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Captain CJ

Coeliac And Body Pains

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Hello from the otherside of the 'pond' hence the different spelling of Coeliac!

Does anybody else suffer from muscular and bone pain which seems to worsen if contaminated by gluten? I'm going back to my GP soon for more advise on a persitant neck, shoulder and arm pain (left only). I've had a steroid injection mid December 2011 to little effect.

Also I sometime get a pain in my shin bones. All I can aliken it to is it feels like my bones are too long for my skin!

I would love to hear back to see if my body pains are related to being a coeliac or just part of getting a little older

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Hi

Although I'm not diagnosed with coeliac but only an allergy although quite severe to gluten & IBS-- I have so many of the coeliac symptoms including join & muscular pain when I've been poisoned.

My join pain occures in my left hand, my other pains occur in my thighs & lower arms- although I wouldn't describe it as 'in the bones' I feel mine is in the muscles-- when I move it feels like they'll explode!

I maybe just getting old too but it seems worse when I've been glutened.

My Doctors don't seem to be concerned with those symptoms- mind you it seems to we are in someways lagging behind in treatment, diagnostics & understanding re:coeliacs in the uk compared to the USA.

I'm interested in what others say too!

Good luck with your healing.

Jx

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Thanks for the reply. I agree with you for sure on the UK versus USA understanding of Coeliac disease. We seems in the dark ages with our attitude to other possible side effects of the disease.

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Ah, the familiar shin pains. Yes, I know them well. I started having them when I was seven years old, so I had to wrap my lower legs in heating pads each morning or take a long hot bath in order to be able to go to school. As an adult, the pain was especially bad after I drank beer. I rarely drank beer (preferred wine...and still do), but after parties where beer had been served, I'd be in horrible pain the next day. All of my bones would ache, but especially my shins. I supposed it was the barley gluten in the beer. Unfortunately, I didn't find out I had celiac until I was 47.

I also had joint pain my entire life until I went gluten free, but, like you, the smallest gluten contamination results in tremendous joint pain throughout my body for about 4-5 days. My muscles, tendons, and ligaments have always been super-tight and sore, too. However, I read a book several years ago called, "The Hidden Story of Cancer," which advised readers to take a certain ratio of Omega 6's to 3's to relieve muscle pain. Supposedly, it helps to supply oxygen to the muscles so that even vigorous exercise does not leave a person with lactic acid build-up. Well, I started taking that ratio (because I've had cancer, and that's the primary reason for taking it), and my muscles did indeed stop hurting. I can even do very strenuous exercises now with no after-effect whatsoever. I take 1/2 teaspoon of organic flaxseed oil combined with 3/4 teaspoon of organic safflower oil in either a small glass of juice or a smoothie once a day. That does the trick--and it also helps with any remaining joint aches and keeps my skin looking soft and younger.

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Oh my goodness! I am so relieved is not just me......I'm a 'don't worry it will be better tomorrow' sort of person and I hate feeling poorly or weak, so to hear somebody else speaking about my same symptoms does really help me. But it also makes me realise I need to push for my GP to take me seriously.

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Thanks for the reply. I agree with you for sure on the UK versus USA understanding of Coeliac disease. We seems in the dark ages with our attitude to other possible side effects of the disease.

US doctors are just as clueless. It took over 40 years for me to finally get a diagnosis.

As to the pain I am unfortunately all too familiar with it. Do make sure you are strict with the diet and do avoid the products that have Codex wheat starch. My pain did resolve once I had been gluten-free for a few months but it does return when I get glutened or when I injest soy.

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Hi, I'm also in the UK, and my GP was also not very alert to the non-classical symptoms. However there are many celiacs in my family which was a pretty strong clue.

I only had vague non-specific abdominal pains, but I was suffering from migraines, which had gradually spread to my neck and shoulders (I always thought this was due to having been injured in a car accident some years ago - Wrong!). 3 years ago I had a frozen shoulder which took a year, several steroid injections and physiotherapy to more or less resolve. Then a year ago the other shoulder froze up. I went back to the physio, and it just got worse rather than better. The physio suggested that there might be an underlying inflammatory disorder, which should be looked at. Basic blood tests showed an ESR of 100, which together with my symptoms was sufficient to generate a referral to a rheumatologist and lots of expensive blood tests for various things, including celiac. None of them came back positive, just the high ESR and a high total IgM antibody level.

A trial gluten free diet quickly resolved the high ESR, high IgM, migraines, neck and shoulder pain (the frozen shoulder released)and back pain, improved the abdominal pain and various other things too.

If I get glutened it all comes back quite quickly.

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