Results of my wheat experiment: I have concluded... - PMRGCAuk

PMRGCAuk
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Results of my wheat experiment

SheilasPMR
SheilasPMR

I have concluded that I most certainly have a problem with wheat. I ate wheat for a month and day by day my symptoms increased, the worst of which was extreme fatigue, but also aches and pains in shoulders, hips, hands and feet. I felt exactly like I did when I had a PMR flare. BUT I checked my CRP before starting to eat wheat and it was down (4.75) and when I rechecked it after a month, fully expecting it to be up it was actually DOWN?! (4.0).

Then I stopped eating wheat and within 4 days my energy returned and the pain is greatly diminished.

So I am thinking that either a) the wheat intolerance has nothing to do with PMR but just has similar symptoms and my PMR is gone or b) eating wheat exaserbates PMR and causes a flare but without increased inflammation marker

When I was first diagnosed with PMR my CRP was 34 and I have been on and off Prednisone 3 times. It has been a year since I took Pred.

Maybe once we have suffered tthrouh this dread disease we have a tendency to view everything through that lens.

12 Replies
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Well done!!!

That’s a wonderful thing to have discovered and whether it’s a) or b) or neither, you now know how to prevent those symptoms.

It may well be that after a longer break you could reintroduce wheat again, when your microbiome has really had long enough to rebalance.

Brilliant!!!

PMRpro
PMRproAmbassador

I'd have said that that isn't a major difference in the CRP - and it is affected by other things too. I have a problem with wheat starch (not gluten and I can eat rye and spelt with no problem) but I can't tell if the inflammation level changes - my blood levels are never out of "normal range".

You are right though - once a PMR-er always a PMR-er I suspect! Just as doctors are all to quick to blame everything on pred.

SheilasPMR
SheilasPMR
in reply to PMRpro

With me (and my sister) as well it seems to be wheat specific. I too can eat rye and khoresan from our local bakery where they mill their own four.

PMRpro
PMRproAmbassador
in reply to SheilasPMR

In my case it is definitely something in the structure of the highly commercialised wheat starch. I can eat French bakery - it is made with a different sort of flour - and yes, thank goodness for kamut!!

SheilasPMR
SheilasPMR
in reply to PMRpro

Ohhh you mean I could try a bagette??!! Or would I have to go from Canada to France to get it? 😕

PMRpro
PMRproAmbassador
in reply to SheilasPMR

Not sure. I discovered that when we were on a canal holiday in France with a friend who had kindly (not) done the shopping before we arrived. A doctor, who knew I was allergic to wheat, he had bought baguette and pains au chocolat and aux raisins as a large part of the food on offer. It was eat them or starve for much of the week - really not a lot of other options for shopping en route. And I didn't develop the usual exceedingly itchy rash! I put on weight - but I did rather enjoy them!

Part may also be that the French bakers allow the dough to rise for much longer - and that is thought to be part of the problem with commercial baked goods which are engineered to process very quickly. After all, time is money...

Ive thought I was wheat intolerant since I had surgery for rectocele(not sure if this is English) and was told to eat a lot of fiber. So I started eating a lot of wheat germ and wheat bran. I thought I had caused myself a gluten intolerance then, but when I told the GI doc about it, he brushed me off, saying gluten intolerance was a fad, bla bla.. So even though I knew I didn't tolerate gluten well, since no one took me seriously, I occasionally had wheat and payed the next day for it. I never related the fatigue to gluten intolerance, though, back then.

I've been on a strict low carb diet (-50 grams) thanks to PMRpro's advice since acquiring PMR, but I've still been succumbing to wheat sometimes, and symptoms have been getting worse.

When you don't eat gluten for a long time, when you eat it again, the GI symptoms are even worse, but the last two times when I ate wheat, the symptoms appeared rapidly.. Terrible, incapacitating cramping and diarrhea, which makes me think I have acquired autoimmune celiac disease. The last two episodes have made me paranoid to eat out anywhere.

Sorry, I think I got sidetracked - maybe autoimmune celiac is your C), Sheila.

PMRpro
PMRproAmbassador
in reply to Gaijin

I think your GI doc is a few years behind! Even the NHS website acknowledges that people are intolerant of wheat and others say there is a form of gluten intolerance that isn't coeliac.

SheilasPMR
SheilasPMR
in reply to Gaijin

I did get tested for that but I understand that, like most other tests, the results are not 100%.

I found many years ago that I was wheat intolerant and, like PMRpro can eat other grains, even closely related ones like spelt so gluten isn't the problem. Well before that I'd also discovered that yeast, as in bread products caused lots of non specific pain in various parts of my body. I'm fine with my own homemade sourdough spelt bread - although I don't have the energy to make it any more. I find PMRpro's comments about French bread interesting though because we had a holiday in France, at the stage where I had stopped eating yeasted goods but didn't know wheat was a problem, and I ate French bread without any problem.

All this was years before I had PMR though.

PMRpro
PMRproAmbassador
in reply to Louisepenygraig

The local coeliac specialist thought it could all be part of the autoimmune spectrum - and I suppose it is possible it can be the first sign of autoimmune problems and could appear long before symptoms of others. After all, once you have one a/i disorder you are at increased risk of developing another.

SheilasPMR
SheilasPMR
in reply to PMRpro

That sure resonates with me because I also have been diagnosed with "atopy" which is believed to be caused by in vitro trauma , en.m.wikipedia.org/wiki/Ato... well as PMR and hypothyroidism. My immune system is an overachiever!

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