Testing for gluten

[georgedog]

Has anyone Docs suggested being tested for gluten to determine if the inflammation is causing the elevated blood work...However, an accurate one cannot be done while on predisone...Georgedog

[PMRpro Ambassador]

I assume you mean gluten intolerance? There aren't really any such tests except the one for coeliac disease - which produces an antibody that can be measured in the blood and then is normally confirmed with a biopsy of the lining of the gut.

coeliac.org.uk/information-...

Either would only be positive if you were eating enough gluten in your diet at the time - and are only for coeliac disease, not for what is commonly called gluten intolerance which is often not due to gluten but to other things in wheat.

There is no test that can specifically say what is causing the elevated blood markers noted in PMR: usually ESR/sed rate and CRP. They are non-specific markers which can be due to a wide range of conditions - including colds and chest infections.

[tangocharlie in reply to PMRpro]

Hi a question for PMRpro please - I'm thinking about having some intolerance testing done but don't know if it's a scam or worthwhile - any ideas? I know that claims you can tell intolerances from a hair sample is a scam. Something like this

lorisian.com/what-is-food-i...

[georgedog in reply to tangocharlie]

MY Primary Doc is a DO and much more willing to step out of the box in ordering this testing which is expensive $600} no insurance coverage will pay but as soon as I am completely off the Pred. I will have the celiac testing...will be happy to pay if it will improve my quality if life . This PMR {still ? this DX} has a mind of it's own>G-Dog

[Hidden in reply to georgedog]

If you think you are coeliac then a gastroenterologist should be consulted. I am waiting for results from a test. The system in the UK is different but a referral is required from gp. If you were coeliac you would surely have some symptoms. If you have symptoms (beyond crp/esr) then they should be investigated.

[PMRpro Ambassador in reply to tangocharlie]

IMHO I think it is a scam - they don't think so

This is an analysis from Science Based Medicine:

sciencebasedmedicine.org/ig...

I suspect the people who claim good results may be experiencing the placebo effect - that isn't always bad of course, But it would depend how much you paid for it.

[tangocharlie in reply to PMRpro]

Thank you that's very helpful! I've heard anecdotally of one doctor saying 'these things aren't worth the paper they're written on'. However, we are in a state of flux where at the moment patients are often better informed than many doctors about 'new-fangled things' eg low carb diets, so I don't always take what doctors say as irrifutable facts. On balance, I have the same opinion as you, that without any evidence or even science-backed claims they are probably a scam.

[PMRpro Ambassador in reply to tangocharlie]

Most intolerances can become more obvious by keeping a diary - I realised my eczema got worse after trips to Italy. At home I didn't eat much carb - no flour products. What does one eat in Italy? Pizza and pasta. Some experimentation showed it was wheat - not gluten, I could eat other gluten-containing grains. No wheat - no symptoms ...

[tangocharlie in reply to PMRpro]

I've kept a very detailed diary, logging what I eat and reactions for over a year now. That's how I've sussed out I what I've got is probably histamine intoerance, but also fits the pattern of sulphite allergy, maybe a bit of both. For example I can eat macadamia and brazil nuts but not walnuts or almonds as I get what seem to be allergic responses, swollen mouth, face, respiratory problems etc. Yet my GP did allergy tests and they came back clear. So now I'm stuck what to do next. NHS allergy departments only deal with classic Ig responses nuts, eggs, shellfish, dairy. I just get on and live with it, but have a severely restricted list of foods I can eat and daren't eat out in a restaurant or buy a ready meal or anything processed. I had a very scary reaction to taking a magnesium tablet the other day. The ingredients listed were magnesium phosphate, which I've taken before as another brand, and milk which I don't have a problem with either. So it must have been something in the filler or coating not listed. My GP won't give me an epi-pen as I tested clear for allergies. I think she thinks it's all in my head. So frustratng.

[PMRpro Ambassador in reply to tangocharlie]

You don't react to something the first time - it may be the second, hundred and first, thousand and first. Or any other time ...

[Hidden]

Hi Georgedog.

As the result of a simple elimination diet, I recently discovered that my 2 year, 'atypical polymyalgia' may well be 'silent coeliac' disease. It came as a complete shock to me, as I've had no gut symptoms at all.

Coeliac UK reckon that there are thousands of undiagnosed coeliacs, mainly those without any gastric symptoms whatsoever.

Undiagnosed Coeliac disease can cause inflammation anywhere in the body, not just the gut. For example, it may be a trigger for rheumatoid arthritis.

In my case it has caused severe PMR symptoms plus pain & circulation problems in my hands and feet. Also constant tiredness, sleep problems & even blurry vision which I had previously thought was down to the steroids!

Because I excluded gluten for the elimination diet, I am now having to forcefeed myself with the horrible stuff for 6 weeks prior to the coeliac blood test.

It is my understanding that Pred does not affect the coeliac blood test result. As long as you have been eating a substantial amount of gluten for at least 6 weeks, you can get the test done without waiting to come off the Pred.

Sounds like you have well educated doctor.

Go for it, you have nothing to lose by getting tested.

[georgedog in reply to Hidden]

Thank you so much Sarah...info/education is power Will keep looking into this. G Dog

[tangocharlie in reply to Hidden]

The more I read, the more I'm convinced much health and disease stems from the state of the gut. I can't understand why if someone is diagnosed with Crohns or IBS or similar they aren't given advice on changing their diet which probably means quitting gluten/grains.

[SnazzyD]

I think it depends a lot on the person. Gluten affected my health for years but my markers were not affected. Once stopped (by accident to support my daughter) my health improved hugely, it was a revelation. Didn’t bother with the coeliac test because I knew gluten was very bad for me, didn’t want to do the 6 week gluten-filled diet and my behaviour wouldn’t change. However, years later I still got cancer and GCA and my markers still didn’t budge unless I had something like a wound infection.