Pain and fatigue: Hi I have been... - Gluten Free Guerr...

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Pain and fatigue

Alison_71 profile image
11 Replies

Hi I have been diagnosed as a coeliac for 2 years now, I follow a strict gluten free diet, have the occasional problems with cross contamination when eating out. Over the past month I have been experiencing severe pain in my feet, muscles in my legs and wrist pain after being on my feet all day at work and feeling very fatuiged. I know as we get older we experience general aches and pains but at the end of the day I feel like I've run a marathon.. Has anyone else experienced pains like this after going wheat free? I did feel like this before I was diagnosed and it got better after going gluten free and a course of iron tablets as I was very anaemic when diagnosed. I thought as my gut healed I would be able to absorb the iron that I was deficient in.

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Alison_71 profile image
Alison_71
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11 Replies
pvanderaa profile image
pvanderaa

What are your vitamin B12 and folate levels?

Alison_71 profile image
Alison_71 in reply topvanderaa

I haven't had a full blood test for a year so thinking of going back to doctor's to get them repeated. Would lacking in b12 and folate cause these pains ?

pvanderaa profile image
pvanderaa in reply toAlison_71

Nerve damage to the long nerves from deficiency of these vitamins can cause pain. Any anxiety, balance, brain fog type issues?

B12 blood test results under 400 pg/ml could cause hidden neurological damage in about 10% of the population.

Unfortunately, healing nerves can also generate a very similar pain symptom due to stronger signals until the brain recalibrates.

Alison_71 profile image
Alison_71 in reply topvanderaa

Thankyou that is something to ask the doctor. I do suffer from anxiety and also brain fog occasionally, which I put down to if I have been inadvertanly glutened.

pvanderaa profile image
pvanderaa in reply toAlison_71

Check the Pernicious Anaemia page on healthunlocked for more possible symptoms of B12 deficiency

Marz profile image
Marz

Check B12 - Folate - Ferritin - VitD. These are tests that must be requested and are not routine. When a GP says a Full Blood Count - it checks the size and volume of red and white blood cells - not the afore- mentioned.

B12 is good around 500 - to prevent neurological damage and cognitive decline.

Folate and Ferritin are good around mid-range.

VitD good around 100+

Docs satisfied if you are just in range - but it is where your results falls that is key.

Surgeries should now have on-line access to your records so check with Reception. You will need ID. If not then always request copies of your results si you can monitor your own progress and check what has been missed !

I have Crohns and Hashimotos - having had gut TB in my 20's - now well at 73 🌻

Alison_71 profile image
Alison_71 in reply toMarz

Thankyou for your reply. I will ask the doctor for the extra tests.

Marz profile image
Marz in reply toAlison_71

If your GP is not co-operative then Private testing is available - testing kits sent to your home. Blue Horizon - Medichecks and others. Results by e-mail ..

esteloca profile image
esteloca

Yes I was also diagnosed with Celiac (spelled differently in the US) 2yrs ago, am on a strict gf diet and still suffer from those symptoms. I'm up in the middle of the night now with pain and numbness responding to your post.

Everyone is correct about B12 & other tests you need. I'm on weekly b12 injections and have all the deficiencies mentioned. Insist on copies of results and remember to ask for tests by name. Doctors (even the most trusted ones) will tell you you're fine... Your blood work was fine etc. when they only ran basic tests and or when your levels are at the lowest of the low normal range when in reality you need to be treated for a deficiency at that point with your symptoms.

Last but not least BeyondCeliac.org has been extremely helpful in explaining continuing celiac symptoms etc. They're at the cutting edge of research and studies and know more than any of my doctors. Just thought I'd share that while I'm here.

Take care.

Alison_71 profile image
Alison_71

Thankyou for your reply. I have a blood test booked for all the deficiencies listed, and will ask to see the results.

Hope you start to feel better soon.

lynnm profile image
lynnm

hi i have pains in my shoulder ,legs and pins and nedlies in my feet. all on my left side. i ham 70 and now have glutten ataxia and am under Sheffield royal Hallam hospital at there Gluten ataxia clinic the best in england. ask to be reffured to them . sorry about any spelling mistakes as i am dysletis.

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