Neuro Issues? Help Me Understand?

[Nikki2777]

I'm really trying to understand the science.  I was diagnosed with Celiac about 6 weeks ago.  Think I had some mild GI symptoms (and endo showed mild villous atrophy) and only about a week before dx felt like something wasn't right mentally (difficulty forming words for a brief period).  

 

I've been gluten-free for six weeks and generally feeling better, but I've had one or two more 'episodes' like the first in the last week or two.  Shouldn't being gluten-free have stopped this?  Are the neuro problems caused by vitamin malabsorption?  Is any damage done neurologically reversible?  For the first time since this started, I'm beginning to get scared.

 

Can anyone help me understand how bad this is or may get?  I'm going to start looking for a specialist, but in the meantime I'd love the input of those who've been studying this for longer than I have.

 

Thanks.

[Takala]

It takes a long time for damaged tissue to heal up from the antibody attacks your body is performing on itself.  The malnutrition doesn't help, but it's auto immune damage.   Strictly gluten free will stop this, but it takes time.  The earlier research articles I have read (done by European researchers doing data analysis of older people with idiopathic cause unknown ataxia )  implied that it was difficult to recover, but there are people here, including myself, who have stuck it out and who mostly did do so.   I didn't have a good experience with the last neurologist, but that person presumably had no idea what the hell she was doing, was not pleased when my test results DID finally show brain damage, ( and I had to wrestle the test results out of that office) did not believe me when I repeatedly told her I could alter symptoms with my diet, (they think these types of patients are crackpots)  and could not be bothered because I didn't fit into her bad diagnosis box she had attempted to shoe- horn me into.  It took me several years and doctors and insurance plans to get somebody to actually look at my damned brain. .  Maybe I should have just not worn a helmet, and done something stupid !  Idiots !   So now every time I read that doctors in America are doing "too many" diagnostic scans like MRIs and cat scans, and it costs too much, (these things are cheap every where else, by comparison)  I really am not feeling all warm and fuzzy about the concept of going back into some rip - off HMO with quack doctors just to save money. 

 

Stick to the gluten free diet and eat as little processed food as possible, eat vegetables, take the gluten free vitamin and mineral supplements, and drink plenty of water, exercise,  you'd get better results than waiting for some doc to tell you you can wait two months for the follow up appointment again. and again. and again.... 

[Nikki2777]

Thanks.  What kind of vitamin/mineral supplements should I be taking?

[Takala]

A gluten free multivitamin with B complex (the B vitamins are important) and a calcium, magnesium, vitamin D type one.  The B vitamins are the ones where you can actually feel the difference, after taking them for just a short time.  Some people take the sub- lingual ones, under the tongue.  The calcium/magnesium for replenishing bone loss, with the vitamin D.  Calcium citrate is good and better absorbed, calcium carbonate is not good and can contribute to kidney stones.   Some people go hog wild with all these different supplements, but you just need to be able to compensate for what you have been missing out on, from it not being able to be absorbed properly.  Just be absolutely sure they really are gluten free, I've seen a few sources trying to give advice to take "this" or "that" and the supplement actually had wheatgrass or barley in it, or something else weird, like a lot of herbs and very little vitamin.  

[Nikki2777]

Thanks so much!  Can you recommend a gluten-free brand?  Not sure I trust the guy at the health food store to know.

[kareng]

Thanks so much!  Can you recommend a gluten-free brand?  Not sure I trust the guy at the health food store to know.

Lots of brands say " gluten-free" right on them. These you can find at Target and Walmart

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[cavernio]

It is also possible your gluten reaction is more sensitive than you think. My neuro symptoms are the only ones I noticeably have when I eat gluten, and they've gotten better if I avoid anything that will likely have traces. This mainly includes flours which are labelled gluten-free but will probably have some miniscule amount in them. Studies that show that less than 20ppm gluten is safe are based off of villous atrophy only, least the ones I've seen. Which makes sense given that the official diagnosis of celiac disease is based only on intestinal damage. But it doesn't make much sense given the extent that this auto-immune disease manifests itself.

 

That said, I've been gluten-free 10 months and I'm nowhere near healed fully. I've had celiac symptoms for 13 years now though (could very well be longer actually having it), and extensive intestinal damage, and of course, neurological symptoms such and tiredness, poor concentration, and perhipheral nerve pain.

 

There are more nutrients than just the previous ones listed that you might be deficient in, ones that could be responsible for nerve damage, such as vitamin E. Also be careful of what dose you take, B6 for instance could CAUSE nerve damage if taken in a dose even as low as 50mcg/day...granted that's probably if you're not deficient in it.

 

Nerves themselves don't repair quite as easily as many other body parts, (think parapalegic), but it's not impossible nor do motor neurons represent your entire nervous system. (I think it's only the myelin sheath that has problems regrowing, not the neurons themselves.) Grey matter by definition isn't myelinated. Even with extensive brain damage, a motivated person can regain many lost abilities, as the brain reroutes pathways.

 

Annd, as to how bad it can get...very,very bad. Be thankful you don't have any ataxia. At its worst, celiac disease can kill. If you are careful with what you ingest though, this isn't a worry in the least.

 

 

Gah, keep adding to this. The neuron symptoms are likely caused by your immune system attacking itself, much like the villous damage is by your own immune system. It is possible it is only a vitamin deficiency, and likely there's some vitamins you're deficient in regardless, but I'd play my bets on the damage being purely the celiac disease itself.

 

I found this article very insightful, and it was the hammer in the lid that made me realize my neuro issues were the disease itself, not just nutritional problems.

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[Aseneth]

A gluten free multivitamin with B complex (the B vitamins are important) and a calcium, magnesium, vitamin D type one.  

Hi, Takala.  Why is Vitamin B important?  I am not actually celiac (at least the tests were negative) but am clearly gluten-sensitive, with severe neurological fall-out--seizures that accompany the GI distress.  I was diagnosed with temporal lobe epilepsy about 3 weeks before I discovered the gluten-sensitivity.  Since being off gluten, I have had no seizures, no "arthritis" symptoms (which I just accepted as a sign of age, but realize were gone after a month gluten-free) and no GI problems--which were extreme. I think the calcium is important because I am also "osteopenic" (a step down from having osteoporosis), but why B?  Thanks.