Newly Diagnosed with Celiac / New Peripheral Neuropathy Symptoms / Will they go away?

[ChantalTG]

Started having peripheral neuropathy type symptoms in my hands in late January along with dizziness and exhaustion. I thought I was dying. After 3 weeks went to the ER. Dr suggested that it might be anxiety. I realized he was right. A lot of the symptoms went away including the feeling in my hands. I did all the things I could think of for anxiety. Got a therapist, naturopath, meditation, massage, etc. Couldn't quite get it under control. Then after a month I got hit with crazy pelvic pain. Right as this happened I first started having some classic symptoms like pale bm's, diarrhea, constipation. The pain threw me over the edge, every said it was all anxiety induced and I agreed to starting and SSRI Lexapro. It has somewhat helped flatten out my anxiety but has made me feel very lethargic. Got a celiac diagnosis 9 days ago and have been gluten free since. Pelvic pain started to let up after a week. BUT! Just started having discomfort in my hands a few days ago. At first it felt like I was about to break out in a rash, now it is cold, achy, itchy and pin prickles. Feels like my forearms are cold and achy as well. What is going on? Is this normal to start up within the first week of going gluten free? What are peoples experiences with this? Will this get better or worse? I am not sure what to do. Love some advice. 

I know B 12 effect this. My B12 was fine in January. Just got it checked again today and waiting for results. I can't imagine it has crashed since then. Any other deficiencies to look into? 

[Scott Adams]

It definitely sounds like you have some nutrient deficiencies caused by probably caused by malabsorption due to flattened villi in your intestines. You may need to take a good multi-vitamin/mineral supplement, and Kirkland makes a decent one sold at Costco, and there is also One A Day brand. Talk to your doctor about this, but also have a look at the article on this topic below.

It sounds like you may also have dermatitis herpetiformis, which is the skin condition associated with celiac disease. 

Hopefully you understand the gluten-free diet, and have been 100% gluten-free. This article may help:

 

[trents]

Have you been checked for anemia? You should probably be on a B-complex, Magnesium glycinate, D3 and zinc. Make sure all vitamins and supplements are gluten free.

[ChantalTG]

 

I am confident that I have been 100% gluten free in the past 9 days. 

My hands feel itchy but I don't have a rash. I am not anemic because my hemoglobin is good. But I am waiting for an up to date iron results. My iron could be very low regardless of my hemoglobin. 

So are you folks suggesting that deficiencies are the most logical culprit causing the PN symptoms?

Do these symptoms often clear up as you go longer and longer gluten free? 

I am feeling really scared. 

[Scott Adams]

I think you may want to read through that article and see if some of the symptoms of certain deficiencies match yours, and perhaps ask your doctor to test you for various nutrient deficiencies. In general, taking a good multi-vitamin/mineral supplement is often recommended to celiacs, especially when newly diagnosed.

[ChantalTG]

Hi Scott. Thank you. I really appreciate your time. You are amazing for being such a rock on this forum. I will read through the article. It is just so far it seems my levels are within range. Again we will see what the newest results come in at. Maybe 'within range' isn't always good enough and I need to up them regardless. It is easy to feel doomed when you are being hit with so many symptoms. I would love to know if others had this peripheral neuropathy type symptoms come at the beginning and go as they got further down the road. 

[trents]

PN is a common spinoff for celiacs and also for some with NCGS. It may be the result of nutrient deficiencies or some more direct toxic effect of gluten in the nervous system. We don't really know what the connection is in many cases. There is a lot we don't know about the negative impact mechanisms of gluten on our systems if we have intolerance/sensitivity to it. Another example is elevated liver enzymes that occur in about 20% of celiacs. We don't know why. But we know is that gluten-related neuropathy is a common collateral condition in the gluten intolerant/sensitive population. On a strict gluten-free diet it can be entirely corrected but for some it isn't entirely corrected, perhaps because damage has been going on for too long.

[Sonja McC]

  On 4/18/2023 at 11:13 PM, ChantalTG said:

 

I am confident that I have been 100% gluten free in the past 9 days. 

My hands feel itchy but I don't have a rash. I am not anemic because my hemoglobin is good. But I am waiting for an up to date iron results. My iron could be very low regardless of my hemoglobin. 

So are you folks suggesting that deficiencies are the most logical culprit causing the PN symptoms?

Do these symptoms often clear up as you go longer and longer gluten free? 

I am feeling really scared. 

Expand Quote  

If only 9 days gluten free, it may take awhile longer.   Ensure all your food items are gluten-free.  Gluten hides and you maybe sensitive to cross contamination .  Don’t  share toasters, use your own cutting board etc … Try and not eat out for awhile and perhaps stay away from processed food.   Your body is adjusting .. don’t  be scared and allow yourself to rest 💜

[ChantalTG]

Results are in. So it looks like all my iron and b 12 levels are normal. I don't know where that leaves me with the PN symptoms. I am hoping that getting some supplements going and time gluten free will resolve it. 

[Russ H]

  On 4/19/2023 at 1:20 AM, ChantalTG said:

Results are in. So it looks like all my iron and b 12 levels are normal. I don't know where that leaves me with the PN symptoms. I am hoping that getting some supplements going and time gluten free will resolve it. 

Expand Quote  

A good multivitamin and mineral tablet everyday for the first year. That said, the evidence points to gluten induced neuropathy being caused by a direct immunological attack rather than vitamin deficiency. Stick with a strict gluten-free diet. As your antibody levels fall, your symptoms should improve.

[Vicrob]

Hi. I’ve been gluten-free 10 months. I have gluten ataxia. My PN had gone away but it’s back. I’ve an appt today with neurologist. My muscles are spasming and weak. My vision is blurry and I feeL like I’m fading. I’m hoping it’s vitamin deficiency. I will update after todays appt. I feel very low as I was doing so well. I haven’t been taking supplements but I will from now on. I didn’t know gluten ataxia affected absorption but it does. I’m very scared too Incase it’s another immune disease. I have changes in my cellebrum which account for my balance issues. I feel like I’ve been poorly forever (10 years) until diagnosed. I’m U.K. and it’s so hard to even speak to a doctor - 3 week wait for a call back. 

[trents]

  On 4/19/2023 at 4:54 AM, Vicrob said:

 I didn’t know gluten ataxia affected absorption but it does. I’m very scared too Incase it’s another immune disease. 

Expand Quote  

Can you document that? I think if anything it's the other way around.

[Vicrob]

Hi I’m not sure what you are asking? An ataxia nurse spoke to me last week - she works at the ataxia centre where I was diagnosed. I suggested my vitamins could be low and she said yes, gluten ataxia patients often have low vits. I’ve been low on vit D before and felt much like this - but this time I have peripheral neuropathy. 

[trents]

  On 4/19/2023 at 6:03 AM, Vicrob said:

Hi I’m not sure what you are asking? An ataxia nurse spoke to me last week - she works at the ataxia centre where I was diagnosed. I suggested my vitamins could be low and she said yes, gluten ataxia patients often have low vits. I’ve been low on vit D before and felt much like this - but this time I have peripheral neuropathy. 

Expand Quote  

My point is, you said "I didn't know gluten ataxia affected absorption', implying that the symptom (ataxia) was a contributing cause to the underlying disease (malabsorption of nutrients) when it would seem to be the other way around.