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Toes Burn At Night


porkchop60c

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porkchop60c Apprentice

Every once in a while I get woken up by a feeling of burning in my right toes. It only lasts for 30-60 minutes. I thought maybe it is from eating a food that I may be sensitive to but not sure why I get that. Does anyone get this and could it be from getting some gluten by accident?


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cavernio Enthusiast

I have what I and doctors have assumed (never been tested) to be peripheral neuropathy. I have no reason to believe that's not it, plus I took some medication that's supposed to help nerve pain, and it did help a lot. B vitamin deficiency or overdose can cause it, and I figured that's why I have it. However, if that's the case, then I'd expect it to have gotten better, but it hasn't. It was better for a little bit, but then got as bad as it was when I found out I had celiac disease.

Other things cause peripheral neuropathy too, like diabetes or (I think) any other problem that makes your blood thick.

Usually I get tingling, not really burning, that's pretty much constant. But then when it's bad I'll get almost shooting/stabbing that comes and goes in, the vast majority of the time, spurts that last less than a minute. (Thankfully)

I think it might be caused by gluten ingestion but it's too hard to say, especially since once you get nerve damage, there's no saying it will ever get better. Nerves aren't like the rest of our body that seems to automatically heal itself once damged. I may be getting CC from eating at relatives homes or simply eating too many products that are labelled gluten free but in fact have trace amounts of gluten...I'm still eating a ton of food.

You may also simply be experiencing some sort of physical nerve pinching. You may notice when you wake up and the burning's there, that you tend to be sleeping one way but other mornings when it doesn't burn, you're sleeping differently. Carpal tunnel is far from the only place where physical pressure causes nerve damage; I've got issues in both ankles, my elbows, and my shoulders. My husband, if he sleeps on his back, can get burning in his thigh from a pressure point on his back, despite no other nerve problems. If I'm not careful how I sleep, I'll wake up multiple times at night with extremities totally numb.

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    • Samanthaeileen1
      thank you RMJ! That is very helpful advice. Good to know we aren’t crazy if we don’t do the endoscopy. We are going to try the gluten free and see how symptoms and levels improve.    thank you Wheatwacked (love the username lol) that is also reassuring. Thankfully she has an amazing and experienced pediatrician. And yesss I forgot to mention the poop! She has the weirdest poop issues.    How long did it take y'all to start seeing improvement in symptoms? 
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      So her tissue transglutaminase antibody is almost 4x the upper end of the normal range - likely a real result. The other things you can do besides an endoscopy would be: 1.  Genetic testing.  Unfortunately a large proportion of the population has genes permissive for celiac disease, but only a small proportion of those with the genes have it. With family history it is likely she has the genes. 2.  Try a gluten free diet and see if the symptoms go away AND the antibody levels return to normal. (This is what I would do). Endoscopies aren’t always accurate in patients as young as your daughter. Unfortunately, without an endoscopy, some doctor later in her life may question whether she really has celiac disease or not, and you’ll need to be a fierce mama bear to defend the diagnosis! Be sure you have a good written record of her current pediatrician’s diagnosis. Doing a gluten challenge for an endoscopy later in life could cause a very uncomfortable level of symptoms.   Having yourself, your husband and your son tested would be a great idea.  
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