Celiac Neuro Effects Research

[ravenwoodglass]

I am hoping to get some answers from those of us who have neuro issues from gluten. I am writing a paper for a class about the neurological effects of celiac. If you have been on the diet at least 6 months and had issues with any of the associated neuro effects please take the poll. It would be quite helpful. You can select multiple answers in case you had multiple impact. No names or comments will be used in the paper only poll numbers.

Thanks for your input. I appretiate it.

[cassP]

ravenwood- would sleeping/waking up issues be neurological??

[Lisa]

Just voted.

[ravenwoodglass]

ravenwood- would sleeping/waking up issues be neurological??

Perhaps. It might fall under the anxiety catagory if your waking up and not being able to go back to sleep due to racing thoughts. If your waking up due to D or stomach or muscle cramps that would be more physical.

[cassP]

i was always a HEAVY sleeper... and in my 20s- i "overslept" for work on a semi-regular basis... was a great worker- but always got written up for tardiness & attendance. it was very embarrasing & i hated myself.

entering into my 30s- i ate gluten free/gluten light on various no carb/low carb diets. i actually woke up better- but never thought of it UNTILL about 4 years ago- i would go on carb binges... plenty of gluten!!! Large pizzas.... cakes, krispy kreme... and it started happening again- i would OVERSLEEP for work- wouldnt even know that the alarm went off or if i slept walked and turned it off... never knew a thing untill work would call me- it would happen 2 or 3 x a week

that's when i realized that was yet ANOTHER gluten side effect for me- to me that sounds neurological ??

[Marilyn R]

I'm one month short of your six month criteria on gluten-free diet to vote, but felt compelled to respond regarding neurological improvement with a gluten-free diet.

The path back from "then" to now isn't always easy, but it's like comparing living purgatory to a life with hope, promise and productivity.

I'm thrilled that you're conducting the survey and I'm retty sure mainstream medical practioners aren't aware of the neurological consequences of celiac disease. (My young endocrinologist never even ran a celiac panel panel and she's with a hoity toity nationally recognized hospital system.)

I've learned so much from your past posts, Ravenwood, having spent some time on the search engine in this forum, and really feal indebted to you for all the contributions you make...and for shining the light down the path in more than one way.

[Skylark]

I voted and feel free to pull from my profile for your paper if it's helpful. Gluten-free and gobs of vitamins, minerals and micronutrients has turned my mental health around. I also had a carpal-tunnel flareup last summer when I moved, had to eat out a lot, and got into CC.

[srall]

I voted that I got relief from anxiety. I don't think I had depression but I had a complete lack of motivation. Maybe a form of depression. I feel more coordinated and clear headed but I didn't know if that meant I could vote that I had gotten relief from ataxia. Definitely calmer and less rage. More even keel. 7 months gluten free.

[ravenwoodglass]

i was always a HEAVY sleeper... and in my 20s- i "overslept" for work on a semi-regular basis... was a great worker- but always got written up for tardiness & attendance. it was very embarrasing & i hated myself.

entering into my 30s- i ate gluten free/gluten light on various no carb/low carb diets. i actually woke up better- but never thought of it UNTILL about 4 years ago- i would go on carb binges... plenty of gluten!!! Large pizzas.... cakes, krispy kreme... and it started happening again- i would OVERSLEEP for work- wouldnt even know that the alarm went off or if i slept walked and turned it off... never knew a thing untill work would call me- it would happen 2 or 3 x a week

that's when i realized that was yet ANOTHER gluten side effect for me- to me that sounds neurological ??

You know I had that effect also and so did my DD. I am going to try to add sleep irregularities to the poll. Don't know if I will figure out how to do but I will try. I do think that may be neuro related. Thanks for pointing that out to me.

Edit- It worked.

[ravenwoodglass]

Thanks everyone. Yea doctors don't recognize the neuro impact that celiac has on us. I am finding quite a bit of research that has been done recently on this effect but most studies are done on small groups. We have such a large community that I was hoping to get lots of responses to help back up that research.

Do feel free, those of you who haven't gotten help for issues to vote also, although I think for those of us who did have neuro effects the folks who did get help from the diet far out weigh the ones who didn't.

Thanks again for your responses and keep them coming.

[rdunbar]

Thanks everyone. Yea doctors don't recognize the neuro impact that celiac has on us. I am finding quite a bit of research that has been done recently on this effect but most studies are done on small groups. We have such a large community that I was hoping to get lots of responses to help back up that research.

Do feel free, those of you who haven't gotten help for issues to vote also, although I think for those of us who did have neuro effects the folks who did get help from the diet far out weigh the ones who didn't.

Thanks again for your responses and keep them coming.

I recently went to the dermatologists office that I had gone to @5 years ago with what turned out to be Dermatitas herpetiformis; she had given me some bogus diagnosis at the time. Anyways, I wasn't sure of the date, and wanted to see if they had a record of my visit, well, maybe I wanted to give her a piece of my mind, to be honest. As it turned out, the derm had moved, and a neurologist had moved in, so I stopped to chat for a minute. I asked what they knew about celiac, and got the reply that it was a very rare childhood disease. I guess I shouldn't be shocked. It seems like the neurological impacts of celiac often go unrecognized, or underestimated. Sometimes I think doctors are trained to be so specialized, that they become incapale of seeing the bigger picture. I agree that so much research needs to be done in this area; the mechinisms surrounding how gluten causes ADD and autism are complete mysteries still, I don't think they are sure if it's even the immune system response to gluten that's involved like it is with GI, or skin inflammation. Whatever it is, no one can deny that virtually all autistic children have an improvement in thier behavior on a gluten free diet. We just don't know why.

I've had big improvements in my neuro symptoms @9 months into a strict gluten/ casien free diet.

The tingling and numbness caused by nerve damage I would put at 80 percent improved

loss of balance and double vision are the most improved, I rarely experience this anymore unless I get glutened.

short term memory problems are getting better, but have been slower to improve. I would say 50 percent.

Anxiety and 'depression' has gotten much much better, I would love to say it's gone completely, but it's over 90 percent better; I used to have attacks where I would shake uncontrollably, and that hasn't happened in a while, when it has over the last 9 months it's been less severe every time.

[ravenwoodglass]

I recently went to the dermatologists office that I had gone to @5 years ago with what turned out to be Dermatitas herpetiformis; she had given me some bogus diagnosis at the time. Anyways, I wasn't sure of the date, and wanted to see if they had a record of my visit, well, maybe I wanted to give her a piece of my mind, to be honest. As it turned out, the derm had moved, and a neurologist had moved in, so I stopped to chat for a minute. I asked what they knew about celiac, and got the reply that it was a very rare childhood disease. I guess I shouldn't be shocked. It seems like the neurological impacts of celiac often go unrecognized, or underestimated. Sometimes I think doctors are trained to be so specialized, that they become incapale of seeing the bigger picture. I agree that so much research needs to be done in this area; the mechinisms surrounding how gluten causes ADD and autism are complete mysteries still, I don't think they are sure if it's even the immune system response to gluten that's involved like it is with GI, or skin inflammation. Whatever it is, no one can deny that virtually all autistic children have an improvement in thier behavior on a gluten free diet. We just don't know why.

I've had big improvements in my neuro symptoms @9 months into a strict gluten/ casien free diet.

The tingling and numbness caused by nerve damage I would put at 80 percent improved

loss of balance and double vision are the most improved, I rarely experience this anymore unless I get glutened.

short term memory problems are getting better, but have been slower to improve. I would say 50 percent.

Anxiety and 'depression' has gotten much much better, I would love to say it's gone completely, but it's over 90 percent better; I used to have attacks where I would shake uncontrollably, and that hasn't happened in a while, when it has over the last 9 months it's been less severe every time.

Glad to hear you have gotten relief from the neuro issues. Yea neuros are pretty clueless in this country for the most part. My short term memory issues took a long time to improve and I am still not completely healed as far as that goes. Don't know if I ever will be but I am worlds better than I was. Hopefully things will continue to improve for you also.

[Skylark]

Ack. Do I delete my vote and try again? I got relief from sleep problems too.

[ravenwoodglass]

Ack. Do I delete my vote and try again? I got relief from sleep problems too.

Go ahead and give it a try. If it works let us know as I don't know if we can vote again if we delete our vote and I would have checked that box also if I had thought to add it in the first place.

[GFinDC]

# Have gotten relief from Ataxia

I wasn't sure what to answer on this one. I have had some balance problems but never had severe problems. So I didn't answer this one. Automatic F?

Y Have gotten relief from Depression

I definitely don't feel so depressed anymore. I even have a bit of my sense of humor back. Not sure that is a good thing, but hey.

Y Have gotten relief from Neuropathy

I didn't have bad neuropathy. But I had a twitch over my left eye that went away after gluten-free. Some other occasional muscle twitching that subsided too. My memory is lots better but not what it used to be. My eyesight is better too. My aura is brighter colors and all twinkly. Kidding on that aura biz.

Y Have gotten relief from Anxiety

I don't have a short temper anymore since going gluten-free. For a while there I was getting angry over very minor things and was just plain unreasonable. Not that I could help it, there's lots of irritating peeps in the world. But after gluten-free for a while I felt much more calm and even, and not fast to anger. Either all the other peeps in the world got much nicer or I got better. Nah, it must be I got better. Them other peeps, well...

Y Have gotten relief from sleep problems

I also don't get stuck in endless thought loops like before, or have a racing mind when I go to bed. My head seems calmer, like it's not under constant attack now. Nice that.

I still have sleep problems when I get into any of my trigger foods, which are gluten and other things too.

N Have gotten relief from bahd speelin.

Nope, I still can't type worth a doo-doo, and my speelin is worse than ever.

[ravenwoodglass]

N Have gotten relief from bahd speelin.

Nope, I still can't type worth a doo-doo, and my speelin is worse than ever.

[bincongo]

I can't vote yet - to young a Celiac, nothing else young about me. How long will you be having the vote and will you post the results?

[IveGotEffinCeliac]

I actually have some of the worst neurological (celiac induced) symptoms ever known to man. But I've only been on the diet for a bit over 3 months. Good luck in your research!

[Marilyn R]

Just to clarify, the question about gait ataxia is about bad walking. That's when you can't feel your lower legs anymore because of peripheral neuropothy (pins and needles) and your legs do their own thing, like they're not connected to your brain. You fall more than most normal peeps. You stumble and sway like a drunk, even though you're totally sober. Gait ataxia is a gait disturbance, and a neurological response to the autoimmune disease we have a love/hate relationship with. Love that we know that we have it, hate that we have to stand up to the plate and deal with it each and every day. That's my 2 cents,

[ravenwoodglass]

I can't vote yet - to young a Celiac, nothing else young about me. How long will you be having the vote and will you post the results?

I will pull the results in about 2 weeks since that is when I will be writing the paper. I will post the results but I will leave the poll active as long as folks are replying. I set the 6 month on the diet cut off because most of us have seen at least some relief of neuro symptoms by that time. It takes longer in most instances for relief for neuro symptoms than from the gut and skin issues. If someone has gotten a great deal of relief sooner do feel free to vote and let me know in the replies what your vote was and that you are under the six month mark. While I might not include that vote in the paper it would be helpful to newbies to know that it doesn't always take that long. I, for example, never had another episode of depression within a month of being diagnosed but the ataxia took about 6 months to resolve and it was 2 years before I regained leg reflexes.

[ravenwoodglass]

I actually have some of the worst neurological (celiac induced) symptoms ever known to man. But I've only been on the diet for a bit over 3 months. Good luck in your research!

Yea me too. I hope you are starting to get some relief. In my case some stuff was relieved sooner but the most noticeable relief was between 6 months and a year. Hang in there.

[WheatChef]

Taking poll at 4:01 AM:

___ Have gotten relief from sleeping problems.

_X_ Have not gotten relief from sleeping problems.

That one kinda answered itself.

[ravenwoodglass]

I'm one month short of your six month criteria on gluten-free diet to vote, but felt compelled to respond regarding neurological improvement with a gluten-free diet.

The path back from "then" to now isn't always easy, but it's like comparing living purgatory to a life with hope, promise and productivity.

I'm thrilled that you're conducting the survey and I'm retty sure mainstream medical practioners aren't aware of the neurological consequences of celiac disease. (My young endocrinologist never even ran a celiac panel panel and she's with a hoity toity nationally recognized hospital system.)

I've learned so much from your past posts, Ravenwood, having spent some time on the search engine in this forum, and really feal indebted to you for all the contributions you make...and for shining the light down the path in more than one way.

Thank you. I also appretiate all the other folks here both newbies and oldtimers who lend so much support to each other. This disease isn't easy and too many have lost hope of ever recovering by the time they are diagnosed. One thing that gives me some hope is that we seem to have many younger members now who are diagnosed sooner than when I first joined the group. It gives me hope that at least some doctors are getting more educated about celiac and how common it is. It would be go good to have us diagnosed before the damage gets so severe that some systems can never fully repair.

[Skylark]

Go ahead and give it a try. If it works let us know as I don't know if we can vote again if we delete our vote and I would have checked that box also if I had thought to add it in the first place.

It worked. You can delete and change your votes.

[ravenwoodglass]

It worked. You can delete and change your votes.

Thanks Skylark, It's nice to know that we can do that on polls. I always wondered.