Ongoing physical effects

[elthomp]

Hi! I have found more helpful information here than anywhere else, thank you! I haven’t been tested, because I don’t want to eat gluten, but went completely gluten-free in December (4 months ago) after realizing I was still eating gluten in dried fruit, chocolate, cheese, etc. Since going 100% gluten-free my gut issues have improved but I have such bad tinnitus and tingling/numbness in feet, legs, fingers, and face. I’m not taking any supplements right now. I try really hard to stick to a super healthy diet but the tinnitus never goes away and the neuropathy keeps coming back. Any helpful tips are greatly appreciated! 

[cristiana]

Hello @elthomp and welcome to the forum!

I am sorry to hear you have ongoing problems with tinnitus and neuropathy. 

In my own case, neuropathy got a lot better once on a gluten free diet but it was one of the last symptoms to recover.  A good year or so, and even today I get tingling in my arms and legs sometimes.  My tinnitus remains to some extent, but I have learned to live with it and barely notice it these days.

An important thing to bear in mind is that other conditions can cause tinnitus and neuropathy, for example:

* Thyroid issues

* Iron deficiency

* B12 deficiency

Have you had any tests for the above?  I would recommend them, if not.

It's also worth bearing in mind that tinnitus is quite a common condition - my father and sister both have it, too, but they are not coeliacs.   The strange thing with tinnitus is a lot of people find that once they have sought medical advice and an explanation is given (and even so, frequently there is no known cause) they relax, tend not to focus on it so much, and hardly notice it. I  had an elderly friend who was aircrew in Lancaster bombers in WWII, and the loud engine noise gave him tinnitus.  He lived with it for seventy years, and told me that he learned not to pay much attention to it and it ceased to bother him.

Cristiana

Edited April 6, 2024 by cristiana

[elthomp]

Thank you for the info! I had bloodwork done and b12, thyroid, and iron were good then (2 mos ago.). It helps to know these may be symptoms that take longer to heal and might make me quit worrying about worse things. I’m frustrated when I feel I’ve gotten glutened and can’t figure out how. Or maybe these symptoms just flare up from time to time, even without gluten? I did have tinnitus before to a lesser extent but once I went completely gluten-free, it really ramped up. I appreciate your response.🙂

[cristiana]

I've sometimes found it hard to attribute flares to a particular cause but it could just be that gluten is sneaking in somewhere?

That aside, another thing that can affects my tinnitus and neuropathy is stress.  Have you been anxious about anything of late?

 

[elthomp]

Oh, yes, I have been anxious lately. And then I tend to go down the rabbit hole of worrying about health. I was also drinking a lot of whey protein powder (gluten-free) because my dietician said I needed to up protein because I’m experiencing muscle loss. The neuropathy is much better today than when I was drinking it but idk if that is the cause. I’ll try to chill down a bit😂

[trents]

It typically takes two years or longer for the gut to experience complete healing and regain its efficiency in nutrient absorption. So, you would do well to supplement with gluten free B-complex and magnesium glycinate.

[cristiana]

54 minutes ago, elthomp said:

Oh, yes, I have been anxious lately. And then I tend to go down the rabbit hole of worrying about health. I was also drinking a lot of whey protein powder (gluten-free) because my dietician said I needed to up protein because I’m experiencing muscle loss. The neuropathy is much better today than when I was drinking it but idk if that is the cause. I’ll try to chill down a bit😂

Several of us on this forum have found ourselves in this situation -  anxiety is often common in coeliacs around the time of diagnosis.   

Although it is written to help people with depression, I found Dr Steve Llardi's book (link below) really helped my anxiety.  You might wish to take a look at it.  He suggests making some lifestyle changes, all natural, which often prove helpful, all things which can so easily be in short supply in modern life:

- physical exercise
- omega-3 fatty acids
- natural sunlight exposure
- restorative sleep
- social connectedness
- meaningful, engaging activity

https://www.amazon.co.uk/Depression-Cure-Six-Step-Programme-Without/dp/0091929814

 

 

[elthomp]

Oh, ok. Great advice! I know I need to start vitamins and I do a pretty good job with a healthy lifestyle. I will check out the book.  It’s such a learning curve with diet. I haven’t been diagnosed with celiac. Don’t want to have to eat gluten to get tested. My dr said I’m at least gluten sensitive, and think maybe I’m NCGS because I get a lot of migraines and joint pain when I consume gluten, as well as the gut stuff, but I find the best info when searching for celiac. I’m careful with cross contamination anyway just because I don’t want to take chances. Thank you all so much for your input! This forum has the best info I’ve found online by far. 

[knitty kitty]

@elthomp,

I've had tinnitus, but I found correcting my low Vitamin D improved it.  

Serum Vitamin D Concentration Is Lower in Patients with Tinnitus: A Meta-Analysis of Observational Studies

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10047354/

 

The eight essential B vitamins and Vitamin D are effective in lowering stress, anxiety and depression. 

Efficacy of B-vitamins and vitamin D therapy in improving depressive and anxiety disorders: a systematic review of randomized controlled trials

https://pubmed.ncbi.nlm.nih.gov/35156551/

Dietary intake of B vitamins and their association with depression, anxiety, and stress symptoms: A cross-sectional, population-based survey

https://pubmed.ncbi.nlm.nih.gov/33848753/

B Vitamins, work‐related stress and emotional mental disorders: a cross‐sectional study among nurses in Indonesia

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9190671/

 

Because celiac disease causes malabsorption and the gluten free diet can be low in B vitamins, boosting your ability to absorb nutrients by taking supplements is beneficial.   

Nutritional Imbalances in Adult Celiac Patients Following a Gluten-Free Diet

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8398893/

Hope this helps!

[elthomp]

Wow, I appreciate the links to the studies! Very helpful. I’m off to source some good gluten-free vitamins. Thx🙂

[elthomp]

Hello! Wanted to give an update. I began taking supplements—B complex, magnesium, and D3–and the tingling and numbness is soooo much better. The tinnitus is still there but it’s manageable. Thank you all for your help! 

[trents]

Thank you for getting back to us and we're glad to hear your symptoms have improved.

[cristiana]

Great news, @elthomp!  Thanks so much for the update.