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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.

Anyone Have Nerve Damage Caused
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4 posts in this topic

by celiac?

I am seeing a neurologist for numbness and tingling in my arms and legs and found somewhere that it could be from nerve damage caused by celiac. I am also dealing with depression. I am beginning to think I just don't have a handle on the celiac disease and that is my entire problem. I have had all sorts of blood work and testing. I am having an EMG done next week to check for nerve and muscle damage.

I am just tired of all the doctors and testing. Any suggestions would be helpful.

Missy :(

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I had had numbness/tingling in my arms and legs for a while before i was diagnosed with celiac. Now that I am gluten free, I never get that sensation anymore. I did see a neurologist before knowing that I had Celiac and he didn't see anything wrong (although he didn't do any tests). How long have you been gluten free? The numbness should go away after a couple months of not having gluten. I go through my bouts of depression as well. Guess it all comes with the disease. I had/have a hard time dealing with it sometimes but I get through it. Just hang in there. Hopefully it will all get better and this gluten free diet will pay off in the long run (at least that is what i keep telling myself). Let us know how the test results come out. I am very curious to see what they say!

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Yes,I had symptoms starting as pain in the right big toe which later became numbness and progressively got worse and affected the feet and lower leg on both sides.This progressed over a number of years,and my doctor did not come up with a reason for it.I had also ameliorated my digestive symptoms with a high fibre vegetarian diet,but was eventually diagnosed when I went in for severe abdominal pain and they discovered I was anaemic.This started them off to the races with the tests but it took a while to reach a diagnosis because celiac disease was near the end of their list of possibilities.Once I went on a gluten free diet the numbness was one of the quickest symptoms to go away and was almost 90% gone in a few months,but after seven months I still have some lingering neurological symptoms including a persistant tingling around the left ear and sometimes it affects the thumb and index fingers,but overall the severity was rapidly lessened with the gluten free diet.If celiac disease is the cause the gluten-free diet may help fairly quickly.My doctors didn't have much to say about these syptoms and seem to be waiting to see if they will go away from the diet.I did find some information relating to this on the Columbia University GI website which seems very informative.

hope this is helpful,

good luck

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missyflanders,

After 6months being gluten free I had numb legs and tingly feeling, it eventually spread to my arms, hands and fingers (right side only). Then I began having trouble walking, to the point where I had to use a cane, and I would trip over my own feet . Then began the shaking and the stuttering. I was stubborn, tired of tests that ended with no definate answer, or an accusing stare(32 years of celiac and being told i was anorexic and/or had IBS and told to take a lot of fibercon... <_< ) and therefore waited too long before I went to the doctor.

They've done so many tests I can't count them on both hands anymore, yet nothing obvious showed up. This last test was a lumbar puncture (spinal tap).

I often wondered if all of this was related to celiac, I've seen some reports of nerves being damaged similar to the demyelation in multiple sclerosis. Right now, in my case, they have ruled out many things, but not multiple sclerosis.

It sounds like it may be normal to have the tingling and numbness for celiacs, but if it gets worse as mine did, I definately suggest to look into it.

With luck I will know something soon, and if so, I'll definately update, perhaps it will be of help. My issue may not be related to celiac or yours, but then it may be, its good to look at it from all angles.

My biggest fear is the big "I don't know" which many celiacs are all too familiar with.

Good Luck to you, and don't hesitate to go see your doctor if the symptoms get worse.

micky

*edit* I just read your other post "is this normal" and am sad to hear that they don't have any answers yet :( *

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    • Will my doctor test me? So many symptoms...
      Yep, get tested for celiac.  You have plenty of digestive symptoms to indicate it.
    • Weird Reaction
      Hi Richie, It definitely sounds like you got glutened.  Over here in the USA they can't label foods gluten-free if they are made from gluten ingredients, period.  So your barley drink would not be labeled gluten-free here.  A while back I read something about the testing for gluten in foods not being as accurate for detecting barley hordein as it is for wheat gliaden.  So the gluten-free testing (if they do any) that your drink maker does may not be reliable. Celiac disease is an autoimmune condition.  So the immune system starts reacting when it detects gluten and damages the gut lining.  An immune reaction is not like a food poisoning event, where most of the damage is only while the food is actually in your system and then ends.  An immune reaction can continue for weeks to months.  The immune system is really quite serious about protecting our bodies.  And since it is designed to detect and attack micro-organisms it reacts to tiny amounts of gluten. Wheat, barley, and rye are the main gluten grains that affect celiacs.  But some celiacs also react to oat gluten.  
    • Weird Reaction
      Hi Richie,  Glad you are feeling better. I wondered have you been officially diagnosed with coeliac disease? Just wondering as you say you are anaemic, that is one of the symptoms of coeliac disease, along with other general malnutrition. You don't need to eat meat for iron though, you can get it from non-heme foods, like spinach or parsley. Just be careful with the drink with barley, it may be that you only start to have symptoms if you consume a lot of it, but if you have coeliac disease the damage is still been done to your gut regardless of whether you have symptoms or not, which will ultimately lead to malnutrition as well as other things.
    • Weird Reaction
      I think, if all this is caused by glutening, it could be that it takes a while to work its way out of your system. I should explain about what I said about organic broccoli.   I don't have a problem with organic food,  in fact, I buy organic milk and carrots all the time, but I don't want to try organic broccoli in case it is the broccoli that is the problem, not the insecticide.    I meant to ask, are you a coeliac or is it non-coeliac gluten intolerance that you have?   I wonder what sort of support you get in Australia for these conditions once diagnosed?   Here in the UK I think the understanding is that if new gastro symptoms have lasted for more than six weeks it needs to be investigated.   I have found this very helpful advice because I do get odd twinges of pain and sometimes changes in bowel movements (sorry if tmi) but they rarely last more than a couple of weeks.   If they do persist I mention it to my gastroenteroligist and he follows it up.  I recently had a sigmoidoscopy for left sided pain and they found nothing.  Turns out it was to do with lactose intolerance, but I always imagine the worse!    
    • Will my doctor test me? So many symptoms...
      Welcome, @iwillmoveamountain! Of course you are not wrong to pursue getting testing for celiac. My advice is to drop that doctor and find a new one, preferably one who is celiac savvy, and who will listen to you and test you for the disease.  
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