Peripheral Neuropathy

[djmu]

Hello. This is 2nd subject posted on Celiac.com. I was told I had Peripheral Neuropathy (PN). I experience what I can only describe as my socks feel bunched up under my toes. You know like when you need to remove shoes and pull up your socks. Also I do pass all test for nerve response time. Thats a head scratcher. I don't know how that is possible if I have PN. I've been gluten-free for years but no change in sensation except lately less crunchy in bending toes after sqatting for a while (a few minutes). Docs scratch their heads too and say I don't know what to tell you. Has anyone else experienced this? Could this be a result from celiac? If yes, than do you have any news for me. Thanks everyone who spent the time reading about my dilemma.

[Scott Adams]

I had similar symptoms that was associated with gluten ataxia, for example numbness and tingling in my feet, and muscle knots--especially in my shoulders an neck. Only long term extensive supplementation has helped me to resolve these issues.

The most common nutrient deficiencies associated with celiac disease that may lead to testing for the condition include iron, vitamin D, folate (vitamin B9), vitamin B12, calcium, zinc, and magnesium.  Unfortunately many doctors, including my own doctor at the time, don't do extensive follow up testing for a broad range of nutrient deficiencies, nor recommend that those just diagnosed with celiac disease take a broad spectrum vitamin/mineral supplement, which would greatly benefit most, if not all, newly diagnosed celiacs.

 

 

 

[Tlbaked13]

I am COMPLETELY new to this celiac disease however I have had the same feelings and then some with my feet for years now and been diagnosed with peripheral neuropathy myself but they blamed and attempted to treat due from my type 1 diabetes and none of the treatment has helped at all so far so possible from celiac disease? Just sharing MY thoughts on this I've had zero confirmation 

[trents]

Welcome to the forum, @Tlbaked13!

Have you been officially diagnosed with celiac disease?

It is well-known that celiac disease can result in peripheral neuropathy but so can diabetes. 

[Tlbaked13]

Not officially diagnosed yet I goto the doctor a week from today but I'm 110% that will be the diagnosis I honestly can't believe my doctors/health care team hasn't put it together before I mean I'm basically the live and walking definition straight from the book haha I don't think I've ever been so sure on anything before I'm just reqly concerned for this diet I will be living on or diets I guess due to type 1 diabetes, gastroparesis, gerd, celiac disease, and lactose intolerance...what is left? A sand salad with a side of rain water?!? I definitely see a tough future

[cristiana]

Hi Tibaked

If you are diagnosed with coeliac disease, you may find that all sorts of symptoms will be alleviated by a gluten free diet.  GERD and lactose intolerance can be greatly reduced if not eliminated once the gluten-free diet is adopted.  However, if you want to be tested and officially diagnosed you will need to have been consuming gluten until your blood test/endoscopy.  

Although I don't have the same sensations you describe before my diagnosis, I frequently woke up with numb arms and numb fingers.  I could feel pins and needles in my extremities.  Weirdest of all, the sensation that drops of cold water, like rain, were falling on me, even though the sun was shining or I was indoors.

It took time but things got much better after after following a gluten free diet for a while. Of course,  some neuropathy is caused by malnutrition, common in coeliacs when first diagnosed,  so make sure the doctor checks your vitamin (particularly B12) and iron levels.

Cristiana

Edited March 28, 2024 by cristiana

[Tlbaked13]

Thank you guys for your input I am loving this forum more and more and it hasn't been a hour!

[trents]

Christiana makes a good point. Long term undiagnosed and untreated (by a gluten-free diet) celiac disease inevitibly results in vitamin and mineral deficiencies because of the damage done to the villous lining of the small bowel - the part of the intestines where essentially all nutrition is absorbed. Keep eating plenty of gluten until all testing for celiac disease is complete so as to render valid test results. Beginning a gluten-free diet ahead of time allows healing to take place and compromises testing. But if it turns out you are diagnosed as having celiac disease, you will want to begin high potency vitamin and mineral supplementation along with serious gluten free eating.

[Tlbaked13]

Thank you and I am aware that I should be eating a "normal" diet until tested it's kind of been trial and error for my diet or more like just ERROR! I about 1-3 bites a meal I'm to a point that 99 percent of the time I'm having trouble swallowing just about everything occasionally I find either something or a very small window of time that allows me to get very little of something! I am basically getting zero nutrition what so ever because I take one bite of the meal that I usually just slaved over just to end up tossing it when it's all said and done...did anyone else ever experience anything like this?  I am more then open to suggestions! It is taking a very extreme toll on me and my body forsure 

[trents]

Do you believe your swallowing is a manifestation of your neuropathy? I'm thinking if you are having trouble getting food down you need to focus on consuming things that have a high nutritional density so that whatever you are able to get down counts for something. Have you looked at Boost and other high protein/high calorie shake products?  They are fortified with vitamins and minerals as well. Do you have any trouble with aspiration of liquids?

For celiac testing purposes, the guidelines are calling for daily consumption of about 10gm of gluten - the amount in about 4-6 slices of bread - in order to ensure valid testing. That sounds like it would be a challenger for you.

Edited March 28, 2024 by trents

[Tlbaked13]

Sometimes I end up spitting out a drink of water! But for the most part I do ok with the liquids that I've been sticking to which Is hardly anything carbonated (meaning diet soda mainly)  I drink alot of tea which I make myself lipton cold brew sweetened with half sugar and half Splenda, smoothies when I could in the beginning but made with milk so I'm now using orange juice instead of the milk but it doesn't workout real often I drink black coffee in the mornings with no trouble usually and I've been experimenting with some juices but the sugar content is a set back I'm not a huge water fan but will drink it unfortunately where I live I can't do the tap water I'm the only one who has a problem with it apparently but for some reason I just can't...unless I'm using it in coffee or tea and the tea even took me some time to stand yes I have thought about boost/ ensure but they are very costly for someone who is scrapping the bottom at this time