Whole body hypoesthesia

[NataLee]

Recently I have been diagnosed with hypoesthesia (numbness, loss of sensation) in my whole body, from head to toe. I basically don't feel any pain, superficial or internal. Doctors are stumped, my brain MR is completely normal, they say they haven't seen anything like that.
Does anyone with celiac have this issue, or is it just peripheral for you, hands and feet?

 

 

[Wheatwacked]

Welcome to this forum @NataLee.  Sorry to hear your problem, it can be very frustrating to hear doctors say "we don't know, worst one ever"!

Have you had any testing for Celiac Disease done? Did this happen suddenly? Are you on medication for something that could cause this as a side effect? Other symptoms?

Could your symptom be caused by Celiac Disease? Absolutely. Celiac Disease has lots of neurological symptoms, most common is peripheral neuropathy, but not limited to. 

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Symptoms of neuropathy can include decreased or loss of feeling, difficulty using arms, hands, legs and feet, tingling, numbness, burning and pain in any area of the body.   What are gluten related neurological symptoms?

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[Scott Adams]

I've not heard of this specific symptom being related to celiac disease, but CD can attack the brain and nervous system in some people. You didn't mention if you have celiac disease, are on a 100% gluten-free diet, etc., but please let us know.

[knitty kitty]

@NataLee,

Have you been checked for B12 deficiency or anemia? 

[NataLee]

Yes, I am celiac, I've been on a gluten-free diet for 3 years, B12 is normal, I am not anemic.

This has happened subtly, since summer of 2020, I think, but I am not sure, could have been earlier.

I don't take any medication.

 

[Scott Adams]

If you've been 100% gluten-free for those 3 years, it seems very unlikely that you would be suffering from gluten ataxia. In fact, it would be more likely that you had these symptoms while eating gluten, and then they would have gone away or improved after going gluten-free. 

I'd only recommend that you re-check everything in your diet just to be sure you don't have any hidden gluten getting in. Do you eat at restaurants or eat oats? These are common sources of contamination, and about 9% of celiacs react to oats, even gluten-free ones.

If you are still sure that your diet has been gluten-free, then it would make sense for you to continue working with your doctors to see if there could be some other thing going on, perhaps another autoimmune issue, but also pay attention to other possible food intolerance issues, and you may want to consider trying this diet for a while to see if it helps:

 

[knitty kitty]

You could try taking a B Complex supplement.  You can have symptoms of vitamin deficiencies before the deficiency shows up in a blood test.  

The eight essential B vitamins are water soluble.  If your body doesn't need them, they are easily excreted in urine.  If you have a subclinical deficiency, taking a B Complex should help.  Several of the B vitamins are needed for nerve health, B12, Pyridoxine B6, Thiamine B1 and Niacin B3.

Make sure you get enough healthy fats, omega threes, in your diet.  The nerves have a coating made from omega threes, myelin sheath, to insulate the nerve and increase nerve transmission.  

Keep us posted on your progress.

[Kate333]

Hi Nata.  I am glad your brain MRI was normal.   

I, too, have this issue, primarily feet, but in my case, I think it's due to extreme stress/insomnia/health anxiety in my life over the past 2+ years.  I have been strictly gluten-free for past 2 years, and my latest TTG blood test was normal. I was first diagnosed in late 2019...then along came the Covid pandemic--a double whammy which emotionally felt like TWO freaking brick houses fell on me at the SAME TIME!  My initial reaction:  "OMG!  Now I have to cope with ANOTHER chronic, incurable, scary illness which requires constant hypervigilance and radical changes in my daily routine and life??...;-(."  

First, I would suggest an updated TTG blood test to make sure you haven't been regularly exposed to gluten without knowing it.   If that and your other physical tests are all normal, then I would take a closer look for any patterns to the symptoms.  For example, if they are intermittent, or constant, and how often they last.  Also, whether they are triggered or intensified by stress/lack of sleep.   Any recent disruptions in your life that may have coincided with the sudden onset of these symptoms?  Chronic, severe anxiety/depression/insomnia often manifest themselves in surprising physical ways, including neuropathy, dizziness, pain, and GI upset--all of which I struggle with.   Anxietycentre.com is a very helpful website full of detailed descriptions of symptoms and tips for reducing them.   Lastly, I would consider asking your primary doc for referral/evaluation to see if you would benefit from counseling or a low-dose anti-depressant/anxiety med.