Pain: Hi I had a snack with gluten by... - Gluten Free Guerr...

Gluten Free Guerrillas
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Pain

SID123
SID123

Hi I had a snack with gluten by mistake yesterday 🙈🙈. Now suffering the consequences😞

But the one thing I’m really wondering is can you get pain in the bones especially the legs after eating gluten? I got the normal headache tiredness bloating but the pain in my shoulders and legs is really bad. Does anybody get this and get it often?

24 Replies
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I didn't have this as part of being 'glutened' last year, but I did have very bad pain in my knees for some months before I was diagnosed as coeliac. I thought it was something completely separate, but it cleared up like magic once I went gluten free - so I suspect yours could be linked to the gluten. The American coeliac people do list joint pain as a symptom of coeliac disease, but ours don't.

We have so much catching up to do in the UK. So behind in the game.

Yes! When I emailed Coeliac UK to ask about this when I found that my "osteoarthritis" had disappeared, they replied to say that NICE don't recognise joint pain as a symptom so they don't either!

Then I have been reading the website of their Australian equivalent, and found warnings that Australian coeliac a need to be very careful when coming here because of our 20ppm.

The UK makes me want to weep. Coeliac UK are a farce. 20ppm is for no one with coeliac. It's for manufacturers. Best thing anyone can do is ignore Coeliac UK, NICE, GPs and find resource elsewhere. You are a money making unit in the UK - you get ill here, everyone rubs their hands in glee as to how they can make cash out of your illness. Aim of the game is to keep people ill, not help them get better. My body is wrecked from listening to stupid GPs, clueless consultants and believign the Coeliac UK fairy-tales of all these wonderful products you can have if you are coeliac. Follow a whole-diet with no processed or 'GF' products and you will be glowing with health. Eat Coeliac UK labelled products and follow UK guidelines - dig yourself in for lifelong bad health, pain and misery.

I agree about the whole food diet - I cook from basics for myself and avoid processed foods, other than a few wraps from BFree. 20ppm is an arbitrary figure, as all safety standards are - I prefer the Australian idea that to be labelled as GF there should be no measurable gluten

To be fair to Coeliac UK on the 20ppm standard - it is the standard of the WHO, and adopted by most countries - which doesn't make it safe, but at least it is not the 200ppm that was "safe" until 2012! (Before my coeliac time - I am only in my second year)

I do feel that Coeliac UK seem to exist mainly to accredit processed foods rather than to research for better standards or to promote our interests! Probably because our subscriptions are only a minor part of their income.

I think, as I've seen on here before, as you say, members fees only small part of their income. Manufacturer engagement is their main/big income stream. Seems that coeliac sufferers get lost in the mix in that situation and becomes bit of a farce of a situation with the rush to push out new GF products but forget that most/many will not be suitable for people with coeliac.

By coincidence, I have just received their latest newsletter, telling me about the wonderful new 5 year plan. They are congratulating themselves about the great increase in availability of GF food on supermarket shelves - which I believe is a response to the fad market, not to any campaigning by C UK, and as we have both aid, not much help to those of us who want real food. I have paid a sub for my first two years, but I doubt whether I will pay up again - I did get access to some useful factsheets when I started, but I know more now, and I certainly don't need an annual book and an app telling me about wonderful new cakes!

Whydothis
Whydothis
in reply to Whydothis

PS - apologies to SID123 - we seem to have hijacked much of your discussion!

Hi Whydothis ,Yes I think you might be right about mine being linked to the gluten. I can’t think of any other reason this happened. I’ve read up on it and it says that it is a symptom. Looks like the American coeliacs right in listing it. Thanks for replying

I suffer the same, I get it all down my legs mainly my thighs and feels like my shoulder bones ache

Similarly I get pain in knees, hands, thumbs joints. Subsides as gluten issue subsides. We need doctors to recognise this as it can lead to lasting joint damage. Lot of people being diagnosed with ideopathic joint pain or early osteoarthritis actually have ceoliac and may not have the digestive symptoms.

Everyone is different, but yes some do experience pain when they eat gluten. Unfortunately it's just the way your body shows it :(

It's inflammation. Also effects brain significantly and other body tissues. Needs way more research and publicising. Inflammation is what impacts on mood in coeliac sufferers also.

One of my reactions to gluten was joint pain, although I didn’t know it at the time. Spent years being treated for an arthritis that I didn’t have.

Benjamin123
Benjamin123
in reply to Penel

Ditto. Had some many random xrays and joint investigations. No one linked with my digestive symtoms. Such a waste of NHS time and money when all I need was coeliac test/diagnosis. Hard not to feel angry at the senselessness of wrong diagnosis. I think everyone who presents with random pain of any sort should be given coeliac test.

Do you have any lasting damage in your joints?

Penel
Penel
in reply to Benjamin123

Thankfully no lasting damage, but a tendency to carpal tunnel syndrome, don’t know if that’s related. I’ve been doing Pilates for many years and have found it has improved strength and flexibility.

I had sacroiliitis and apparently some of the markers for ankylosing spondylitis, not really quite enough for a definitive diagnosis, but still given the drugs. I had no digestive symptoms, so a coeliac test wouldn’t have been considered.

Whydothis
Whydothis
in reply to Penel

I didn't get that far, but I did have my arthritis confirmed by my GP. Now I realise that this was my first symptom, before I got any digestive problems

Whydothis, that is interesting. I hadn't considered it before, but I had joint issues before I got gut issues too. I am told I am allergic to wheat, but have not been tested for coeliac as I have not eaten wheat knowingly for years now, although I do eat spelt and rye. Maybe I should ask for a test?

I think you should at least have the blood test, as if you are coeliac you will feel even better without the spelt and rye, although I know that will be a wrench! However if your gut and joint problems have cleared up, you might find it is the wheat allergy and no need to worry about giving up anything else

Thank you. Food for thought there :-)

It’s interesting reading these comments about joint pain- been a coeliac for 22 years now and have in all that time been suffering with Joint pains and aching legs- had physio on an off in last 10years for Different joints /areas And more recently suffering with pain in hands And been told the onset of “Wear &Tear “Arthritis -with visible Nodules on fingers - am 53 so quiet believable, but interesting to think all my general aches and pains could be linked to Gluten- I try my best to be gluten free but sometimes give in to the temptation , but without paying the price - stomach wise but maybe I’m paying the price with my aches and pains??? .

Whydothis
Whydothis
in reply to Ronan123

I also have the nodules on my fingers, and I accept that this means I will at some point have real arthritis. In the meantime, my joint pain has disappeared to the extent that I am walking up to 15 miles again, and I have even just started running - I can't quite believe how much better I am since being gluten free.

To answer your question - no, I would not dream of ever giving in to any desire to eat gluten. I am too aware of how much health I have gained since I was diagnosed. You also need to remember the long term danger of cancer in the small intestine - I am not prepared to take the risk.

Does anybody get tempted to temptation rarely and eat something containing gluten 🤭🤭

Absolutely not! It cannot possibly be worth it. We all have different symptoms in the short term, and some people hardly notice having a small amount of gluten - but it is still damaging your ability to absorb important nutrients, and making cancer more likely .

We just need to find something safe for the occasional treat.

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