Post-Diagnosis Neuropathy

[lehum]

Hi Everyone,

I hope you are all doing well! 
I am writing with a question about Celiac-related neuropathy. I have been gluten-free now for a year since diagnosed with Celiac, at which point I was experiencing a lot of tingling in my hands and feet/legs. I know that neuropathy is a condition often associated with Celiac, but what I have not been able to find out is it the neuropathy only occurs after having eating gluten or can be a general symptom of the disease. I am very strict with my diet and do not suspect I am ingesting any gluten; however, I am still experiencing the tingling. It's more pronounced after eating; for example, I noticed it today after having eaten a pear. (No way that isn't gluten-free!) Have any of you experienced neuropathy related to Celiac even after having nixed gluten? Should I be concerned?

Thank you! This forum is a godsend. It's so helpful being able to hear about other people's experiences on topics to which doctors don't always seem to have answers. 

 

Friendly greetings!
Lauren

[trents]

Lauren, does this happen regularly after eating pears or is this the only time you have experienced the tingling after eating a non gluten food item? One thought I have is that you may have developed an intolerance or an allergy to pear protein. Also, there is a heap of natural sugar in a pear. Fructose intolerance?

[lehum]

  On 2/4/2022 at 3:15 PM, trents said:

Lauren, does this happen regularly after eating pears or is this the only time you have experienced the tingling after eating a non gluten food item? One thought I have is that you may have developed an intolerance or an allergy to pear protein. Also, there is a heap of natural sugar in a pear. Fructose intolerance?

Expand Quote  

Hi Trent,

Thanks for your response. No, this happens after many things that I eat, actually. I haven't noticed it being connected to a particular food.

[knitty kitty]

Hi, @lehum,

Keep in mind that Celiac Disease damages the areas in our intestines where vitamins and minerals are usually absorbed resulting in malnutrition.  Taking additional B vitamins may be warranted.  (Talk to your doctor.)  

That pins and needles feeling , neuropathy, can be a symptom of several of the B vitamins' deficiencies.  Nerves need thiamine, B12 (Cobalamine), niacin, riboflavin, folate, Vitamin C, and pyridoxine to function.  Without these B vitamins, Vitamin D, and omega three fats, the protective myelin sheath around nerves deteriorates and the pins and needles or buzzing in the extremities begins.  

Frequently, the first vitamin insufficiency to be seen is Thiamine, because it cannot be stored for more than three weeks.  Thiamine insufficiency can begin in as little as nine days.  Every cell needs thiamine.  Thiamine helps with turning carbohydrates into energy for the body. Thiamine helps make insulin, secrete digestive juices, is needed for peristalsis and muscle movement and thinking (yep, your brain can use as much thiamine and energy as physical labor).  

Eating a diet high in carbohydrates and low in thiamine can cause neuropathy.  After eating something high in sugars (fructose and sucrose like in a pear or gluten free cookies), thiamine is diverted to the digestive tract, leaving less thiamine for nerve conduction.  

When I was deficient in Thiamine, I would get worse neuropathy after eating a meal high in carbohydrates.  I corrected my deficiency with thiamine hydrochloride supplements and I also took a B Complex supplement.

The World Health Organization says that a thiamine deficiency can be diagnosed if a patient notices improvement after being given 300 mg of thiamine hydrochloride for several days.  

I had improvement within hours because I was so severely deficient.  

The eight B vitamins are water soluble and cannot be stored in the body long, so a B Complex supplement can ensure you get enough for your body to function properly.  Vitamin C is another water soluble vitamins your body needs to function properly.  It's rare to have a deficiency in just one vitamin, so supplementing with all eight of the B vitamins is beneficial since they are interdependent.  

Hope this helps!