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mommyto3

Question For Those With Neurological Symptoms

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I have celiac with mild gut symptoms but what I think is pretty significant neurological symptoms. When I eat gluten I get headaches, terrible depression and crazy muscle twitching and little stabbing pains all over.

I've been gluten free for 4 months now (with a few accidental slip ups but I think I've done well lately). My question is how long does it take for the neurological symptoms to subside? I can't even seem to trace my neuro symptoms to a glutening anymore...

For instance, I'm currently having muscle twitching and those little pin pricks all over with a slight headache but I KNOW I didn't eat any gluten today. It just started off slow this morning and has gotten progressively worse. Seems I don't even need the gluten to trigger it anymore. Could it be a delayed response? Maybe I got glutened yesterday?

Could it be my thyroid? I've read that thyroid dysfunction can cause this. My doc recently did a full thyroid test but didn't mention anything being high/low.

Thanks in advance for any input :)

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Are you taking sublingual B12 along with other supplements? It took a while for me to heal neuro wise and the B12 helped a lot.

Are you also eating a mostly unprocessed whole foods diet? If not you should be for a while. It will help keep CC risks down and help you heal faster.

I found I am very sensitive and need to be careful of toiletries, shampoos, lotions etc and if you are not already avoiding gluten in those items you should start. Be sure you are also checking any meds you take with the maker and also be careful with supplements. Read all the ingredients on supplements as sometimes they will have wheat and barley grass and still be labeled gluten free. Avoid those.


Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying

"I will try again tommorrow" (Mary Anne Radmacher)

Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002

Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis

All bold resoved or went into remission in time with proper diagnosis of Celiac November 2002

 Gene Test Aug 2007

HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

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Dizziness and brain fog were my main symptoms before I went gluten-free. I agree strongly with the advice to remain processed food/preservative free, and I have read that it could take a year or even longer, depending on you, to feel normal neurologically. I am less than 3 months into it, have been eating only meats, veggies, some fruit and raw honey, and I feel FANTASTIC! A couple of nights ago I decided to "try" a little dipping sauce for my chicken breast that contained just a tablespoon of organic ketchup that states gluten-free, but even THAT little bit of "process" made me slightly light headed for about an hour. That's a far cry from major dizziness I felt at first, so it is getting better, but I'm not there yet.

And incidentally, gluten doesn't make me as dizzy as gluten-free processed food or, for me, casein. Dairy is the biggest dizzy offender for me.


K Wylee

Gluten Intolerant, Positive test, June 2010

Casein sensitivity, Positive test, June 2010

Reactive to soy, most processed foods & preservatives, June 2010

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My neuro symptoms got better very slowly and very gradually. At 2 years post diagnosis, they are not gone and I'm not sure they will ever be all gone. Every glutening sets me back, but the reaction is weaker every time and the recovery is quicker every time. Things that helped were keeping my low blood pressure up with lots of hydration and salt, taking my vitamins especially the calcium/magnesium/zinc/D tablet, and trigger point massage (a Physical therapist taught me how to do it myself). Nothing was a silver bullet, but I would recommend the vitamins. I suspect it was the magnesium that helped the twitching. I think a lot of the neurosymptoms for me are a low grade migraine. Beta blockers helped in the beginning, but they took my blood pressure too low. Imitrex helped immensely, but I'm only allowed 9/month. They get me through accidental glutenings and my PMS migraine/increased symptoms days. Finally, I got a surprise pregnancy that has taken almost all of my neuro symptoms away. I wish I could figure out how to stay 6 weeks pregnant for the rest of my life. I'm guessing the HCG is healing some things in my body. OH! I drink DHA soymilk. I like the taste better, but I have a suspicion that the DHA helps my neuro a bit.

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My neuro symptoms got better very slowly and very gradually. At 2 years post diagnosis, they are not gone and I'm not sure they will ever be all gone. Every glutening sets me back, but the reaction is weaker every time and the recovery is quicker every time. Things that helped were keeping my low blood pressure up with lots of hydration and salt, taking my vitamins especially the calcium/magnesium/zinc/D tablet, and trigger point massage (a Physical therapist taught me how to do it myself). Nothing was a silver bullet, but I would recommend the vitamins. I suspect it was the magnesium that helped the twitching. I think a lot of the neurosymptoms for me are a low grade migraine. Beta blockers helped in the beginning, but they took my blood pressure too low. Imitrex helped immensely, but I'm only allowed 9/month. They get me through accidental glutenings and my PMS migraine/increased symptoms days. Finally, I got a surprise pregnancy that has taken almost all of my neuro symptoms away. I wish I could figure out how to stay 6 weeks pregnant for the rest of my life. I'm guessing the HCG is healing some things in my body. OH! I drink DHA soymilk. I like the taste better, but I have a suspicion that the DHA helps my neuro a bit.

Congrats on the pregnancy! I've had three babies and my neuro symptoms were completely absent while pregnant each time. I felt fantastic.....wish I could stay pregnant forever :o)

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Any thoughts as to what pregnancy does that temporarily rids you of the neurological symptoms? Increased blood flow in the body? Hormones? Pregnancy vitamins? I'm really intrigued about this. Not that I'd be willing to try it, nor could I. Just wondering if any conclusions have been drawn by this happening.


K Wylee

Gluten Intolerant, Positive test, June 2010

Casein sensitivity, Positive test, June 2010

Reactive to soy, most processed foods & preservatives, June 2010

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Any thoughts as to what pregnancy does that temporarily rids you of the neurological symptoms? Increased blood flow in the body? Hormones? Pregnancy vitamins? I'm really intrigued about this. Not that I'd be willing to try it, nor could I. Just wondering if any conclusions have been drawn by this happening.

I would love to know for sure but I suspect progesterone. I had debilitating foot pain and severe depression/anxiety until I was about 6wks pregnant with my son. Then, magically, it went away for a few months. The foot pain actually didn't start to come back until he was close to a year, right before my first period returned, so I really think it's hormones. I was really bad about taking prenatals so it definitely wasn't that.

I've also read that progesterone cream can really help with arthritis. Coincidence?

Oh also my mom, who I suspect has celiac, has suffered from severe migraines for her entire life. EXCEPT during her four pregnancies.

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Any thoughts as to what pregnancy does that temporarily rids you of the neurological symptoms? Increased blood flow in the body? Hormones? Pregnancy vitamins? I'm really intrigued about this. Not that I'd be willing to try it, nor could I. Just wondering if any conclusions have been drawn by this happening.

My mom said the same thing. She felt the best she ever felt in her life being pregnant. As a result she took risks and ended up having 6 kids instead of 3! And yes she too has celiac--since she was four even though she thought she had "grown out of it" by her early twenties. Many of her symptoms later on were the neuro ones--headaches and joint aches, frozen shoulder, tendonitus, eye problems, anxiety, schizy behavior, poor memory etc.

I am wondering if being pregnant in some ways temporarily reverses celiac. Is that possible? Am thinking it might be related to what makes stem cells so miraculous...

Meanwhile here I am up at all odd hours. I still have trouble sleeping due to an old injury that acts up as well as all the tingling and buzzing and jerking that results from difficulty having enough B-1. Not eating any grains these days I am betting doesn't help either...However I need to stay away from even non glutenous grains for now so I can kill off the candida overgrowth--which has plagued me most of my life--but got even worse after another round of antibiotics around a year ago.


Diagnosed celiac sprue as infant: failure to thrive & pneumonia-back on grains age 4. Began herbs 1971 combating chronic kidney disease/general ill health 1973. Avoid wheat family and "allergens" by 1980. Late 80's doc. diagnosed candida: cave-man diet. Diagnosed degraded myelin sheath 2006; need co-enzyme B vitamins. Discovered celiac fall 2007; finally told diagnosis as infant. Recently found I am salicylic acid intolerant. Ironically can't tolerate most herbs now. Can now eat brown rice & other gluten-free grains (except corn) & even maple syrup & now homeopathic medicine works! Am still exploring the shape of this elephant but I've made progress!

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Any thoughts as to what pregnancy does that temporarily rids you of the neurological symptoms? Increased blood flow in the body? Hormones? Pregnancy vitamins? I'm really intrigued about this. Not that I'd be willing to try it, nor could I. Just wondering if any conclusions have been drawn by this happening.

I wonder about that also. I am another one who had all my symptoms go into remission while preggers, although I did have nasty morning sickness with my second. They came back with a vengence after pregnancy though. I wonder if the same mechanism that keeps us from recognizing the fetus as a 'foreign body' keeps the celiac symptoms at bay.


Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying

"I will try again tommorrow" (Mary Anne Radmacher)

Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002

Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis

All bold resoved or went into remission in time with proper diagnosis of Celiac November 2002

 Gene Test Aug 2007

HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

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I wonder about that also. I am another one who had all my symptoms go into remission while preggers, although I did have nasty morning sickness with my second. They came back with a vengence after pregnancy though. I wonder if the same mechanism that keeps us from recognizing the fetus as a 'foreign body' keeps the celiac symptoms at bay.

I personally think it might be a combination of hormones, better absorbtion and remission of celiac because your immune system is supressed during pregnancy. I've often thought of going on birth control to see what happens but I have a very strong family history of uterine cancer and my mother's gyno warned me never to take any hormones for any reason. I wonder though.............

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I personally think it might be a combination of hormones, better absorbtion and remission of celiac because your immune system is supressed during pregnancy. I've often thought of going on birth control to see what happens but I have a very strong family history of uterine cancer and my mother's gyno warned me never to take any hormones for any reason. I wonder though.............

Its true--celiac is a symptom of an overactive immune system. I didn't know that the immune system was repressed during pregnancy.

I also recall in times past that when I was really ill I often could eat food and not react to it like I would do if I were healthy. I wonder if this relates too?

Of course we are going far afield from the neuro questions...

Or are we??

Still its fun to track down questions like this and not worry about being overly structured.

Bea


Diagnosed celiac sprue as infant: failure to thrive & pneumonia-back on grains age 4. Began herbs 1971 combating chronic kidney disease/general ill health 1973. Avoid wheat family and "allergens" by 1980. Late 80's doc. diagnosed candida: cave-man diet. Diagnosed degraded myelin sheath 2006; need co-enzyme B vitamins. Discovered celiac fall 2007; finally told diagnosis as infant. Recently found I am salicylic acid intolerant. Ironically can't tolerate most herbs now. Can now eat brown rice & other gluten-free grains (except corn) & even maple syrup & now homeopathic medicine works! Am still exploring the shape of this elephant but I've made progress!

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I personally think it might be a combination of hormones, better absorbtion and remission of celiac because your immune system is supressed during pregnancy. I've often thought of going on birth control to see what happens but I have a very strong family history of uterine cancer and my mother's gyno warned me never to take any hormones for any reason. I wonder though.............

I'm on the birth control pill and have been since 2005. Actually, there was a one year period during that time (in 2008-2009) when I was off the pill completely. I found that being on or off the pill made no difference for my GI symptoms. I have alot of the neuro symptoms - I've had depression since high school (so around 1999ish when I was in grade 9), which the pill hasn't affected at all. The other neurological symptoms (peripheral neuropathies, gait problems, night sweats) only just started this past fall 2009. I may be an outlier, and i won't dismiss that possibility, but for me, being on or off oral contraceptives makes no difference for my symptoms. I would suspect that the suppressive effect of pregnancy does have alot to do with the immunological suppression which also occurs during pregnancy - there's actually a fair bit of information on which autoimmune disorders are excacerbated or ameliorated by pregnancy - although I don't ever recall reading anything formal about celiac disease.

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On the preggo topic- I was the sickest I've ever been in my life and my neuro symptoms were very bad with both pregnancies. I was undiagnosed with both.

On the neuro topic- my neuro issues started to get better the quickest of my symptoms, but they are the quickest to come back if I get glutened. However they did take awhile to go away.

Dehydration was a major factor for me when I first went gluten free. I had to be very careful with my water consumption. I also drank and still drink, Gatorade and it literally changed my life. It helped so much with the dizziness, shakes, etc. I tried the natural electrolytes and they made me very ill with explosive D, no matter what brand, but good old Gatorade made me able to function and feel somewhat normal.


Lots of doctors diagnosed me with lots of things including IBS, lactose intolerance, wheat intolerance, and quite a few of them threw up their hands in total confusion.

Had GI symptoms, allergy symptoms and unexplained illness my whole life.

Jan. 2010 Diagnosed celiac at the age of 40.

Ready to get well and get on with my life!

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On the preggo topic- I was the sickest I've ever been in my life and my neuro symptoms were very bad with both pregnancies. I was undiagnosed with both.

On the neuro topic- my neuro issues started to get better the quickest of my symptoms, but they are the quickest to come back if I get glutened. However they did take awhile to go away.

Dehydration was a major factor for me when I first went gluten free. I had to be very careful with my water consumption. I also drank and still drink, Gatorade and it literally changed my life. It helped so much with the dizziness, shakes, etc. I tried the natural electrolytes and they made me very ill with explosive D, no matter what brand, but good old Gatorade made me able to function and feel somewhat normal.

Just goes to show how we are all different!

I take liquid trace sea minerals for electrolytes. I would never touch anything sugary like gatorade! I simply have too much candida in my system --which do by the way contribute to neurological symptoms.

Bea


Diagnosed celiac sprue as infant: failure to thrive & pneumonia-back on grains age 4. Began herbs 1971 combating chronic kidney disease/general ill health 1973. Avoid wheat family and "allergens" by 1980. Late 80's doc. diagnosed candida: cave-man diet. Diagnosed degraded myelin sheath 2006; need co-enzyme B vitamins. Discovered celiac fall 2007; finally told diagnosis as infant. Recently found I am salicylic acid intolerant. Ironically can't tolerate most herbs now. Can now eat brown rice & other gluten-free grains (except corn) & even maple syrup & now homeopathic medicine works! Am still exploring the shape of this elephant but I've made progress!

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Just goes to show how we are all different!

I take liquid trace sea minerals for electrolytes. I would never touch anything sugary like gatorade! I simply have too much candida in my system --which do by the way contribute to neurological symptoms.

Bea

People give me a ration on here for my Gatorade but it works for me. I spent over $100 on different natural electrolytes and every single blinkin one of them made me very sick and then awhile later I tried them again and whammo. Run to the toilet, etc.

I'm experiencing neuro issues tonight from a glutening. I think my little girl CC'd me. I have anxiety, shakiness and dizziness. I drank a Gatorade awhile ago and I'm feeling much better.


Lots of doctors diagnosed me with lots of things including IBS, lactose intolerance, wheat intolerance, and quite a few of them threw up their hands in total confusion.

Had GI symptoms, allergy symptoms and unexplained illness my whole life.

Jan. 2010 Diagnosed celiac at the age of 40.

Ready to get well and get on with my life!

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my first pregnancy was my celiac 'trigger' - my first misdiagnosis: colitis. wierd how I can look back over the past 25 yrs and all the pieces of my (sick) life fall into place. ie: I was hospitalized years ago dehydrated and couldn't keep anything down. had a giant anxiety attack. the drs stood around my room scratching their heads. they thought I had hepatitis but all the blood tests came back negative. they kept me for a week and then they sent me home when I could keep food down. a month later I felt horrible again and they wanted to take out my gall bladder. at that point I felt they had NO CLUE so I said 'prove it' but they never could. nobody ever even mentioned celiac. over the years I have been prescribed 'appetite' drugs but they just made me stupid. at the time I was chasing 4 little kids around so the lethargy outweighed the meagre benefits.

people who know me know how long I have struggled and how frustrated I have been. now they're like wowwww now it makes sense.


arlene

misdiagnosed for 25 years!
just as i was getting my affairs in order to die of malnutrition...
gluten free 7/2010
blood test negative
celiac confirmed by endoscopy 9/2010

 

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Celiac.com - Celiac Disease Board Moderator

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