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Gluten intolerance may really be immune dysfunction

nytimes.com

41–50 of 62 posts

Re: Gluten intolerance may really be immune dysfunction

#41

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 w…

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

Re: Gluten intolerance may really be immune dysfunction

#42
Interesting story. I had a friend that didn't have celiac disease, but genuinely had some form of gluten intolerance. It mostly just caused her terrible cramps. For about six years, doctors couldn't figure out what was causing it, so she had changed her diet to be nearly carb-free, and went on with her life. Problem? Hint: she liked camping.

Ending up being a parasite she likely caught on a camping trip, which also brought on a combination of a fungal and viral infection. She was getting desperate, so she had went to an osteopath which ended up making the discovery. Her PCP prescribed a 4-week regimen of heavy meds to kill off the parasites and fungal infection, and now she's back to eating normally.

Re: Gluten intolerance may really be immune dysfunction

#43
My continued hunch is that is not gluten, but a general collection of foods that cause inflammation.

Commonly, these foods are made up of carbohydrates (such as wheat) but there are fats and proteins as well.

Not to sound too crude, but if you fill your gullet full of inflammation-causing food day in, day out - yes, you will not feel well.

If you are not at all an active person - and you're consuming 2-3 meals of over 1500 calories, well - maybe you should point to that is a potential problem?

Simply removing gluten isn't going to make your day too much better if you are washing down GF products with sodas and eating trans fats.

Re: Gluten intolerance may really be immune dysfunction

#44

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 w…

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.

Re: Gluten intolerance may really be immune dysfunction

#45

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 w…

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

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

Re: Gluten intolerance may really be immune dysfunction

#46
post #44

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 w…

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,…

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

Re: Gluten intolerance may really be immune dysfunction

#47
post #28

The editorializing of the headline here is changing the argument. The article (titled "The Myth of Big, Bad Gluten") is arguing that gluten may not itself be bad, but rather the body's reaction. This new title implies gluten intolerance is a myth, which is contradicted by stuff like http://www.ncbi.nlm.nih.gov/pubmed/21224837 .

Perhaps the submitter was trying to make the title less baity, in accordance with the HN guidelines. (Submitted title was "Myth of gluten intolerance".)

We've changed it to something that uses neutral language from the article. Suggestions for a better title are welcome.

Re: Gluten intolerance may really be immune dysfunction

#48

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 w…

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

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.

Re: Gluten intolerance may really be immune dysfunction

#49
post #46
post #44

Earlier quoted context omitted.

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,…

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

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?

Re: Gluten intolerance may really be immune dysfunction

#50
The article mentions hygiene in passing, even though it seems like the Hygiene hypothesis (https://en.wikipedia.org/wiki/Hygiene_hypothesis) deserves at least a paragraph.

I'm not claiming that the Hygiene hypothesis is true -- we clearly don't know that. But I think it definitely deserves further consideration.

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