I Stumble Around Like A Drunk Sometimes.

[Pyro]

Even though I don't drink (during normal hours) or have any neuro problems that I know of, sometimes either in the morning or in the evening I start to feel somehow removed from controlling my muscles right and end up charging around like Groucho Marx almost always tripping or knocking into something. When this is going on it feels like my joints are inflamed and achy even though I'm only 22 and shouldn't have problems more common to older people.

Before completely perfecting my diet it could be even worse, and my stance / gait (hair also) would at times get almost as bad as this:

Who else deals with this and is there any idea why? My posture is pretty good, I'm active, and there is no reason I should have scurvy.

[ravenwoodglass]

What you are describing is likely gluten ataxia. What are you eating and drinking? I suspect gluten is slipping in somewhere. I have ataxia and I have to be superstrict. I avoid gluten ingredients in toiletries and have to avoid it in distilled gluten products also like vodka, whiskey and gluten grain vinegars. If you really like pickles and live near a Wegmans they do not label distilled gluten vinegars as gluten free so if you see the circle G that item is safe. I eat very little processed food or food cooked by others. I know it's hard at your age to be superstrict but ataxia is caused by gluten attacking the brain. It can eventually cause damage that can't be fully reversed. I doubt your at that point now but you risk getting there eventually.

[Pyro]

Whoa, that sounds really scary. The last slip I would have made was to drink some sugar free fruity drinks (like vitamin water or gatorade) where the splenda usually bothers me but I needed something cold. Other than that, It could be CC from using pots and pans my parents use or even eating bacon from the local farmer's market where they chop all of their different meats on the slicer without washing it in between.

[ravenwoodglass]

Whoa, that sounds really scary. The last slip I would have made was to drink some sugar free fruity drinks (like vitamin water or gatorade) where the splenda usually bothers me but I needed something cold. Other than that, It could be CC from using pots and pans my parents use or even eating bacon from the local farmer's market where they chop all of their different meats on the slicer without washing it in between.

Can you get pans for your own use only? Also if the family bakes with wheat flour that remains airborne for up to 24 hours and can cause issues for us.

[RiceGuy]

The things ravenwoodglass mentions seem worth considering.

Some things which I know can cause motor nerve problems include nutrient deficiencies, such as magnesium, vitamin B12, vitamin D, and zinc. All B vitamins would also be on my checklist of things to look into.

Candida overgrowth is known to cause neurological problems, so I wouldn't rule that out either.

You may have a food sensitivity of which you're not aware. Consider the top allergens, which include wheat, dairy, soy, corn, eggs, nuts, peanuts, and shellfish.

Some people are sensitive to various things in the environment. Fumes from carpeting or upholstery, gas leaks, mold, nearby radio/cell phone transmission towers, or even florescent lighting.

[GlutenFreeManna]

In addition to what previous posters suggested you might look into other auto-immune diseases like lupus or thyroid diseases. Since those are common in people that have celiac disease. Get to see a doctor if this persists. Neurological problems can get worse and be really scary. I had memory loss, hair loos, balance issues, numbness, dexterity issues, muscle weakness and eventually random fainting/seizures. The scariest thing is waking up on the floor and not knowing how you got there. Mine was caused by gluten almost definitely. I am super strict about the diet for that reason (and because I react to even minor cc).

[MelindaLee]

Reading these posts made me start thinking. (Guess I am in the right place! ) I was diagnosed with "atypical migrains". It would distort my vision, and the last episode, when I got the diagnosis, I had numbness in my left arm and my lips. It only happened twice (though the numbness caused enough concern I ended up at the hospital) so I have no clue what I might have eaten. I was not gluten MRI's ruled out anything going on in my brain (actually they said my brain was insignificant ) But after that I had multiple times it felt like hot pins were being stuck in my arms and legs. I realized since I have gone gluten free that I haven't had any of these sensations. Has any one had similar symptoms?

[txplowgirl]

it felt like hot pins were being stuck in my arms and legs.

I can relate to this big time. I refered to it as being stuck with a lighted match in my muscles. I was diagnosed with fibromyalgia but they didn't go away until a few weeks after going gluten free. I am begining to wonder if I was misdiagnosed.

[gf-soph]

Just to add, I didn't see if you mentioned if your B12 has been checked? I have very similar symptoms when I am low in B12, it's pretty obvious when I am below 200, but for me below 300 also gives me symptoms.

The symptoms of low B12 is also exacerbated by low iron for me, as it adds exhaustion to the lack of balance and coordination. If you haven't had both of those checked, do it asap.

[ravenwoodglass]

Reading these posts made me start thinking. (Guess I am in the right place! ) I was diagnosed with "atypical migrains". It would distort my vision, and the last episode, when I got the diagnosis, I had numbness in my left arm and my lips. It only happened twice (though the numbness caused enough concern I ended up at the hospital) so I have no clue what I might have eaten. I was not gluten MRI's ruled out anything going on in my brain (actually they said my brain was insignificant ) But after that I had multiple times it felt like hot pins were being stuck in my arms and legs. I realized since I have gone gluten free that I haven't had any of these sensations. Has any one had similar symptoms?

Did they say your brain was insignificant or that the findings were insignificant?

The reason I ask is because I have gluten ataxia and other brain impact. On the MRI they found what the doctor called UBOs. Unidentified bright objects. These were something the neuro said were meaningless but in reality through my research years later I found out they are actually diagnostic of celiac that has attacked the brain.

[rdunbar]

Another one of the many things I've had wrong with me that I never knew or thought had anything to do with each other is the stumbling, kind of woosey feeling accompanied by the lack of ability to focus my eyes, even double vision. Recently I found out it is called gluten ataxia.

I was going through old family photos recently I found 2 photos where I have a "droopy" eye, one at @3-4 years old and another @16 ; when I've had these episodes in the past, my eyes feel like they are drooping, and I can't pick them up

like you it tends to happen at night or on the morning

I have to say that after being super strict gluten and casien free now @6 months, it is the symptom that has improved the most, even after a recent accidental glutening, it didn't come back with a vengence like the DH , D, achy stiff joints, and tingling arm, mood problems , brain fog, ect..:

It used to be scary having to get up to go to the bathroom at night , I got in the habit of grabbing the edge of the door and the door jamb so I wouldn't run into them!

Also, I used to have a tendancy to " bumble" at work sometimes, even though I was very skilled, I would lose my coordination sometimes and kind of melt down, maybe a few times a month, I'm not sure, but maybe this was part of the ataxia too?

[MelindaLee]

Did they say your brain was insignificant or that the findings were insignificant?

The reason I ask is because I have gluten ataxia and other brain impact. On the MRI they found what the doctor called UBOs. Unidentified bright objects. These were something the neuro said were meaningless but in reality through my research years later I found out they are actually diagnostic of celiac that has attacked the brain.

They didn't find anything unusual in the MRI. I just thought it was funny the way they said my brain was "insignificant", as I often think I am quite significant!

They didn't mention any UBOs or anything. They were pretty confident that it was the migrane, and actually two different doctors indicated this. They were more confused by the numbness...and then the hot pricklies. I got the impression they didn't know what would cause this. From everything I have read, the migranes, despite if they are the typical or not, can be related to celiac. I am also thinking the other neurological symptoms are as well. My hands don't go numb any longer now that I have been gluten-free. I didn't have any of the GI symptoms that so many seem to have suffered from...or so I thought. I thought some gas and bloating was more related to my monthly cycle...but I am also noticing that this hasn't fluctuated in the few weeks I have been gluten-free either. I truly thought all of this was "normal" since I turned 40 a couple years ago. Glad I was wrong about that!

[ravenwoodglass]

I was going through old family photos recently I found 2 photos where I have a "droopy" eye, one at @3-4 years old and another @16 ; when I've had these episodes in the past, my eyes feel like they are drooping, and I can't pick them up

I have to wonder if the drooping eyelid, ptosis, might be a pretty common thing with those of us that have neuro impact. It is one of those things that I have even seen in my own family members and myself before diagnosis. My right eyelid before diagnosis would at times droop so much it obscured my vision. I have also noticed this in others who I have talked to that are questioning celiac in themselves and in some of the Special Ed students I worked with, especially after they would return from lunch. In myself I know it is from the lesions on the left side of the brain, I still have a 'crooked smile' on the right side and that was the side most impacted by the lesions. (The left side of the brain controls the right side of the body). So much to still be learned about celiac brain impact.

[anabananakins]

I can relate to the stumbling! I've always found it hard not to walk into things, like I bump into people walking next to me or I clip the edge of the door frame as I walk through into a room - I sort of tip towards things; I always thought I was clumsy. I had particular problems with walking down a corridor with people walking towards me, it makes me feel even more wobbly and all too much to deal with, I'd often stop so they can walk past me. These things have resolved considerably since I went gluten free.

[Marilyn R]

I can relate to the stumbling! I've always found it hard not to walk into things, like I bump into people walking next to me or I clip the edge of the door frame as I walk through into a room - I sort of tip towards things; I always thought I was clumsy. I had particular problems with walking down a corridor with people walking towards me, it makes me feel even more wobbly and all too much to deal with, I'd often stop so they can walk past me. These things have resolved considerably since I went gluten free.

My Mom has celiac disease. She's 86 now and is totally non-ambulatory. She had gait ataxia way before gastro problems. I remember as a teen being told that somebody saw my mother downtown drunk on her a**, and I never even wondered if Mom had been drinking. She's very religious and a tee-totaler.

Mom doctor shopped for an answer to the peripheral neuropathy, but has never been compliant with s gluten-free diet, even after being diagnosed in the late '80s by Mayo Clinic with Celiac Disease. She's a breast cancer survivor, and two of her sisters (my beloved aunts) died of breast cancer.

Mom was a registered nurse. She's super smart but still denies the consequences of gluten on our immune system. Mom expresses sincere remorse that I have celiac disease, but tells me that I'll be able to tolerate gluten and dairy later in life. She doesn't have "d", and even gets constipated! (Like that's proof.) She has DM, but that's to be expected because of her advanced age. She can eat pizza and sandwiches. Her main complaint is that her scalp is itching like crazy. I think, but cannot comment, that this disease has attacked her from the bottom of her feet to the tip of her head.

I'm one of the lucky ones though...my first cousin died of MS at 30 something and left two young girls without a mother. When I have a pity party about having to plan everything I eat, I think about how easy I have it compared to cousin Connie, and how she missed proms and weddings. We're the lucky ones...don't forget. We know and we accept. And I don't know about you, but I came back from a place I never want to visit again.

[thleensd]

I can relate to the stumbling! I've always found it hard not to walk into things, like I bump into people walking next to me or I clip the edge of the door frame as I walk through into a room - I sort of tip towards things; I always thought I was clumsy. I had particular problems with walking down a corridor with people walking towards me, it makes me feel even more wobbly and all too much to deal with, I'd often stop so they can walk past me. These things have resolved considerably since I went gluten free.

Me too. haha...I used to be such a graceful person... or at least athletically coordinated. Now I walk into walls all the time - especially hallways. Ok, not all the time, but it IS getting better (1.75 yrs gluten free), except when I need to eat. Then it's right back to drunken stagger.

[thleensd]

Reading these posts made me start thinking. (Guess I am in the right place! ) I was diagnosed with "atypical migrains". It would distort my vision, and the last episode, when I got the diagnosis, I had numbness in my left arm and my lips. It only happened twice (though the numbness caused enough concern I ended up at the hospital) so I have no clue what I might have eaten. I was not gluten MRI's ruled out anything going on in my brain (actually they said my brain was insignificant ) But after that I had multiple times it felt like hot pins were being stuck in my arms and legs. I realized since I have gone gluten free that I haven't had any of these sensations. Has any one had similar symptoms?

Yep! First time I was about 13 and shopping with my parents. One hand, then arm, tip of nose, toes, foot started to tingle. Everyone thought I was having a stroke. It happens from time to time still, but FAR less since going gluten free and becoming less malnourished.

Also, you may consider looking up "peripheral neuropathy" ... may or may not find some similarities there.