People with gluten intolerance (not celiac) - how strict are you?

[keepswimming]

I know a lot of people with M.E. have problems with gluten. I've recently realised I'm probably one of them. I know if you are celiac you need to avoid even the tiniest speck of gluten. But for those of you who have non celiac gluten intolerance, do you worry about cross contamination? Do you find you have a tolerance level or is it vital to avoid it all together?

I guess there will be a variety of answers here but I am interested in other people's experiences as I figure it out for myself.

 

[Hufsamor]

You might have to avoid gluten for quite some time before you notice any difference.
I had suspicions myself, regarding to gluten intolerance, and avoided gluten completely for three months. With no results whatsoever. So I thought I was wrong about that one, that I might as well eat gluten as it made no difference.

a couple of years later a me/cfs doctor found antibodies against gluten in my stool.
Now when I knew for sure, I stopped eating gluten completely. And slowly my troublesome digestion improved.

And- when gluten was eliminated, I would slowly discover other things I had an intolerance against. As the digestion was all over the place before, it was almost impossible to find a pattern. But when it calmed a bit it was more easy to see what other things I did react against. For example- there are a fair amount of gluten-free alternatives I don’t tolerate either

 

[keepswimming]

@Hufsamor interesting, thank you. I think I am finding something similar, I've had digestive trouble for years but now I've eliminated gluten I'm trying to pinpoint the causes. Like you gluten free products don't suit me - I've realised I have problems with corn/maize which is in many of them.

 

[xebex]

I am very strict but my sister is officially celiac so although I didn’t show up as celiac I treat myself as if I am.
Gluten free diet reduced my daily low grade migraines, depression mood swings and body aches but doesn’t make a difference to PEM.

I also ended up having to be sugar free and low histamine and no processed food to reduce brainfog anxiety and toxic hungover feeling. Still no affect on PEM though.

 

[hapl808]

I eliminated gluten and corn for years. If anything, corn bothers me more than gluten. Neither is an immediate reaction, but both generally made me feel unwell compared to when I removed it.

Just recently I started adding back rye bread (real rye bread with no wheat). While rye does have gluten, the proteins in rye are different than the proteins in wheat. I may experiment with wheat again, but last time I tried I didn't get a great reaction. I'm guessing there's a protein in wheat that's bothering me but it's not gluten.

Gut health is a huge issue for me. Unrelenting acid reflux that only occurs when my health worsens / PEM episodes / etc.

 

[keepswimming]

I eliminated gluten and corn for years. If anything, corn bothers me more than gluten. Neither is an immediate reaction, but both generally made me feel unwell compared to when I removed it.

Oh that's interesting as it's the same for me. I read corn has a protein called zein which is similar to gluten so I wondered if that could be the culprit... But who knows.

Do you find cornstarch any better than whole corn? I need to experiment, but I read that because cornstarch has the proteins removed it may be easier to eat. Cornstarch is in EVERYTHING so if I can tolerate a bit it would make life easier.

 

[Tammy]

You might have to avoid gluten for quite some time before you notice any difference.

This was my experience.

 

[hapl808]

Do you find cornstarch any better than whole corn? I need to experiment, but I read that because cornstarch has the proteins removed it may be easier to eat. Cornstarch is in EVERYTHING so if I can tolerate a bit it would make life easier.

I just avoided cornstarch completely so I don't really know? High fructose corn syrup bothers me and sugar does not, so I'm not sure if the protein is involved? Fresh corn and corn chips and such all bother me - increased heart rate, digestive issues, etc.

My diet is pretty restricted - I eat boiled or roasted chicken and fresh vegetables, some dark chocolate, oatmeal, etc. Nothing prepared or prepackaged.