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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.

Neurological Symptoms - Strange Sensations - Healing?
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15 posts in this topic

I have migraines, neuropathy and vertigo. These are my main symptoms. Migraines are gone. Yeah!!!

The imbalance/vertigo/ataxia are unchanged.

My normal numb/tingly feelings have been replaced with that sensation you get when a foot was asleep but you wake it back up. It is different than my normal tingling. It is exactly like my arms/hands/legs/feet are "waking up". I am soooo hoping this is a good sign.

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Are you taking a methylcobalamin B12 supplement, like 3mg per day? I believe magnesium will also help in this area.

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Yes. I am taking both of those. Mega B12 - sublingual methylcobalamin and Mag citrate. I am just wondering if my nerves might be "healing" and if others have experienced similar.

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Prior to going gluten free, my biggest symptoms were not GI related but included: migraines, hand and feet numbing, dizziness, eyes blurring, and a feeling as if someone was pouring hot water on my legs. Almost immediately after going gluten free, my migraines went away, numbing reduced, eyes no longer blur, I am no longer dizzy, and there is no feeling someone pouring hotwater on my legs.

I was so amazed how quickly everything disappeared.

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Prior to going gluten free, my biggest symptoms were not GI related but included: migraines, hand and feet numbing, dizziness, eyes blurring, and a feeling as if someone was pouring hot water on my legs. Almost immediately after going gluten free, my migraines went away, numbing reduced, eyes no longer blur, I am no longer dizzy, and there is no feeling someone pouring hotwater on my legs.

I was so amazed how quickly everything disappeared.

Hey neighbor! I finally found someone from Idaho. I used to live not far from the Snake River, near Marsing. Now I am bout 1 1/2 hours from there. We used to ride dirt bikes at Hemingway Butte. Ever hear of it?

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Thank you Rivergirl!

Did you have strange sensations as your body healed??

Yes, my migraines were also the first to go. Thank goodness!!

Im so glad to hear your dizziness went away. How long did that take? And the neuropathy. How long??

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What you are feeling could be healing or it could also be a sign that you have gotten CC'd. If it is CC your GI tract should let you know a few days after the increase in the nerve symptoms. The neuro issues do take a long time to heal and some may not resolve completely. A lot depends on how long you have been effected and how severe the damage is. For me the ataxia still remains to some extent after almost 6 years but it is soooo much better than it was at diagnosis. I had the same effect as you with my migraines, I haven't had another one since starting the diet, unless I had a severe glutening. I had a great deal of nerve damage and had not had leg reflexes since I was a child due to neuro effects. 2 years after diagnosis I had my reflexes back and I am now able to walk almost normally. Hang in there, it took your body a long time to get as damaged as it did for you to be diagnosed and it will take a while to heal your nervous system but it sounds like you are on the track and progressing.

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The neuropathy is actually better today and that strange "waking up" sensation is much much less today. So this gives me hope!! :D

I realize since I am deficient in Vit D and Iron (I am supplementing) that my body may simply be absorbing more (since I am not eating gluten) and these deficiences are getting better which may be what is improving my symptoms.

Hoorah!!!

I know we all heal at our own rates, but I do like to hear other people's experiences. Good news should be shared. :)

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Thanks RG!!

I appear to be doing everything right. Now just to wait and see......

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I did get odd things with my left hand like it going numb if I was sat at the computer with my chin on my palm but other than that nothing really, until I went gluten-free.

A few days after I started the diet I started getting numb hands and prickly feet. When I looked it up it seemed to equate to a few things - I bought some B12 but meanwhile had had a blood test to check the level which came back ok so I didn't take much of those, but something else I picked up on was hypothyroiditis. I took some Kelp tablets for a few days and it eventually went away.

Whether it was the Kelp or just a natural progression I will never know, but whatever it was it worked!

I still get the occasional numb fingers when propping my chin so I take a few kelp tablets just in case! It doesn't happen very often and doesn't bother me much.

Weird that the numb and prickly happened AFTER I went gluten-free though. I have been trying to figure out why.

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A few days after I started the diet I started getting numb hands and prickly feet.

I have these same symptoms before AND after gluten free...but never before I got sick. Before I restricted my diet I woke up with numb hands almost every day. My feet and hands would also get numb and tingly sitting at the computer...or anytime I was just sitting in one place.

After I cleaned up my diet it all went away....I didnt take vitamins or minerals...it just went away on its own. Now its totally predictable. I never have this problem unless I indulge in processed foods or other stuff that my body doesnt tolerate.....If I indulge I can be totally sure the next morning I'll wake up with numb hands.....even if I havent experienced it in months.

It'll only last for one day...unless of course I keep indulging....but usually I'm pretty good about keeping the symptoms at bay and I dont do things like that on a daily basis.

Today we had a bbq at work....so I ate what I wanted. My fingers feel a tiny bit tingly and I'm guaranteed to wake up tomorrow with numb hands....but that'll be the end of it.

For me its definately not related to vit/min deficiencies because it comes and goes too quickly and is totally predictable. I can expect it to happen when I eat processed foods.

My guess would be that in my case its caused by toxins circulating.....because my body isnt able to detox some of the food chemicals very efficiently. I also notice in my case that when my toxic load is higher my circulation is slowed down.....the blood just isnt flowing quite as freely (hypercoagulation). I think that has alot to do with why my hands are always numb the morning after I pollute my body. :rolleyes:

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Many people suffer neuropathy from vitamin and mineral deficiencies. Many celiac's are very lucky to have their neuropathy symptoms reverse when they go gluten free...it's encouraging to hear so many of you doing so well. My symptoms never reversed, but they did stop progressing, which is great. I was diagnosed with carpal tunnel before I found out about celiac disease...it's been 10 yrs now.

As I have stated, at least I think I have, I now have a new neurologist, who seems to know a lot about the celiac/B12/neuropathy connection. I am looking forward to healing with his help.

I have small fiber neuropathy in my legs and feet, inoperable carpal tunnel in my hands, wrist, with some arm and shoulder involvement...migraine headaches, along with tension headaches. My new neuro just diagnosed sleep apnea, which I do have to do a sleep study still and next month I have another EMG w/needles scheduled on my lower body. We will see what's going on.

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I did get odd things with my left hand like it going numb if I was sat at the computer with my chin on my palm but other than that nothing really, until I went gluten-free.

A few days after I started the diet I started getting numb hands and prickly feet. When I looked it up it seemed to equate to a few things - I bought some B12 but meanwhile had had a blood test to check the level which came back ok so I didn't take much of those, but something else I picked up on was hypothyroiditis. I took some Kelp tablets for a few days and it eventually went away.

Whether it was the Kelp or just a natural progression I will never know, but whatever it was it worked!

I still get the occasional numb fingers when propping my chin so I take a few kelp tablets just in case! It doesn't happen very often and doesn't bother me much.

Weird that the numb and prickly happened AFTER I went gluten-free though. I have been trying to figure out why.

I am glad you found something that worked for you but I do want to add a quick caution for those of us who have DH or suspect that we do. Kelp is high in iodine, the reason you took it for hypothyroid, but those of us with DH could suffer an intense breakout of lesions if we take it. Not saying for sure and for certain this would happen but thought it would be a good idea to put that caution in folks minds in case they break out and don't know what it is from.

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Yes and kelp/iodine can aggravate Hashimotos. So do be careful.

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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
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      I have not. I'll talk to my doctor about it
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