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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
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43 posts in this topic

Is there anyone on the board with Celiac that have neurological symptoms? Neuropathy?

Thanks.

Nan

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Yes, there are many of us. The weekends are generally slow around here. I am sure that others will post soon.

I had balance issues, speech issues and the fog is not totally lifted. Much has subsided since being gluten free for two years. Some issues I have yet to resolve.

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Is there anyone on the board with Celiac that have neurological symptoms? Neuropathy?

Thanks.

Nan

I havent been diagnosed with Celiac by a doctor, but when I eat gluten I notice that I get brain fog, depressed, anxiety, mood swings. I have been consciously gluten free for two months.

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Thank you Momma Goose.

I have been told by Dr's for past 5 years that I have anxiety and I know that is not the answer. I do think that I have had Celiac for many many years and no one has even given it i thought that it could be Celiac until my gastroenterologist did the test and it came back positive. I have also had chronic hives for years (34) and I think this has something to do with celiac also. Don't know how much damage has been done but hope some of it can be repaired or stopped from progressing. Had all of the neuro. testing including a brain scan and all os ok. I do get buzzing numbness in my legs and feet and also have a vibrating feeling in my chest. Feel it mostly when I am very quiet at night in bed. Had all cardio testing done also and everything is fine except for a slight leaking tri-cuspid valve which they say is not the cause of the problems.

Hope to hear from anyone else that has neuro symptoms. Live alone and it scarey. Today I am getting rid of everything in the house that has wheat and gluten in it.

Nan

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Before I went gluten-free, I had pins and needles type tingling in my lower legs and feet. I would also get burning and stabbing sensations on the bottoms of my feet.

I had an "altered" feeling in my left arm, and on my face. My face would get burning hot--sometimes my mouth inside would get hot, too.

Most of this went away after several months on the diet. I still have neuropathy in my face, especially the left side.

When glutened, I will still get anxiety, moodiness, clumsyness and an odd inability to find the right words and get them out. In short, brain fog ;):)

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Thank you Momma Goose.

I have been told by Dr's for past 5 years that I have anxiety and I know that is not the answer. I do think that I have had Celiac for many many years and no one has even given it i thought that it could be Celiac until my gastroenterologist did the test and it came back positive. I have also had chronic hives for years (34) and I think this has something to do with celiac also. Don't know how much damage has been done but hope some of it can be repaired or stopped from progressing. Had all of the neuro. testing including a brain scan and all os ok. I do get buzzing numbness in my legs and feet and also have a vibrating feeling in my chest. Feel it mostly when I am very quiet at night in bed. Had all cardio testing done also and everything is fine except for a slight leaking tri-cuspid valve which they say is not the cause of the problems.

Hope to hear from anyone else that has neuro symptoms. Live alone and it scarey. Today I am getting rid of everything in the house that has wheat and gluten in it.

Nan

Nan,

I am sure it can be scary when you're alone.

I have recently developed some slight numbness from my shins down and some tingling sensations in my thighs. And on a few rare occasions that sharp jab in some of my joints. My left entire arm shakes, sometimes worse than others. Not quite sure what it's about yet, but I will be checking with my doctor in a few weeks.

How long have you been gluten free, that could be significant?

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Is there anyone on the board with Celiac that have neurological symptoms? Neuropathy?

Thanks.

Nan

I had three main symptoms-

1) Stomach issues - the Big D, rumbling, gas, etc, etc.

2) Neuropathy - Lots of tingling, pins and needles. Painful at times. Hard to type or walk at times.

3) Insomnia- Which I hadn't even realized was related, but now do.

1+2 are mostly fixed. Still having issues with neuropathy.

Geoff

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Whn you clean out the kitchen be sure to throw away the flour, canister and all, if you pour it out - you will get sick...

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Thank you all for your replys. Now I don't feel so all by myself with this. Dr's have been kind of ignoring me for years and saying it's my nerves. I am not a nervous person in general. I am now just diagnosed and starting to go wheat and gluten free. Have lost some of the feeling im ny toes at this point and don't know if nerves can regenerate themselves but my trash can is full of stuff and anything unopened will go to my daughter-in-law and be used. At least maybe it wont get any worse.

Not getting a good nights sleep due to the tingling is also a problem and that is making me nervous as it is kind of tingling all over.My husband passed from cancer 6 years ago and I kind of feel all alone with this. Now I at least know others have the same symptoms. Funny thing is I have never had intestinal problems with it. BUt the test is positive for it.

Nan

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Is there anyone on the board with Celiac that have neurological symptoms? Neuropathy?

Thanks.

Nan

I have neuropathy in my right siatic nerve running down my right leg. Painful, hurts to move but it is much better since going gluten-free but if i get glutened it comes right back. Yesterday went to beauty salon and asked them to use only water, my beautician said she had wheat allergies and recommended matrix silk said didnt have gluten. woke up this morning, vomiting, aches, sweating, and that d**n nerve pain, also hives, DH I will never do that again.

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Yes, there are many of us. The weekends are generally slow around here. I am sure that others will post soon.

I had balance issues, speech issues and the fog is not totally lifted. Much has subsided since being gluten free for two years. Some issues I have yet to resolve.

What were your speech issues? Did you have trouble with kind of scrambling up your words sometimes? That's what I have. I also stumble very easily, sometimes when there is nothing there to trip over, and am basically very uncoordinated. (Of course, I may just be a klutz.)

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I have greatly diminshed the fog, fear and depression since largely gluten-free. When I get poisoned it all comes back. I also used to have what I term mis-fires which I get these paranoid, often violent thoughts while thinking about otherwise benign situations or talking calmly with even a sweet person. I thought I was possesed by the devil but it was just bad protein.

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I have greatly diminshed the fog, fear and depression since largely gluten-free. When I get poisoned it all comes back. I also used to have what I term mis-fires which I get these paranoid, often violent thoughts while thinking about otherwise benign situations or talking calmly with even a sweet person. I thought I was possesed by the devil but it was just bad protein.

Amen!

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I also have Celiac and neuro symptoms. You are not alone! I had "panic attacks", severe depression (I would come home, lay on the floor and bawl, trying to come to terms with the fact that I had to kill myself :huh: ), troublle walking, talking, and keeping my balance. I also had neuropathy like pains. I had back spasms and bone pain, and although these aren't neuro symptoms, they did cause me to have trouble walking as well. I was as sick as a dog.

The good news? All of that resolved on the gluten-free diet. I thought I had MS or diabetic neuropathy for sure. :( I still get many of these symptoms when glutened, although most usually are not as severe and I don't get them all all at once.

Some studes have found that some Celiacs have nerve autoantibodies that seem seperate from Celiac Disease and do NOT disappear on the gluten-free diet. Other people have neuro damage from vitamin deficiencies that does clear with vitamin supplements and the gluten-free diet.

You might want to make sure you do not have an nutrient deficiencies if you have neuro symptoms that remain despite the diet. Just know that you are not alone!

Note: If anyone has neuro symptoms that do NOT improve on the gluten-free diet or GET WORSE, please make sure you ask your doctor to screen you for other conditions in addition to vitamin deficiencies. Conditions like MS are more common in those with Celiac.

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Is there anyone on the board with Celiac that have neurological symptoms? Neuropathy?

Thanks.

Nan

I do. I don't have an official Celiac diagnosis, but I have an IgE allergy to wheat and rye and I have neurological symptoms when I eat gluten. My DD is confirmed gluten sensitive. She has neurological symptoms as well. Due to my neurological symptoms to gluten, I am going to take this as a confirmation of gluten sensitivity, in addition to an IgE allergy - so no gluten for me, even without an "official" diagnosis. I have asthma, so when I eat gluten I have trouble breathing, so that alone is enough to keep me off gluten - but when you add in the neurological symtoms, it's definitely a confirmation for me.

Mine are similar to rheumetoid (sp?) arthritis, brain fog, confusion, tingling in my legs, muscle and joint pains.

My DD's are (she's only 3) - diminished response to pain, a worsening of her speech delay, acting "drunk", loss of coordination and balance.

We also both have GI symptoms as well, but we both definitely have neurological symptoms. She actually has diagnosed neurological developmental delays - don't know if they are specifically caused by gluten sensitivity or if they are "enhanced" by gluten, but they are greatly diminished when she's off the "evil grain". :lol:

Beth

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Thank you all for your replys. Now I don't feel so all by myself with this. Dr's have been kind of ignoring me for years and saying it's my nerves. I am not a nervous person in general. I am now just diagnosed and starting to go wheat and gluten free. Have lost some of the feeling im ny toes at this point and don't know if nerves can regenerate themselves but my trash can is full of stuff and anything unopened will go to my daughter-in-law and be used. At least maybe it wont get any worse.

Not getting a good nights sleep due to the tingling is also a problem and that is making me nervous as it is kind of tingling all over.My husband passed from cancer 6 years ago and I kind of feel all alone with this. Now I at least know others have the same symptoms. Funny thing is I have never had intestinal problems with it. BUt the test is positive for it.

Nan

Nan, I had sciatica due to a severe lack of folic acid and B vitamins. My hematologist told me you have to have folic and B for your nerves to repair themselves. A sub-lingual B/folic supplement helped speed my healing. Also, I later found out that taking Prevacid for 5+ years before diagnosis probably contributed to my shortage because stomach acid is essential to getting B vitamins from your food.

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I do. I don't have an official Celiac diagnosis, but I have an IgE allergy to wheat and rye and I have neurological symptoms when I eat gluten. My DD is confirmed gluten sensitive. She has neurological symptoms as well. Due to my neurological symptoms to gluten, I am going to take this as a confirmation of gluten sensitivity, in addition to an IgE allergy - so no gluten for me, even without an "official" diagnosis. I have asthma, so when I eat gluten I have trouble breathing, so that alone is enough to keep me off gluten - but when you add in the neurological symtoms, it's definitely a confirmation for me.

Mine are similar to rheumetoid (sp?) arthritis, brain fog, confusion, tingling in my legs, muscle and joint pains.

My DD's are (she's only 3) - diminished response to pain, a worsening of her speech delay, acting "drunk", loss of coordination and balance.

We also both have GI symptoms as well, but we both definitely have neurological symptoms. She actually has diagnosed neurological developmental delays - don't know if they are specifically caused by gluten sensitivity or if they are "enhanced" by gluten, but they are greatly diminished when she's off the "evil grain". :lol:

Beth

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I'm new to the forum and haven't been able to read as much as I would like to, but I'm sure glad you have mentioned neurological symptoms. Two months ago I became very ill, indigestion, constipation, stabbing, burning, tingling,throbbing pains in my abdomen 24 hours a day,sometimes the pain was so severe I could not walk. I had spent some time in Mexico, and thought I had picked up a "bug". Initial diagnosis was IBS, then diverticulitis. I did not respond to antibiotics and was referred to a gastroenterologist. I ended up in the emergency room and requested a CT scan be done .....my brother-in-law had just been hospitalized with a ruptured appendix and a friend of mine had severe abdominal pain and died.......gangrene in her abdominal cavity. I have no insurance, so this was a very expensive emergency room visit......the CT results were normal, so I knew my problem was not life threatening.

I also started having the burning, stabbing pain in my arms and legs and my nerves were "twitching" in the back of my calves and thighs. I never mentioned this to my regular doctor, because I was sure she would think I was imagining this.

I am now awaiting Lab results from my gastro Dr.......knowing the results may be false negative.

I put myself on a gluten free diet, and since I'm lactose intolerant have eliminated all dairy,lactose, and gluten from my diet. I'm no longer in pain and the nerve twitching has stopped,along with the arm and leg stabbing pains. I discovered the potato salad that I had purchased at the supermarket had wheat in it....and I was eating it by the bucket! No more Subway subs for me, either. I'll bring my own bread with me!

There is so much information for me to learn, and this forum is the best!

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I'm new to the forum and haven't been able to read as much as I would like to, but I'm sure glad you have mentioned neurological symptoms. Two months ago I became very ill, indigestion, constipation, stabbing, burning, tingling,throbbing pains in my abdomen 24 hours a day,sometimes the pain was so severe I could not walk. I had spent some time in Mexico, and thought I had picked up a "bug". Initial diagnosis was IBS, then diverticulitis. I did not respond to antibiotics and was referred to a gastroenterologist. I ended up in the emergency room and requested a CT scan be done .....my brother-in-law had just been hospitalized with a ruptured appendix and a friend of mine had severe abdominal pain and died.......gangrene in her abdominal cavity. I have no insurance, so this was a very expensive emergency room visit......the CT results were normal, so I knew my problem was not life threatening.

I also started having the burning, stabbing pain in my arms and legs and my nerves were "twitching" in the back of my calves and thighs. I never mentioned this to my regular doctor, because I was sure she would think I was imagining this.

I am now awaiting Lab results from my gastro Dr.......knowing the results may be false negative.

I put myself on a gluten free diet, and since I'm lactose intolerant have eliminated all dairy,lactose, and gluten from my diet. I'm no longer in pain and the nerve twitching has stopped,along with the arm and leg stabbing pains. I discovered the potato salad that I had purchased at the supermarket had wheat in it....and I was eating it by the bucket! No more Subway subs for me, either. I'll bring my own bread with me!

There is so much information for me to learn, and this forum is the best!

Glad you feel better! :) The gluten-free diet is *really* a lifesaver for some.

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I am a self diagnosed celiac, 25 years misdiagnosed as ibs. Started having nerve problems 10 years ago, numbness in legs and tingling hands. I found out I had no B12 in my system and was also tested for MS. I had and still have balance problems, slight tremor at times and slurred speech at times. I've been gluten free for 4 months and have noticed a big improvement in overall health. Don't feel alone, the gluten affects your entire system, the longer it is untreated the deeper the damage.

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I am so glad that I posted my questions. Thank you all so much for you in-put on your symptoms. Both of my feet have been tingling 24/7 for about 4 or 5 years now. Sometime buzzing in legs but that comes and goes. Loss of sensation in toes...I wake with a feeling deep inside of my chest like a vibration. If you were to put your hand on the inside wall of your refrigerator while the motor is running that is what I am feeling. Think this is how a kitten must feel inside when it purrs. Very strange, scarey.. Now I just hope I can get some of this reversed. Am taking 1,000 mcg. of VitB12 but have to look around for the sublingual kind. Even the tinitus in my ear has an electrical sound to it. RIght now my diet is rice, chicken and fruit.

Nan

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I am so glad that I posted my questions. Thank you all so much for you in-put on your symptoms. Both of my feet have been tingling 24/7 for about 4 or 5 years now. Sometime buzzing in legs but that comes and goes. Loss of sensation in toes...I wake with a feeling deep inside of my chest like a vibration. If you were to put your hand on the inside wall of your refrigerator while the motor is running that is what I am feeling. Think this is how a kitten must feel inside when it purrs. Very strange, scarey.. Now I just hope I can get some of this reversed. Am taking 1,000 mcg. of VitB12 but have to look around for the sublingual kind. Even the tinitus in my ear has an electrical sound to it. RIght now my diet is rice, chicken and fruit.

Nan

Have you tried injections of B12? That really does the trick for me. You may not be absorbing much. Your diet and mine are very similar. I keep a big bowl of rice in the fridge and heat some up when needed. Baked potatoes helped sooth my tummy problems too.

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I forgot to ask my Dr. about this on Monday............

Do some of you get the feeling in your arms and hands like they are falling asleep...the pins and needles feeling? I had this start a couple of months ago and it is horrible. I also seem to have a very weak grip....as in it is very hard/painful to try to hold a blow dryer and blow out my hair, and I have lately noticed that I can barely use a screw driver because my hand is weak and it becomes very painful.

Even right now as I type my pinky and ring finger are tingling..........

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I forgot to ask my Dr. about this on Monday............

Do some of you get the feeling in your arms and hands like they are falling asleep...the pins and needles feeling? I had this start a couple of months ago and it is horrible. I also seem to have a very weak grip....as in it is very hard/painful to try to hold a blow dryer and blow out my hair, and I have lately noticed that I can barely use a screw driver because my hand is weak and it becomes very painful.

Even right now as I type my pinky and ring finger are tingling..........

I have experienced that although at the time, I figured it was carpel tunnel because my job has a lot of keyboarding. Since the Celiac diagnosis, I haven't experienced it so I suspect it was peripheral neuropathy. But I never went to the doc about it.

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I forgot to ask my Dr. about this on Monday............

Do some of you get the feeling in your arms and hands like they are falling asleep...the pins and needles feeling? I had this start a couple of months ago and it is horrible. I also seem to have a very weak grip....as in it is very hard/painful to try to hold a blow dryer and blow out my hair, and I have lately noticed that I can barely use a screw driver because my hand is weak and it becomes very painful.

Even right now as I type my pinky and ring finger are tingling..........

I get it in my hands and feet. Pretty bad at times. Hard to walk or type. Haven't had a seeming reduction in grip strength, but it gets mighty uncomfortable at times. My feet are going right now.

I haven't had this go way since gluten-free, though it does seem to be getting a little less frequent. Of course, I just found out I've been glutening myself fairly regularly. I thought I had it down, and figured the issues I was still haveing were either a different food or dairy, but recently learned that Fish sauce does sometimes have wheat in it, including the big jar we have in our fridge, that I use frequently. UGH.

Geoff

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    • celiac disease is psychosomatic
      The following link might be helpful for others experiencing simlar psychosomatic issues with doctors. Although it's only for psychiatrists, I think it should be for all doctors! http://www.psychsearch.net/complaints/ The neuropsychiatrist I saw might fall into this category? I can checkmark:

       Falsified medical records
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    • celiac disease is psychosomatic
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    • celiac disease is psychosomatic
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    • celiac disease is psychosomatic
      Thanks. I'm not sure if the doctor will read another email I send and that's the way I'm told by staff to contact her. It will just confirm that I keep writing her letters although I only sent her one email about it! I already told the staff and her that I didn't want my medical records sent to any doctor's office, but I don't know if they will do it out of spite. It was scary talking to this doctor because she wouldn't listen or let me get a word in...I guess that's the reason why I feel the need to raise my voice at this office. When I requested a Lyme disease prescription from another doctor years ago before I knew I had celiac disease, this ignorant doctor told me not to come back to his office because there's no such thing as Lyme disease so only crazy people think they have it. I thought that was the worst experience I had with a doctor, but this experience was worse. I mean this neuropsychiatrist kept calling me a sick person over and over. It's so scary dealing with doctors like this. I really don't know how many other doctors may have wrote in my records that my symptoms are all in my head because celiac disease isn't real.   And my neurologist said this neuropsychiatrist was great. Maybe he says that about all the doctors he refers to patients to? I don't know if you call her personality psychopath since she appeared really nice during my consult, but she was thinking all this negative s*** in her mind at the time or different than she appeared to be.
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