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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? - 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 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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hi i was just wandering if anyone else gets face numbness. I get it on the left side of my face and it comes and goes. There is no drooping or loss of movement.

I was just wandering if this is a sign of nerve damage or vitamin deficiency?

Anyone?

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YES!!!

I had this on one side of my face. Doctor said on the phone that it was probably Bell's Palsy, but I kept insisting that there was no paralysis or dropping. (Sound familiar?) My thyroid meds were too high, and when they were dropped down, the numbness went away, but then it came back later (more mildly, though), and my thyroid levels were fine.

But since going off gluten, I haven't noticed a problem. I did see a rheumatologist about 6 months after going off gluten, who tested me for lupus. The tests were negative, and he said to stay off gluten (like I was really going to start eating it again???? :blink: )

Right before going off gluten, I got a terrible rash on my arms that I now suspect was DH. I wonder if my immune system was attacking my skin, both in the numb cheek and the arm rash?

Anyway, welcome to the club!

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I have facial numbness primarily on the left side. It's gotten much better since going gluten-free.

Before I was diagnosed, I also had numbness and an altered feeling in my arm, and both of these along with tingling in my legs. At that point, the facial numbness was constant and was accompanied by tingling and frequent feelings of intense heat.

I would say it took about 4 months on the gluten-free diet for most of these symptoms to begin to subside.

In my case, I'm sure it was caused by vitamin/mineral deficiencies. I was also severly anemic.

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Thanks for the response, in a funny way its comforting to know that is could be due to gluten. I am waiting for my blood results to see if i am a celiac. Do you think if taking vitamins would slightly help? Is so which one?

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I had numbness in my face and soles of my feet. I also had the electric tingling in my arms. That was how a neurologist figured out I had super low b12. I started on shots and it got much better. I didn't realize how many numb places I had. :blink: Unfortunately she didnt figure out I had celiac disease. :angry: I had to wait five more years for that. I am hoping once my small intestines heal I can stop the shots.

Monica

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It also happened to me. I remember once in my early 20's, I was at work and all of a sudden the whole right side of my face went numb. Again, no drooping though. Again, I was told it was Bell's Palsy.......

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Thanks for the response, in a funny way its comforting to know that is could be due to gluten. I am waiting for my blood results to see if i am a celiac. Do you think if taking vitamins would slightly help? Is so which one?

Well, there are a lot of variables.

If you ARE celiac or gluten-intolerant, then you need to be gluten-free so that your intestines can heal enough for you to actually be able to absorb the vitamins,and that could take weeks to months or longer, depending on whther or not you have damaged villi, and how extensive the damage, etc.

But are you relying on a blood test for your answer, on dietary response, or a combination of both?

Were you eating gluten (4-5 slice of bread or equivalent ) for several months prior to having blood drawn for the test? If not, your test will likely come up as a false negative, but don't count on your doctor to know that....BTW, what clued your doctor into checking you for celiac in the first place (maybe your doc is one of the good ones )??

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Well, there are a lot of variables.

If you ARE celiac or gluten-intolerant, then you need to be gluten-free so that your intestines can heal enough for you to actually be able to absorb the vitamins,and that could take weeks to months or longer, depending on whther or not you have damaged villi, and how extensive the damage, etc.

But are you relying on a blood test for your answer, on dietary response, or a combination of both?

Were you eating gluten (4-5 slice of bread or equivalent ) for several months prior to having blood drawn for the test? If not, your test will likely come up as a false negative, but don't count on your doctor to know that....BTW, what clued your doctor into checking you for celiac in the first place (maybe your doc is one of the good ones )??

I was experiencing stomach pain in the upper left side of my stomach 7 months ago. After a CT Scan i was diagnosed with diverticular disease in the transverse colon. After researching diverticular i realised that was not the problem. I was experiencing a constant dull pain. I did however change my diet to chicken, fish and vegetables. Along with fruit. So yes I was reletavely gluten free but i did eat things like oats, brown bread etc. This could be why i still have the pain. I went to my doc and told him i wanted to see a specialist. On seeing the specialist this week he said it must be 1 of 2 things. either ibs or Celiac. Like i said i have given blood and waiting for that response. I think whatever the outcome i will still continue with this diet and i love the fresh food etc. I do however want to know if this pain will subside and i can live a happy life????????

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I wish I knew enough to give you an answer!

I do know, however, that IBS is a list of symptoms, not a disease. Those symptoms just happen to be identical to those of celiac. Many here (myself included) believe that IBS is a "trash bin" diagnosis, when the doctor has no idea what is CAUSING the symptoms, but gives you an official "diagnosis" of IBS and meds that may or may not mask those symptoms, but certainly won't address the cause.

At least, your doctor knows enough to consider celiac! (I am amazed how many don't)

Have you stopped eating gluten at this point, or are you waiting for the results of the blood work before you do so?

You don't need blood work or a doctor's permission to do so, as I'm sure you are aware; I was just trying to figure out if you still had the pain because you are still eating gluten, or if you still have the pain in spite of being off gluten, in which case, it might be a question of waiting long enough for your intestines to heal, or it might be caused by something other than gluten.

Sorry to be so long-winded!

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I wish I knew enough to give you an answer!

I do know, however, that IBS is a list of symptoms, not a disease. Those symptoms just happen to be identical to those of celiac. Many here (myself included) believe that IBS is a "trash bin" diagnosis, when the doctor has no idea what is CAUSING the symptoms, but gives you an official "diagnosis" of IBS and meds that may or may not mask those symptoms, but certainly won't address the cause.

At least, your doctor knows enough to consider celiac! (I am amazed how many don't)

Have you stopped eating gluten at this point, or are you waiting for the results of the blood work before you do so?

You don't need blood work or a doctor's permission to do so, as I'm sure you are aware; I was just trying to figure out if you still had the pain because you are still eating gluten, or if you still have the pain in spite of being off gluten, in which case, it might be a question of waiting long enough for your intestines to heal, or it might be caused by something other than gluten.

Sorry to be so long-winded!

For the last 2 days i have now eaten a gluten free diet. I am not waiting for results as this diet is not far from one i need to follow to keep my diverticular in order. Its healthy anyway......

The pain is still there but going to persist. I have a appointment to see a dietician next week which will help me with foods i can eat. Does celiac mean that the whole intestine is affected, i am just wandering how long it will take to clear up?

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I sure hope that the dieticians in the UK know more than most in the states! Most here don't seem to know that Corn Flakes and Rice Krispies are not gluten-free, or that barley malt and soy sauce are on the no-no list! And I do believe that in the UK, wheat starch is officially considered gluten-free, but here in the states it's a total No-No.

Two days doesn't seem long by the standards of most here. I DID feel much better (no more cramping or bloating!)starting about 2 days in, but I probably had far less damage than you. It did take 2 full weeks til I stopped craving bread (hadn't found the good recipes at that point, and the store-bought gluten-free bread tastes like styrofoam to me)!

Most here report that it takes weeks or months to feel better.

Hang in there!!!!

With celiac, your immune system can attack anything: the whole intestinal system, your skin, your brain, your thyroid, your pancreas. Nothing is safe...

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Definately make sure you have all your vitamin levels tested. B12 deficiency could cause tingling.....don't know if it does in the face though.

Another thing to consider if all your other tests come up with nothing and this hasn't resolved is to have testing done for lyme. I know Igenix in the US is the lab to use. Bells Palsy can be a sign of lyme but doesn't necessarily mean that is what you have. Just keep it in your mind if symptoms don't resolve, unless you want to run testing along with other tests. Most labs aren't reliable so if you go for lyme testing search out a lyme board in the UK to find out which lab is reliable.

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I used to have numbness of my chin, lips and the left side of my face. In addition, my tongue used to twitch. I have not had this since I went gluten-free in February 2006. What are the symptoms of low b12?

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May be a silly question but would this show up in a full blood count test? I have had this 7 months ago and was normal

I'm not sure about that but my assumption has been that you always have to ask for vitamin levels to be checked.

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For everyone who has has facial numbness, how long did they have it concecitavely. I have had mine for about 4 days now and not sure if i need to go back to the doctors. This is not the first time i have had it neither. I have had it once before about 2 months ago. I have my blood results coming back in 7 weeks but cant help but feel slightly uneasy that i need to wait that long to do anything about it. I do have a MRI scan on friday but hopefully that will be fine.

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I have facial numbness primarily on the left side. It's gotten much better since going gluten-free.

Before I was diagnosed, I also had numbness and an altered feeling in my arm, and both of these along with tingling in my legs. At that point, the facial numbness was constant and was accompanied by tingling and frequent feelings of intense heat.

I would say it took about 4 months on the gluten-free diet for most of these symptoms to begin to subside.

In my case, I'm sure it was caused by vitamin/mineral deficiencies. I was also severly anemic.

Jerseyangel did you ever feel like you were about to have a stroke with the numb face. This seems to be a big worry with me.

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Jerseyangel did you ever feel like you were about to have a stroke with the numb face. This seems to be a big worry with me.

It's really interesting that you should ask me that. Yes--one evening, on a Friday, I did get worried enough to call my doctor. This was about a week into the diet--and the numbness and tingling just got much worse, sort of all of a sudden.

Since it was pronounced on the left side, I panicked and actually thought about going to the emergency room. My husband thought I should call the doctor first, and I'm glad I did. Just speaking with her brought my anxiety level down.

I really think that it peaked at that point, and then slowly began to subside--it took a while, though.

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I completely forgot about this -- I used to get face numbness ALL the time (pre diagnosis). Then, one day when I had to get an IV due to dehydration (yikes, the things that happened before my appropriate diagnosis!) I had the numbness again and was told that the 2 were possibly related.

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hi i was just wandering if anyone else gets face numbness. I get it on the left side of my face and it comes and goes. There is no drooping or loss of movement.

I was just wandering if this is a sign of nerve damage or vitamin deficiency?

Anyone?

I could cry reading this post 

YES !!!!!!!!!!     I have started to find some answers

I started to loss the feeling in my face about 2 years ago ,and like most people the left side

I have seen heaps of Neurologist  and no one could figure out what was wrong and why  

 I had a lap band done a year ago and that natural cut out a lot if gluten based foods from my diet.over the last 6 months my face numbness has lessoned very slowly but it has got better and better .  I had my band lossend and started to eat things like bread again and that is when i notice the worse stomach pains and my face numbness return with the worse pain ever.

i have had my testing done and changed my diet and if i slip with gluten my face numbness tells me about my mistake before my tummy 

i also have head fog so bad that i had to change jobs 

i can't wait to see my neuro again and tell me ,  

finding other people with the same makes me feel i am not insane , not imagined the systems. which i am sure some Doctors thought i was nuts or just saying it for attention

OMG 

i am so happy right now 

thank you all for sharing your stories 

I am only one week into Gluten Free and already i can start to see light at the end of the tunnel    

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Hi Suzy

Welcome to the forum :)

So glad these posts have helped you.

Just to let you know this is an old thread, and the original posters may not be about. Hopefully there will be some new ones to chip in their experiences.

Do ask lots of questions. Most of us have made it through the gluten free transition and can help out if you have any wobbles. Great you are already getting improvements.

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My numbness isn't in my face, it's around my waist. However I have had numbness in my face and my whole left side, but the numbness in my waist is constant. Does anyone suffer with this?

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