Neurological Problems

[cmoore]

I would appreciate anyone sharing their experience with Gluten and neurological problems like Ataxia or other issues. Any comments or stories are welcome. Im trying to sort though some things on my own and don't know what to expect. What were you dealing with, how long did it take you to start to turn things around that sort of thing.

Thanks

Clayton

[AVR1962]

Clayton, I had ataxia which made me feel off-balanced every day all day for 9 months. If I would crouch down to go yard work I fell over many times. If I bent over slightly I had to catch myself form falling. When I would get out of bed my body wanted to track left and I had to force myself to go right. I ran my shoulders into door jams because of depth perception was messed up.

When I went off gluten it was not getting better initially and I started wondering if something else was my issue. I dug a little deeper inot all the products I was using.....found what in my cooking spray.....thorough cleaned up my kitchen.....everyone had to adapt to the drop method of using condiments and cheese had to be cut on a clean surface with clean hands, etc. Once I did this the ataxia was gone in 4 weeks!!!!

I was also having vertigo issues which I related to food additives.....high fructose, all the gums like guar and xanthan, carrageenan. However, after 8 months without them my sensativity to them passed.

I was dealing with weird crawling sensations on my skin, flinches and spasms in my muscles, numbness/tingling in my feet, oins & needles in my hands/feet/eyes. The flinches and spasma I was able to resolve by supplementing with magnesium and potassium. The numbness and tingling I used a B complex for. Pins & needles I use L-carnitine.

Part of my numbness/tingling/pins & needles may have been due to back issues which have just recently been discovered, only time will tell. I am 11 months now on a gluten-free diet and what for sure did pass with the ataxia and the vertigo. Still dealing with the rest of the issues.

[eatmeat4good]

I started walking with a slight gait, almost imperceptible.

That progressed to having to actually think about every step I took or I would bump into walls.

When it got really bad, I fell in the shower,and often fell while walking. Sometimes I had to crawl up the stairs. I had the creepy crawling sensations, could not stand to be touched, had nighttime paralysis, sweating and confusion. I knew something was really wrong, but I couldn't communicate it adequately. I started having difficulty with speaking. I couldn't make a complete sentence. My son was frustrated because I would stop mid sentence and not be able to recall what I was about to say. It brought me to tears. I used to be very intelligent and I was losing it all. My cognitive functioning was awful. I would say I was about 20% of what I used to be when my Celiac was at it's worst before we knew what it was. I used to have an excellent vocabulary and spelling and suddenly I couldn't make sentences, spell words, or use descriptive language. It was a nightmare.

I was sick for 7 years, with "fibromyalgia". I had muscle pain, joint pain, stumbling and felt as if I were on a roller coaster if I was in a car.

I had read about Celiac here...realized I didn't have "fibromyalgia" and went gluten free immediately.

My ataxia resolved very quickly. I would say within the first month. My muscles were very weak and I was hardly able to exert at all, but it got better with each week that went by. The speech problem went away within the first week of being gluten free. My migraines went away. I knew this was it and I was going to get better within a week of getting off of gluten. I'm a year and a half gluten free. I never have episodes of ataxia now. My balance is back and my muscles have all healed and are functioning normally. My cognitive functioning steadily improved and I think it is still improving.

I hope this helps you figure out what is going on with you.

gluten free is certainly worth a try.

[Bubba's Mom]

Before my DX I got migraines, motion sickness, anxiety, and lots of digestive issues mostly.

After going gluten-free my symptoms from an accidental gluten exposure changed to more neurological symptoms. I got irregular heart beats, weakness, dizzyness, and confusion. I staggered a bit when I walked, and had poor depth perception. I'd misjudge the height of stairs and stumble,and bang into doorways and feel off balance, almost like the floor is slanted. I'd lose my thought mid-sentence..and sometimes be unable to recall a word, or name,..or an entire event. When writing things down I'd omit some of the letters. These reactions have lasted for weeks, although gradualy improving over time.

Doing something like loading/unloading the dishwasher was horrible. The leaning to the side and bending up and down made me very dizzy.

I have absolutely NO desire to eat gluten because of the severity of the neurological symptoms I now get. The digestive symptoms were bad, but at least they didn't make me lose my independence. It's scary!

[RiFi]

Hi Clayton,

You might want to explore the link between celiac disease and Joint Hypermobility Syndrome/ Ehlers Danlos Syndrome. Many celiacs have this syndrome and it can have major musculo-skeletal (hypermobile joints, pain, stiffness, dislocations) and neurological effects (including ataxia).

Dr Tinkle is an expert in the field and has recently released a free iTunes app to help practitioners and lay people diagnose the syndrome. The app is called JHDiagnosis.

[RiFi]

If u do a search for 'ehlers danlos' in the search box of this forum, you'll find many, many posts.

[cmoore]

Clayton, I had ataxia which made me feel off-balanced every day all day for 9 months. If I would crouch down to go yard work I fell over many times. If I bent over slightly I had to catch myself form falling. When I would get out of bed my body wanted to track left and I had to force myself to go right. I ran my shoulders into door jams because of depth perception was messed up.

When I went off gluten it was not getting better initially and I started wondering if something else was my issue. I dug a little deeper inot all the products I was using.....found what in my cooking spray.....thorough cleaned up my kitchen.....everyone had to adapt to the drop method of using condiments and cheese had to be cut on a clean surface with clean hands, etc. Once I did this the ataxia was gone in 4 weeks!!!!

I was also having vertigo issues which I related to food additives.....high fructose, all the gums like guar and xanthan, carrageenan. However, after 8 months without them my sensativity to them passed.

I was dealing with weird crawling sensations on my skin, flinches and spasms in my muscles, numbness/tingling in my feet, oins & needles in my hands/feet/eyes. The flinches and spasma I was able to resolve by supplementing with magnesium and potassium. The numbness and tingling I used a B complex for. Pins & needles I use L-carnitine.

Part of my numbness/tingling/pins & needles may have been due to back issues which have just recently been discovered, only time will tell. I am 11 months now on a gluten-free diet and what for sure did pass with the ataxia and the vertigo. Still dealing with the rest of the issues.

That sounds a lot like me... its worse some days then others. Its very inconsistent. Crazy things like I'll go to put something in the kitchen cabinet and instead of puttying it on the shelf .... BAM ill hit the bottom of the cabinet instead and whatever I was trying to put away falls to the counter. Or loosing my balance and etc etc. I was told by a neurologist that my symptoms of neuropathy since they were not related to diabetes, were likely just hereditary. This is amazing information for sure. Thanks so much

[cmoore]

Wow this is all amazing information Im so grateful. Ive been hammering down probiotics thinking this was a Candida issue but I've not gotten to much tracking on what sounds to me like Ataxia. I should be back into having medial insurance this year (thank god) after loosing a job. I think at that point I need to press for an official test and diagnosis or maybe just going Gluten free right now will be what I need. In not sure how sensitive I really am to be honest.

In that past few years now 56 years old .....Problems with speech, typing, handwriting, walking, overall co-ordination. Its interesting I was told when I was 9 years old I was allergic to wheat but still ate it thinking it just made me sleepy. Yet my whole life I was known for being uncoordinated. As a teenager the joke was .... Clayton is the only guy we know who can fall down going up the stairs.... chuckle, chuckle. Funny then, not so much anymore. We were primarily a vegetarian household and I virtually grew up on vegetable protein made primarily from Gluten and Soy. Its not until later in life it seems to have just piled on this way. The Ataxia sym and numbness and tingling and all that stuff seems to have gotten much worse.

I had no idea. Wow!

I think my late mother had the same problem with Gluten and SHE had no idea.

Ill be spending more time here for sure.

[cmoore]

After things getting worse in this regard its clear I need to get much more strict about this and get my girlfriend on board or ill end up in a freaking wheel chair. Recently we had a great BBQ and I used Chakas BBQ sauce ..... yep Soy sauce and wheat both in the ingredients, how could I have missed that. ARGH!!!