42 replies to this topic

[Karen B.]

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.

[AnneM]

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".

Beth

[Ginsou]

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!

[rsm]

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.

[Nan 70]

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

[rsm]

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.

[geminigal]

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..........

[Karen B.]

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.

[GeoffCJ]

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

[waldens2000]

..............I am so new at this......... in fact started the gluten-free diet yesterday. Sick to death of being sick.... and tired of trying to tell people what I am feeling.......... It started 8 years ago this month... Bloating like someone stuck an air hose in my throat,,, so bad at times had to sleep with heating pad.......... sometimes just local in center stomach.. sometimes across entire middle and around back........ Test and test and test and EGD's and CT scans......... now tingling in toes...... I am going gluten-free by myself and see what happens...... My question is does the toe Neurological symptons go away? It is a terrible terrible feeling......Tell you the truth I have no idea where to start......... so I will be coming back here a lot!!!!!!!!!!! I am 60 years old and tired of feeling 60........ mercy....... there needs to be more Dr's treating us or at least finding the problem........... I am a bit flustrated.......

[ravenwoodglass]

..............I am so new at this......... in fact started the gluten-free diet yesterday. Sick to death of being sick.... and tired of trying to tell people what I am feeling.......... It started 8 years ago this month... Bloating like someone stuck an air hose in my throat,,, so bad at times had to sleep with heating pad.......... sometimes just local in center stomach.. sometimes across entire middle and around back........ Test and test and test and EGD's and CT scans......... now tingling in toes...... I am going gluten-free by myself and see what happens...... My question is does the toe Neurological symptons go away? It is a terrible terrible feeling......Tell you the truth I have no idea where to start......... so I will be coming back here a lot!!!!!!!!!!! I am 60 years old and tired of feeling 60........ mercy....... there needs to be more Dr's treating us or at least finding the problem........... I am a bit flustrated.......

Welcome to the board. You have come to a great place for information. One thing in addition to the dietary trial that may help you a great deal is to add a sublingual (dissolves under the tongue) B12 daily. For folks with celiac disease the bodies ability to absorb and utilize B12 is severely impacted. Without it nerves cannot function properly. It could be very helpful to you in getting rid of the parathesias and will also help energy and mood.
Read, read, read here and ask any question you need to, no matter how gross or silly it may seem. You have found a great place for info and a lot of folks who have struggled with this, some of us for most of our lives before diagnosis. Your not alone.

[Janeti]

At times I used to slur my words, or when I spoke, I knew what I wanted to say, but couldn't find the words. One of the neurologists that I was seeing, said, learn something new everyday, or do a crossword puzzle, make your brain work. It's been 10 months gluten-free for me. I speak much better, the bainfog is still there, and I still get the tingling in my hands and feet. But I think that I have come a long way, considering all the years of damage I had. Nerves do heal, the neurologists say it could some time though. So for now, its one day at a time

[JustCan]

I also had these types of problems. Numbness/tingling in my hands and feet, balance problems (walked into things and dropped things all the time), anxiety, blacking out when I would get up in the morning, etc. After several MRIs, catscans, and tests for my heart, I was always told repeatedly it was stress. Well, 6 months gluten free and it's all gone. You're definitely not alone in these symptoms. Best of luck to you!

[Ukbird]

Cant believe what im reading!! 10 years ago after the birth of my baby, i had all these symptoms, brain fog, burning legs, twitching muscles all over my body, numbness and when i lay in bed a feeling that i was shaking all over internally. I still have a lot of these symptoms. Back then they said it was anxiety then they said it was chronic fatigue. It wasn't until this summer when i got the DH rash that gluten was finally mentioned. Thank god for this forum, reading about all these neurological symptoms, everything is starting to fit into place.