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Peripheral Neuropathy

djmu

By djmu
in Related Issues & Disorders

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djmu Newbie
djmu
Posted

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.

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Scott Adams Grand Master
Scott Adams
Posted

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.

 

 

 

  • 4 weeks later...
Tlbaked13 Newbie
Tlbaked13
Posted

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 Grand Master
trents
Posted

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 Newbie
Tlbaked13
Posted

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 Veteran
cristiana
Posted
(edited)

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 by cristiana
Tlbaked13 Newbie
Tlbaked13
Posted

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

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trents Grand Master
trents
Posted

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 Newbie
Tlbaked13
Posted

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 Grand Master
trents
Posted
(edited)

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 by trents
Tlbaked13 Newbie
Tlbaked13
Posted

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 

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    • cococo
      11 yo waiting for diagnosis

      By cococo · Posted

      Thanks @trents I'll keep that in mind.
    • trents
      11 yo waiting for diagnosis

      By trents · Posted

      One thing to be aware of is that reactions to gluten can sometimes be more severe after having been gluten free for a significant period of time. Something to think about in connection with a gluten challenge.
    • cococo
      11 yo waiting for diagnosis

      By cococo · Posted

      Hi @trents Thanks for your reply and the clarification on terminology—most appreciated. My GP has referred us to a Paediatric Gastroenterologist, and we're waiting for an appointment. She mentioned they might want to do an endoscopy or run further testing. But that often with children they try to avoid scoping them.  She also said it could take months to get an appointment, which is why she recommended starting a gluten-free diet immediately to see if there's any improvement in his symptoms, growth, and blood tests. I have an appointment in 5 weeks with the Paediatrician (who ordered all the tests)—not the Gastroenterologist. I expect the Paediatrician will also recommend a Gastroenterologist referral for further testing and diagnosis. I understand the reasons for confirming with biopsies. I'm just eager to help him feel better and I don't want to keep him eating gluten for months while waiting for a specialist when it's clearly affecting him. I really appreciate your input on this, especially your thoughts about this pointing to celiac rather than NCGS. Intuitively, it feels that way—he's always been incredibly healthy and strong, but he's suddenly wasting away. We're in Australia, so I'm not sure about benefits, etc. and needing a formal diagnosis. I’ll have to investigate.  If necessary to do a gluten challenge down the track for confirmation I'm happy to cross that bridge when I come to it. Thanks so much for your advice!
    • trents
      11 yo waiting for diagnosis

      By trents · Posted

      Welcome to the forum, @cococo!  So. let me first clarify some terminology. Gluten intolerance is a general term that can refer either to celiac disease or NCGS (Non Celiac Gluten Sensitivity or "gluten sensitivity" for short). Having said that, in common, informal usage there is still a lot of mix up in the use of the terms "gluten sensitivity" and "gluten intolerance".  Elevated DGP-IGG can certainly indicate celiac disease but the IGG tests are considered not quite as specific for celiac disease as are the IGA tests, especially the TTG-IGA. If it were the TTG-IGA that gave a 250 score it would have been grounds for declaring an official diagnosis of celiac disease without further testing in the UK and many European countries. With children, however, because their immune systems are immature, we often see their celiac disease show up in the IGG tests rather than the IGA tests. Has their been any talk about an endoscopy with biopsy of the small bowel lining to confirm or disprove a diagnosis of celiac disease? The endoscopy/biopsy is considered the gold standard of celiac disease diagnosis. Physicians are not eager to do scoping on pediatric patients, however, and try to avoid that unless there is a very good reason for it.  I think to proceed with a gluten free diet experiment at this time is a reasonable approach. If there is improvement in labs, symptoms and growth then it is reasonable to assume that there is celiac disease to blame or at least NCGS. At the end of the day, both conditions require a gluten free diet anyway. But I would also have to say that when looking at the total body of evidence you present, it looks much more like celiac disease than NCGS.  One caution, however, and that is if you are in the UK there are certain government provided benefits that incur from a formal diagnosis of celiac disease. I mention that because some of your spelling suggests that to me.
    • cococo
      11 yo waiting for diagnosis

      By cococo · Posted

      Hi all, I'd love some feedback on my 11 year old son who is waiting for a diagnosis. He has been unwell for about 6 months. His symptoms include: early morning (4/5am) nausea and vomiting, loose bowels, fatigue, headaches, aching legs, persistent dermatitis on cheeks. Recently, I noticed he wasn't growing as expected. After measuring him, we found his height had dropped from above 50th percentile to 25th, and weight from 50th percentile to 5th. I took him to our GP who confirmed he only grew 2cm in the past year and lost weight, and subsequently referred us to a paediatrician. We saw the paediatrician who ordered extremely comprehensive tests (including urine and poo testing, x-ray on wrist, hormones, thyroid, liver, kidney, diabetes checks, etc). While waiting for all results, our GP received some preliminary findings indicating coeliac disease. The GP recommended starting a gluten-free diet and referred us to a paediatric gastroenterologist. Most test results are normal except: Iron levels:  18 (normal range 20-200) Anisocytosis and Microcytosis (abnormal sized red blood cells indicating iron deficiency anaemia) Coeliac-related results: DGP IgG:     >250 (normal <15) DGP IgA:      8 (normal <15) Tissue IgA:   1 (normal <15) Tissue IgG:   1 (normal <15) Genetic markers are present for coeliac A comment was made on the blood tests that total serum IgA would be tested and commented on if below 0.07. There was no comment so I assume it wasn’t that low. While I understand it could be coeliac disease, gluten intolerance, or wheat allergy, his significant growth issues suggest coeliac. The paediatrician won't see me for 5 more weeks (because he's waiting for one more test he did on his chromosomes), but I'm concerned about waiting that long given his symptoms. Clearly he shouldn't be eating gluten regardless of the diagnosis, and I'm keen to help him feel better and start growing again, especially with puberty approaching. The blood tests were extremely comprehensive and ruled out everything except coeliac disease or a strong gluten intolerance. My GP is adamant it must be coeliac because of his symptoms. My GP said, "Don't worry about the chromosome test—that's just precautionary. His blood tests, weight loss, lack of growth, iron deficiency, fatigue, dermatitis, and other symptoms all point to coeliac." Would starting a gluten-free diet now and doing a gluten challenge later be unreasonable? (I do understand the reason to wait for a clear diagnosis, I just want him to feel better. Also, he is homeschooled so I can very much be in control of his food to ensure no cross contamination, etc) Also, does anyone have experience with highly elevated DGP IgG (but normal other results) and testing positive for coeliac? For what its worth, I personally have had many checks for Coeliac over the years and the results are always "unclear". Apparently I'm a complicated case, so I just eat gluten-free. Thanks!
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