What Can You Do To Deal With Neuro, Joint And "other" Issues?

[JoshB]

So, I finally got fed up with my GP and went to see a gastro. Going gluten free has made my stomach about 50% better, but hasn't really cleaned up all the other problems that seem to go along with it.

The gastro, of course, wants to do a endoscopy to evaluate how much damage remains and whether any further intervention is required, but he says that there's really nothing much to be done for all the other symptoms. He says particularly for neurological issues the time required for the body to heal is somewhere between "months" and "forever", and that all you can really do is eat properly and wait n' see.

I really dislike the side symptoms more than the "central" stomach symptoms, so I hope this isn't true even though it matches all the books and studies that I've read. Has anyone had success handling nerve and joint problems? IE you had tingling/static shock feelings/hot point pain/etc and you found some way to deal with it beyond "wait and see". Similarly if you had joint pain and/or eye pain was there anything that helped?

Probably the number one concern for me now is memory and concentration, and I don't even know where to start there. My vitamin levels seem to be back in reasonable ranges, and that's really all I know to do.

[pricklypear1971]

Have you had your thyroid checked? Do you have Hashimotos? Even though you're male (I assume from your name) you can still have issues.

Aside from that, take more vitamins, especially the b's, mag/cal/vitD.

I find salicylates bother me - preservatives and artificial colors. A bowl of salicylate-laced gluten-free chips made me whacked out after going gluten-free like I had a corticosteroid shot.

[rosetapper23]

My joint problems have pretty much disappeared--they only reappear when I get accidentally glutened. As for neuropathy, I'm afraid that mine never got better (sorry!). However, the brain fog did go away once I was entirely gluten free. Everyone is different in this regard. Just do your best to eat a clean, gluten-free diet....and be happy that some, if not all, of your symptoms resolve.

[pain*in*my*gut]

My joint problems have pretty much disappeared--they only reappear when I get accidentally glutened. As for neuropathy, I'm afraid that mine never got better (sorry!). However, the brain fog did go away once I was entirely gluten free. Everyone is different in this regard. Just do your best to eat a clean, gluten-free diet....and be happy that some, if not all, of your symptoms resolve.

I just asked a similar question about this topic earlier....sorry to hear that your neuropathy never got better. Ugghh....

[rosetapper23]

But...please know that I'm 54 years old and wasn't diagnosed with celiac until I was 47. You look much younger, so perhaps your neuropathy will improve. Every case is different...

[pricklypear1971]

I'm wondering if I have B12 anemia from malabsorption. I started b12 sublingual 2x per day, along with the cal/mag/vitD and now I can sleep and my hands shake less.

Ugh.

The eyelid twitch is less. I read that's a b12 sign.

[JoshB]

I think I'm good on vitamins, though the lab screwed up the "B" tests and wanted to draw again, but I never did go back in. I'm assuming that since everything else is OK, that B is good too.

I'm about thirty and have probably had celiac disease for twenty five years, so that's not as bad as some, but apparently bad enough to accumulate issues. Everything I've read says that about three times more women are diagnosed than men, but that men tend to have much worse symptoms. I've also read that blood screening shows equal rates between men and women, so what I suspect is happening is that men are less tenacious in figuring out what is wrong; more prone to "tough it out". Probably the ones who do seek out help are the worst cases.

I guess I'm hoping that someone knows a wonder-drug, or revolutionary new treatment, or... anything. I'm a programmer, so fatigue, lack of memory, finger pain and eye pain are all very bad. I could hardly have picked a worse set of symptoms to make work difficult. I'd exchange those "minor" symptoms for the "major" stomach issues again in a minute if I could.

[Takala]

Stick with the gluten free diet.

There is no "wonder drug" to deal with this.

I wouldn't "assume" with the B vitamins. Take the B vitamins, the multi, the calcium, magnesium, and D, in gluten free.

I've gotten over enough of the neuro symptoms that I can now concentrate and touch type and write, something that wasn't possible a decade ago.

The fatigue is going to be an ongoing thing, so you have to pick and choose which things you have to do and which things you really want to do - and not get worried about the rest. You will need to exercise (gently) whether you want to, or not, to increase your stamina.

We're just high maintenance compared to a lot of people.

[AVR1962]

So, I finally got fed up with my GP and went to see a gastro. Going gluten free has made my stomach about 50% better, but hasn't really cleaned up all the other problems that seem to go along with it.

The gastro, of course, wants to do a endoscopy to evaluate how much damage remains and whether any further intervention is required, but he says that there's really nothing much to be done for all the other symptoms. He says particularly for neurological issues the time required for the body to heal is somewhere between "months" and "forever", and that all you can really do is eat properly and wait n' see.

I really dislike the side symptoms more than the "central" stomach symptoms, so I hope this isn't true even though it matches all the books and studies that I've read. Has anyone had success handling nerve and joint problems? IE you had tingling/static shock feelings/hot point pain/etc and you found some way to deal with it beyond "wait and see". Similarly if you had joint pain and/or eye pain was there anything that helped?

Probably the number one concern for me now is memory and concentration, and I don't even know where to start there. My vitamin levels seem to be back in reasonable ranges, and that's really all I know to do.

I could have easily written your post. You are dealing with the very issues I have been for the past 7 months. My docs have not helped me much at all. I am curious what my MRI indicates to them when I see them at my next appt.

The eye pain that you are having.....is it like a needles nd pins poking?. I was also having this in between my toes and my fingers. I read that L-carnitine is supposed to help, started taking it and it went away. I was taking 1 tab in morning and one at night, backed it off to one tab and the needles and pins feeling came back into my eyes so for right now I take 2 a day and it is gone.

I posted last week about pain in my elbows that felt like shattering glass that radiated down my arm and I at first thought it might have been from lifting weights and I had pinched something. However, I had the same thing happen again.....had pain in the right side of my lower jaw, my wrists hurt and my shoulders joints were giving me trouble. The thing I am starting to tie this to is corn. This last time it is the only thing I ate that could have caused me these issues. One of my adult children cannot eat corn as it give her bone pain. I have trouble with my low back, old fractures on one of my hands and have had bone loss so I am taking BioSil drops and when my back acts up I take glucosamine.

Are you taking any B vit for your nuero issues? I found a product I just started using.....WSN Nerve Support Formula which claims to help with nueropathy issues.

Are you having any ringing in your ears? That was another problem for me and I have linked that to salicylate sensativity. I have taken the listed foods that cause this out of my diet just recently and I am already feeling better.

For me it has been a very slow process but as I find all this things that help, eliminating certain foods and adding vitamins, etc I am getting better. I too still am having real issues with my balance, my memory and energy levels are still real low. But I am startuing to feel human.

Keep working with it!

[T.H.]

I guess I'm hoping that someone knows a wonder-drug, or revolutionary new treatment, or... anything.

I'm in my thirties as well, have had this undiagnosed for over 20 years, and my symptoms are the aches and pains and neurological crap. Healing for some of this definitely comes slowly - the nerves just don't heal all that fast. The aches and pains and some of it, though, turned out to have a revolutionary new treatment, of a sorts, at least for me: I have gotten as gluten free as I possibly can.

The studies you mentioned, that say there's nothing that can be done and that some of this never heals? They all have a major flaw in them (all that I've found, and asked doctors about. Perhaps I've missed some, but I don't believe so). Everyone in them eats a regular, if strict, gluten free diet while on the study, or during the periods studied.

The problem with this: gluten free diets in all the countries where the studies were performed are NOT free from gluten. They have all either been diets where 20 ppm of gluten was allowed, or where 200 ppm of gluten was allowed. Researchers have never studied what happens with these patients if they attempt an as-close-to-0ppm-as-possible diet.

Other research, unrelated to neurological problems specifically, has shown that some celiacs are gluten sensitive enough that food which is 20 ppm concentration is over their gluten threshold and can cause gut damage. In fact, the FDA says this:

In sum, these findings indicate that a less than 1 ppm level of gluten in foods is the level of exposure for individuals with celiac disease on a GFD that protects the most sensitive individuals with celiac disease and thus, also protects the most number of individuals with celiac disease from experiencing any detrimental health effects from extended to long-term exposure to gluten. (pg 46, FDA's Health Hazard Assessment in Individuals with Celiac Disease)

Although 1 ppm can't be tested for with any accuracy and the cost goes up for companies, so the FDA seems to be trying to legalize 20 ppm, in all likelihood.

In a recent 'gluten threshold' study, one celiac had a complete clinical relapse on what was completely safe for all the other celiacs in the study - 10 mg of gluten a day. It's easy to get that much on a modern 20 ppm gluten-free diet. 2 gluten-free waffles, a can of gluten-free chili, and a gluten-free frozen dinner are already about 16mg of gluten, if one does the math. And that's if you ate nothing else except that during the day.

Unfortunately, all the studies that deal with safe gluten levels are centered on the gastro-problems. There ARE no studies on neurological symptoms and gluten threshold, but it makes sense that if some celiacs react to lower gluten levels with their guts, some celiacs who have neurological problems may react to lower gluten levels, too.

This seems to be my issue, and I've now met other celiacs with neurological issues who are in the same boat: we have to eliminate more gluten from our diet than the average celiac if we don't want to have problems.

Obviously, not everyone is the same. For some, the damage is permanent or the recovery quite slow. However, if you have started to improve and then hit a plateau, so to speak, it probably wouldn't hurt to try to go even more gluten free and see if that makes any difference for you.

There's a super-sensitive section to the forum where some of us talk about how we try to do that, further down. And also some information floating about the web, now, too. It's hard, and takes more research, but it's also eliminated my symptoms. I've had numbness and tingling, nerve pain, carpal tunnel, joint and muscle aches, eye fatigue, and insomnia completely disappear, along with depression and a host of other issues.

These persisted when I was on a 'regular' gluten free diet, and come back if I get gluten cc from something.

Here's hoping that your issues resolve soon.

[weluvgators]

Our experience is similar to what T.H. describes. We had eliminated all processed foods, did meticulous research on the whole foods that we continued to consume, and finally we eliminated spices that were not fresh, whole and washable. It is a lot of work, but the results have been tremendous for us - much better than the "making do" that we were living on a more "standard gluten free" diet (we were still pretty strict compared to standard as we are highly symptomatic to low levels of exposure). I find that the neuro symptoms are the first and most aggravating to surface for a couple of us in our family. And, yeah, the neuro sufferers in our family seem to suffer a fair bit more in some way than our more "classical celiac" child. Bellyaches are one thing, but the hazards of impaired neurological function just suck in so many ways . . .

I still get frustrated that I wasn't better supported in going more gluten free when we were searching for answers years ago. I tracked down the experts asking for any sort of help, and they told me that there was nothing to do (yet they nodded their head in understanding that super sensitive people like us DO EXIST). It was SO depressing. Thankfully, I did manage to find other super sensitives that seemed to understand the obstacles and "unbelievable" issues that we were facing from what seemed to be continued gluten exposures. And I really feel that getting super clean on our gluten free diet has improved our healing that we needed. One of us has had some other complicating issues, but they were paired with complicating environmental and incidental exposures . . . so hard to know *what* the real trigger was. Identifying and eliminating the environmental and incidental exposures provided her with relief, so it is hard to believe that gluten was not a triggering factor in the complications. In our experience it is hard to heal and get better when continually exposed to low levels of gluten, even if they are only incidental.

[frieze]

Methylcobalamin 1000 mcg (Vitamin B12) on an empty stomache daily. Are you taking an acid suppressor? if so you may need even more B12. I would try CoQ10 as well, anyone in your family have trouble tolerating statins? AND, yup clean up the diet to the nth degree. Does anyone use your work station beside you? If so, they may be contaminating you. Same for things at home, you really need a gluten FREE house! No compromising, your brain is too important to endanger!

[JoshB]

Well, I definitely haven't been as careful as possible. I normally eat whole foods that I've made myself, but I do eat out. I don't want to become a hermit.

My antibody levels have fallen to very low values, doesn't that indicate that I'm doing well enough on avoiding gluten?

[pricklypear1971]

Well, I definitely haven't been as careful as possible. I normally eat whole foods that I've made myself, but I do eat out. I don't want to become a hermit.

My antibody levels have fallen to very low values, doesn't that indicate that I'm doing well enough on avoiding gluten?

Perhaps. But there are super/sensitive celiacs and you may be one of them. Most restaurants unless a "gluten-free zone" will get you to a degree.

You also just need time to heal.

And I can't take the b12 on an empty stomach. The taste and everything else just kills me.

[frieze]

Methylcobalamin 1000 mcg (Vitamin B12) on an empty stomache daily. Are you taking an acid suppressor? if so you may need even more B12. I would try CoQ10 as well, anyone in your family have trouble tolerating statins? AND, yup clean up the diet to the nth degree. Does anyone use your work station beside you? If so they may be contaminating you. Same for things at home, you really need a gluten FREE house! No compromising, your brain is too important to endanger!

[beebs]

So, I finally got fed up with my GP and went to see a gastro. Going gluten free has made my stomach about 50% better, but hasn't really cleaned up all the other problems that seem to go along with it.

The gastro, of course, wants to do a endoscopy to evaluate how much damage remains and whether any further intervention is required, but he says that there's really nothing much to be done for all the other symptoms. He says particularly for neurological issues the time required for the body to heal is somewhere between "months" and "forever", and that all you can really do is eat properly and wait n' see.

I really dislike the side symptoms more than the "central" stomach symptoms, so I hope this isn't true even though it matches all the books and studies that I've read. Has anyone had success handling nerve and joint problems? IE you had tingling/static shock feelings/hot point pain/etc and you found some way to deal with it beyond "wait and see". Similarly if you had joint pain and/or eye pain was there anything that helped?

Probably the number one concern for me now is memory and concentration, and I don't even know where to start there. My vitamin levels seem to be back in reasonable ranges, and that's really all I know to do.

Are you sure that you don't have another autoimmune disease as well? Might be time for you to see a rheumy. I have both neuro (brand new symptoms- yayy! Not) and joint issues/arthritis for years that seem to be some kind of connective tissue disease. I was so excited going gluten free because I thought I might go into remission with that stuff...Sorry to say I have been gluten free since dec 2010 and no difference whatsoever! Arrgghhh!

[JoshB]

Are you sure that you don't have another autoimmune disease as well? Might be time for you to see a rheumy. I have both neuro (brand new symptoms- yayy! Not) and joint issues/arthritis for years that seem to be some kind of connective tissue disease. I was so excited going gluten free because I thought I might go into remission with that stuff...Sorry to say I have been gluten free since dec 2010 and no difference whatsoever! Arrgghhh!

I'm not sure at all, but I'm so tired of wasting money and time, and there are so many co-morbid conditions that kind of fit I don't even know where to start looking if I was going to. I went to the gastroenterologist mainly for this purpose; my assumption was that he would be experienced in dealing with celiac disease as a whole and know best how to proceed from there. What I actually got out of him was basically "Of course you have a bunch of associated problem, and no there's not much we can do. Good luck. No I can't tell you much about your joint pain/eye pain/memory problems/frequent sinus infections; I'm not a ortho/ eye/ neuro/ ear doctor."

[beebs]

I'm not sure at all, but I'm so tired of wasting money and time, and there are so many co-morbid conditions that kind of fit I don't even know where to start looking if I was going to. I went to the gastroenterologist mainly for this purpose; my assumption was that he would be experienced in dealing with celiac disease as a whole and know best how to proceed from there. What I actually got out of him was basically "Of course you have a bunch of associated problem, and no there's not much we can do. Good luck. No I can't tell you much about your joint pain/eye pain/memory problems/frequent sinus infections; I'm not a ortho/ eye/ neuro/ ear doctor."

A Rheumy is your best bet I reckon...because you are celiac it means that you have a high chance of other autoimmune diseases. (I have two including celiac and about to be diagnosed with another) Your symptoms sound similar to mine ( I am 33 and mine started showing up at 28) If it is some kind of connective tissue disease - the sooner you get onto the better. Not saying thats what it is - but you've been gluten-free for awhile and there is no improvement. Are you in the US? Or somewhere else? Just in terms of expense I mean....

[lucia]

The fatigue is going to be an ongoing thing.

I was surprised to see this. Why do you say that Takala? It seems like many here regain their energy on the gluten-free diet. Is this generally the consensus?

[T.H.]

Well, I definitely haven't been as careful as possible. I normally eat whole foods that I've made myself, but I do eat out. I don't want to become a hermit.

For whole foods that you are making yourself: have you gone whole hog on eliminating gluten cc? Sanded down or bought new wooden utensils and cutting boards? Scoured out any stainless steel pots and pans? Avoided any non-stick pans with scratches from before? Got new spices to make sure the old ones are contaminated on the pouring/shaker spout?

For eating out, one definitely don't have to be a hermit, even as a super-sensitive. At a place where I can go out to eat, I take my food with me. Most restaurants are very accommodating if I call ahead, let them know I'll be with a party where everyone but myself is planning to order from the restaurant, but that I have reactions to foods that will be too difficult to accommodate. I ask them if they have any objections to my bringing my own food. They rarely do.

Usually, I bring a discreet little bento box with my food and get to enjoy everyone else's company at the same time.

How careful are you on eating out? Do you talk with the manager and make sure they are being safe for you? That alone can cause problems if it's not done. Most people I know, though, have found a few restaurants that are safe for them to eat out at.

My antibody levels have fallen to very low values, doesn't that indicate that I'm doing well enough on avoiding gluten?

So far, it's unknown whether low antibody levels that indicate the gut is not being damaged are indicative of a lack of neurological damage, as well. Most neurologists don't know must about Celiac Disease and gluten ataxia. Most GI docs don't know much about neuro damage. Studies are very few and far between when it comes to neuro issues and gluten.

In a lot of ways, most celiac with neuro issues are out of luck and on their own.

IMHO, the best-guess answer is: if your symptoms have stopped improving, you may be getting too much gluten. If they are slowly improving, you're probably doing well. And if you aren't slowly improving, you get rid of as much gluten as possible, and it still won't go away? Then it's likely either permanent or due to some other issue.

[Lori2]

I have problems with neuropathy in my feet. The burning at night keeps me awake. However, if I go back to my "safe dozen" I have no problem. I had thought that neurological problems would heal gradually, so I am surprised that it can vary so much for me in a few days. This week is good--last week was bad--the week before, good.

[Lori2]

Another thought. Blood tests for vitamin and mineral levels are not always good indicators of tissue levels.

[Kquad]

In a lot of ways, most celiac with neuro issues are out of luck and on their own.

That is one of the truest statements of the day!!!!!!

[cyberprof]

...For eating out, one definitely don't have to be a hermit, even as a super-sensitive. At a place where I can go out to eat, I take my food with me. Most restaurants are very accommodating if I call ahead, let them know I'll be with a party where everyone but myself is planning to order from the restaurant, but that I have reactions to foods that will be too difficult to accommodate. I ask them if they have any objections to my bringing my own food. They rarely do.

Usually, I bring a discreet little bento box with my food and get to enjoy everyone else's company at the same time.

How careful are you on eating out? Do you talk with the manager and make sure they are being safe for you? That alone can cause problems if it's not done. Most people I know, though, have found a few restaurants that are safe for them to eat out at.

Shauna, while I agree with many of your points, it's important to note that bringing in your own food to restaurants is illegal in some states/cities, Washington State as a case in point. I am in Washington. It is also impractical for executives and other business people who have 50+ hour a week jobs (like me) and lots of travel to places where they don't know anyone and aren't familiar with the restaurants. We just have more limitations than those who don't travel or who don't have business lunches or conferences one or more times a week.

[Kquad]

Shauna, while I agree with many of your points, it's important to note that bringing in your own food to restaurants is illegal in some states/cities, Washington State as a case in point. I am in Washington. It is also impractical for executives and other business people who have 50+ hour a week jobs (like me) and lots of travel to places where they don't know anyone and aren't familiar with the restaurants. We just have more limitations than those who don't travel or who don't have business lunches or conferences one or more times a week.

That may work for some, but the super sensitive among us, not so much. Even an unwashed hand with a trace of gluten means days of sickness or worse weeks of ataxia. I even try to limit my processed gluten free food, as it has trace ( less than 20 ppm) and seems to slow down my healing. Is there any place that I can reference who has only 5 ppm in their food?