to look over my shoulder to talk to the kids...... WOW! My world spins!!

Karen

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I, too, woke up with vertigo this morning. I am standing and I feel like I am going to fall over. The hardest part is to not nod when talking to someone! I was thinking it may be because it is "that time" and maybe I am low on something like iron? I am going to see my gyno tomorrow, right now she is the only doctor I trust, and see what she thinks.

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Janine,

Did your doctor have any insight? I just saw my (former) GI doctor recently and forgot to mention this problem. It's such a weird feeling and is a little scary.... it's occuring more and more frequently. I'm going to see my PCP this afternoon to get my blood sugar checked... it usually comes back fine on the blood tests, but I'll ask for a monitor or something. I'll let you know what I find out.

Gretchen

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I think I may know what is causing it. I took a prescription water pill that is generic and one of the ingredients is starch but I have to check with the pharmacy to see if they know what kind. I am also starting hormone therapy.

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I think I may know what is causing it.
Yeah, Janine.. I hope so!!

I went to my PCP, but he was out today and the sub has no idea what's causing this vertigo issue :( I will now have to wait for the specialist in October. I've read of the connection of celiac & meniere's (one of the symptoms is vertigo)... apparently it's inner-ear related. It could also be my wisdom teeth, but they haven't ever bothered me. I'm just brainstorming... I have no idea what's causing this.

Ok.. I have an update: the doctor (the pcp who was out today) called my home# this evening (can you believe that he took my chart home to review? :blink: ) and wants me to do a cbc, sed rate & glucose, thyroid check tomorrow morning... Saturday. Knowing my blood, it will show nothing unusual and he'll think I'm a hypochondriac :lol:

Gretchen

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I have been gluten-free for almost 3 years and I am still having new strange things happen to me. I often fell dizzy or like I'm in a fog and I wonder if it is related to inner ear trouble.

However, a month or so ago, I quite suddenly, like a switch being turned on, felt like I was going crazy. I wouldn't call it depression. This lasted for 5 or 6 hours. I normally feel like someone in total control.....but this was very scarey.

I thought it might have something to do with eating too much starch and not processing it properly.

Well it happened again a few days ago.

I wonder what is happen to me.

Any ideas. :(

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Rod,

Had that ever happened before? I attribute a lot of my "weirdness" on fatigue or hormones, but I'm sure there are other factors involved at times. Everyone here has a different reaction when they ingest gluten and your's could just be in this manner. You don't need to answer this, but are (or were) you under a lot of stress at the time you experienced the trouble? Our bodies are fighting hard enough to stay well and sometimes stress will throw us over the edge. I know that dizziness is a symptom of celiac disease, but I really do like to make sure there's nothing else contributing. Do you have a good relationship with your doctor that you could possibly mention the issue you're having? Was your "craziness" more like edginess or was it worse? Did you have any other symptoms, like shakiness, sweating, etc?

But, one thing's for sure.. you're not alone.. I'd rather have a massive stomach ache than feel cloudy/dizzy/crazy in the head!!

Gretchen

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Your right on there. I can deal with the stomach. But not the head stuff.

The "craziness" seemed to run the whole gambit of paranoia, suicide, depression.

I am planning to see my GP to get a referral to an eye-ear-nose specialist,

physologist and hopefully a cat-scan.

I literally want my head examined.

I want to rule out everything and my doctor has been terrific in following up.

The only thing I can really relate to both times is that my stomach was acting up a bit in the days leading up. So maybe my immune system was low.

Although I still think the lack of being able to process starch had something to do with it. I read a book a few years ago called "Breaking the viscious cycle" that refers to the starch problem.

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There is absolutely no shame in an attempt to find answers... I remember that when I need to talk with my doctor about things like this.

I get the same symptoms that you do... I get the "spooks" now and then, and all I've known to help with that is a good night's rest. I'm in no way sleep deprived, but I just seem to need a lot. I'm trying to piece together what symptoms correspond to what my diet is consisting of... it's difficult, as you can see by my latest attempt to find out where this vertigo is coming from. Now, I've heard that undigested gluten proteins act like morphine in our bloodstream... now, that would explain a lot. I'm not gluten-free yet since I'm still getting tests run so I can't even tell yet if all of these symptoms will improve on a gluten-free diet. However, I'd see if a gluten (even an accidental trace) might be the cause of your symptoms. But, good luck with it all and I hope you're feeling better soon.

Gretchen

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Thanks very much!

I hope you have support like I do at home.

My wife is amazing.

Best of luck in your own journey.

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That dizzy/nauseaous/funny-headed feeling is my main symptom of gluten contamination. Turns out it's also my primary symptom of casein ingestion as well (delayed reaction, takes nearly exactly 2 hours). Try eliminating dairy as see if that helps? (Both gluten and casein proteins are similar in that if they're not properly digested, what's "left over" can act as opiates in the brain. I wondered why the feeling was familiar... it was like when I had codeine (painkillers) for a broken leg!! :-) )

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I too get vertigo like symptoms, but haven't associated it with celiac disease. My doctor says it is BPPV where crystals of calcium carbonate get trapped in the inner ear rather than desolving or passing through. I have learned to control it to some extent. I don't move my head to the right (a trigger for me) but move my whole body, I don't roll over in bed but move to a sitting up position first. I have gotten used to kneeling down rather than looking down and using a small ladder as opposed to looking up, when possible. I was in the dentist chair the other day where the dentist was to my right and just that slight turn of my head brought it on. If it gets bad I will sleep in a chair, but that hasn't happened for sometime.

Here is a website that has a pretty good explaination:

http://www.dizziness-and-balance.com/disor.../bppv/bppv.html

It is a miserable feeling and you can get therapy for it to teach you how to control it. I just sort of learned by trial and error. I suppose it could in some remote way be related to malabsorption of calcium.

DK

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My labs are back already (I had them done on Saturday!!).. talk about quick! And guess what??.. they're all normal. <_<

He checked a bunch of things (did a complete metabolic panel, thyroid, glucose, iron, etc).. and I'm not pregnant. Soooo... I am resolved to believe this vertigo is a gluten-related reaction.

I hate gluten :angry: I'd be soooo healthy if I didn't have a gluten issue!! But, now I'm getting excited at how good I can be feeling when I go gluten-free.. I'm going to feel like superwoman!!

Gretchen

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Wow - I have been having problems with dizzyness for a couple of years now and have not been able to attibute it to anything. Maybe now that gluten-free this will go away. I have been lactose/casean free for 4+ years.

Does anyone run a low-grade fever for no apparent reason (for up to a week)?

I have been hospitalized, tested, etc. with no reason for the fever. They finally released me when the fever went away on its own. After that, I stopped mentioning this to my GP. My allergist said to just take Tylenol until the fever goes away. However, I have yet been able to tie this to anything and one doc suggested I see a specialist for Rhumatoid Arthritis for this (I only have minimal arthritis since 25 years old - now 38) so that didn't make much sense and I have not made the appointment yet. Thanks...

-Kate

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In regards to the fever, has your doctor ruled out Inflamatory Bowel Disease (IBD) and lupus? Just wondering. Also, it's not uncommon to have that with celiac.

Do you currently see a GI specialist?

My dizziness only started over the past 6 months or so.. apparently is a common symptom in celiac disease.

Gretchen

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I have a GI specialist but have not seen him recenly. He diagnosed me several years ago with IBS and Lupus is in both sides of my family but I have not seen anyone for that yet. I wondered about Lupus; a lot of my symptoms match those and are just as hard to pinpoint to a specific problem.

The fever is not horrible, just draining and not much fun.

-Kate

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Hello Kate,

I probably wouldn't be too bad of an idea to make a visit to your GI to rule out lupus, since it's in the bloodline. They can simply do an ANA test (auto-nuclear), which is a blood test. It's in my family too, so when I was getting tested for celiac I asked them to check this too. My ANA was negative. But it is nice to get things ruled out if you can.

Good luck and keep us posted!

Gretchen

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Oddly enough, speaking of fevers, until I went gluten-free, I almost NEVER had a fever. The first time I got seriously sick after being gluten-free for a while, I had a nasty flu, and a NASTY fever (>101 for >5 days), but I didn't realize that I should have called my doctor after the second or third day, or how much fever-reducers I needed to take. I always had my temperature FALL when I was sick and eating gluten...

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