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ratz

Neuropathy After Long-term Gluten-free Diet

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Hi All,

Over the last few weeks, I have greatly benefited from all of you guys posting your stories here, so I thought I'll tell you a little bit about my situation. Maybe there's someone else out there who has such a weird set of symptoms ...

I have been diagnosed about 16 years ago, in my early twenties. At that time, I had severe GI symptoms, but no sympoms outside of the GI (i.e. no Dermatitis, no Neuropathy). Gluten free diet ever since, with total dissapearance of all sympoms for about 12-13 years. Then, gradually, I started to develop a specific, migraine-like headache whenever I had eaten a trace amount of gluten (accidentally). Typically, the headache would start on the morning after I had glutened myself, and last only that day. About 1-2 years after the onset of these headaches (which I developed maybe 5-10 times per year), I started to develop muscle twitches. Never had anything like it before, so I thought that was a little freakish, but it didn't bother me too much and I didn't think too much about it. Around the same time, my legs started feeling what I would call 'rubbery'. This was just a perceived weakness, i.e. I could do sports just like before. Then, just about a week ago, I developed pins and needles sensations in my legs, and tingling in my face, along with dizziness and nausea. The onset of that was associated with two bouts of the 'gluten-headache', so I am fairly certain that this has something to do with me being celiac. From reading on this forum, it seems that many of you have had (or still have) similar symptoms, many of you while on a gluten-free diet.

Now, I am aware that there is more and more literature on neuropathy in celiac patients. Also that the neuropathy does not always disappear when affected people go on a gluten-free diet. However, I find it a little strange that all of these neurological sympoms started after I had been gluten-free for quite a few years. Interesting stuff ...

Maybe someone has an opinion or recommendation they'd like to share ...

Best wishes to everyone!

ratz

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Have you had bloodwork to check your vitamin levels? Particularly B12? You may see if this is causing the tingling. My arm has been going numb off and on for several months and my dr says this could be the reason. You can google B12 defficiency, it could have been an underlying issue. Many celiacs are deficient in vitamins, I'm not sure aboutafter the diet for several years, but could be a good starting point to check out.

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I suggest that you cut out trace gluten by cutting processed foods and grains. If you can get rid of your symptoms, than you could add things back to know what bothers you.

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You need to go back to basics with the diet and avoid processed foods as much as you can. Also check all meds and supplements and check all your toiletries. Think back to when this began, what are you doing different? Have you started doing crafts or home remodeling? Many items used for those are not safe to use without protection in the form of gloves and at times a respirator mask. In addition some with neuro issues are senstive to gluten grains even when distilled. If you use gluten grain vinegars or drink gluten grain alcohols even if distilled stop for a while and see if that helps. If nothing helps or the symptoms become more severe be sure to check with your doctor. We are prone to development of other autoimmune disorders and you may need to be evaluated for them. After you have gotten your B12 levels checked do try supplementing also with some sublingual B12 and see if that helps even if your levels seem to be within normal ranges. It can take some time for a B12 deficit to show up on your blood work and if the levels are below 500 you may need to supplement.

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How's your blood sugar? The doctor will check your fasting glucose, but what you really want to know (to rule it out as an issue) is what your blood sugar levels look like 1 and 2 hours after various meals and snacks. You can have a blood sugar problem that is causing or aggravating neuropathy without diabetes and without having an abnormal fasting glucose. See bloodsugar101.com for details - search for neuropathy. If you decide to explore this further and have questions, the Bernstein Diabetes Forum is a good info source. But be sure to post back and let us know how you're doing with the detective work!

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Hi All,

Thanks to all of you for your suggestions.

I have had Vitamin B12 levels checked; they were fine. Blood sugar was actually high (impaired glucose tolerance), which should not be the case, as I am normal weight and very active. I also have some other 'weird' symptoms, such as vitreous floaters in the eye (I see little black dots and translucent strands when I look into the light) and melasma (hyperpigmentation of the skin). I also had low white cell blood count, and low platelet count occasionally.

The combination of all of these got me thinking that they might be related, and I asked my doc to check my copper levels. Both copper excess (Wilson's disease) as well as copper deficiency can cause neuropathy, low white blood cells, pigmentation issues, and glucose intolerance. And indeed, I had extremely low copper excretion in urine. We are not sure yet why that is. Might be related to the fact that I had been undiagnosed with celiac for 2-3 years. But then, that was ~15 years ago, and since I have been pretty strictly gluten free. One issue might be that I had taken relatively high-dose zinc for a few years. Zinc (as well as iron) in high doses lowers copper absorption. So be careful with long-term high dose zinc intake > 30 mg/day!

A word of caution though for those of you who might read this. Don't take copper supplements unless you KNOW you are copper deficient. Actual symptomatic copper deficiency is thought to be pretty rare. And, copper in excess can be very toxic! And even if you are deficient, there is rarely a reason to take more than 1-2 mg per day over longer periods of time.

Always consult with your doctor before taking anything. Seems to me that applies to us Celiacs even more than for others.

Take care!

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When you say your B12 levels were fine what were they. We can start to get symptomatic from lack of B12 utilization with levels below 500 even though many doctors consider anything under around 200 to be fine. Your body can stop utilizing B12 for a long time before the tests 'bottom out'.

Also if you are supplementing with B12 already that can effect the test.

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Congrats on your detective work. I am not sure I've ever read anything about copper deficiency and/or zinc toxicity having anything to do with blood sugar. I have seen some writes suggesting that zinc deficiency can lead to diabetes. Anyway, I just want to reiterate that you could have several factors contributing to the neuropathy, and of course the IGT (impaired glucose tolerance) has to be addressed regardless.

FWIW, my spouse's blood sugar issues resolved as he identified his food intolerances and modified his diet accordingly. I think this has something to do with inflammation in general, but I'm really not sure. Like you, he's slim, active. He was eating a healthy prudent diet (no soda, plenty of vegetables and healthy whole grains like steel cut oats and brown basmati rice.)

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Now, I am aware that there is more and more literature on neuropathy in celiac patients. Also that the neuropathy does not always disappear when affected people go on a gluten-free diet. However, I find it a little strange that all of these neurological sympoms started after I had been gluten-free for quite a few years. Interesting stuff ...

Maybe someone has an opinion or recommendation they'd like to share ...

Hi ratz,

FYI, you should know that celiac disease is known to continue to cause brain damage even after the patient is gluten free!

I've had lots of neuro symptoms that my neurologist believed were caused by celiac disease, so I've done a bit of reading on the subject. Here's the abstract of a medical article describing one type of celiac ataxia in four patients (from the medical journal Brain)

http://www.ncbi.nlm.nih.gov/pubmed/7496772

Progressive myoclonic ataxia associated with coeliac disease. The myoclonus is of cortical origin, but the pathology is in the cerebellum.

We report four patients with a progressive myoclonic ataxic syndrome and associated coeliac disease. The onset of the neurological syndrome followed the gastrointestinal and other manifestations of coeliac disease while on a gluten-free diet, in the absence of overt features of malabsorption or nutritional deficiency. The condition progressed despite strict adherence to diet. The neurological syndrome was dominated by action and stimulus sensitive myoclonus of cortical origin with mild ataxia and infrequent seizures. Plasmapharesis and immunosuppressive treatment were tried in two patients but were not beneficial. Post-mortem examination of the brain in one case showed selective symmetrical atrophy of the cerebellar hemispheres with Purkinje cell loss and Bergmann astrocytosis, and with preservation of the cerebral hemispheres and brainstem. Coeliac disease should be considered in the differential diagnosis of all patients presenting with a progressive myoclonic ataxic syndrome.

This is scary stuff!! :(

JoAnn

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I am a little over 3 months gluten free, and started having neuropathy about a month ago. My b12 is around 575, and I take Suber B Complex plus sublingual b12 twice a day. My blood sugar is 79 or 80 no matter if I am fasting, or had a meal within 30 minutes or two hours, never changes.

Is this just something that happens with Celiac?

My chiro suggested alpha lipoic acid, which I take twice a day, and it helps a little. Rubbing Activon on my ankles and behind my knees helps a little bit too. Anyone have any other ideas? If it's not one thing, it's another with this condition, isn't it? <sigh>

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Hi All,

Thanks again.

My B12 levels in serum were in the high 800s. Don't think that could be the cause. Also, with the combination of symptoms I had, I am pretty certain that they were all caused by the copper deficiency. My urinary copper excretion was 3 microg/day (normal is between 20 and 50). Glucose intolerance has been described as a consequence of copper deficiency. Should be totally reversible, I think.

What interests me more at this point is why I developed copper deficiency. A daily zinc dose of 30-60 mg should impair copper absorption a little bit, but can not by itself explain clinically manifest deficiency. Celiac might explain another portion. Another issue might be that I have a genetic defect that predisposes me to iron storage disease (hemochromatosis). Iron, zinc, and copper all influence each other quite a bit, so that might be a possibility. It's interesting, and immensely complicated at the same time, how we are all a little different in how our genes and our lifestyles interact and predispose us to slightly different clinical manifestations.

That's also why I am with all of you who feel worried about their 'weird' symptoms, particularly if they persist although you are already following a strictly gluten-free diet. However, I believe that there is hope, and that the main issue is that we don't know enough yet about what the actual pathophysiology of this disease is, and how it might be affected by other genes or lifestyle choices we make. Like in my case, no doctor ever mentioned copper to me, and I can't blame them. It took me many hours reading the medical literature to get that idea, and to connect all the dots, and no doc in a hospital has time to read up on all of that because a middle aged guy has some tingling in his face. Similarly, I haven't yet read any good explanation for what I call my 'gluten headaches'. Must be some kind of inflammation due to the immune response to gluten, but it's unclear to me why that would affect my brain. I think though that the progress in our understanding in the last 15 years alone has been quite impressive. If science continues at that speed, we should get closer to understanding the intricacies of what's going on rather sooner than later ...

Take care, and don't worry too much (that certainly doesn't make the neuropathy better, I have found ...;-).

Cheers

Ratz

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well, i am sorry to hear about your neuropathy but it is because of the times you get gluten. my dad had the neuropathy badly, he also developed lupus and he did not follow the gluten-free diet faithfully. you cannot eat any gluten or products that are questionble, even if it means living on veggies nuts and fruits. and yougurt. that is mostl what i eat now, having been diagnosed about five years ago. iam 47, and dont even eat anything questionable.

Hi All,

Over the last few weeks, I have greatly benefited from all of you guys posting your stories here, so I thought I'll tell you a little bit about my situation. Maybe there's someone else out there who has such a weird set of symptoms ...

I have been diagnosed about 16 years ago, in my early twenties. At that time, I had severe GI symptoms, but no sympoms outside of the GI (i.e. no Dermatitis, no Neuropathy). Gluten free diet ever since, with total dissapearance of all sympoms for about 12-13 years. Then, gradually, I started to develop a specific, migraine-like headache whenever I had eaten a trace amount of gluten (accidentally). Typically, the headache would start on the morning after I had glutened myself, and last only that day. About 1-2 years after the onset of these headaches (which I developed maybe 5-10 times per year), I started to develop muscle twitches. Never had anything like it before, so I thought that was a little freakish, but it didn't bother me too much and I didn't think too much about it. Around the same time, my legs started feeling what I would call 'rubbery'. This was just a perceived weakness, i.e. I could do sports just like before. Then, just about a week ago, I developed pins and needles sensations in my legs, and tingling in my face, along with dizziness and nausea. The onset of that was associated with two bouts of the 'gluten-headache', so I am fairly certain that this has something to do with me being celiac. From reading on this forum, it seems that many of you have had (or still have) similar symptoms, many of you while on a gluten-free diet.

Now, I am aware that there is more and more literature on neuropathy in celiac patients. Also that the neuropathy does not always disappear when affected people go on a gluten-free diet. However, I find it a little strange that all of these neurological sympoms started after I had been gluten-free for quite a few years. Interesting stuff ...

Maybe someone has an opinion or recommendation they'd like to share ...

Best wishes to everyone!

ratz

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