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Celiac And Neuropathy

wakefield

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wakefield Apprentice
wakefield
Posted

I am wondering if anyone has neuropathy in their toes. 8 weeks into celiac disease and I am experiencing tingling, squishy feeling in my left 5,4,3 toes. Some ache up my leg as well. I had experienced it a couple times in the past couple of weeks but yesterday I suffered with it all day and I have it this am. Kind of a numbness but feeling like squishy quicksand. If anyone has an idea of what if anything I can do please let me know.

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ShayFL Enthusiast
ShayFL
Posted

I have it in my hands and feet and sometimes it moves up my to my knees and I get sensations in my face. 3 1/2 mo gluten-free and still waiting....sometimes it seems better.

Lisa Mentor
Lisa
Posted

If you have not already, I would suggest a full metabolic blood work-up. It will show if you have any mineral or vitamins deficiencies.

I don't know what "squshy quick sand" feels like, but you may try some sub-lingual (melts under the tongue) B-12. Many time early Celiacs can be low in B-12 and Folic Acid. A good general daily supplement will also be helpful.

The digestive symptoms seem to be the first to clear up once going gluten free. The neurological issues do take more time.

Hope you feel better soon and get out of the sand. ;)

mysisis Newbie
mysisis
Posted

ok, i may have some input here. maybe it will help, maybe it won't; of course it's different for everyone. absolutely the neuropathy symptoms take longer to go away. I went for years and years without being diagnosed and a common complate of mine was the squishy quicksand feel, then it turned to cold feet, then it turned to pins & needles, then spikey frostbite pains. of course nobody ever thought my feet could have anything to do with digestion, and they told me to put on socks. I had bloodwork, AND neuro workups, aND poke my feet with needles, and eventually they told me I had arthritis in my back causing limited bloodflow to my feet. yeah.. uh-huh. No, i don't want back surgery thank you very much. Then I was diagnosed FINALLY with celiacs. and it was decided by a celiacs Dr. that I had the neuropathy as a result of the long standing undiagnosed celiacs. So he began treating me for RENAULDS (which is an actuall ailment and has a treatment). There is a pill that I take that increases the blood flow to my feet and has help speed the healing. I do not take it every day; because I noticed improvement soon after I started the treatment. If my feet start bothering me, I take the pill and about 45 minutes later, htey feel, well, not squishy, not spikey, and like... feet. Now, my case is probably more extreme than that your, because I went years un-diagnosed, and had gotten to where I was having trouble walking. What I'm trying to say though is that it may be a trickle down symtom from other event going on in your body, since gluten effect all our workings. It will likely fade quicker after your your digestive tract heals and you're able to absorb the right nutrients easier.

ShayFL Enthusiast
ShayFL
Posted

Ive always called mine "sinky floaty" sensations. I get he pins and needles. Every once and awhile an icy hot pain. And sometimes my hands or feet get soooo cold even in the Summer time!! But they never look blue. I am hoping that it will continue to get better with gluten-free.

MELINE Enthusiast
MELINE
Posted

I''ve been gluten-free for 10 months and now I have that tingling only if I get glutened. It is only in the toes. I was really worried but doc said it is usual, especially if you also have nightmares when glutened. Just be patient

Meline

wakefield Apprentice
wakefield
Posted
  • Author

Thanks for all your suggestions. My 2 parents were in the hospital for 6 weeks and are now in long term care. 3 days from now they are moving to assisted living and I have to sell their apt over one hour away etc so I am truly stressed out. I was diagnosed in the middle of this whole thing so I am truly greatful to all of you for your help. The "squishy" toes really scared me and I hope it is not permanent as it is really unpleasant. I had a complete blood count 8 weeks ago and the doctor tells me my levels are fine but I have been reading about low B12 and toe trouble. Having known diabetes who can not feel their feet at all concerns me. I do not understand how malabsorption would cause this and it is only in my left 3 toes so far. I was having night time leg/toe cramps immediately when diagnosed and the dr told me to drink quine/tonic water at lunch and dinner and it does stop the cramps!! I thought symptoms would stop once I was on the diet. I did not think new ones would start up.

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sparkles Contributor
sparkles
Posted

I have permanent neurological damage from gluten. I take B12 shots and that does help but the neuropathy in my legs and feet is still there. Some days it is worse than others but it is better with the B12 shots. Good luck.....

darlindeb25 Collaborator
darlindeb25
Posted
I do not understand how malabsorption would cause this and it is only in my left 3 toes so far.

Malabsortion can cause so many problems. When you do not absorb vitamins and minerals properly, or at all, your nerves starve, and slowly start to die. Going gluten free sometimes repairs all damages to nerves, sometimes not. I too, am one of the people who did not heal. Although, going gluten free has tremondously slowed the progression of my neuropathy. With any luck, maybe mine will not get worse. Mine started as carpal tunnel, 2 yrs before I went gluten free. Then, about 1 year after going gluten free, my toes would all go numb or burn terribly. When I asked the doctor about it, he said it is the same nerve as my hands, and not to worry. Gotta love some of those less than perfect doctor explanations!!! <_< A few years later, I got this swelled area between my first 2 toes, that went half way to my ankle...that stayed with me for a long time, it's gone now, I don't even know when it went away. I used to get this cold spot on my right leg, was the size of a softball, and it would be freezing cold...I often looked for an open window, then realized it was a nerve. I now get these shocks, usually in my left leg, sometimes they are just tiny little jabs, other times they are stronger, and sometimes, they nearly bring tears to my eyes. It's all small fiber neuropathy, probably induced by vitamin and mineral deficiency.

I started out 3 yrs ago taking 1000mcg of B12. I was taking cynacobalamin then, which is not the proper B12, I didn't know. Then I switched to methylcobalamin, which is the best B12. I now take 3000mcg 3 days a week...I was taking it daily for over 2 yrs, and just cut back a little, thinking my level should be good now. Doctors do not agree on B12. Some say it's a waste of money and it only creates rich urine. Some say the shots are the best, some say it doesn't matter. My neuro recently told me there is a nasal spray B12 now that is very good. My PCP told me he isn't sure how much he believes in B12 supplementation, but he has many patients that swear by it, so maybe there is something to it. It's an individual choice. I find if I go without my B12 for even 1 week, I can tell a big difference.

If you have a B12 level taken, and the doctor says it is well within the limits, make sure you find out what your level is. The normal range for B12 is set way too low, especially if you have neuropathy. A doctor will tell you your level is fine at 200, and it isn't...that's way too low. The first time I had my B12 level checked, I had been taking 1000mcg daily for at least 10 months and my level came back at 1237 (ref range being 200-1100). I just had bloodwork done a few weeks ago, and now, I take 3000mcg and my level is 1013. I am still baffled at how my level can be down! :(

You can wait for a bit and see if this all improves with a gluten free diet, or you could make an appointment with a neurologist, and try to find out what's going on. The early stages are the best time to get started on repairing the damages.

overthemoon Newbie
overthemoon
Posted

I've just been diagnosed with celiac after years of having this diease and now Ii' so glad to have found this forum. I also have a spongey feeling in my left big toe only. I cou;dn't imagine what it was , now I am pretty sure it's neuropathy. Thank you all.

JulesNZN Newbie
JulesNZN
Posted
Thanks for all your suggestions. My 2 parents were in the hospital for 6 weeks and are now in long term care. 3 days from now they are moving to assisted living and I have to sell their apt over one hour away etc so I am truly stressed out. I was diagnosed in the middle of this whole thing so I am truly greatful to all of you for your help. The "squishy" toes really scared me and I hope it is not permanent as it is really unpleasant. I had a complete blood count 8 weeks ago and the doctor tells me my levels are fine but I have been reading about low B12 and toe trouble. Having known diabetes who can not feel their feet at all concerns me. I do not understand how malabsorption would cause this and it is only in my left 3 toes so far. I was having night time leg/toe cramps immediately when diagnosed and the dr told me to drink quine/tonic water at lunch and dinner and it does stop the cramps!! I thought symptoms would stop once I was on the diet. I did not think new ones would start up.

I had the same problem and it cleared up with Quinine Tonic Water but that is just a quick fix, its usually a potassium deficiency, check into potassium rich foods such as bananas, spinach etc. to keep it from returning.

also neuropathy can be anywhere, its in my stomach and has caused gastric paresis and is permanent and degenerative. Get treatment from a qualified expert for any neuropathy as it does not clear up on its own! Speaking from experience the sooner you get qualified help the better off you are.

tmb Newbie
tmb
Posted

I am not sure if some of my reactions can be considered neuropathic. I have recently suffered DH visibly, for perhaps 10 years it was no visible, just that I had a sensitivedry skin and scalp. I also have cold water urticaria, which is a hives reaction from cold and cold water. Neither of these appear to be neuropathic, but I also suffer from the cold generally. When others are wearing one layer, I will be wearing 3. If I am exposed to cold environments, I will get sick like flu or cold virus. I also get cold extremities. I have only been gluten free for 3 weeks (with a couple of accidents thrown in the middle), so I am expecting to see some changes in my reaction to cold water, and my DH patches of skin are alreay showing some improvement. Do any of these appear neuropathic linked. I have read about hives reactions to wheat but I understood these to be directly linked to wheat/gluten ingestion, mine appear to to become an underlying condition with an unrelated trigger.

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