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Neurological Symptoms
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..............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.......

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..............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.

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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 :)

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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!

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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.

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I accidentally got glutened the other day and I have been spinning ever since.

I have major neurological symptoms. Seemed to help after going gluten free.

good luck on your healing journey

sickchick

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..............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.......

Just curious,------ were you also tested for food allergies?? I am allergic to wheat, rye, and other stuff. And now I'm pretty sure I can't eat flax seed either. Had the same stomach pains you describe. Got flax seed out of my diet and so far, the stomach and back pain have not returned. I suspect that once a person is a celiac, or has two or more food allergies, they probably keep picking up new food allergies as time goes by. And these can cause the pain. It takes a lot of detective work to find the offending food sometimes.

I also have neuropathy---- pins and needles, numbness, weakness, blurred vision, ringing in ears, vibration feelings in legs, arms, etc. etc. Symptoms better since gluten free--- but I'm going to a doctor soon to get tested for Fibromyalgia, Lupus, MS, and whatever !! :) (Not so much because of the neuro, but because I have a whole host of other problems.)

But other than all that, I feel GREAT ! ! ! Yeah, right------ :P

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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

Thank you all for this posting. I have "idiopathic" peripheral neuropathy, IBS, and gastritis. The PN is pretty bad, and has been getting progressively worse for five years. I am beyond pins and needles and tingling, to burning, numbness, and pain, buzzing in my hands. Most of my insomnia seems to be from the PN pain, or my body's ability to shut it down, and therefore wake me up with adrenaline etc. I stumble, fumble, slur my speech sometimes, forget words, brain fog, and inability to concentrate. Also, non-allergic asthma. I can also breathe much better gluten free which is why I do it, but haven't been able to get a celiac diagnosis. I will check my brain MRI that was screening for MS for any UBO's. WOW. I feel so totally validated.

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I have neuro symptoms, too. Fatigue, sleep attacks, weakness, temporary full-body paralysis that can last hours, non-epileptic seizure-like episodes (alternating with paralysis), feeling like my body splits in half and my left and right halves switch sides or float around, depression, panic attacks, slight balance issues, dizziness, severe brain fog, confusion, memory problems, tics (verbal and muscular). Most of this is triggered by gluten, and some of it is also allergies to some fruits and other grains. But gluten is the worst.

If I avoid these foods, I am almost completely symptom free. It's amazing. My face still goes slack and my knees still buckle when I laugh at a joke, but that's ok. I can handle that. It doesn't last long. I think it's the permanent damage that's resulted in my Narcolepsy with Cataplexy.

I went gluten free to avoid all these neurological problems, even though gluten also gave me D and intestinal cramping. I just didn't notice the GI problems with everything else going to haywire. Plus, I had it so long it seemed normal. lol I'll never get a 'proper' diagnosis with blood test and biopsy because I think a gluten challenge would damn near kill me. I'd at least end up in the hospital for sure. I become more sensitive to it when I've been off of it for awhile. Luckily, no doctor I've met questions my intolerance and none of them have any desire to pursue traditional testing. I have 2 immediate family members diagnosed Celiac through biopsy and I've ordered my HLA test this month. That seems to be good enough for the medical community and it's certainly good enough for me. :)

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Thank you all for this posting. I have "idiopathic" peripheral neuropathy, IBS, and gastritis. The PN is pretty bad, and has been getting progressively worse for five years. I am beyond pins and needles and tingling, to burning, numbness, and pain, buzzing in my hands. Most of my insomnia seems to be from the PN pain, or my body's ability to shut it down, and therefore wake me up with adrenaline etc. I stumble, fumble, slur my speech sometimes, forget words, brain fog, and inability to concentrate. Also, non-allergic asthma. I can also breathe much better gluten free which is why I do it, but haven't been able to get a celiac diagnosis. I will check my brain MRI that was screening for MS for any UBO's. WOW. I feel so totally validated.

You sound a lot like me prediagnosis if you add in the ataxia which always made me feel like I was falling to the right. Almost all of my neuro issues resolved although it did take a while. I hope your's do also. If you are not taking sublingual B12 you should think of getting some as it may help those nerves fire better and speed your healing.

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Hi, I posted this on another thread, but if all of your symptoms do not resolve on gluten free, try getting your thyroid checked, and adrenals, especially for Hashimotos Thyroiditis (autoimmune) which in many cases goes hand in hand with celiac. I have been Hashi's for 6 years or more undiagnosed. Doctors kept teeling me all my symptoms were form depression, anxiety, and that I was a hypochondriac. Now I know that I have Hashi's, & Hypopituitarism ( an underactive pituitary probably from an autoimmune attack as well. This has caused adrenal insiffieciency. I am now on cortisol replacement, HRT, and lots of supps. I still have lingering symptoms so I am going to try gluten free to see if the lingering symptoms will resolve. If you all have any questions about these issues. You can visit some thyroid sites that saved my life.

Stop The Thyroid Madness http://www.stopthethyroidmadness.com/

Real Thyroid Help http://www.realthyroidhelp.com/

Hormone Support Group http://hormonesupportgroup.Lame Advertisement.com/

List of symptoms from STTM

Less stamina than others

Less energy than others

Long recovery period after any activity

Inability to hold children for very long

Arms feeling like dead weights after activity

Chronic Low Grade Depression

Suicidal Thoughts

Often feeling cold

Cold hands and feet

High or rising cholesterol

Bizarre and Debilitating reaction to exercise

Hard stools

Constipation

No eyebrows or thinning outer eyebrows

Dry Hair

Hair Loss

White hairs growing in

No hair growth, breaks faster than it grows

Dry cracking skin

Nodding off easily

Requires naps in the afternoon

Sleep Apnea (which can also be associated with low cortisol)

Air Hunger (feeling like you can

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Now I know that I have Hashi's, & Hypopituitarism ( an underactive pituitary probably from an autoimmune attack as well. This has caused adrenal insiffieciency.

Hi Pincushion,

how did you discover the hypopituitarism? and how do you deal with it?

I'm very suspicious that that may be a concern for me. for the past couple of years I've had progressively more apparent hypothyroid symptoms, in particular I'm COLD. bad enough that at times I have woken up in the middle of the night (ie 2 am) to have a hot bath just to get warm enough to sleep. plus I've put on 30 lbs since July, the last 12 in 4 days (not a typo).

my GP has run the TSH test and it came back at .8. Love my GP to death, he's a great guy and really tries to figure things out, I asked about free T3 and T4 and unfortunately in Canada you have to have a TSH reading above 5 b4 they will run the test (I asked, he did explain)

sorry to hijack the thread! as far as the thread topic, I also get neuro symptoms from gluten:

feel super cold if I ingest gluten by mistake, PN in my fingertips, sometimes my feet, migraines, optical migraines, walk into walls (this is one of the best things about having gone gluten-free, no more collisions!) anxiety, muscle cramps (especially my feet and my hip flexors) and that's all b4 the traditional gluten reactions! I do have to say tho, I don't get them necessarily all at once but I will experience at least a couple of neuro symptoms any time I screw up.

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Hi Pincushion,

how did you discover the hypopituitarism? and how do you deal with it?

I'm very suspicious that that may be a concern for me. for the past couple of years I've had progressively more apparent hypothyroid symptoms, in particular I'm COLD. bad enough that at times I have woken up in the middle of the night (ie 2 am) to have a hot bath just to get warm enough to sleep. plus I've put on 30 lbs since July, the last 12 in 4 days (not a typo).

my GP has run the TSH test and it came back at .8. Love my GP to death, he's a great guy and really tries to figure things out, I asked about free T3 and T4 and unfortunately in Canada you have to have a TSH reading above 5 b4 they will run the test (I asked, he did explain)

sorry to hijack the thread! as far as the thread topic, I also get neuro symptoms from gluten:

feel super cold if I ingest gluten by mistake, PN in my fingertips, sometimes my feet, migraines, optical migraines, walk into walls (this is one of the best things about having gone gluten-free, no more collisions!) anxiety, muscle cramps (especially my feet and my hip flexors) and that's all b4 the traditional gluten reactions! I do have to say tho, I don't get them necessarily all at once but I will experience at least a couple of neuro symptoms any time I screw up.

Hi there,

I discovered it after years of begging doctors to find out what was wrong with me. Then, by chance I ran across this site Stop The Thyroid Madness and everything started clicking. Throught the site I learned that the TSH is a pituitary hormone, not a thyroid hormone and is not good at diagnosing hypothyroid or Hashimotos. So I begged my PCP to test Free T4, Free T3 and both thyroid antibodies. I came back positive for the thyroid antibodies and was diagnosed as hypothyroid caused by Hashimoto's an autoimmune attack on my thyroid. Usually if you have one autoimmune prob, you are likely to have others. I was also diagnosed with Lichen Sclerosis, a rare skin condition, also auto immune. So, I disovered it after researching and asking questions through the sites I listed and getting advice on what tests to run. I am still on my road to recovery only getting diagnosed last year. I am now on Hormone replacement therapy including cortisol for my adreanl insuffieciency. The optimal range for TSH is way way way way below 5...OMG! You definately need to visit those sites I told you about. However, like I said the TSH means nothing. My TSH was 0.5070---very low, but I had positive antibodies and Hypo symptoms...the TSH tells you if your pit. is working...mine is not! Hope you get your answers soon. :)

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Pituitary...hm that's interesting. I'd like to learn more. I was tested for autoimmune hypothyroid but I don't' have it. Just low output and high input until I'm on thyroid meds. Then my thyroid is normal. Still, as a Neuroscience major, I'm always interested in learning more about the brain.

EDIT: ok I know I had high TSH so it was my thyroid, not my pituitary that was the problem, according to the article I found. Not sure if it was my hypothalamus, which might have some damage since I do have Narcolepsy, but it's not Hashimoto's, Grave's, or pituitary. So...whew? I dunno. The meds work is all I know. It kind of runs in my family so what did I expect? lol :P

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Pituitary...hm that's interesting. I'd like to learn more. I was tested for autoimmune hypothyroid but I don't' have it. Just low output and high input until I'm on thyroid meds. Then my thyroid is normal. Still, as a Neuroscience major, I'm always interested in learning more about the brain.

EDIT: ok I know I had high TSH so it was my thyroid, not my pituitary that was the problem, according to the article I found. Not sure if it was my hypothalamus, which might have some damage since I do have Narcolepsy, but it's not Hashimoto's, Grave's, or pituitary. So...whew? I dunno. The meds work is all I know. It kind of runs in my family so what did I expect? lol :P

You can learn more about hypopitiatary throught Real Thyroid Help and Hormone Support Group. Hopefull you have a doc that is treating you with Armour as Synthroid or Levothyroxine leaves patients undertreated as Syncrap has only T4 and our bodies produce T4 and T3 and many hypo people have trouble converting the T4 to T3. Also, many patients who have been undertreated by synthroid for years begin to suffer from adrenal fatigue because of the defieciency of the T4 only replacement. If you are still having lingering symptoms on gluten free and you think your thyroid is optimized, I would definately check into thyroid info more. Also, the fact that it runs in the family is clue that it may be autoimmune Hashimotos (you can have it and your test come back negative and you can have high TSH with Hashimotos because with it you swing from hyper to hypo periodically). Also, if you have celiac (autoimmune) you may have Hashimotos which made you hypo/hyper because Hashi's is auto immune as well (they tend to run together). Have you had both thyroid antibodies tested? I have learned all of this through research and the sites. Just my two cents worth!

Have a great day!

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To be honest, I don't know exactly what antibodies they tested. They just ran a 'standard' thyroid antibody test...standard for their office. My doctor tends to be more thorough than most, but I didn't ask what they tested for. They just told me it's not autoimmune.

I take Armour which works great. The only part I hate is the waiting 30 mins to have breakfast. I get hungry! :(

The feeling cold in bed thing is interesting...before starting Armour I used to get really cold just after falling asleep. It would wake me up and I'd have to bundle up to fall back asleep, but no amount of covers would help. It would pass after about 5 minutes on its own. Now that doesn't happen anymore and I didn't even notice until you guys mentioned it. Was that a thyroid thing?

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Yes, feeling cold is a low thyroid symptom and if you are stll having it then you beed more Armour. Most people do best on 3-5 grains.

You can take Armour sublingually so you do not have to wait as long to eat. Just put it under your tongue or between your gum and cheek and it will desolve. Its better to take it this way because you do not have to wait 2 hours to take vitamins either. Also Armour should be spread out through the day with your highest dose in the morning and this is were sublingual makes it easier. :P

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Hi pincushion,

Have the eyebrows gone back to normal (white hairs and thinning)? And the cold bum?

thanks!

List of symptoms from STTM

Less stamina than others

Less energy than others

Long recovery period after any activity

Inability to hold children for very long

Arms feeling like dead weights after activity

Chronic Low Grade Depression

Suicidal Thoughts

Often feeling cold

Cold hands and feet

High or rising cholesterol

Bizarre and Debilitating reaction to exercise

Hard stools

Constipation

No eyebrows or thinning outer eyebrows

Dry Hair

Hair Loss

White hairs growing in

No hair growth, breaks faster than it grows

Dry cracking skin

Nodding off easily

Requires naps in the afternoon

Sleep Apnea (which can also be associated with low cortisol)

Air Hunger (feeling like you can’t get enough air)

Inability to concentrate or read long periods of time

Forgetfulness

Foggy thinking

Inability to lose weight

Always gaining weight

Inability to function in a relationship with anyone

NO sex drive

Moody periods

PMS

Inability to get pregnant; miscarriages

Excruciating pain during period

Nausea

Swelling/edema/puffiness

Aching bones/muscles

Osteoporosis

Bumps on legs

Acne on face and in hair

Breakout on chest and arms

Hives

Exhaustion in every dimension–physical, mental, spiritual, emotional

Inability to work full-time

Inability to stand on feet for long periods

Complete lack of motivation

Slowing to a snail’s pace when walking up slight grade

Extremely crabby, irritable, intolerant of others

Handwriting nearly illegible

Internal itching of ears

Broken/peeling fingernails

Dry skin or snake skin

Major anxiety/worry

Ringing in ears

Lactose Intolerance

Inability to eat in the mornings

Joint pain

Carpal tunnel symptoms

No Appetite

Fluid retention to the point of Congestive Heart Failure

Swollen legs that prevented walking

Blood Pressure problems

Varicose Veins

Dizziness from fluid on the inner ear

Low body temperature

Raised temperature

Tightness in throat; sore throat

Swollen lymph glands

Allergies (which can also be a result of low cortisol–common with hypothyroid patients)

Headaches and Migraines

Sore feet (plantar fascitis); painful soles of feet

now how do I put this one politely….a cold bum, butt, derriere, fanny, gluteus maximus, haunches, hindquarters, posterior, rear, and/or cheeks. Yup, really exists.

I hope to start gluten free Monday!

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    • egs1707. Are you in Canada?  It's NOT a good idea to go gluten free between now & the GI appt. and here's why.... MOST of us have MUCH stronger reactions to gluten when we go back on it for the endoscopy. A lot of people have had such strong reactions that they have been entirely unable to complete the challenge and have to call it quits. This means they never get an official dx. It's your call, you make the choice. However, I will say that you don't have to eat a lot of gluten, a couple saltines or a slice of bread per day. 
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    • Hi All this is my blood test result 1.immunogloblulin serum 203 ( 87-350) 2.Deamidated Gliadin IGA  4 ( 0-19 negative) 3.Deamidated Gliadin IGG 3(0-19 negative) 4.Transglutainase IGA <2 ( 0-3 negative) 5.Transglutainase IGG <2 ( 0-3 negative) does it mean most likely no celiac ? thanks.  
    • At the moment it's microwave rice packets as it needs to be something easy for lunch at work. What do you choose for breakfast? At the moment I have gluten-free porridge oats with fruits but also seeing oats are a bit of a gamble in the early days. Trying to figure out how long a reaction takes to show up i.e. if I feel ropey later in the day is it really lunch as I'm blaming at present or actually is it something from the morning or even night before? The food is the toughest bit for me right now; wasn't that great with it before so will need plenty ideas from you good people... seems I'm in the right place though   
    • I know what you're going through - it's that grieving process and it's tough.  I was diagnosed in 2013, and aside from an occasional pity party, I don't look back. I have my restaurants where I feel safe, I have the food I know I can eat, and I get on with my life.  I'm lucky that I live in a big city with lots of options, but you can make this work, and you will feel better and once you do, you'll stop grieving.  The people on this site helped enormously. It is tough in the beginning to know if you've been 'glutened' vs. just going through withdrawal.  For that reason alone, it's best to avoid restaurants for a little while and be careful at home - just to be sure what's happening.  Eventually you'll be able to get back to your version of 'normal'.  Oh, I also have hypothyroid/hashimoto's.  No big deal, I take synthroid. Quinoa, eggs, nuts and beans for protein.  You don't have to go crazy on the cooking.  Just eat a lot of whole foods.  There are a lot of complicated recipes out there, but now may not be the time.  Rice noodles in veggie bouillon - easy and cheap.  gluten-free pasta with olive oil, parmesan and garlic - easy.  I eat a lot of rice and have never had a problem - you're not getting it out of one of those bulk bins, are you?  That could be contaminated.  Go with packaged.  Do you have access to the Macro Vegetarian brand of prepared rice dishes (in the refrigerated section).  They have several that are gluten free, they're delicious heated and with a little gluten-free soy sauce.  They're my go to on days I don't want to cook. Good luck!  
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