Celiac Neurological Symptoms

[Guest maybe I have celiac]

Anyone out there have more celiac disease related neurological symptoms, as opposed to gastrointestinal?

[tom]

Used to. A lot before going seriously 100% gluten-free. Worst ones faded quickly, lesser ones w/in 2-3 months, I'd guess.

There was peripheral neuropathy where for example I might suddenly feel like I'd stepped on tack, tho I was lying down. Weird things that could happen to any part of the body - not just feet or extremities.

There was cerebellar ataxia, where I literally could not take a step w/out stumbling.

Migraines, long bouts of vertigo, etc.

Most people seem to have a brain fog and general lack of ability to concentrate. Depression and anxiety are common.

I had a few more serious, but misconceptions make me reluctant to talk about them.

Tho it was all in addition to the usual GI issues - not sure if your "as opposed to" means "in place of".

[Lisa]

I do have neur symptoms after the GI symptoms leave. Brain fog is pretty bad. I find myself sitting at a stop light waiting for the light to turn RED!! I also find myself walking sideways down a sidewalk. (not a good discription, but defined effect on motor skills)

Some well balanced vitamines will help.

[lorka150]

I would say mine are half and half. I only get gastro symptoms when I get glutened, now, but as I am healing, all my my neuro issues are still apparent.

[tom]

Hey maybeihave, I guess I posted in the wrong thread. Bummer that there were 2.

U saw it tho right?

[Guest maybe I have celiac]

Hey maybeihave, I guess I posted in the wrong thread. Bummer that there were 2.

U saw it tho right?

Tom,

THanks, I did see your post and better one good post than 50 bad posts. I have had some gastro issues, I have lost threee inches from my waist the past month since I have been eliminating gluten and I havent been working out. Also, I use to wake up feeling lethargic and hungover and I hadnt been drinking the previous days before. I have been posting my food eliminations on this site and might I say the past month has been a 180 degree turnaround. My chronic depression is for the most part gone, i hope. Again, thanks for the post. Kind of interesting how Celiac affects people differently. I am thinking of getting Enterolab to have something scientific to back of my findings.

Jim

[tom]

Jim,

So . . . . u saw my 50 other posts huh? LOL

Good to hear you're doing better. Can't argue w/ a 180.

The worst part about the depression I think is that it can make ya forget what it's even *like* to feel good. I have a theory about the landscape of brain chemistry where it can become physiologically impossible to imagine or remember what outright happiness feels like.

And that depletes the motivation to make changes. I remember a struggle to keep hope alive.

Best of luck.

[Guest maybe I have celiac]

Jim,

So . . . . u saw my 50 other posts huh? LOL

Good to hear you're doing better. Can't argue w/ a 180.

The worst part about the depression I think is that it can make ya forget what it's even *like* to feel good. I have a theory about the landscape of brain chemistry where it can become physiologically impossible to imagine or remember what outright happiness feels like.

And that depletes the motivation to make changes. I remember a struggle to keep hope alive.

Best of luck.

Tom,

Nawwwwww, your posts are good.

You are right about your theory. I like to add that in my case, being depressed most of my life and not being able or knowingly able to put more than a week together feeling happy and not knowing why... and then constantly being misdiagnosed by these MD quacks. Two weeks of feeling better and counting, though... SOmetimes I would just sit around on my couch with no motivation nor energy, lots of fatigue and no symptoms of flu, sickness, nausea. I really thought it was just the way I was genetically.

It floors me to see a lot of the people on this board so sensitive that they can't even touch Gluten, I feel fortunate in a way eventhough I have suffered for so long. My dad's friend from his college days is battling stomach cancer after decades of battling the mysterious Celiac and unknowingly suffering from its damage that it caused him.

Thanks for your feedback, Jim

[marciab]

Anyone out there have more celiac disease related neurological symptoms, as opposed to gastrointestinal?

I had ataxia and myoclonus from 1990 till 2006 that went away after I had been on the gluten-free diet for one year. And my digestive problems didn't stop me from eating gluten until 2005. At that point I had to give up most foods. I have added most foods back though and am testing dairy, soy, eggs, corn and chemicals.

I consider these nuero symptoms to be from gluten ataxia (damage to the brain) as opposed to celiac.

I'm still in the process of being worked up for celiac. I had an endoscopy 17 mo after going gluten free, and it shows damage, but I wasn't diagnosed celiac via the biopsy. Clear as mud here !!!

Marcia

[tom]

I consider these nuero symptoms to be from gluten ataxia (damage to the brain) as opposed to celiac.

While I know it's true ataxia can come along w/ no relation to celiac, it's also one of the many non-GI conditions that celiac can cause.

I guess the cause doesn't matter as long as it's GONE! YeeeeeeeeeeeeHA!

[Guest maybe I have celiac]

I had ataxia and myoclonus from 1990 till 2006 that went away after I had been on the gluten-free diet for one year. And my digestive problems didn't stop me from eating gluten until 2005. At that point I had to give up most foods. I have added most foods back though and am testing dairy, soy, eggs, corn and chemicals.

I consider these nuero symptoms to be from gluten ataxia (damage to the brain) as opposed to celiac.

I'm still in the process of being worked up for celiac. I had an endoscopy 17 mo after going gluten free, and it shows damage, but I wasn't diagnosed celiac via the biopsy. Clear as mud here !!!

Marcia

Yeah, I noticed that the anxiety pretty much lifted that day after I cut out gluten, grains.

[Rivergirl]

Boy did I have (and to some extent still do) have neurological misfunctions. Before being diagnosed with Celiacs, what drove me to go to the doctor were the wierd neurological things vs the stomach problems. For example, some days my eyes would get so blurry I could not see yet I have 20/20 vision, other days I felt like I accidently poured hot coffee on my leg only to find out there was no hot coffee in sight, and the migraines became unbearable sometimes. Other wierd things were brain fog - which was very frustrating because my job requires my brain to be engaged at all times and sometimes in front of many many people or on camera. Other days I would get this weird buzz in my brain - very symptamatic of a stroke.

My doctor fortunately believed me and didn't think I was whacko when I told about these weird things - in fact he test me for MS and tried numerous migraine medications out on me. It was only that I start complaining about chronic D that he connected it to potential celiacs which was confirmed last month.

But now due to being gluten free for about a month - I see noticeable improvements. Still get migraines but not as frequently.

Thanks for the post.

[capebite]

I am a 47 yo new member. Not sure if have Celiac. Looking for experienced advocate to help guide by phone would be very helpful.

I bacame ill very suddenly 5 years ago with vomiting and diarrhea so bad that I lot 70 lbs in 3 months. I subsequently developed migraines, stiff neck and joint pain and was finally diagnosed 1 1/2 years later with neurological Lyme, bartonella, erlichia. Treatment with IV Doxycycline for 4 months helped a bit but I was subsequently bitten again twice and pursuing herbal treatment using Cowden protociol. Lyme tests have been borderline positive.

Bilateral Breast cancer DCIS estrogen receptor positive was found december 2006 and bilateral mastectomies were performed at dana farber. Lymph nodes were clean.

I never have been able to gain the weight back. I had endoscopy 1 year ago which revealed healed gastritis. Biopsy for CELIAC was NEGATIVE. Breath test revealed small bowel overgrowth infection. Gliadin allergy over past years has been negative BUT Allergy testing in past 3 months has now shown allergy to gliadin gluten confirmed at Alletess labs in Massachusetts and DiagnosTechs Lab in Washington. (As well as multiple other food allergies...milk, sesame, blueberry, pineapple, cashew, yogurt, beef, cheese etc.) Diagnos Techs testing for gastrointestinal Health panel also showed colon inflammation.

Lots of neurological issues including severe brain fog, confusion, low blood sugar, numbness right arm, twitching, right, shin bone pain, fevers, sweats.

I have cut out all wheat and allergic foods over the past month but continue to suffer...low blood sugar problem is worse...is there someone that can volunteer to be a mentor to guide me through by phone? Is there computer software that I can download to help with 4 day diet rotation selections.

Please email directly as I can't open PM. Lisa

[ENF]

Used to. A lot before going seriously 100% gluten-free. Worst ones faded quickly, lesser ones w/in 2-3 months, I'd guess.

There was peripheral neuropathy where for example I might suddenly feel like I'd stepped on tack, tho I was lying down. Weird things that could happen to any part of the body - not just feet or extremities.

There was cerebellar ataxia, where I literally could not take a step w/out stumbling.

Migraines, long bouts of vertigo, etc.

Most people seem to have a brain fog and general lack of ability to concentrate. Depression and anxiety are common.

I had a few more serious, but misconceptions make me reluctant to talk about them.

Tho it was all in addition to the usual GI issues - not sure if your "as opposed to" means "in place of".

I had many of these symptoms, and more. I also had the feeling that I stepped on a tack, even while lying down. It would usually get me in a toe and sometimes, including while I was standing up, this sharp pain would be duplicated at the same time in my forearm, wrist, or hand. It never bothered me much, and was not one of my worst symptoms, but seems to be happening with substantially less frequency, and less pain, since going gluten-free.

Edit: Three minutes after posting this, while sitting, I got the feeling on the bottom of my foot, rather than a toe. I think it happens a lot more than I even realize, 'cause I got used to it and don't pay attention anymore.

[Guest maybe I have celiac]

Boy did I have (and to some extent still do) have neurological misfunctions. Before being diagnosed with Celiacs, what drove me to go to the doctor were the wierd neurological things vs the stomach problems. For example, some days my eyes would get so blurry I could not see yet I have 20/20 vision, other days I felt like I accidently poured hot coffee on my leg only to find out there was no hot coffee in sight, and the migraines became unbearable sometimes. Other wierd things were brain fog - which was very frustrating because my job requires my brain to be engaged at all times and sometimes in front of many many people or on camera. Other days I would get this weird buzz in my brain - very symptamatic of a stroke.

My doctor fortunately believed me and didn't think I was whacko when I told about these weird things - in fact he test me for MS and tried numerous migraine medications out on me. It was only that I start complaining about chronic D that he connected it to potential celiacs which was confirmed last month.

But now due to being gluten free for about a month - I see noticeable improvements. Still get migraines but not as frequently.

Thanks for the post.

THank you Rivergal!

[laurie1067]

Anyone out there have more celiac disease related neurological symptoms, as opposed to gastrointestinal?

My symptoms seem to be evenly mixed between neuro and gastro. I've got peripheral neuropathy and have had dizziness as well as fainting and/or seizure once. My nerve conduction study, MRI, and bloodwork all came back normal. I've also got reflux and have lost 35 lbs in 5 months, but not the typical celiac symptoms of frequent diarrhea and/or vomiting. I was diagnosed (accidentally) by biopsy when I recently had an endoscopy for reflux. My blood work for celiac came back negative after the biopsy, so I'm a seronegative Celiac. Since going gluten free 2 weeks ago I have noticed a HUGE improvement in my reflux. I'm hoping the neuropathy will improve, but I understand that there is a chance that it's permanent.

[dancer5678]

Hello,

My brother was diagnosed with celiac disease one year ago. He was suffering from all the GI symptoms and is finally feeling much improved after being gluten-free for one year. My parents and I all had the genetic testing and it came back that my dad, brother and I all have the DQ8 link and its positive. They told me that I have a high potential for developing celiac.

For the past 9 months or so, I have felt horrible. My symptoms include back aches, burning pains in my low back and knees, shooting pains all over, light headed, periods of vertigo, blurred vision, pain in my eyes, tingling in my feet and calves (mostly left side), Muscle twitching all over, and heart palpitations, chronic head aches. I also have rippled finger and toe nails.

I have been tested for everything under the sun, such as MS, and I have had every possible MRI done. I have had lots of blood work and also the celiac blood work. My blood work came back negative for celiac but my IG levels were all extremely low, and I never had low IG levels before in my life. (I am currently 20 years old)The dr. told me that can happen when your IG levels are very low the celiac blood work will throw false negatives. He told me to stick to a strict gluten free diet. My next step is to see a GI doctor.

I have been gluten free for 13 days now and feel hardly any improvement. The only thing I have noticed is the heart palpitations have stopped. The last few days I feel that the symptoms are almost worse.

I was wondering how long it takes too feel better after going gluten free having neurological problems? My brother felt better improvements instantly with his GI symptoms. If anyone can relate to this or has any input please reply!!!

Thank you!