Coeliac pain-is it a vitamin deficien... - Gluten Free Guerr...

Gluten Free Guerrillas

10,827 members4,413 posts

Coeliac pain-is it a vitamin deficiency? Already on a multivitamin and vitamin D with calcium.

Winger65 profile image
9 Replies

Fed up. About to have an op on Friday and after going gf last June, I’ve suddenly had a huge flare up of what seems like neuropathy inflammation and pain. I’m type 1 diabetic since childhood, epileptic, have an under active thyroid and coeliac but the pain from this is horrible. I’m holding my ‘phone to type and my forearms are aching. My hands are prickling, as are my feet and my joints are swollen and hot. Any clues? I’m headachey and can’t walk - I’m also having trouble tolerating the cold. Dead fed up! Oh and I’m 51 and the op is a biopsy for a womb problem. Couldn’t be more fed up, even decent crumpets couldn’t help.

Written by
Winger65 profile image
Winger65
To view profiles and participate in discussions please or .
Read more about...
9 Replies
Cooper27 profile image
Cooper27

It could be vitamin related, but I can't say for sure what vitamins.

I'd definitely consider magnesium - that causes cramps and aches.

What is your vitamin D dose?

Have you been prescribed any B12?

liver-bird profile image
liver-bird

Hello Winger65, I have no answers to your questions but I want you to know I am thinking of you and wishing you well. Big hug. Diane x

Winger65 profile image
Winger65 in reply to liver-bird

Thanks very much - am an ex Southport bird x

Ell17 profile image
Ell17

Neuropathy is a hallmark of diabetes, unfortunately. High blood sugar damages the small nerve fibers over time and nutrient/vitamin deficiency can further aggravate the condition. I have found the following to be quite helpful for calming my nerve pain:

*Vitamin B1 (Thiamine) 100-600 mg per day (start with 100 mg daily for a week then increase accordingly). You may find higher doses actually aggravate the neuropathy. So that's why starting low is important for you to gauge your reaction. It can also help with energy.

*Alpha Lipoic Acid (ALA) 100-600 mg daily, start low and increase as previously stated.

*CoQ10 (or Ubiquinol which is more expensive but is the more absorbable form) up to 300 mg daily. Start with 100 mg. In my experience you will probably have better results with a lower dose. The higher doses can potentially fire up the nerves and make the neuropathy worse. But, you may have no issue. This can also help with energy. Increase as previously stated.

Take all three together.

Also, a low overall B vitamin status can cause nerve pain, forearm pain and aggravate carpal tunnel among many other things. Taking an activated methyl B complex formula (I use Thorne brand) is a necessity in my opinion. This can be taken at the same time as the additional B1, ALA, Coq10.

Have your thyroid levels re-checked, as you may still be undermedicated if you are consistently cold.

Food sensitivities can also cause or aggravate nerve and joint pain. Gluten in particular is a main culprit.

Hope these suggestions can help you find some relief. The continuous gnawing of nerve pain can threaten one's sanity to be sure.

Note: Adding in 400-800 IUs natural vitamin E mixed tocopherols daily helps protect the small blood vessels in your eyes to keep them healthy, as diabetes also affects the eyes (as well as the rest of you). It is a whole body disease. Nothing is spared.:(

*Always make sure your supplements are allergen free and gluten free.*

All the best.😊

Winger65 profile image
Winger65 in reply to Ell17

Thanks. I take a good quality multivitamin and vitamin D/calcium due to a deficiency caused by epilepsy meds. I do have some vitamin B complex in my huge medication drawer, so I’ll see how much I take in the multivitamin and how much I’d be on if I added more. Ultimately I need to see a Dr too but it’s a 6 week wait...unless I pull the diabetic card 😈

Ell17 profile image
Ell17 in reply to Winger65

Something to bear in mind is that multi's only give amounts that will keep a healthy person from falling into deficiency levels. They also won't pull you out of a deficiency if you have one. But, they are good if your nutrient status is already good.

However, therapeutic dosing is generally required for resolution or any real improvement of problematic symptoms.

Good luck....And I would have zero compunction in pulling the diabetic card.😉

Hil101 profile image
Hil101

Hello Winger65, so sorry to hear that you are having such a rough time . Do have a look at specific B12 deficiency websites and see what you think. A good B supplement (with folate, not folic acid) might help. Swansons do Ultra Activated B-Complex High Bioavailability (Health Monthly is a stockist) but serious vit B12 deficiency really needs injections or high dose. Have you been tested? Best wishes, Hilary

Winger65 profile image
Winger65

Thanks! I’d not realised that. I thought they may help but I feel I’ve passed that now. Most helpful thanks.

Winger65 profile image
Winger65

Thanks all. Saw the practice nurse today who seemed bemused I’d asked,but sent off for B12, folates, ferritin and thyroid tests. When I got home I wondered if he’d added vitamin D to the test list. He hadn’t! I rang back and asked the receptionist why, and she grilled me about my ‘need to be tested?’ I’ve had this before and it would seem that even though I became very ill 3 years ago with a vitamin D level that wasn’t recordable, GP’s don’t routinely test? Does it cost more? My levels had dropped due to taking epilepsy medication which blocks natural vitamin D, so I’m supposed to be monitored and on it all the time. Anyone else had this?

You may also like...

Vitamin D deficient..

vitamin D deficient.. Doc says its less than 5, I am coeliac but have been sticking to my gf diet...

Coeliac disease and selective IgA deficiency

how. I had a coeliac blood test which came back negative, then an endoscopy and biopsy which was...

Bone scan and Calcium Vit D

Anyone had Vit B12 deficiency before being diagnosed with coeliac disease?

I had a coeliac disease blood test done Monday and hopefully will find out my results on Monday. I...

Vitamin D

I was diagnosed with coeliac disease in February this year after many years of being very poorly....