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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.

Random Bouts Of Dizziness/loss Of Balance
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I have still be struggling with the gluten free diet but have been gluten free for the last 3 days. But today I feel TERRRRRRRRIBLE I had a gluten free pizza but after walking home I dizzy when i turn my head quickly as I did to check for cars on my walk home I got a vertigo like feeling. And when i place my feet I feel vulnerable like they wont go where I want them too because I feel dizzy.

In the last year or so I have had two other experiences like this, both are when I have been overtired or up in excess of 28hrs or so.

I have been diagnosed for a 1 year. 22 years old currently and male. I carry some weight to so maybe it could be related to that <_< Anyone else experienced this.

I bought b12 vitamins just because I thought i may help. It comes from nowhere!

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And when i place my feet I feel vulnerable like they wont go where I want them to . ..

This part sounds like ataxia.

Was the gluten-free pizza at a restaurant? CC might be hard to avoid.

P.S. I see Melbourne right NOW - Rafa vs Roger.

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The vitamin B12 is a very good idea. Just make sure it's methylcobalamin, sublingual, and take at least 3mg per day. It may also be advisable to ask a doctor for a shot or two, in order to get your levels up more quickly. The blood test is simple enough, and although it isn't always accurate, in the case of extreme deficiency, I'd hope it would show up.

Other deficiencies should not be overlooked, such as B-complex, vitamin D3, and minerals including potassium and other electrolytes.

As was mentioned, CC could have occurred, but you know your body better than anyone else, and what symptoms to expect. However, it is not uncommon for new symptoms to show up after going gluten-free, when CC occurs.

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My symptoms included walking like I was drunk, when I hadn't had a drink in months, and other neuro symptoms from a B12 deficiency. It is very common for Celiacs to be deficient in this and other vitamins, Vitamin D too.

It is well worth the effort to have your doctor do the blood work to check your vitamin and mineral levels.

Of course, if you had the gluten free pizza out somewhere there is always the chance of cross contamination. :(

I hope you feel better soon. :)

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What is CC guys?

I hadn't taken my vitamins for 3 days and now I have taken them again

I take daily most of the time when I am not lazy: d, multi, b12, fish oil

Yes Rafa V Roger was just one... I and most other Australians really like Roger Federer it was so sad to see him overcome with grief from his loss, bu Nadal is a terrific champ.

I took my vitamins and the dizziness has actually gone away. Do vitamin levals drop when your in a state of sleep depravation?

Minimal sleep last night and I am noticing I get these sort of symptoms when I have not slept adequate levals but sometimes when out, or when there is much to do its simply impossible to sleep for too much

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I was going through the exact same thing and I think I know exactly what you're talking about. It used to happen to me all the time, to the point where I could not do anything. Try removing all dairy from your diet for at least one week. See if you notice a difference.

It might just be a coincidence that you felt like crap after eating pizza (cheese).

It could just be lactose intolerance but in my case, I believe it's a milk allergy, most likely casein - a protein in milk. Let me know if this helps. Good luck

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Did you (or anyone else) have dizzy/vertigo spells before they were diagnosed with celiac? In the past couple years I have had a few incidents of mild constant vertigo and a couple serious dizzy spells, though they seem to be caused by sudden elevations of humidity, heat and air pressure. I spent nearly a month feeling dizzy while I was in Japan during the summer (extremely humid), and have had a couple heat-related dizzy spells. I've put it down to dehydration. But could people with undiagnosed celiac be prone to these conditions??? I could be completely off base, but what do you think?

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Did you (or anyone else) have dizzy/vertigo spells before they were diagnosed with celiac? In the past couple years I have had a few incidents of mild constant vertigo and a couple serious dizzy spells, though they seem to be caused by sudden elevations of humidity, heat and air pressure. I spent nearly a month feeling dizzy while I was in Japan during the summer (extremely humid), and have had a couple heat-related dizzy spells. I've put it down to dehydration. But could people with undiagnosed celiac be prone to these conditions??? I could be completely off base, but what do you think?

I used to get almost constant sinus infections and ear pressure before going gluten-free. I always blamed that on hayfever before but I think gluten was the real cause of both my infections and balance probs. I've had some more recent episodes of starting to pass out that have cleared up. I blame those on my thyroid cyst that I think was compressing my carotid artery. Just a theory. I also had bad balance problems when I was taking HCTZ hypertension meds recently but they cleared up when I stopped that stuff and cut out most salt from my diet.. My blood pressure stayed much lower after cutting out the salt too. Of courser then again I had lots of problems due to something in wine that caused my feet and ankles to swell and other bad things to happen like not being able to sleep. Dairy does the sleep thing to me also.

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Did you (or anyone else) have dizzy/vertigo spells before they were diagnosed with celiac? In the past couple years I have had a few incidents of mild constant vertigo and a couple serious dizzy spells, though they seem to be caused by sudden elevations of humidity, heat and air pressure. I spent nearly a month feeling dizzy while I was in Japan during the summer (extremely humid), and have had a couple heat-related dizzy spells. I've put it down to dehydration. But could people with undiagnosed celiac be prone to these conditions??? I could be completely off base, but what do you think?

I had a terrible spell of vertigo for 6 months, which resolved spontaneously. Don't think gluten related. The one symptom that was definitely related was dizziness and fainting from gas and bloating pressure. Haven't had this happen since gluten free. (I have always felt faint when I get too hot; don't relate this to gluten though.) I guess I am just a dizzy kind of person--must be because I am blonde :lol:

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I have still be struggling with the gluten free diet but have been gluten free for the last 3 days. But today I feel TERRRRRRRRIBLE I had a gluten free pizza but after walking home I dizzy when i turn my head quickly as I did to check for cars on my walk home I got a vertigo like feeling. And when i place my feet I feel vulnerable like they wont go where I want them too because I feel dizzy.

In the last year or so I have had two other experiences like this, both are when I have been overtired or up in excess of 28hrs or so.

I have been diagnosed for a 1 year. 22 years old currently and male. I carry some weight to so maybe it could be related to that <_< Anyone else experienced this.

I bought b12 vitamins just because I thought i may help. It comes from nowhere!

do you still get dizzy? I am gluten-free for about 3 months but get bad gas with dizziness associated. My dizziness and gas go together. . wierd!

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I have still be struggling with the gluten free diet but have been gluten free for the last 3 days. But today I feel TERRRRRRRRIBLE I had a gluten free pizza but after walking home I dizzy when i turn my head quickly as I did to check for cars on my walk home I got a vertigo like feeling. And when i place my feet I feel vulnerable like they wont go where I want them too because I feel dizzy.

In the last year or so I have had two other experiences like this, both are when I have been overtired or up in excess of 28hrs or so.

I have been diagnosed for a 1 year. 22 years old currently and male. I carry some weight to so maybe it could be related to that <_< Anyone else experienced this.

I bought b12 vitamins just because I thought i may help. It comes from nowhere!

My sister and I get that also, and my sister says that it can be related to hypoglycemia, so you may want to watch that. I am a massage therapist, and I got a horrid dizzy spell in the middle of working with one of my patients... it's a good thing I was sitting on my stool because I really could have fallen on my patient, the room was spinning so much!

Good luck, keep us posted!

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I was actually diagnosed with POTS (postural orthostatic tachycardia syndrome) before I ever discovered the celiac. I didnt have the classic pots symptoms, but I was dizzy-vertigo style- very frequently. I'm a nursing student so I did my own research and found a connection between POTS and celiac and asked my doctor to test me for celiac. Turns out the celiac CAUSED the pots!!!!

Do you consistantly follow a gluten free diet? Unfortunately the only way I feel better is by really strict adherance. I had a coffee from starbucks the other day thinking it was harmless, but ended up getting dizzy a little while later. I then called starbucks and found out that the particular coffee I had ordered had gluten in it!!! <_<

I hope you can find some relief from your gluten free diet!! Keep with it, it worked for me!! :)

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    • Gluten ataxia...?
      I was explaining that some people have other trouble that is immune related and caused by eating gluten, but doesn't effect the gut in a noticeable way. According to the paper that I quoted there are some people which have different types of brain problems but don't have inflammation when tested by a biopsy.  The author used the term "non-Celiac gluten sensitivity" to refer to anyone who has any brain trouble that can be traced to gluten but without obvious gut inflammation.  There are a lot of different possible ways gluten can effect the brain some may not be related to the gut.  It could still be an immune system problem.  Normally "non-Celiac gluten sensitivity" refers to just a food intolerance.  Withdrawal symptoms are not normal and could be indicative of an immune system response of some sort, but I don't know for sure.        
    • Weird Reaction
      Hi Richie I've put the above in quotes as you have described in the first and second sentence how I felt six months prior to my DX.   In my own case, in the end I concluded it was anxiety after consulting Dr Google!  It was such an alien feeling to me, I couldn't even think what it was, particularly as life was pretty good at the time.  Anxiety is a problem for a lot of celiacs prior to diagnosis, and often after glutening after going gluten-free. You mention breathlessness, this of course can be for reasons such as anaemia (again a common celiac problem, I had this prior to DX) but of course also can arise if you are anxious.   Re 'gluten free' - Flowerqueen is right, from what I have read on this forum some people really do seem to react with less than 20ppm.    But perhaps some other things to consider...  could there be something wrong with the batch you have consumed?  Might it be worth contacting the manufacturers?   That said, you could , as Flowerqueen suggests, have a problem with another ingredient, in the product or something else you consumed. In the past I have had a terrible reaction - fever, trembling, diarrhea, stomach cramps that lasted up to three hours the last three times I ate..... broccoli, of all things.    Who would have thought that possible?  I have often thought I should try it again, just to be sure it was the broccoli, as it is a 'super food' that I ought to have in my diet, that I like very much, but the thought of having such a reaction again has put me off. I do hope you will find some answers soon.  
    • Weird Reaction
      Hi Richie,  I've not heard of this drink before, as I live in the UK, but any drink made from barley is something you should avoid.  There's a brand in the UK that makes lemon and barley water and orange and barley water and Coeliac UK say it is not safe for people with Coeliac disease.  (Our labelling laws in the UK changed a couple of years ago).  You say the drink you had was under 20 ppm, which is acceptable (usually) for coeliacs, but a lot of people are super-sensitive to gluten even in very small amounts.  I recently had a similar problem with something which was supposed to be okay for coeliacs, but when I checked the website of the product, for all it said there were no gluten containing ingredients, it was produced in an area where gluten was present, which was enough to put me off and must admit, the symptoms you describe sound very much like I experienced at the time.  (Personally I'd be avoiding that particular drink like the plague from now on). One other thing though,  have you checked the ingredients to see if there could be anything else in it which you may be intolerant to? 
    • Confused
      I have not. I'll talk to my doctor about it
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