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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Do your ME symptoms improve when you exclude wheat/gluten?

Do yourME symptoms improve when you exclude wheat/gluten from your diet?

  • I never eat wheat/gluten for other reasons

    Votes: 12 9.6%

  • Yes, it makes a huge difference- I try to avoid

    Votes: 33 26.4%

  • Yes, I notice some improvement in some symptoms

    Votes: 24 19.2%

  • No- wheat/gluten intolerance does not affect me

    Votes: 41 32.8%

  • I have not noticed either way

    Votes: 15 12.0%
  • Total voters
    125
Y

Ysabelle-S

Highly Vexatious
Messages
524
MeSci said:
I don't think many of us have actual coeliac disease, but another kind of gluten intolerance. I had already given up gluten when I was offered the test too, and wasn't willing to risk it, just to get GF products free if I did have coeliac disease. I could have done with financial help, but might not have got it anyway.
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Yes, I don't think I have it, though I discovered recently that the cystitis might have been another sign of it, but I'm sure it's the gut and immune issues more related to ME than anything else.
 
E

erin

Senior Member
Messages
885
Ysabelle-S said:
I've not been tested because I wasn't willing to eat it again and risk weeks of painful cystitis just to do the test. I had cystitis for decades, a couple of times a year on average, and it went away when I gave up gluten, barring the one time I accidentally ate bread with some gluten in it - two months of cystitis. Never again! So I don't know.

I gave up milk, and eat far less butter and cheese than I used to and I suspect that's helped some other gut issues.
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OMG two months of cystitis! That's really awful. So sorry to hear this.

I wouldn't take the coeliac test for the same reason that you mentioned above.
 
Y

Ysabelle-S

Highly Vexatious
Messages
524
erin said:
OMG two months of cystitis! That's really awful. So sorry to hear this.

I wouldn't take the coeliac test for the same reason that you mentioned above.
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Two months and three loads of antibiotics which did absolutely nothing. Nor did anything show up in the tests. Not had cystitis for two and a half years now, so not in a hurry to see it come back!
 
E

erin

Senior Member
Messages
885
Ysabelle-S said:
Two months and three loads of antibiotics which did absolutely nothing. Nor did anything show up in the tests. Not had cystitis for two and a half years now, so not in a hurry to see it come back!
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Thank goodness that cystitis is away. Considering how stressful, draining, depressing and inconvenient cystitis is.
 
Sarahloudobby

Sarahloudobby

Senior Member
Messages
173
Hi everyone I'm reading this with great interest. Over the last couple of months I've noticed that most of the time my number twos now float most of the time and I am going to the toilet a lot more often though it's not diarrhoea. I've had IBS symptoms on and off for over 15 years alongside the ME diagnosis. I've been to the doctor as I was concerned I may have Steatorrhea but she didn't seem concerned. Still worrying though x
 
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