Tingling In Feet After Going Off Gluten.

[Clive92]

Hello,

This is my first post to this forum -- it has been immensely helpful for me to discover that there is a place for people with this affliction. It really helps me cope with the difficulties that this disease presents. Anyway, I was hoping that somebody could perhaps give me an explanation for some strange experiences I've been having recently. So, here it goes...

I'm a 19 year old male and I was diagnosed with Celiac disease approximately 4 months ago following years of tremendous gastrointestinal issues and pain. I, of course, put myself on a gluten-free diet straight away. I noticed an almost immediate improvement in my health -- the pain had decreased, as did all the accompanying symptoms. All was looking positive. That was, however, up until about 2 months ago. Seemingly inexplicably, I began experiencing tingling sensations, pain and cramps in my feet and hands (the feet more prominently). Its severity fluctuates, but it is generally constant.

Frightened, I went straight to my Doctor -- mostly out of fear that I could be showing early signs of Multiple Sclerosis, Diabetes or any number of malignant diseases. She gave me a nebulous answer, rattling off several possible causes for these sensations -- ranging from Celiac to anxiety to vitamin defficiency to simply poor footwear. Unsatisfied, I left her office with more questions than when I arrived.

I have been diagnosed with Generalized Anxiety Disorder, so those close to me have been trying to reassure me that my symptoms are related to that, or to my Celiacs. Of course, I take no comfort in this. I've now become extremely depressed --my whole life seems out of shape and I'm becoming a real burden for my family.

Thus, I am here, and am wondering: could these symptoms be caused by my Celiacs despite removing gluten from my diet? Or am I justified in worrying about diseases such as Multiple Sclerosis and Diabetes? What should I do?

Thank you so much for reading this and I hope you can help,

Clive

[Kansas]

I think we all experience "different symptoms' after becoming gluten free. I think a lot of it is related to the lack of nutrients and vitamins. Hang in there, it gets better with time. Time, good food, and increase your intake of vitamins, will have you feeling better.

[Aly1]

B12 has apparently helped people here with neuro symptoms like you're describing. It is very likely you do have vitamin deficiencies and that that is the cause. Make sure you are taking high quality gluten-free supplements and try including a B12 in there. Good luck!

[ravenwoodglass]

I second the B12 suggestion but do get the sublingual form of it as it will be absorbed by your oral mucous membranes bypassing the damaged gut.

You may also be low in magnesium and should make sure your for sure gluten-free vitamin regime includes it.

Your anxiety may resolve a bit gluten free but it can take some time. Those of us with neuro issues do tend to be a bit more sensitive so make sure you are doing all you need to do to prevent cross contamination in foods, food preperation and things like a significant others lipstick. If you live in a home with gluten eaters you do need to have your own toaster, strainer and things like condiments and butter etc. It is also not a good idea to have others baking with gluten flours in the home as the flour can remain airborne for up to 2 days and can get us when we breathe it in.

[Skylark]

As well as B12, take some benfotiamine. I'd also suggest fish oil for the anxiety.

Also, have a look at what you're eating. If you've switched from whole wheat to ultra-starchy gluten-free foods your blood sugar may be bouncing around more than is healthy. Make sure you have protein and some fat (like nuts or cheese) with your snacks, and replace some unnecessary carbs on your plate with meat and veggies.

[Clive92]

Thank you so much to you all. I will definitely put all those measures into place straight away!

Clive

[Lmarie884]

Hi Clyve

i realize this is an old topic but I’m going through exactly as you describe 

I felt good at first followed by the tingling in the hands and feet. 

Can you please let me know what ever came about with you?

[Smiley-11]

I’m experiencing the same too. Felt good at first but now tingling sensations in my arms and legs. Would love to know how you both are now? 

[Betsy Bee]

I have the same problem. MRI showed nothing. I know I had Transglutaminase 6 antibodies on a test by Cyrex Labs and Vitamin D was low. Did they refer you to a neurologist? Keep track of your symptoms because 10% of celiacs do get MS. Have your MD test your Vitamin D levels because if you need to take more D3, it could help with depression. Don't feel like a burden. You're not a burden, trust me, it's normal to feel down and it will pass. Hope this helps you. ?

[cyclinglady]

Please ask your doctor for follow-up vitamin and mineral deficiency testing.  Take a good look at the previous posts.  Most newly diagnosed celiacs are deficient due to small intestinal damage where most nutrients are absorbed.  

[rtcookjr]

I have the tingling, also. It’s from neuropathy caused by the celiac disease. I doubt it will go away, nerve damage does not repair itself.

[Misfit Reindeer]

Hello! New celiac here with a similar experience! Do you have restless legs, too?

[cyclinglady]

1 hour ago, Misfit Reindeer said:

Hello! New celiac here with a similar experience! Do you have restless legs, too?

Welcome!  

Restless Leg Syndrome is common among celiacs.  

https://www.ncbi.nlm.nih.gov/pubmed/19731029

Researchers suspect vitamin and mineral deficiencies.  Even though you are probably following a gluten free diet, chances are you are still getting gluten exposures (possibly hidden) if you are newly diagnosed.  It can take up to a year or longer to heal from celiac disease and all the body systems it can impact.  This is because the learning curve to the diet is steep.  Mistakes are made and setbacks occur.  Even if you were brilliant and mastered the diet, the body needs time to repair.  Neurological issues seem to take the longest.  

Ask your doctor to screen you for vitamin deficiencies which is what all leading celiac research centers advise.  Concentrate on avoiding processed foods as much as possible for a while.  Identify any food intolerances. Do not eat out until you feel well and are willing to risk a setback.  

Give it time, soon you should be feeling well!  

 

Edited November 28, 2019 by cyclinglady