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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.

Tingling
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19 posts in this topic

I often/usually have a faint tingly feeling in my lower legs and hands - almost like when you've been very cold and are warming up? Is this related to any of the 'neuro-' stuff I've been avoiding reading about (because anything starting with neuro- scares me!)? I hadn't bothered about it before as it isn't painful or a problem but wondered if it's worth mentioning to my doctor when I see them? While I'm on the topic of weird feelings - anyone else get a sensation like they've suddenly bobbed to the side, or the room has moved? Not dizzy and falling but just, odd. 

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I started taking vit. B12 and magnesium in hopes of eliminating the nerve symptoms. It seems to be working!

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Thanks! I did suck it up and Google up on it after posting but as the official treatments listed appear to be around pain control (I don't have any) knowing about the supplements is very helpful. Any advice about taking them? (I also take iron and a probiotic) 

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Take vit. C (supplement or in food) with that iron. I take a sublingual version of vit. B12 to by-pass my intestinal tract. My current docs are not too savvy about supplements or celiac disease for that matter, but I think supplements are helpful until healing is complete. I have taken supplements for years (my retired doc did a lot of "out-of-box" thinking/treatments) and they probably saved me from even worst damage from celiac disease. Too bad he did not catch the celiac disease but that darn thalassemia really covered up the iron deficiency

anemia, which was the only symptom that my gastro caught for celiac disease when I went for my over-50 colonoscopy.

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I often get tingling in my hands- as if they were asleep and blood was flowing back into them- as well as slight dizziness.  I don't believe these symptoms are from celiac, but another issue.  However, that doesn't mean that your symptoms are not caused by the celiac. Low blood pressure can cause both these symptoms, I believe.  Are you on the low side?

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I had tingling in my leg, and sometimes in my arms and hands, for years. Sometimes I had a shaky low-blood-sugar-like feeling in my whole body too (and food didn't help). Magnesium worked wonders for me. Someone here recommended it, and within days the shaky feeling and most of the tingling was gone. I went back and found old blood test results from a hospital admission (for neuro-related balance/coordination problems) several years ago, and lo and behold I was deficient in magnesium then! At the time they just told me to take a mutlivitamin and didn't believe me when I said I already was...I had no idea at the time that the magnesium deficiency could cause tingling. Anyhow, I've been taking it daily for about 8 months, and every time I try to stop the tingling comes back within a couple days. But as long as I keep taking it, no tingling!

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Me too, I read about the additional magnesium on this forum. I think it helps too for bone growth. I take it.

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Wow- so glad to know about the magnesium! Katie, at least you know you're not alone!!

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anti-soprano and greenbeanie - yes, same tingling feeling! Thank you cyclinglady, magnesium and B12 now stowed on the 'breakfast pills' cupboard in my kitchen! Hopefully that will help. 

 

anti-soprano yes I am usually in the low range of normal for blood pressure, which seems to run in my family. I did wonder if that was causing some of the dizziness.

 

greenbeanie I am a really poorly co-ordinated individual, always have been. My Dad calls me Clatters, after the trail of destruction I leave :D 

This is what I really value about this board - if I went to the dr they'd ignore me or refer me for nasty elecrocution type tests! Now I get to give the supplements a go first :) Is nerve damage particularly dangerous? I mean I'm not in pain so I'm not that bothered, just incurably curious. 

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greenbeanie I am a really poorly co-ordinated individual, always have been. My Dad calls me Clatters, after the trail of destruction I leave :D 

 

 

 

And yet you are so athletic with your aerial acrobatics! That is amazing! I think you are more coordinated than you think. I gave myself a concussion getting into my car before! I broke a toe on a vacuum cleaner... the list goes on LOL

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And yet you are so athletic with your aerial acrobatics! That is amazing! I think you are more coordinated than you think. I gave myself a concussion getting into my car before! I broke a toe on a vacuum cleaner... the list goes on LOL

Hahah true, the funny thing is the aerial silks have (I think) improved my co-ordination. You have to think hard about it to avoid splattering yourself ;) I did nearly run into a wall the other day though... 

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 I did nearly run into a wall the other day though... 

 

It sounds funny when you say it like this - but you seriously may be in for a very pleasant surprise once you've been gluten free for a bit longer! I used to walk into walls ALL THE TIME. I don't even know how to describe it...I'd just be walking through a regular doorframe, and the entire left side of my body would smack into the wall instead! My whole arm, shoulder, and leg would end up hitting the wall instead of going through the door. It never happened when I was consciously concentrating on where I was going, but who concentrates just to walk through a door? I felt ridiculous, and people surely thought I was drunk. It routinely happened several times a day. I also smacked the cupboards directly into my head when I opened them, and banged my head on the metal car doorframe as I was getting in. I'd been very athletic and coordinated as a child and teenager, but the coordination went downhill fast in my mid-20s (I'm 38 now). After three or four  months gluten free, I suddenly realized that I hadn't walked into a door in a week! It really hadn't been one of my major concerns, but it sure is nice to have an unbruised head again.

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Yep, I know the feeling! Corners of walls, door frames, people I'm walking next to... This has been going on as long as I can remember. Makes me wonder if I developed coeliac earlier than I previously thought. 

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That sounds familiar. It might be a bit if what they call "gluten ataxia". Tingly extremities and a bit of unbalance. Kind of a slightly drunk feeling.

I might try the B-12 and magesium thing too. You're supposed to take magnesium with calcium and Vit-D too, right? (I'm also wondering if my iron might be a little low too).

 

If it makes you feel any better, a couple years ago I walked straight into a glass door. Like a bird. It was open when we went into the store. I swear! Ooh it took a while to live that one down. I hit my shoulder/arms against doorways a fair bit too if I'm off balance.

 

If it keeps being a problem, you might want to look at other foods that could be bothering you.

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Haha! Did you leave a little pattern like the birds do?! I've just Googled gluten ataxia and it does sound familiar, but perhaps too new to get a diagnosis for. I'm generally pretty athletic but have always had a tendency to shoulder barge doors etc. My Mum used to joke that if she watched me play rugby without her glasses on she'd know me by my funny running style. 

I was only diagnosed with celiac disease because the more I trained, the slower I got. Now that I have the gluten-free diet and the anaemia under control (well, getting there) that is my 'secret weapon' for getting faster this year. If eventually both my legs go in the same direction that would be even better ;) I'll keep folks updated! I've just started with the B12 and magnesium - we'll see how it goes. I wish there was a way to find out when the celiac disease gene was tripped, as I said I only started gastro symptoms a few years ago but I've always been badly co-ordinated etc. 

I'd definitely recommend getting your iron checked, I didn't realise how exhausted I was until my doctor spelt out to me how low my levels were and put me on supplements. 

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So, KCG you are three months gluten-free now?  I say there is still time for improvement to show.  I used to get an inexplicable neuropathy in my legs and arms quite frequently.  It would keep me up at night and drive me nuts.  Did all kinds of testing over many years and then it was like, we don't know.  A while back I was thinking that I haven't experienced that in about six months now, and it had greatly decreased in frequency before that.  Of course it is anecdotal, but I am starting to think going gluten-free slowly fixed that- it may have been caused by my untreated Celiac disease.

 

So I wouldn't worry too greatly until maybe a year has passed.  Take vitamins and let yourself heal. 

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I am. I *think* my co-ordination is slowly getting better and I don't know if it's my imagination but I think the tingling is already reducing. I will definitely be keeping up with the vitamins :)

I attended a handstands class as part of my aerial acrobatics last night - gave myself an extra pat on the back for managing the exercises! 

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Speaking of tingling, I've got it right now. Bad. My fingers are all tingly, and feel kind of stiff and sore when I bend them (there's definitely a pain at the base of my right thumb). I've got a tingly headache, face is tingly, arms are tingly. Feel like i'm "bobbing" around. I felt my ear drain a little bit. Also slightly nauseous (due to the unbalanced feeling)

I've been getting this a lot lately, to varying degrees, both at work and at home

 

Anyway, I haven't been eating anything unusual, so I highly doubt its a gluten/dairy/soy-ing. The only food-related thing I can think of is that a: could be having more salt that I should. Salt is one thing I know affected my "dizzy" symtoms, and why I cut back on it so much. I've been a bit lax about that lately, so that could be affecting things (does anyone know if salt levels can effect neuropathy?).

The only other thing is oats. I can tolerate them pretty well and eat them several times a week (certified gluten-free, of course). I made oatmeal cookies last week so have been eating lots of those, so it could be that I've hit my oat limit?

 

Or maybe it's this crazy winter weather? It's been so so cold and dry and is finally warming up a bit today. I think that's a long shot though.

 

In any case, I was going to start a new thread, but remembered this one is basically the same thing.
I'm going to start taking more B12 to see if that helps, and cut back on the salt intake again. I'm hoping to get to the bottom if it because not only is it annoying, but I recently started playing the cello, and I really can't practice when my fingers are all tingly and stiff.

 

Speaking of B12 (and other B vitamins), what's the recommended intake? I might get some iron as well (feeling like it might be a tad low. I've dealt with iron deficiency in the past, so I know what the borderline anemic symptoms feel like. taking supplements a few times a week might help). I probably won't be seeing my doctor for a few months, but will be sure to get a full panel done when I do.

 

Anyway, any ideas or advice is welcome.

 

Stay warm everyone!

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I too have the tingling in lower legs.  It's so weird because it began after being diagnosed with Celiac Diseas. I am going to be more vigilant about taking a magnesium.  Does anyone recommend the best brand?

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