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Neuro Signs

red island

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red island Newbie
red island
Posted

Hi everyone. I have been gluten-free for 2 months now and was wondering if anyone has experienced neuro signs (ataxia,anxiety, "spacey" feeling like being off balance) without gluten exposure. I have been cc'd 3 times that I know of and these symptoms started about 4 hours after contamination along with some g.i. problems. However on a couple of occassions I have experienced the neuro signs without gluten contamination (I think!) and I was wondering if stress and overdoing it (I have a really physical job and long shifts) could bring on the immune response.

I have been reading this forum since I was diagnosed and I can't tell you how helpful you all have been - thank you everyone for the great information.

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shakemysoul Newbie
shakemysoul
Posted

I have been gluten free for just two weeks less than you and I get the neuro signs (especially the fog/spacey feeling) every onc in awhile. I do my best with cc-ing although I know of a time or two that it has happened. I wasn't sure if I hadn't been gluten-free long enough to not still feel these symptoms occasionally? It's hard for me because I have no GI symptoms whatsoever, so sometimes I think I look too deep into just being run down or stressed like a normal person!

Would be interested to know what others that have been gluten-free longer think.

saintmaybe Collaborator
saintmaybe
Posted

Not to question your dedication to gluten free, but how do you know you weren't exposed? The longer you stay off gluten, the smaller the amount it takes to cause an immune reaction. For me, it used to be pieces of bread, now it's literally traces of gluten in sauces that will leave me sick and nauseous for days. It sucks, because the tiniest amounts make me violently ill, so I have to be very careful.

If you work in a company that has a common eating area, it's especially easy to get sick. I avoid eating any food anyone has brought in (even if it's naturally gluten free), or eating directly off the surfaces of our break tables. Eat from bags or containers you bring from home or buy from a store and don't share with anyone else.

I also recommend in the long term (if you can) getting away from the physical job. It exacerbates all of the symptoms and makes everything much worse. I work in one of the most physical jobs there is, and I've just been diagnosed with degenerative osteoarthritis of the spine.

I'm 27 years old. Celiac makes everything softer, and looser, unable to handle the huge physical demands we place on our bodies unless we're on a truly well controlled gluten free diet and excellent supplementation.

Staring at those x-rays (and living day in day out with pretty horrible pain) brought home to me that I need to stop punishing my body, the sooner the better, or I will never get well.

Reba32 Rookie
Reba32
Posted

symptoms of cross contamination can last for several days or several weeks. If you've only been gluten free for 2 months, and been cc'd 3 times, it is likely that your ongoing symptoms are result of those cross contamination incidences. Or not. With some of us, neurological symptoms appear several months after going gluten free, with no cc. Like me. It could even be something else entirely such as another auto-immune disease.

Be a lot more vigilant in what and where you're eating, to limit the cc. If you continue to have neurological symptoms after several months of strictly gluten free, see your doctor.

ciamarie Rookie
ciamarie
Posted

I had a probiotic supplement with maltodextrin in it that gave me that feeling, as well as getting really tired. I had only been gluten-free for about 2 weeks at that time (now it's been about a month...) The research mostly says that it's ok, because it's so highly refined that any gluten that was in the source is no longer there, I don't buy it. So it's possible it's something like that.

red island Newbie
red island
Posted
  • Author

Thanks everybody, I definitely could still be getting cc'd, I used a spoon that was lying on the counter to stir my tea at the neighbors and was sick for 2 days! Live and learn. The neuro signs (without cc) started a week after that exposure and I never thought about it still being a lingering reaction. For now, when I feel spacey, I tell my boss I have to work a shorter shift and then I sleep for 12 hours. I seem to bounce back quickly but I do not want to become less resilient.

As far as work goes, I have been avoiding the lunch room and eating out of my own lunch bag but I have alot of co-workers and avoiding their crumbs has been a challenge especially since they dont confine their messes to the lunchroom. I just wash my hands alot and keep them away from my face.

Boy oh boy, and I thought the diet was going to be the hard part!

Reba32 Rookie
Reba32
Posted

ciamarie, most often in North America maltodextrin is made from corn, not wheat. If it is made from wheat the ingredients list has to make note of it. Maltodextrin derived from wheat is most common in Europe, but I believe they still have to declare it on the label.

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ciamarie Rookie
ciamarie
Posted

ciamarie, most often in North America maltodextrin is made from corn, not wheat. If it is made from wheat the ingredients list has to make note of it. Maltodextrin derived from wheat is most common in Europe, but I believe they still have to declare it on the label.

Thanks for that info. It may just be that particular supplement bothered me, related to maltodextrin or something else? I have another supplement with maltodextrin that doesn't bother me, so hard to say for sure what it was in that case. I'm just not sure that it's always safe ...

color-me-confused Explorer
color-me-confused
Posted
As far as work goes, I have been avoiding the lunch room and eating out of my own lunch bag but I have alot of co-workers and avoiding their crumbs has been a challenge especially since they dont confine their messes to the lunchroom. I just wash my hands alot and keep them away from my face.

I eat lunch somewhat late to avoid a crowded lunchroom. I have sort of a ritual that involves wiping down the microwave, my spot at a table, and the chair with a towel with some cleaning spray. I use my own utensils and never eat anything people have brought in, except fruit which I'll re-wash. Also, anything with gluten is banned from my office and if a co-worker shows up with a donut I'll ask them to come back later after they wash their hands while pointing to my "Gluten is the Enemy" coffee mug. This is all somewhat of a pain in the neck but it works for me - small company though, I don't how I'd manage in a big place with a giant cafeteria.

cahill Collaborator
cahill
Posted

Hi everyone. I have been gluten-free for 2 months now and was wondering if anyone has experienced neuro signs (ataxia,anxiety, "spacey" feeling like being off balance) without gluten exposure. I have been cc'd 3 times that I know of and these symptoms started about 4 hours after contamination along with some g.i. problems. However on a couple of occassions I have experienced the neuro signs without gluten contamination (I think!) and I was wondering if stress and overdoing it (I have a really physical job and long shifts) could bring on the immune response.

I have been reading this forum since I was diagnosed and I can't tell you how helpful you all have been - thank you everyone for the great information.

My neurological symptoms are caused by soy not gluten.

If you are sure you are not getting CC from some where ,looking at your soy intake may be something to consider

red island Newbie
red island
Posted
  • Author

Oh I looked back at my food journal - I had mistakenly bought frozen edamane beans instead of lima beans and the nights that I had those for supper, bloating, gi, fatigue and spacey feelings followed. I dont usually eat soy products so had not even considered that being the problem.

Thanks for the tip and I will stay away from soy and see what happens (or doesn't happen!)

AVR1962 Collaborator
AVR1962
Posted

If the ataxia is directly associated with the gluten you really need to clean up your kitchen, the diet and speak up when going to restuarants or places outside your home. For me, it took getting past 4 weeks with no gluten fopr my dizziness to go away. Unfortunately, that was 9 months after my symptoms started and 6 months on a gluten-free diet....made alot of mistakes, but you learn. I found however that some ood additives were giving me issues as well and would make the dizziness worse, things like carrageenan and high fructose. In these cases I would be more dizzy and sick to my stomach for 3 days. I have a friend who gets dizzy from dairy. All thoughts to consider, a food journal can help.

cahill Collaborator
cahill
Posted

Oh I looked back at my food journal - I had mistakenly bought frozen edamane beans instead of lima beans and the nights that I had those for supper, bloating, gi, fatigue and spacey feelings followed. I dont usually eat soy products so had not even considered that being the problem.

Thanks for the tip and I will stay away from soy and see what happens (or doesn't happen!)

Soy is well hidden in our food, from chocolate, chicken bouillon,gum to canned tuna fish. Check all your foods for soy. If you are in the US soy must be on label as an allergy warning,the exception being soy oil.

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