My gluten experiment

[faithberry]

After 5 years off of gluten - except for very recent exposure to tiny amounts - I decided to do a gluten experiment and eat a piece of chocolate cake. It wasn't a pure experiment because I also happened to eat some rice chips with sesame on the same day.

When I went to bed - about 12 hours later - I had a full on attack of moderate burning in my thighs that lasted about an hour and some tingling in my toes. My lower back/spine got very still too and the nerves irritated or so it felt like. I remember when I first got "ill", I had these attacks every night plus shooting electrical pain. Also, I would get so stiff I could not bend over. I was even evaluated for Spondylitis.

This experiment confirmed for me that I most like do have gluten-induced neuropathy and that this began before any MC symptoms. In fact, my MC symptoms that occurred later were mild. Caught it early. Of course, my experiment wasn't pure so I could be wrong. But I do have the DQ 1 (double) more commonly associated with gluten neurological problems. I also had elevated AGA the last time there were checked, even though I don't eat gluten.

What I don't understand is why I also get the same reactions of burning in the thighs - though usually not as strong as last night - to eating certain fruits (nectarines, bananas - the high histamine ones) and cheese (also high histamine).

Do you think I sustained irreversible nerve damage from my gluten sensitivity? It's strange though because it only occurs in relation to food. Or do you think the gluten sensitivity induced some type of irreversible auto-immune reaction?

I'm not having any colon reaction. My first line of reaction seems to be neurological. If I kept eating cake, I probably would have colon reactions in the not too distance future. But I'm not going to go there.

It was a worthwhile experience, which seemed to confirm that gluten is the original source of these neuropathy type problems.

Thanks for any insights you can share about this.

[tex]

Do you think I sustained irreversible nerve damage from my gluten sensitivity?

I believe you're right, because I certainly have permanent neurological damage that couldn't come from anything other than gluten, (IOW, I'm not a diabetic, but I have the same type of peripheral neuropathy that diabetics often develop). Also, I am no longer able to sense hunger pangs, due to nerve damage in my enteric nervous system, (or maybe the disconnect is in my central nervous system). I sometimes feel pain sensations in my hands/arms/feet/legs, for which there is no reason, and I do not always feel pain, when I should.

IMO, your experiment provided pretty clear evidence of a neurological response to gluten.

Tex

[Joefnh]

Faith that's and interesting experiment with a very telling result. Its amazing how many people are seeing neurological symptoms with gluten intolerance.

I have to wonder is it the actual gluten that's the issue or the immune system reaction to the gluten that results in the neurological issues.

--Joe

[faithberry]

Tex,

Thanks for telling me about your neurological damage. The great thing about this forum is the chance to hear other people's stories and to confirm one's own experience. I was pre-diabetic briefly, not more than a year. I corrected this quickly via diet. So that could be an additional factor as they say neurological damage can even happen at that stage. But my gluten experiment seemed clearly confirm that gluten is a far more certain factor.

The confusing part for me is that I do get neurological reactions to other foods besides gluten. I can't figure out what that's all about.

Joe, That's an interesting point as to whether it's neurologically based or immune system based.

Thanks, I really appreciate the feedback from both of you. I'm definitely not going to be experimenting with gluten anymore!

[Gabes-Apg]

i recently did something similar, it was a good reminder (and motivator) to avoid gluten etc.

i have not had the urge to add new ingredients to my ingredient list, i think my taste buds and brain are retrained!

your example is another way our bodies let us know what is happening....