Strange Crawling Sensation On Back

[ragtag]

Hey everyone,

 

I'm so thankful to have the support of this community and all the resources and help it brings. I was diagnosed with celiac disease back in the beginning of May. I've been strictly gluten free ever since and a follow up test on my TTG levels revealed that they are negative, so I know I'm doing well in adhering to the diet and avoiding cross contamination.

I've had to be patient with the resolution of a number of my symptoms (basically the only thing that's gone pretty much back to normal is my digestion) - hair loss, joint pain, vertigo. My doctor doesn't seem to think these issues are related to celiac but I find that hard to believe. One issue that I've been experiencing isn't a huge problem for me but very annoying and distracting when it happens. I have this strange sensation across a small area on one side of my back. It feels like my skin is crawling, or like something is touching me very lightly. I've read a little about neuropathy and have experienced it mildly in different areas (toes, tops of hands), but I wasn't sure if it's possible for celiac to cause nerve issues that would affect an area like the back. My B12 and vitamin D levels are still somewhat low, but every other test comes back normal (my thyroid is functioning normally and thyroid antibodies are negative).

Has anyone else experienced this, or are any of you familiar with this? Any help would be awesome!

[BelleVie]

Weirdly enough, I was experiencing it just as I saw your post! I know what you're talking about, but I don't know what causes it. For me, it's not painful, just weird and slightly annoying. It usually happens when I am sitting down at the computer or hunched over something, so I wonder if it has something to do with pinched nerves or cutting off blood flow from bad posture. Or maybe it's gluten. Not sure. Have you tried doing some stretches to get the blood flowing? 

[1desperateladysaved]

I have a creepy crawly back sensation and it feels really good to me. It feels like the feeling one gets after a message.  I haven't yet been able to explain it to a doctor and get an explanation.  I do have nerve issues.  I read about runner's high and wondered if that could be what I am experiencing.  I have never had runner's high as running always devastated me, so I guess I do not know.

 

Are your vitamin B levels good?  Dr. Osborne told me that you could have numbness or hypo-sensitivity if you are low in Vitamin B.

[shadowicewolf]

Do you have any nerve damage in the area that has healed? I get these weird feelings sometimes in the area where my gallbladder was removed. Doesn't hurt or anything, but its very weird (twitches and whatnot).

[elissarachel]

I've had all of those symptoms.  Turns out I had undiagnosed lyme disease.

 

Seek out a lyme literate MD (LLMD).  As with the tests for Celiacs, lyme tests are not very accurate on their own.  You have to look at testing, history, etc...

 

[ragtag]

An update to this, and looking for insight from people who may have dealt with something similar.

I went to a neurologist shortly after writing this post. She claimed that the weird skin sensations were paresthesias caused solely by celiac. Being that these sensations began after my diagnosis and even after my TTG antibodies normalized, I still find this hard to believe. She also dismissed my dizziness when standing as anything significant and claimed it must be due to dehydration (nevermind the fact that no evidence of dehydration has ever been found on bloodwork). She gave me a Rx for nortriptyline for the paresthesias and referred me to a sleep specialist claiming that the brain fog could be from undiagnosed narcolepsy or chronic fatigue. In short, she found nothing wrong in the very brief neuro exam (pushing and pulling on limbs, pricking with a pin, repeating words, taking 2 steps, etc) and didn't do any imaging.

Sleep doctor basically asked a million questions and then said she would not do a sleep study unless I get 9+ hours of sleep per night for a solid month, which is not going to happen in a million years. It is worth noting the fact that prior to the last few years, I existed as a healthy adult getting about 7hrs per night, and when I get 8+ consistently, I find it harder and harder to actually fall asleep. Although I hardly feel energetic, I wouldn't say that debilitating fatigue is what I am dealing with.

Both of these visits occurred in fall/early winter. Over the course of the winter I have been feeling increasingly worse, and most disturbingly more brain fogged and out of it than ever. I have also developed strange rashes and get hives/itchiness anywhere from head to toe on a daily basis, my skin is typically pretty reactive and irritated.

Last week I went back to my primary care doctor completely at the end of my rope. I feel so out of it that it is affecting my work, concentration, and personal life. Can't concentrate on conversations, can't read books (eyes just move over the words and nothing is retained), routinely mess up when writing by hand (words/letters out of order)... all very frustrating and scary. Every time I try to explain this to a doctor, I of course get emotional and this is misinterpreted as simple depression (the same thing happened a few years ago when in the span of a year, I lost half my hair, was nodding off behind the wheel, had swollen joints, rashes, low grade fever, high white blood cells, etc. Nothing meaningful was every pursued and instead I was put on huge doses of antidepressants until the symptoms gradually improved on their own, but I don't feel I've been normal since). 
Doctor now wants me to go on antianxiety medication and has referred me to a rheumatologist. Paresthesias persist, as well as dizziness when standing, flashing/streaks of light in my peripheral vision, itchiness all over, broken blood vessels on feet and legs (basically I scratch an itch and it is an instant bruise), twitching/tingling in face, and the brain fog which is worst of all. Each day there are periods of time where I feel like I am often not even occupying my body... that is how out of it I feel.

Doctor ran a ton of blood work (ANA, CRP, sed rate, CBC) all of which she claims is normal. I am still vitamin D deficient even though I've been supplementing for 4 years. B12 is at 639, so not deficient whatsoever. She says that celiac could still be to blame for these symptoms, but I am not encouraged by the fact that the brain fog/neuro symptoms appeared after my antibodies normalized, and are only worsening. I have absolutely no clue how I could be exposed to gluten (I don't keep gluten at home, don't eat out, only eat certified gluten-free processed foods and even limit those!) and my negative blood tests also indicate that this is not the case.

Do any of you have any experiences that can shed some light on this? My rheumatologist appt is not for another month, and I honestly do not have any hope that they will have any more insight than the other 3 doctors I have seen. But I have a very hard time accepting that this is normal and that I have to live with feeling this way forever.

[answerseeker]

Can you do a little test? Take your heart rate lying down, 2 min after sitting upright, then 5 min while standing still.

If you have an iPhone there is a free app called heart rate which will allow you to do this very easily.

I have just been diagnosed with dystautonomia subtype POTS and I have many of your symptoms. Often I will freak out because I think a spider is crawling across my feet, my hands and fingertips tingle, I'm dizzy and almost faint while standing, and a host of other problems.

If your heart rate doesn't increase over 30bmp while standing or get to 120 or higher you don't have this but it rule out a piece of the puzzle for you. Mine will often be over 130 while standing within the first 5 min.

[answerseeker]

Are the rashes like bright pink/red like someone just took a hunk of your skin and pinched it? That's what I get on my legs and stomach and it's due to blood pooling in my extremities instead of reaching my heart, lungs, and brain.

[anti-soprano]

Sweetheart,

Go to this thread and read immediately:

https://www.celiac.com/forums/topic/105835-mast-cell-activation-syndrome-mcas/

 

Here is a full list of symptoms:

http://www.mastocytosis.ca/signs.htm

 

It can explain:

itchiness

brain fog (impaired cognitive function)

rashes

hair loss

joint pain

low iron

low B12

depression

anxiety

dizziness

tingling face/numbness

low energy

 

Is that everything you listed?  It is not celiac, but many of us celiacs seem to be afflicted with this after going gluten free.

Best of luck to you.  This sucks- trust me, I know!

 

Shellie

[anti-soprano]

Also helpful in general:

http://thelowhistaminechef.com/histamine-intolerance-symptoms/

[Nikki2777]

I can't speak to the other symptoms, but I have had the crawling sensation and I believe it was caused by two things, happening in unison and therefore making me think I was going nuts:  Celiac - it comes back when I get glutened and, at the same time, 'formication' (with an "m", thank you very much) from perimenopause, which is an uncommon but real peri symptom.

 

Good luck.  I hope you find answers.

[NoGlutenCooties]

My mother gets itchy, crawly sensations on her back when she eats oats.  Even certified gluten-free oats.  Neither her or my uncle can tolerate oats (both have Celiac), so I haven't touched them since going gluten free.

[ragtag]

Wow, thanks so much for all the responses! 

 

Can you do a little test? Take your heart rate lying down, 2 min after sitting upright, then 5 min while standing still.

If you have an iPhone there is a free app called heart rate which will allow you to do this very easily.

I have just been diagnosed with dystautonomia subtype POTS and I have many of your symptoms. Often I will freak out because I think a spider is crawling across my feet, my hands and fingertips tingle, I'm dizzy and almost faint while standing, and a host of other problems.

If your heart rate doesn't increase over 30bmp while standing or get to 120 or higher you don't have this but it rule out a piece of the puzzle for you. Mine will often be over 130 while standing within the first 5 min.

 

Thanks for this suggestion! I've thought that there's a possibility of something being 'off' in terms of my blood pressure regulation. Sometimes it's so weird... if I stand up and sit back down in the span of a minute, I see stars for maybe 15 seconds... they almost look like fireflies. There is nothing wrong with my eyes that can explain this (I also get starbursts and sensitivity to light which the eye doctor blames on big pupils!)... and combined with the dizziness it's very distracting on a daily basis. My blood pressure is always low to normal. I will do this test soon and maybe it will shed some light or at least rule something like this out!

 

Sweetheart,

Go to this thread and read immediately:

https://www.celiac.com/forums/topic/105835-mast-cell-activation-syndrome-mcas/

 

Here is a full list of symptoms:

http://www.mastocytosis.ca/signs.htm

 

It can explain:

itchiness

brain fog (impaired cognitive function)

rashes

hair loss

joint pain

low iron

low B12

depression

anxiety

dizziness

tingling face/numbness

low energy

 

Is that everything you listed?  It is not celiac, but many of us celiacs seem to be afflicted with this after going gluten free.

Best of luck to you.  This sucks- trust me, I know!

 

Shellie

 

Wow, I've never heard of this but I have had those symptoms for a long time, and lately in addition my skin has been very irritated and itchy, fairly consistently. It seems to have gotten worse after my last allergy shot about a month ago, and normally I would only experience something like that for a few days at the injection site. I'm going to contact my allergist and ask if there is any testing they can do, because I don't want to continue with the immunotherapy if it is making a problem like this worse! I've also decided that I need to keep a food journal to see if there are patterns to the itchiness and brain fog in particular, depending on what I eat.

 

I can't speak to the other symptoms, but I have had the crawling sensation and I believe it was caused by two things, happening in unison and therefore making me think I was going nuts:  Celiac - it comes back when I get glutened and, at the same time, 'formication' (with an "m", thank you very much) from perimenopause, which is an uncommon but real peri symptom.

 

Good luck.  I hope you find answers.

 

I'm sure it is possible that I've been glutened once or twice since going gluten-free, but it's tough to know because I generally don't have any gastro symptoms that would point to any food in particular, and I haven't really changed my diet since my antibody test came back negative. I'm 32 and still having very regular periods so I don't think it's anything hormonal. I could certainly be wrong though! 

 

My mother gets itchy, crawly sensations on her back when she eats oats.  Even certified gluten-free oats.  Neither her or my uncle can tolerate oats (both have Celiac), so I haven't touched them since going gluten free.

 

I've been wary of oats because of the cross-contamination during processing issue so I definitely avoid them as well. 

 

I'm going to do some more research and start to carefully document what I am eating. Hopefully this will lead me in some direction in terms of talking to the rheumatologist next month. Right now I feel very frustrated and aimless.

 

Please feel free to post to this thread again if something else occurs to any you. Thanks again... I do appreciate it!

[answerseeker]

my blood pressuse was 95/56 yesterday and I was seeing spots and feeling very dizzy and super tired. That is my sign to get some salt in me immediately!

[ragtag]

Other weird symptoms... I often see vision trails. They aren't very distracting and only last an instant, but this seems like a strange one to me.  I also see very fast moving tiny spots... different from floaters in that they move (shoot through my vision) while my eyes are still. I told this to the eye doctor and she looked at me like I'm insane and said my eyes are perfectly healthy, which I do believe... so I think this would have to be something neurological. But of course I can't find anything linking this sort of thing to celiac disease.

 

I had my blood pressure taken yesterday and it was normal, not low, which in light of symptoms like these concerns me even more. 

[NoGlutenCooties]

I used to get those very same eye issues right before I got a migraine.  For me it was related to low blood sugar.  Have you had your blood sugar tested?  It can be low or high (approaching diabetes) - either can effect your eyesight. 

[cristiana]

I have had pain and irritation recently and a weird feeling for a couple of months now.   It has affected half my back and half my chest.   Like you, same side, in my case, just the left.   I have been told by one doctor the sensation is probably caused by having had shingles without the rash, i.e. nerve damage – look up Dermatomes, it is interesting.   The irritation has been so hard to bear at times, so I have tried to figure out what I have done running up to a bad day or what I have done running up to a day when I don’t feel so bad.   I have found that soya (even up to 24 hours before), too much typing and driving, housework (!), wearing anything tight across the back and chest and heat have really aggravated things.    So today avoided all this stuff and what a difference.   Just mentioning this in case you find any of these tips help.

[Bunty]

On 8/29/2013 at 6:20 AM, BelleVie said:

Weirdly enough, I was experiencing it just as I saw your post! I know what you're talking about, but I don't know what causes it. For me, it's not painful, just weird and slightly annoying. It usually happens when I am sitting down at the computer or hunched over something, so I wonder if it has something to do with pinched nerves or cutting off blood flow from bad posture. Or maybe it's gluten. Not sure. Have you tried doing some stretches to get the blood flowing? 

Exactly same feeling is experienced by me, specially when I sit down at the computer.

Have you got your problem diagnosed? I will be very thankful if you reply.

[SLLRunner]

Welcome, Bunty!

This conversation is pretty old, and the person you quoted has not been here since 2014 so she/might not see this to answer.  I have not experienced this particular issue. 

[artistdall]

On 3/24/2014 at 5:00 PM, ragtag said:

An update to this, and looking for insight from people who may have dealt with something similar.

I went to a neurologist shortly after writing this post. She claimed that the weird skin sensations were paresthesias caused solely by celiac. Being that these sensations began after my diagnosis and even after my TTG antibodies normalized, I still find this hard to believe. She also dismissed my dizziness when standing as anything significant and claimed it must be due to dehydration (nevermind the fact that no evidence of dehydration has ever been found on bloodwork). She gave me a Rx for nortriptyline for the paresthesias and referred me to a sleep specialist claiming that the brain fog could be from undiagnosed narcolepsy or chronic fatigue. In short, she found nothing wrong in the very brief neuro exam (pushing and pulling on limbs, pricking with a pin, repeating words, taking 2 steps, etc) and didn't do any imaging.

Sleep doctor basically asked a million questions and then said she would not do a sleep study unless I get 9+ hours of sleep per night for a solid month, which is not going to happen in a million years. It is worth noting the fact that prior to the last few years, I existed as a healthy adult getting about 7hrs per night, and when I get 8+ consistently, I find it harder and harder to actually fall asleep. Although I hardly feel energetic, I wouldn't say that debilitating fatigue is what I am dealing with.

Both of these visits occurred in fall/early winter. Over the course of the winter I have been feeling increasingly worse, and most disturbingly more brain fogged and out of it than ever. I have also developed strange rashes and get hives/itchiness anywhere from head to toe on a daily basis, my skin is typically pretty reactive and irritated.

Last week I went back to my primary care doctor completely at the end of my rope. I feel so out of it that it is affecting my work, concentration, and personal life. Can't concentrate on conversations, can't read books (eyes just move over the words and nothing is retained), routinely mess up when writing by hand (words/letters out of order)... all very frustrating and scary. Every time I try to explain this to a doctor, I of course get emotional and this is misinterpreted as simple depression (the same thing happened a few years ago when in the span of a year, I lost half my hair, was nodding off behind the wheel, had swollen joints, rashes, low grade fever, high white blood cells, etc. Nothing meaningful was every pursued and instead I was put on huge doses of antidepressants until the symptoms gradually improved on their own, but I don't feel I've been normal since). 
Doctor now wants me to go on antianxiety medication and has referred me to a rheumatologist. Paresthesias persist, as well as dizziness when standing, flashing/streaks of light in my peripheral vision, itchiness all over, broken blood vessels on feet and legs (basically I scratch an itch and it is an instant bruise), twitching/tingling in face, and the brain fog which is worst of all. Each day there are periods of time where I feel like I am often not even occupying my body... that is how out of it I feel.

Doctor ran a ton of blood work (ANA, CRP, sed rate, CBC) all of which she claims is normal. I am still vitamin D deficient even though I've been supplementing for 4 years. B12 is at 639, so not deficient whatsoever. She says that celiac could still be to blame for these symptoms, but I am not encouraged by the fact that the brain fog/neuro symptoms appeared after my antibodies normalized, and are only worsening. I have absolutely no clue how I could be exposed to gluten (I don't keep gluten at home, don't eat out, only eat certified gluten-free processed foods and even limit those!) and my negative blood tests also indicate that this is not the case.

Do any of you have any experiences that can shed some light on this? My rheumatologist appt is not for another month, and I honestly do not have any hope that they will have any more insight than the other 3 doctors I have seen. But I have a very hard time accepting that this is normal and that I have to live with feeling this way forever.

I had all this and finally found my liver test were off, the itching was from to much billirubin...I got my Dr after much research to prescribe.. cholestyramine 4g dose powder 2x day. It binds the billirubin to got out of system. I also started another laxative Lactulose which gets the Amonia out of system...causing my brain fog etc.

I am waiting on my Gluten test by also...for new rash.

God Bless