Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Foot Numbness


kimberleyshort

Recommended Posts

kimberleyshort Newbie

I was dx'd several years ago but I have a new symptom that might be related? Does anyone ever get any numbness or tingling in their feet? I read that some celiacs do get neuropathy.

Thanks!


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



Generic Apprentice

All the time. I have been checked for MS twice. They are now checking for rhuematoid arthritis and myositis.

Any more I don't know what to think. I know I have nerve damage other than that, who knows. Sorry I can't be more help.

-Laurie

kimberleyshort Newbie
All the time. I have been checked for MS twice. They are now checking for rhuematoid arthritis and myositis.

Any more I don't know what to think. I know I have nerve damage other than that, who knows. Sorry I can't be more help.

-Laurie

thanks! It does help to know that others have the same symptoms.

Lisa Mentor

There is a condition associated with autoimmune diseases call Raynaud's Syndrome. (not sure of the correct spelling) and it the numbing of feet, toes and finger tips. They get numb and cold and when the circulation begins again there is a burning feeling.

Many people here on the forum suffer from this. I am sure that they will contribute soon.

darlindeb25 Collaborator

Raynauds is different, I have both. Raynauds generally deals with the cold, your fingers or toes get very cold, then change colors, mine get white on the tips, then they start to burn--you must be careful to keep your feet warm enough and gloves n your hands when in the cold.....Now numbness in your feet and/or tingling, burning--that may be neuropathy. Many celiacs get this after years of being ill--generally a B12 deficiency caused by our malabsorption problems. In the beginning, mine started out in my hands and wrist--the doctor diagnosed carpal tunnel, then my toes started going numb and he told me the toes and the fingers have the same nerve running through the body. Now my feet buzz or just ache. My shoulders and neck get this pinched nerve feeling quite often. The last few days I have had this cold spot in my left knee. Just all of a sudden, I feel like there is a draft on my knee, yet the only place I feel the draft is that one spot on one knee. Checkout this: Open Original Shared Link and read about neuropathy, many new people will post their feelings and maybe you will read how you feel too. Hope this helps! Feel free to email me with more questions.

Lisa Mentor

Deb, thanks for posting....I knew a little, but not much. :)

Leann Newbie

Hello Everyone,

I'm new here. I just found out on Tuesday that my blood test was positive for Celiac disease. I have what I'd call "dulled sensations" on my right side of my body. Arm, leg, torso and even my face all have spots that I cannot feel sensations like I should. I also drag my right leg behind me sometimes, because it is hard to walk. But that comes and goes.

I have had 3 MRIs, an EMG (I think that is what it is called), tons of blood work, a muscle test, gone to two neurologists and one spinal cord specialist. All of them said that there was no explaination for my symptoms and that I was "a healthy, young woman." It was only after getting my test results that it could be linked to Celiac. I'm so happy that I'm not crazy.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



heathen Apprentice

i had one finger that would go numb for no apparent reason, but it hasn't happened since i have been gluten free. don't know that i can attribute it to full blown neuropathy, but it might be the beginning stages.

LYNN21 Newbie

Hello Leann

Just found out 3 weeks ago that my 10 year old daughter has celiac disease. She often complained of tingling in her legs before she found out she had celiac disease now she is on a gluten free diet and have not herd her complain. Hang in there and good luck.

Lynn21

Hello Everyone,

I'm new here. I just found out on Tuesday that my blood test was positive for Celiac disease. I have what I'd call "dulled sensations" on my right side of my body. Arm, leg, torso and even my face all have spots that I cannot feel sensations like I should. I also drag my right leg behind me sometimes, because it is hard to walk. But that comes and goes.

I have had 3 MRIs, an EMG (I think that is what it is called), tons of blood work, a muscle test, gone to two neurologists and one spinal cord specialist. All of them said that there was no explaination for my symptoms and that I was "a healthy, young woman." It was only after getting my test results that it could be linked to Celiac. I'm so happy that I'm not crazy.

Pegleg Newbie

I notice that the more wheat products I eat in one meal, the more my limbs tingle.

Sinenox Apprentice

Hey! I'm not sure if it's related but I got a "no way" moment out of this thread. I'm getting used to that feeling around here, though.

When my intolerance got so bad that my body wasn't fighting off infections and I was hospitalized after I had surgery to remove an abscess my body had walled off I got the strangest sensation. My right foot felt kind of numb and when I would get upset or surprised, even mentally, even at the smallest level, it would feel hot. It persisted like this for a few weeks after I was released and then slowly faded away. At the time I assumed the surgeon had hit a nerve and it was being repaired. But the phrase "Stop it, you're making my foot hot!" has persisted in my group of friends as an inside joke. Very, very occasionally I get a milder, similar sensation again. I haven't had it for months and I assume it's gone. But that's interesting. I wonder if it's related?

debmidge Rising Star

Husband got this several months after going gluten-free and still has it. It encompasses the leg too and neurologist can't find cause (diabetes ruled out).....apparently he just has to live with it.

CatandCanary Rookie
I was dx'd several years ago but I have a new symptom that might be related? Does anyone ever get any numbness or tingling in their feet? I read that some celiacs do get neuropathy.

Thanks!

It’s strange this should come up, although it might not be related to Celiac, I have had a problem with my feet.

I get a burning pain in my feet when I am not feeling well or if under stress, it was also a joke with my family and friends, because my kids would tell me when ever I spend over $5.00 for something my feet hurt. And that’s when I realized that it did happen when I was under some sort of stress. I went to the doctor and they did tests and called it unexplained pain. I don’t notice it as much being Gluten free, also if I am constipated it starts to be more noticeable.

jerseyangel Proficient

I had a lot of these things prior to diagnosis. I had an altered feeling in my left arm--somewhere between numb and asleep. Also, numbness in my face and tingling pins and needles feelings in my lower legs. I would get a burning sensation on the bottoms of my feet and in my mouth. Sometimes, my whole face would get hot, and my skin would be beet red.

A lot of this improved post gluten-free. Some of it, like the facial numbness, and occasional foot dragging I'm afraid is permanent. :(

Electra Enthusiast

Oh yah I have not been officially diagnosed yet, but I guarantee I have this disease. I have had B12 deficiancy FOREVER and have even had monthy shots that did nothing to help it. I also have had all the tests and MRI's and they all come back normal. The numbness, coldness and tingling in my lower foot and leg have gotten so bad lately that I threatened to have my leg amputated because a prosthesis would be so much easier to live with!! I know that sounds harsh but if you've ever had a full blown attack of this you would know that ANYTHING is better then that cold, numb, constant ache and pain!! I just can NOT believe I stumbled onto this disease while I was looking up my other "misdiagnosed" intestinal disease and realized that my daughter also has it!! When I stop eating for a few days (which I have done for years because I just feel better when I don't eat) then all of my symptoms disappear!! I have also been on the low carb diet before (but I always chose completely NO CARB) and I feel better on that diet then any other diet I've ever been on. Now that I know I have this disease I know exactly why I feel so good on the low carb diet!! I hear they have meds to help with the cold, numb pain in your legs and arms that comes with Celiac Disease, so I'm definitely going to be looking that up if the gluten free diet doesn't completely cure it!! Good Luck!!

Archived

This topic is now archived and is closed to further replies.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - suek54 replied to suek54's topic in Dermatitis Herpetiformis
      5

      Awaiting dermatitis herpetiformis confirmation following biopsy

    2. - trents replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      how much gluten do I need to eat before blood tests?

    3. - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      how much gluten do I need to eat before blood tests?

    4. - trents replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      how much gluten do I need to eat before blood tests?

    5. - catnapt posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      how much gluten do I need to eat before blood tests?

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,257
    • Most Online (within 30 mins)
      7,748

    KariNoMoreGluten
    Newest Member
    KariNoMoreGluten
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • suek54
      Thank you all for your advice and the dermatitis herpetiformis article. The latter made me realise I had stopped taking my antihistamine, which I will restart today. The Dapsone has cleared the rash entirely but I still get quite a bit itching, absolutely nothing to see though. I know its notoriously hard to clear and its still relatively early days for me.  The iodine issue is very interesting. I do eat quite a bit of salt because I have Addison's disease and sodium retention is an issue. I also have autoimmune hypothyroidism, not sure how a low iodine diet would play into that? Because of my Addison's I am totally steroid dependent, I take steroids 4 x daily and cannot mount any defence against inflammation. I need to increase my meds for that. Now that I know what is wrong I can do just that if Im having a bad day. Life is very sweet, just so damn complicated sometimes! Hey ho, onwards. Thank you again for your advice.  
    • trents
      So, essentially all of the nutrition in the food we eat is absorbed through the villous lining of the small bowel. This is the section of the intestinal track that is damaged by celiac disease. This villous lining is composed of billions of finger-like projections that create a huge amount of surface area for absorbing nutrients. For the celiac person, when gluten is consumed, it triggers an autoimmune reaction in this area which, of course, generates inflammation. The antibodies connected with this inflammation is what the celiac blood tests are designed to detect but this inflammation, over time, wears down the finger-like projections of the villous lining. Of course, when this proceeds for an extended period of time, greatly reduces the absorption efficiency of the villous lining and often results in many and various nutrient deficiency-related health issues. Classic examples would be osteoporosis and iron deficiency. But there are many more. Low D3 levels is a well-known celiac-caused nutritional deficiency. So is low B12. All the B vitamins in fact. Magnesium, zinc, etc.  Celiac disease can also cause liver inflammation. You mention elevated ALP levels. Elevated liver enzymes over a period of 13 years was what led to my celiac diagnosis. Within three months of going gluten free my liver enzymes normalized. I had elevated AST and ALT. The development of sensitivities to other food proteins is very common in the celiac population. Most common cross reactive foods are dairy and oats but eggs, soy and corn are also relatively common offenders. Lactose intolerance is also common in the celiac population because of damage to the SB lining.  Eggs when they are scrambled or fried give me a gut ache. But when I poach them, they do not. The steam and heat of poaching causes a hydrolysis process that alters the protein in the egg. They don't bother me in baked goods either so I assume the same process is at work. I bought a plastic poacher on Amazon to make poaching very easy. All this to say that many of the issues you describe could be caused by celiac disease. 
    • catnapt
      thank you so much for your detailed and extremely helpful reply!! I can say with absolute certainty that the less gluten containing products I've eaten over the past several years, the better I've felt.   I wasn't avoiding gluten, I was avoiding refined grains (and most processed foods) as well as anything that made me feel bad when I ate it. It's the same reason I gave up dairy and eggs- they make me feel ill.  I do have a bit of a sugar addiction lol so a lot of times I wasn't sure if it was the refined grains that I was eating - or the sugar. So from time to time I might have a cookie or something but I've learned how to make wonderful cookies and golden brownies with BEANS!! and no refined sugar - I use date paste instead. Pizza made me so ill- but I thought it was probably the cheese. I gave up pizza and haven't missed it. the one time I tried a slice I felt so bad I knew I'd never touch it again. I stopped eating wheat pasta at least 3 yrs ago- just didn't feel well after eating it. I tried chick pea pasta and a few others and discovered I like the brown rice pasta. I still don't eat a lot of pasta but it's nice for a change when I want something easy. TBH over the years I've wondered sometimes if I might be gluten intolerant but really believed it was not possible for me to have celiac disease. NOW I need to know for sure- because I'm in the middle of a long process of trying to find out why I have a high parathyroid level (NOT the thyroid- but rather the 4 glands that control the calcium balance in your body) I have had a hard time getting my vit D level up, my serum calcium has run on the low side of normal for many years... and now I am losing calcium from my bones and excreting it in my urine (some sort of renal calcium leak) Also have a high ALP since 2014. And now rapidly worsening bone density.  I still do not have a firm diagnosis. Could be secondary HPT (but secondary to what? we need to know) It could be early primary HPT. I am spilling calcium in my urine but is that caused by the high parathyroid hormone or is it the reason my PTH is high>? there are multiple feedback loops for this condition.    so I will keep eating the bread and some wheat germ that does not seem to bother me too much (it hasn't got enough gluten to use just wheat germ)    but I'm curious- if you don't have a strong reaction to a product- like me and wheat germ- does that mean it's ok to eat or is it still causing harm even if you don't have any obvious symptoms? I guess what you are saying about silent celiac makes it likely that you can have no symptoms and still have the harm... but geez! you'd think they'd come up with a way to test for this that didn't require you to consume something that makes you sick! I worry about the complications I've been reading about- different kinds of cancers etc. also wondering- are there degrees of celiac disease?  is there any correlation between symptoms and the amnt of damage to your intestines? I also need a firm diagnosis because I have an identical twin sister ... so if I have celiac, she has it too- or at least the genetic make up for having it. I did have a VERY major stress to my body in 2014-2016 time frame .. lost 50lbs in a short period of time and had severe symptoms from acute protracted withdrawal off an SSRI drug (that I'd been given an unethically high dose of, by a dr who has since lost his license)  Going off the drug was a good thing and in many ways my health improved dramatically- just losing 50lbs was helpful but I also went  off almost a dozen different medications, totally changed my diet and have been doing pretty well except for the past 3-4 yrs when the symptoms related to the parathyroid issue cropped up. It is likely that I had low vit D for some time and that caused me a lot of symptoms. The endo now tells me that low vit D can be caused by celiac disease so I need to know for sure! thank you for all that great and useful information!!! 
    • trents
      Welcome, @catnapt! The most recent guidelines are the daily consumption of a minimum of 10g of gluten (about the amount found in 4-6 slices of wheat bread) for a minimum of two weeks. But if possible stretching that out even more would enhance the chances of getting valid test results. These guidelines are for those who have been eating gluten free for a significant amount of time. It's called the "gluten challenge".  Yes, you can develop celiac disease at any stage of life. There is a genetic component but also a stress trigger that is needed to activate the celiac genes. About 30-40% of the general population possesses the genetic potential to develop celiac disease but only about 1% of the general population actually develop celiac disease. For most with the potential, the triggering stress event doesn't happen. It can be many things but often it is a viral infection. Having said that, it is also the case that many, many people who eventually are diagnosed with celiac disease probably experienced the actual onset years before. Many celiacs are of the "silent" type, meaning that symptoms are largely missing or very minor and get overlooked until damage to the small bowel lining becomes advanced or they develop iron deficiency anemia or some other medical problem associated with celiac disease. Many, many are never diagnosed or are diagnosed later in life because they did not experience classic symptoms. And many physicians are only looking for classic symptoms. We now know that there are over 200 symptoms/medical problems associated with celiac disease but many docs are only looking for things like boating, gas, diarrhea. I certainly understand your concerns about not wanting to damage your body by taking on a gluten challenge. Your other option is to totally commit to gluten free eating and see if your symptoms improve. It can take two years or more for complete healing of the small bowel lining once going gluten free but usually people experience significant improvement well before then. If their is significant improvement in your symptoms when going seriously gluten free, then you likely have your answer. You would either have celiac disease or NCGS (Non Celiac Gluten Sensitivity).
    • catnapt
      after several years of issues with a para-gland issue, my endo has decided it's a good idea for me to be tested for celiac disease. I am 70 yrs old and stunned to learn that you can get celiac this late in life. I have just gradually stopped eating most foods that contain gluten over the past several years- they just make me feel ill- although I attributed it to other things like bread spiking blood sugar- or to the things I ate *with* the bread or crackers etc   I went to a party in Nov and ate a LOT of a vegan roast made with vital wheat gluten- as well as stuffing, rolls and pie crust... and OMG I was so sick! the pain, the bloating, the gas, the nausea... I didn't think it would ever end (but it did) and I was ready to go the ER but it finally subsided.   I mentioned this to my endo and now she wants me to be tested for celiac after 2 weeks of being on gluten foods. She has kind of flip flopped on how much gluten I should eat, telling me that if the symptoms are severe I can stop. I am eating 2-3 thin slices of bread per day (or english muffins) and wow- it does make me feel awful. But not as bad as when I ate that massive amnt of vital wheat gluten. so I will continue on if I have to... but what bothers me is - if it IS celiac, it seems stupid for lack of a better word, to intentionally cause more damage to my body... but I am also worried, on the other hand, that this is not a long enough challenge to make the blood work results valid.   can you give me any insight into this please?   thank you
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.