Gluten for punishment

[Kes]

(don't judge me)

Hi I've experimented with cutting out gluten before but I heard an anecdotal tale of someone who said they got massive improvement but only after 6 months gluten free. I just wondered if anyone else who has derived benefit from dropping gluten found it took some time to reap the rewards?

And I would be interested in hearing from people who have been helped from cutting gluten regardless of how long it took to feel better...

Also I know that you're meant to add a little bit of gluten back in after a month but how much is a little bit, a piece of bread per week? Could you give me some examples please?

Sorry for longwindedness

Kes

 

[Hip]

I heard an anecdotal tale of someone who said they got massive improvement but only after 6 months gluten free

In some cases, celiac disease may be misdiagnosed as ME/CFS, and of course once someone goes gluten free, the celiac greatly improves. But it takes many months, because the damage that gluten causes in the bowel in celiac takes time to repair.

But you can also have a gluten intolerance, and you may feel better after stopping gluten. I used to be gluten intolerant, and I found the improvements appear within 24 hours of stopping gluten, and reappear within an hour of eating gluten.

 

[Kes]

Thanks @Hip

 

[Judee]

I went gluten free about 3 years ago. Now if I eat wheat I get anisocoria--where one pupil gets much bigger than the other. It feels like one eye is looking up and one eye is looking down when that happens. It's very odd and makes my brain fog worse.

The bad part is that my ME did not get any better. I wish I had started by just going off wheat but still using other grains with gluten (like barley and rye) in them to see if my reaction is actually from gluten or a wheat sensitivity instead.

Flip side of the coin is that I have lots of food sensitivities and cheating does give me worse days especially eggs. If I eat any eggs my heart starts to hurt and I feel about 3x worse than I normally do.

Anyway, hope this helps.

 

[Kes]

Thanks @Judee for sharing that. I'm sorry it's given you that problem. It doesn't sound good.The food sensitivities sound pretty rough too. I appreciate you commenting, it's helpful.

 

[YippeeKi YOW !!]

Not having had gluten issues that I know of, tho with this withering little ever-yielding pinata of an illness, you never know what might be coming next, I have nothing to contribute, beyond saying that your thread title cracked me up, and thank you for that !!!!

Very clever !!! And witty !!!

 

[Kes]

Thanks @YippeeKi YOW !! Glad you enjoyed it. I like your pinata metaphor, very apt The past few days it's felt like a few unexpected "treats" dropped on my head from the lovely pinata that keeps on giving

PS Another thread comes to mind that you might like about the supplement, PPQ, entitled, Minding my PPQ's

 

[xebex]

Before I went gluten free I had constant daily low grade migraine for 2 years plus all over body aches brainfog and constant fatigue. Within six weeks of quitting gluten those symptoms significantly cleared up but I still have ME, my life is just a lot more bareable. My sister is officially celiac but I am not, I tested negative and refused to cut gluten for a long while because I “didn’t believe in gluten intolerance”. My sister finally convinced me to try and and wow I’m never touching that stuff again! Intersting my officially celiac sister doesn’t notice symptoms till a couple of days after eating gluten but I will get sick an hour or so after eating it.

 

[Kes]

Thanks @xebex. I'm glad things have become so much more bearable for you since giving up gluten. All those symptoms that you had before sound really awful. That is interesting the differences in symptoms manifesting between you and your sister. I have quit gluten a number of times for about 2-3 months without any noticeable difference.

 

[xebex]

I think with gluten it can take a long time to see effect especially if you are actually celiac because it does so much damage and takes a long time to heal BUT I’d would also think you’d notice some changes sooner than that. It’s frustrating. I keep on wondering whether I should quit dairy but in my attempts to do it have noticed nothing. Maybe it’s time to move on to some other thing. Cutting sugar and processed foods is probably just a healthy thing to do. (Cutting sugar also helps me a lot but again no improvement in ME function just an improvement in my comfort level)

 

[Kes]

Thanks @xebex, yes may be worth giving it a longer shot but am wary of unnecessary giving myself problems like poor Judee above. Got other more pressing fish to fry at the moment

 

[erin]

It took me 10 months to get better after stopping gluten and 3 months later I felt pretty bad again and this time I had to stop dairy too. I'm much better since. This was 4 years ago. Funny that I had eaten gluten a week ago and I'm still suffering from it. I get very very sick with gluten and dairy.

 

[Kes]

Thanks @erin. Wow,vsounds like a long time, 10 months. May I ask if you had tested positive for celiac before you cut out the gluten?