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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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    • Scott Adams
      Based on those results alone, it’s not possible to say you have celiac disease. The test that is usually most specific for celiac, tTG-IgA, is negative in your results, and the endomysial antibody (EMA) is also negative, which generally argues against active celiac disease. However, your deamidated gliadin IgA is elevated, and your total IgA level is also high, which can sometimes affect how the other antibody tests behave. Another important factor is that you were reducing gluten before the test, which can lower antibody levels and make the results less reliable. Because of that, many doctors recommend a gluten challenge (eating gluten regularly for several weeks) before repeating blood tests or considering an endoscopy if symptoms and labs raise concern. It would be best to review these results with a gastroenterologist, who can interpret them in context and decide whether further testing is needed.
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      Since you compromised the validity of the antibody testing by experimenting with gluten withdrawal ahead of the testing, you are faced with two options: 1. Reintroduce significant amounts of gluten into your diet for a period of weeks, i.e., undertake a "gluten challenge". The most recent guidelines are the daily consumption of at least 10g of gluten (about the amount found in 4-6 slices of wheat-based bread) for at least two weeks leading up to the day of testing. Note: I would certainly give it more than two weeks to be sure. 2. Be willing to live with the ambiguity of not knowing whether gluten causes you problems because you have celiac disease or NCGS (Non Celiac Gluten Sensitivity). There is no test for NCGS. Celiac disease must first be ruled out and we have tests for it. Celiac disease has an autoimmune base. NCGS does not. GI symptoms overlap. In the early stages of celiac disease, other body systems may not be showing stress or damage so, symptomatically, it would be difficult to distinguish between celiac disease and NCGS. Both conditions require elimination of gluten from the diet for symptom relief. Some experts feel that NCGS can be a precursor to celiac disease.
    • suek54
      Hi Kayla Huge sympathies. I was diagnosed in December, after 8 months of the most awful rash, literally top to toe. Mine is a work in progress. Im on just 50mg dapsone at the moment but probably need an increased dose to properly put the lid on it. As you have been now glutened, I wondered whether it might be worth asking for a skin biopsy to finally get a proper diagnosis? Sue  
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      I had been eating reduced gluten until about 3 days before the test. I did realize that wasn’t ideal, but it was experimental to see if gluten was actually bothering me. One slip up with soy sauce and it was quite clear to me that it was, lol. 
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