Toddler's Nerve Pain Possibly Gluten-Related?

[ellie10]

Hello everyone,

My toddler has been having what is described in toddler speak as 'bugs' - crawling, tingling sensations in the neck, back, arms, fingers, sometimes feet. We took the child to the ER it got so bad, and all the x-rays were normal. They and the docs basically said to keep giving ibuprofen (which helps sometimes). We went to the chiropractor and he said there were 'nodules' that were a little raised on one side and we went about 4 times thereafter for treatments. These seemed to help but started again about a week later. We have purchased a new 'softer' car seat because for some reason most car seat manufacturers think babies should sit on the equivalent of a concrete block with a cloth napkin over it - we thought maybe this was causing the problem or at least aggravating things. I had an epiphany the other night, though - could these be caused by gluten intolerance (celiac)? I know I am having issues after the pregnancy that make me think my gluten problems are multiplied now, so obviously the baby could be having the same problems, right? I plan to do the stool test through Enterolab and I guess I need to get the baby tested too. Hopefully the $99 test for gluten sensitivity will be enough to know if we both need to be gluten-free. I did notice that we had pizza (I know, I caved and paid dearly for it) on Saturday night and by Sunday morning the baby was screaming in pain again. It seems I am seeing a direct connection between gluten consumption and symptoms, and didn't know if this seemed far-fetched. Is nerve pain really a problem in gluten-intolerant/celiac people, regardless of age?

Thank you!!

[GlutenFreeManna]

Hello everyone,

My toddler has been having what is described in toddler speak as 'bugs' - crawling, tingling sensations in the neck, back, arms, fingers, sometimes feet. We took the child to the ER it got so bad, and all the x-rays were normal. They and the docs basically said to keep giving ibuprofen (which helps sometimes). We went to the chiropractor and he said there were 'nodules' that were a little raised on one side and we went about 4 times thereafter for treatments. These seemed to help but started again about a week later. We have purchased a new 'softer' car seat because for some reason most car seat manufacturers think babies should sit on the equivalent of a concrete block with a cloth napkin over it - we thought maybe this was causing the problem or at least aggravating things. I had an epiphany the other night, though - could these be caused by gluten intolerance (celiac)? I know I am having issues after the pregnancy that make me think my gluten problems are multiplied now, so obviously the baby could be having the same problems, right? I plan to do the stool test through Enterolab and I guess I need to get the baby tested too. Hopefully the $99 test for gluten sensitivity will be enough to know if we both need to be gluten-free. I did notice that we had pizza (I know, I caved and paid dearly for it) on Saturday night and by Sunday morning the baby was screaming in pain again. It seems I am seeing a direct connection between gluten consumption and symptoms, and didn't know if this seemed far-fetched. Is nerve pain really a problem in gluten-intolerant/celiac people, regardless of age?

Thank you!!

Yes, that could be it. Nerve pain was one of my worst symptoms, as well as swollen joints and muscle spasms. I went through all a whole battery of tests with a neurologist, plus a full spinal and brain MRI and they found nothing. You should rule out other things as well, but going gluten free won't hinder looking for other problems. Have you talked to your PED about it or gotten a referral to a neurologist? You want to make sure he doesn't have anything more serious. Try the gluten free diet once you have your testing done--don't even wait for the results to go gluten free. Keep a daily log of what you and your toddler eat for a few weeks and whether he complains of any "bugs".

[Skylark]

Yes, that could be it. Nerve pain was one of my worst symptoms, as well as swollen joints and muscle spasms. I went through all a whole battery of tests with a neurologist, plus a full spinal and brain MRI and they found nothing. You should rule out other things as well, but going gluten free won't hinder looking for other problems. Have you talked to your PED about it or gotten a referral to a neurologist? You want to make sure he doesn't have anything more serious. Try the gluten free diet once you have your testing done--don't even wait for the results to go gluten free. Keep a daily log of what you and your toddler eat for a few weeks and whether he complains of any "bugs".

This is really good advice. You do need to be sure there isn't anything else going on. There are definitely gluten-related nerve problems, including ataxia (a coordination problem), and peripheral neuropathy like you're describing. There are no tests for them, other than simple anti-gliadin IgA. Kids often don't show results on tests though.

I'm not a big fan of Enterolab because they don't provide any information on the sensitivity and specificity of their tests. The fecal anti-gliadin IgA is particularly weak as scientists have demonstrated that it can be present in people who tolerate wheat fine and completely absent in celiacs, just like serum anti-gliadin IgA. All a positive result really means is that you need to try the diet. If you're planning on trying it anyway, you may as well save the money.

[ravenwoodglass]

This is really good advice. You do need to be sure there isn't anything else going on. There are definitely gluten-related nerve problems, including ataxia (a coordination problem), and peripheral neuropathy like you're describing. There are no tests for them, other than simple anti-gliadin IgA. Kids often don't show results on tests though.

I'm not a big fan of Enterolab because they don't provide any information on the sensitivity and specificity of their tests. The fecal anti-gliadin IgA is particularly weak as scientists have demonstrated that it can be present in people who tolerate wheat fine and completely absent in celiacs, just like serum anti-gliadin IgA. All a positive result really means is that you need to try the diet. If you're planning on trying it anyway, you may as well save the money.

There actually is a test for gluten ataxia but most neuros either aren't aware of it or they don't know what the results mean. Mine was clueless and delayed my diagnosis of ataxia for many years.

Neurological antibody attack can show up on an MRI. What they find is called UBO's or unidentified bright objects. I have multiple lesions and they were the reason the neuro thought I had MS. They are lesions similar to the lesions seen in MS but are not on the mylin (sp?) sheath. They are diagnostic of antibodies that are attacking the brain. In some countries they are used to diagnose children with gluten related nervous system issues.

I found out about them when my neuro issues surprisingly resolved and I started researching the connection between celiac and the brain. I lost my links but I think, if memory serves me that Lancet may have an article or two about it.