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Neuro Symptoms

Guava

By Guava
in Coping with Celiac Disease

Recommended Posts

Guava Newbie
Guava
Posted

Hey all, I am new to the board here. For two years I had fatigue that turned into muscle pains, and facilations. These symptoms progresed slowly but eventually began to come and go. I started having really bad belches and felt super bloated all the time and they gave me a scope. The results came back that I had intestinal damage and they suspected Celiacs for sure. They made me go get Blood tests and they came back negative. Is this possible that I am not a Celiac? I have many of the symptoms and they do not seem to have elaborated on this diagnosis at all. Also i have started the Gluten free diet. Anybody else have these Muscle and nervous issues??

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vbecton Explorer
vbecton
Posted

Welcome! I can relate to the muscle cramps/neuro symptoms. Now that I'm on a gluten free diet, that is mainly how I can tell if I've accidently ingested gluten...I get restless leg syndrome in my legs and shoulders/arms almost like I'm having a seizure. It's crazy! Before I went gluten-free, I would get muscle cramps daily (along with lots of other symptoms). I also can't eat ANY processed carbs past 1 or 2pm, otherwise I will get a mild form of what I call the gluten seize :P

And yes, it's definitely possible to have Celiac without a positive blood test result. Good luck!!

Guava Newbie
Guava
Posted
  • Author

That makes me feel better, I was on the diet ( so i thought ) for a few months but was totally mistaken about cross contamination. Did your neuro symptoms clear up?

Mari Enthusiast
Mari
Posted

Find out which test was negative and let us know. None of the tests are 100% and there may be as much as 30% false negatives, even with the small intestine biopsy. I think this website has a page about tests and what they mean.

conniebky Collaborator
conniebky
Posted

I have mostly only neuro responses. Vertigo, dizziness, a feeling that I'm going to float out of my chair, numbness, clumsiness, vision problems, joint pain, muscle weakness.

My stomach was bloated for a long time, but I didn't even realize that until I went gluten-free. All the symptoms stopped when I went gluten-free.

A lot of other people here have neuro responses, too. They'll be along shortly I'm sure.

I did have some stomach issues, but to say the truth, I think I got so used to those that I didn't realize the whole thing was connected.

ravenwoodglass Mentor
ravenwoodglass
Posted

That makes me feel better, I was on the diet ( so i thought ) for a few months but was totally mistaken about cross contamination. Did your neuro symptoms clear up?

For the most part yes. It take a while though. I did have to be really careful of CC and also need to avoid it in distilled products. I found sublingual B12 to be helpful.

kayo Explorer
kayo
Posted

I had nerve issues and anxiety as well but never made the connection until recently and well after going gluten-free. The tips of my fingers were numb and I had a small numb spot on my face - both of which I had attributed to disc surgery years ago. These disappeared after going gluten-free. They do come back temporarily when I've been glutened which actually helps me realize I have been glutened. I am clumsy and I don't sleep well but those things have improved. I've also seen a major decline in headaches and migraines. I've only had one migraine since going gluten-free. My dry eyes have improved which has helped my vision.

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bluebonnet Explorer
bluebonnet
Posted

i have numbness/tingling down my leg, feet and hands. i noticed (towards the end of my 3rd month) that has become less frequent. same with the ataxia, also a noticable difference. not gone yet (still have a long way to go especially since i did a challenge and reversed some of the healing). which i also noticed was increased while on said challenge. dry eyes and insomnia are still a major issue. but as time goes on things will improve!

conniebky Collaborator
conniebky
Posted

i have numbness/tingling down my leg, feet and hands. i noticed (towards the end of my 3rd month) that has become less frequent. same with the ataxia, also a noticable difference. not gone yet (still have a long way to go especially since i did a challenge and reversed some of the healing). which i also noticed was increased while on said challenge. dry eyes and insomnia are still a major issue. but as time goes on things will improve!

I didn't know that dry eye was one of the symptoms! I went to the eye dr., and they numbed my eyes and put these little white stick things in my eyes and they said the tears will make them turn yellow so they can tell how dry my eyes are. I TOLD THEM THAT WHEN I GOT THERE LOL

Anyway, they took them out and they were completely white. No yellow anywhere! I've been using those artificial tears forever - I don't use those anymore. I never knew that was a symptom and I never realized I quit using them!

conniebky Collaborator
conniebky
Posted

I didn't know that dry eye was one of the symptoms! I went to the eye dr., and they numbed my eyes and put these little white stick things in my eyes and they said the tears will make them turn yellow so they can tell how dry my eyes are. I TOLD THEM THAT WHEN I GOT THERE LOL

Anyway, they took them out and they were completely white. No yellow anywhere! I've been using those artificial tears forever - I don't use those anymore. I never knew that was a symptom and I never realized I quit using them!

Traveller Rookie
Traveller
Posted

I read an interesting story in The Lancet on the neurological manifestations of celiac disease. The article said that an autoimmune reaction in the gut has a marker of TTG2; that's the marker in nearly all celiac panels. For an autoimmune reaction in the brain, however, the marker is TTG6. Apparently few labs can check for that marker, and few doctors know about it. See Open Original Shared Link

So yes, you could have celiac disease with a negative celiac panel. Or you could be one of the handful out of a hundred that has a negative serologic test and a positive gut biopsy. Or you could be gluten intolerant, with a negative blood test.

zergcoffeebean Newbie
zergcoffeebean
Posted

I have had chronic migraines since I was a child, and that of course comes with a whole closet full of neurological symptoms, so it's difficult for me to seperate what is caused by gluten and what is caused by my migraines. I have noticed when I am glutened though that I have sore legs, muscle spasms when I try to sleep, and it makes it very hard to sleep. I'm not sure that info helps you.

sa1937 Community Regular
sa1937
Posted

Interesting info about dry eyes and how they *may* get better with a gluten free diet. I was officially diagnosed with a EGD/biopsy on April 9 following a positive celiac blood panel in Dec. I went gluten free on April 9.

I do have severely dry eyes. I've had them before but nothing like what I went through this winter.

The pressure in my eyes has been up (controlled now with two different eye drops) plus I'm on Restasis since mid-March (takes 6 to 8 weeks to work) and also use Erythomycin eye oitment at bedtime (was on various eye ointments every three hours at one point). I also have had the tear drainage duct thingies plugged (for the third and final time) as I'm producing very few tears. If these fall out, next step is cauterization (ouch). I also had humidifiers running this winter to increase moisture in the house. Right now my eyes don't feel irritated but the humidity is high with the advent of our summer weather.

For those who have seen improvement with a gluten free diet, how long did it take before your eyes felt better?

sa1937 Community Regular
sa1937
Posted

I didn't know that dry eye was one of the symptoms! I went to the eye dr., and they numbed my eyes and put these little white stick things in my eyes and they said the tears will make them turn yellow so they can tell how dry my eyes are. I TOLD THEM THAT WHEN I GOT THERE LOL

Anyway, they took them out and they were completely white. No yellow anywhere! I've been using those artificial tears forever - I don't use those anymore. I never knew that was a symptom and I never realized I quit using them!

Connie, they were probably testing you for Sjogren's syndrome. I asked my eye dr. about that but she said I would also have an extremely dry mouth (I don't)

kayo Explorer
kayo
Posted

I've had those paper tests too and they were barely yellow. I kept thinking I had post-it notes on my eyeballs! I tried restasis but it never worked for me, in fact it seem to make my eyes worse. I also took doxycycline for about a year and that helped a bit. I had punctal plugs (tear ducts plugs) put in and that helped a lot but they tend to fall out every 6 months or so. I ended up having one tear duct cauterized. Ok, that was not fun but it was over quickly and that eye is doing very well. It was worth doing. That eye is in much better shape than the one that just has the plugs. Those plugs are falling out again and I'll likely get it cauterized :blink: . I saw an improvement in my eyes about 3-4 months after going gluten free and then dramatically better after I went soy free. I do use drops throughout the day but I rarely need my glasses. Usually I just need them for driving at night. The corneas are so much better my overall vision is better. I'm sure changing to gluten-free and soy free makeup helped too.

eta, I have Sjogrens and my mouth isn't extremely dry, it seems to affect my eyes and skin the most.

sa1937 Community Regular
sa1937
Posted

I've had those paper tests too and they were barely yellow. I kept thinking I had post-it notes on my eyeballs! I tried restasis but it never worked for me, in fact it seem to make my eyes worse. I also took doxycycline for about a year and that helped a bit. I had punctal plugs (tear ducts plugs) put in and that helped a lot but they tend to fall out every 6 months or so. I ended up having one tear duct cauterized. Ok, that was not fun but it was over quickly and that eye is doing very well. It was worth doing. That eye is in much better shape than the one that just has the plugs. Those plugs are falling out again and I'll likely get it cauterized blink.gif . I saw an improvement in my eyes about 3-4 months after going gluten free and then dramatically better after I went soy free. I do use drops throughout the day but I rarely need my glasses. Usually I just need them for driving at night. The corneas are so much better my overall vision is better. I'm sure changing to gluten-free and soy free makeup helped too.

eta, I have Sjogrens and my mouth isn't extremely dry, it seems to affect my eyes and skin the most.

Thanks, Kayo! I'm hoping it works that well for me. I've only been gluten free since April 9. Since it's summery now with higher humidity, I don't seem to have too much of a problem with eye irritation. I occasionally use artificial tears. My next follow-up appt. is the end of July so I'll find out how my eyes are doing then. I'll definitely be getting the humidifiers out once we get into fall and winter and hopefully avoid the eye irritation I experienced this past winter.

GlutenFreeManna Rising Star
GlutenFreeManna
Posted

Hey all, I am new to the board here. For two years I had fatigue that turned into muscle pains, and facilations. These symptoms progresed slowly but eventually began to come and go. I started having really bad belches and felt super bloated all the time and they gave me a scope. The results came back that I had intestinal damage and they suspected Celiacs for sure. They made me go get Blood tests and they came back negative. Is this possible that I am not a Celiac? I have many of the symptoms and they do not seem to have elaborated on this diagnosis at all. Also i have started the Gluten free diet. Anybody else have these Muscle and nervous issues??

I had neuro symptoms that started before I had any gastro symptoms as well. Fatigue, muscle spasms and pain, weakness in my hands, and really bad brain fog. I was testing for so many different things, but none even close to celiac's. I never would have looked into celiac if I hadn't started to have the bloating, gas, and belching. The belching was the most embarrassing because sometimes it would just come out--like I would open my mouth to say something to someone and instead of speaking a loud belch came out. I could stifle most of them if I was at a party, but one or two would still come out. I would stifle them and then go home and belch every few minutes for hours. My husband made joke about it at first, until he realized I couldn't stop it. Anyway, when I suspected either celiac or some other food intolerance, I couldn't find a doctor that would take me seriously because most of my symptoms were neurological. They were trying to diagnose me with fibromyagia or chronic fatigue syndrome. I did an elimination diet and my symptoms went away (for the most part). They came back when I added wheat, soy or dairy (different symptoms for each one). So, for me, I had my answer from that. You at least have a doctor that suspects Celiac. A biopsy of the damaged tissue in your intestines would be more likely to give you a positive than a blood test. When you took the blood test had you already been avoiding gluten? That makes it even more likely a test will come back with a false negative.

GlutenFreeManna Rising Star
GlutenFreeManna
Posted

I didn't know that dry eye was one of the symptoms! I went to the eye dr., and they numbed my eyes and put these little white stick things in my eyes and they said the tears will make them turn yellow so they can tell how dry my eyes are. I TOLD THEM THAT WHEN I GOT THERE LOL

Anyway, they took them out and they were completely white. No yellow anywhere! I've been using those artificial tears forever - I don't use those anymore. I never knew that was a symptom and I never realized I quit using them!

I didn't know about the dry eyes either until I just read this thread. I am just putting two and two together. Prior to getting sick I wore contacts, when my symptoms were the worst I could not wear my contacts without pain because my eyes were too dry all the time. Now after going gluten free I decided to try contacts again last month and I can wear them. I can't wear them all day yet, but if I'm going out and I want to look nice or I need to drive at night (contacts are better for me for night driving) I put them in for a few hours and don't have any problems.

6ft6 Newbie
6ft6
Posted

I have severe neuro symptoms: twitching, sweating oil, ataxia, weakness, tremors, vision problems, brain fog, difficulty breathing, severe foot pain, numbness and tingling in hands and feet, maybe others i can't think of right now. I fall over in the shower sometimes when I close my eyes to wash my hair. I was going to a "celiac specialist" at a prestigous U med center - she had never heard of this.

I'm not going back for follow ups - waste of money to educate an expert. My GP was the one who made the diagnosis and has spent more time and effort educating himself to better help me get healthy.

Bobbijo6681 Apprentice
Bobbijo6681
Posted

I have severe neuro symptoms: twitching, sweating oil, ataxia, weakness, tremors, vision problems, brain fog, difficulty breathing, severe foot pain, numbness and tingling in hands and feet, maybe others i can't think of right now. I fall over in the shower sometimes when I close my eyes to wash my hair. I was going to a "celiac specialist" at a prestigous U med center - she had never heard of this.

I'm not going back for follow ups - waste of money to educate an expert. My GP was the one who made the diagnosis and has spent more time and effort educating himself to better help me get healthy.

I was told by my neurologist that falling over with your eyes closed is a symptom of a B12 deficiency. If you haven't been checked for this I would recommend it.

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