Neurological Only Problems

[neurobeard]

Greetings,

I started having myoclonic muscle contractions intermittently since middle school. They seem to be somewhat related to physical stress (I can usually ward them off by taking deep breaths and relaxing), but I'm wondering if they could be one of the neurological symptoms of Celiac Disease or perhaps a similar condition. I've spent a couple of hours researching this condition, and I can't figure out how severe the other symptoms (bowel-related) have to be in order to warrant testing. I tend to run a little on the "gassy" side, and occasionally (maybe a 2-5 times per month) I have loose stools, but not full-blown diarrhea. The color seems normal. Overall, this seems normal to me, and I've never been suspicious that things weren't right down there. Is it possible that I have Celiac or another food-related complication, or do the symptoms have to be more severe?

Thanks for any advice you might offer,

Rob

[ravenwoodglass]

Yes it is possible that you have celiac. There are times when neurological issues are one of the first presentations. I had neuro issues from childhood with just what I thought were 'normal' tummy issues until I was in my late 30's. Then the gut stuff hit full force.

Have you seen a neurologist? There are sometimes things that can be found on MRI's that can be helpful in identifying celiac neuro impact. I know with impact that includes ataxia (a feeling of being off balance) something called UBO's will be present. They are bright white spots.

Some of the other things common with neuro presentation are depression, anxiety, sleep problems (too much or too little or sometimes both), OCD and ADHD behaviors, migraines- to name a few.

You should continue to eat gluten until you can have a complete celiac panel run. Bearing in mind that false negatives are not uncommon especially when the gut is not severely effected yet.

You also can go gluten free and see if things improve for you. Keep in mind that nerves take time to heal if it is gluten causing the issues. I was very far advanced neurologically when diagnosed and it took a couple of months to notice a difference.

Oh and having gas and D 2-5 times a month is not normal.

[neurobeard]

Yes it is possible that you have celiac. There are times when neurological issues are one of the first presentations. I had neuro issues from childhood with just what I thought were 'normal' tummy issues until I was in my late 30's. Then the gut stuff hit full force.

Have you seen a neurologist? There are sometimes things that can be found on MRI's that can be helpful in identifying celiac neuro impact. I know with impact that includes ataxia (a feeling of being off balance) something called UBO's will be present. They are bright white spots.

Some of the other things common with neuro presentation are depression, anxiety, sleep problems (too much or too little or sometimes both), OCD and ADHD behaviors, migraines- to name a few.

You should continue to eat gluten until you can have a complete celiac panel run. Bearing in mind that false negatives are not uncommon especially when the gut is not severely effected yet.

You also can go gluten free and see if things improve for you. Keep in mind that nerves take time to heal if it is gluten causing the issues. I was very far advanced neurologically when diagnosed and it took a couple of months to notice a difference.

Oh and having gas and D 2-5 times a month is not normal.

I recently switched primary care physicians, and when I told my new one about my problems, I mentioned the possibility of food allergies (I didn't know about Celiac until I came across it on the internet this afternoon). He was quite dismissive of the idea, and maintained that food allergies couldn't cause it. Now, I'm being referred to a neurologist. How can I get a 'complete panel run'? Do I just ask my PCP? Or is there some kind of cheaper alternative that I could do without insurance?

[ravenwoodglass]

I recently switched primary care physicians, and when I told my new one about my problems, I mentioned the possibility of food allergies (I didn't know about Celiac until I came across it on the internet this afternoon). He was quite dismissive of the idea, and maintained that food allergies couldn't cause it. Now, I'm being referred to a neurologist. How can I get a 'complete panel run'? Do I just ask my PCP? Or is there some kind of cheaper alternative that I could do without insurance?

You could ask you PCP or you could ask the neuro. Your doctor is right that a food allergy is not likely to be the cause but an intolerance could be. They are totally different animals. Where allergies are a histamine reaction intolerances are an antibody reaction. You could try calling your PCP and seeing if he will order the panel making sure he does a total IGA at the same time. Don't neglect to mention the intermittent D that you are having if you haven't mentioned it to him already. Do keep in mind that false negative in blood tests are common, especially if your villi are not yet destroyed.

[neurobeard]

You could ask you PCP or you could ask the neuro. Your doctor is right that a food allergy is not likely to be the cause but an intolerance could be. They are totally different animals. Where allergies are a histamine reaction intolerances are an antibody reaction. You could try calling your PCP and seeing if he will order the panel making sure he does a total IGA at the same time. Don't neglect to mention the intermittent D that you are having if you haven't mentioned it to him already. Do keep in mind that false negative in blood tests are common, especially if your villi are not yet destroyed.

Thanks, by the way, for your responses. You're very helpful.

Well I'm not sure that I would test positive, because other than the myoclonic contractions, I am in pretty good outward-physical health, the only exception being very slight pitting of my fingernails, which started like 5 years after I started having the myoclonic contractions. I don't think I have D, it's more like really loose stools (I've had D before, and it's much worse!). I do experience anxiety, depression, and I often have trouble concentrating, but I can't say for sure if it's more than other people have. From reading up on Celiac, it seems that if I have it, it's not very far advanced, and therefore unlikely to turn up on a blood test. I think that I might be better off doing an elimination diet. I looked one up (Open Original Shared Link) but if it can take months for neurological issues to resolve themselves, it doesn't seem like this one would really work.

I'm prepared to follow a wheat-free diet for a few months, but it would be much easier to do this with milk, eggs, and soy. I've read that epilepsy can be aggravated by eggs, so I guess I should give those up (hasn't been diagnosed as epilepsy, but maybe neurological problems are similar). But can a milk or soy intolerance cause neurological problems? I haven't been able to find anything that confirms or negates this possibility.

[ravenwoodglass]

Thanks, by the way, for your responses. You're very helpful.

Well I'm not sure that I would test positive, because other than the myoclonic contractions, I am in pretty good outward-physical health, the only exception being very slight pitting of my fingernails, which started like 5 years after I started having the myoclonic contractions. I don't think I have D, it's more like really loose stools (I've had D before, and it's much worse!). I do experience anxiety, depression, and I often have trouble concentrating, but I can't say for sure if it's more than other people have. From reading up on Celiac, it seems that if I have it, it's not very far advanced, and therefore unlikely to turn up on a blood test. I think that I might be better off doing an elimination diet. I looked one up (Open Original Shared Link) but if it can take months for neurological issues to resolve themselves, it doesn't seem like this one would really work.

I'm prepared to follow a wheat-free diet for a few months, but it would be much easier to do this with milk, eggs, and soy. I've read that epilepsy can be aggravated by eggs, so I guess I should give those up (hasn't been diagnosed as epilepsy, but maybe neurological problems are similar). But can a milk or soy intolerance cause neurological problems? I haven't been able to find anything that confirms or negates this possibility.

You might be surprised about the blood test. If your insurance might cover it you may want to go ahead. My children were not very far advanced when they were tested, they were screened because they had finally figured out I was celiac.

If you are prepared to follow a wheat free diet for a few months you might want to consider taking the step to gluten free. If your issues are a neuro presentation of celiac just being wheat free won't be enough. Something that will help your nerves heal as quickly as they can would be sublingual B12. It will aid the nerves in fireing correctly. What you may want to do is go gluten-free,CF,EF, and SF at first. After a couple months, or sooner if you have seen improvement (it took 2 weeks for me to see benefit and start adding stuff back in), add them back in one at a time, three times a day for a week. If you have not seen a recurrance of issues then you are likely okay with that substance.

[holiday16]

Not sure how much this will help you, but many of my issues were neuro related. If I have gluten I have issues with coordination, slurring words, word recall and if I accidentally consume even small amounts (like 5ppm) over several days it triggers trigeminal neuralgia and essential tremors. I have had 2 MRI's to check for MS and both were clean. Also had an EMG which also came back normal.

Was tested for celiac via bloodwork which was negative, but had a huge response to the diet. BTW, what you may consider to be normal as far as gut you may find really wasn't normal, but you live w/ it for so long you don't realize. The NP I saw kept asking me if I had gut pain and I insisted I didn't, but what happened was I was tuning it out. When I began to be more aware of it I realized if I ate wheat I had terrible pain.

In our family of 5 we have found everyone has either suspected celiac or an intolerance. When you can tell when someone has had gluten by their behavior etc. I don't care what the tests say it's an issue! Everyone had negative tests except my dh and son are genetically at high risk for celiac. Even though our sons scope was negative they recommended a gluten free trial and based on that he is diagnosed as suspected celiac.

If you try the diet be very strict. I can tell when I've had even the smallest amount of gluten as it sets off tremors. It doesn't take much to affect the neuro symptoms!

Paulette

[neurobeard]

You might be surprised about the blood test. If your insurance might cover it you may want to go ahead. My children were not very far advanced when they were tested, they were screened because they had finally figured out I was celiac.

If you are prepared to follow a wheat free diet for a few months you might want to consider taking the step to gluten free. If your issues are a neuro presentation of celiac just being wheat free won't be enough. Something that will help your nerves heal as quickly as they can would be sublingual B12. It will aid the nerves in fireing correctly. What you may want to do is go gluten-free,CF,EF, and SF at first. After a couple months, or sooner if you have seen improvement (it took 2 weeks for me to see benefit and start adding stuff back in), add them back in one at a time, three times a day for a week. If you have not seen a recurrance of issues then you are likely okay with that substance.

Well I have an appointment with a neurologist on March 5, and I've been off gluten, soy, eggs, and dairy since last week. My symptoms have let up a little, but they've done that before for no reason, so I'm not getting too excited.

Right now, my plan is to stay "clean" of these possible trouble-makers, and if I see an improvement, I can have some kind of evidence to back up my thoughts. Does this seem like a good idea? Or should I just go back to eating everything, try to reproduce my symptoms in the lab, and then ask him about the possibility of an intolerance? The reason I'm experimenting with this before getting tested is because the doctors I've met with have been really "closed off" to these things (seems like they want their cookie-cutter tests and prescriptions for everything).

[sibilate]

Not sure how much this will help you, but many of my issues were neuro related. If I have gluten I have issues with coordination, slurring words, word recall and if I accidentally consume even small amounts (like 5ppm) over several days it triggers trigeminal neuralgia and essential tremors. I have had 2 MRI's to check for MS and both were clean. Also had an EMG which also came back normal.

How is it possible for gluten to affect your Trigeminal Neuralgia? Bot my parents have had it. It is generally understood that a blood vessel begins to interfere with or touch the nerve. (Definitely the case for my mother - determined by surgery - hers was touching and every time blood pumped she had horrible pain). So how does being gluten-free help this? My mother died due to complications from surgery and pain. My father is basically in remissions, so the doctors say, but it likely that it could come back, so I am extremely curious. Both my parents were diagnosed in their 30's. Look forward to your response.

Thanks!