[Scramblejams]

My wife doesn't have celiac disease. Her knee suffered some damage some years ago. If she adds gluten to her diet, it swells up like crazy and hurts. If she removes gluten from her diet, within two days it shrinks back down and looks like a normal knee again and feels (mostly) fine. I won't pretend to understand how gluten affects everyone's body, but I know something about what it does to hers.

It's odd to use the word "myth" in the title, but then leave the door open in the penultimate paragraph to immune system issues being wrapped up in all of this because I think it's entirely possible that for some people (like my wife), the immune system is counterproductively stimulated by gluten.

Having said that, I think a lot of this current GF stuff is simply a fad. But fad or not I'm grateful for it because it gives my wife, who really does have a problem with gluten, many more options when shopping than she had just ten years ago.

[Frondo]

All my life, I ate a ton of bread, wheat products, etc. I used to love baking, I'd bake my own bread a couple times a week, etc.

Several years ago, I was cautioned to cut wheat down to 10% of my food intake, at most. The person I got this advice from wasn't a nutritionist, wasn't a doctor, had no specific medical training, and didn't tell me what to expect or what was likely to happen. (The circumstances were weird, let's just put at that.)

I grumbled but said I'd give a try, with no expectation about what would happen. I bought a bunch of gluten-free varieties of foods and spent a week eating gluten-free bread, supplementing meals with rice instead of pasta, etc. My grain intake didn't change, just how much of it was wheat-based.

Within a few days, I realized that 1) I'd been experiencing bloated feelings in my belly for years, now gone. 2) I suddenly had a lot more energy. 3) Various of my minor joint pains (which I'd chalked up to "well, I'm getting old") went away.

So I stuck with it.

Within a month, I realized I'd lost about 10 pounds--again, no less grains, just less wheat.

After a year, I noticed that I wasn't getting sick any longer. I used to get pretty bad colds a couple times a year. That has now stopped.

Several years later, I feel like I did in my 20s, despite being near 40.

Would I go back to eating wheat regularly? Nope. I've tried, I get bloated for a few days after a big ol' slice of pizza, and if I slack off and eat lots of wheat for a few days straight, I'll start to get the scratchy-throat-feeling that I used to get when I'd get one of my regular colds.

Again, no one told me to have any expectations about going gluten-free. I didn't even know "gluten-free" was a diet--this was years before it became a fad diet--except for my celiac friend who couldn't eat wheat (poor thing, I used to think.) I certainly didn't have any idea what it would do for me.

So when these articles come out that say non-celiac gluten intolerance is bunk, I think, well, fine, but something went on with me, and it doesn't add up that it's all in my head.

[dangero]

How do you know you don't have celiac disease? Sounds similar to my experience and I do have celiac disease.

[Frondo]

I don't know. I never had any reason to think I did. I would have described my quality of life as very good before I stopped eating wheat--just better now.

I did just look over a couple of lists of symptoms for celiac disease, and the only ones (fatigue and joint pain) that I could relate to, even in a small way, would be on the adult symptoms checklist--none of the childhood symptoms fit me in any way.

But of those two, I wouldn't have described either one with any kind of severity, certainly nothing worth seeing a doctor about. I'm pretty active, and I usually chalked being tired up to that, and the joint pains just from sport/outdoor activities (and getting older). Now I'm a lot less tired and sore.

I was always under the impression of celiac as being pretty severe, like, you'd know something was wrong, even if you didn't know what was going on.

Is that not the case? Can you have "mild" celiac?

[dangero]

I think this is a common misconception. People have varying symptoms, but it's important to remember that those are symptoms and may not equate the the damage done to your system.

I was like you re:symptoms, but instead of going gluten free, I got an allergy panel done and celiac disease came back. I was actually still kind of disbelieving since my symptoms seemed light, so I followed it up with a stomach biopsy to confirm and I discovered I do have it.

[Frondo]

See, I wouldn't have even thought to seek out medical advice, I literally didn't think there was anything wrong except getting old.

The person who told me to cut wheat down wasn't a doctor nor a nutritionist, and the advice kind of came out of nowhere (not related to me complaining about my aching knee or anything).

I likely won't get tested at this point, because it sounds invasive, and I am (as before) happy with my quality of life, but you do raise an interesting point.

[Abraln]

An allergy test can be as simple as a doctor dipping a small plastic spike in some concentrated allergen, then poking you (lightly, not enough to break the skin, just enough to leave a mark that will fade in a few hours) with both that and a "control" spike, then comparing the redness after a short wait. Pain wise, it is no worse than an ant bite in my experience, and I was tested for the 50 most common allergies at once (we were trying to ID the source of some symptoms I was having).

IANAD though, so testing for celiac disease may require more.

[TD-Linux]

What you describe is a common symptom of celiac disease. Did you get tested?

[Scramblejams]

No, she reviewed her symptoms (there are some others I didn't mention, they're just not so obviously observable as her knee inflammation) with a doctor and was told they didn't line up with celiac. Just seemed like a mild allergy to gluten, she went off it, problem solved[1].

Even if the doctor was wrong and she has celiac, it's very manageable so there doesn't seem to be much incentive to go to the trouble of a proper test.

[1] Okay, "solved" paints too neat a picture. Eating truly GF can be a pain in the neck, the stuff's absolutely everywhere. But fortunately the GF fad has, like I said, made that a bit easier.

[dangero]

And just to add to that, the blood test can be unreliable. A stomach biopsy is the best way to verify the condition.

[tiatia]

I doubt that. Remember a paper I read about how a stomach biopsy may not necessarily always find a gluten intolerant.

I nearly died on that shit (Gluten). My life would have been very different if it hat been picked up in my teens. In the end I figured it out myself when I was basically dying (they looked at me when I waked into the hospital and said: Mate, sorry to tell you but the first thing we have to do is an HIV Test. This may give you an idea how I looked.) I know my form of intolerance is rare (1:10.000 to 1:100.000).

My life is different now. I feel better than ever.