Last spring I went to get a haircut.  I'm sort of pals with the woman (her name is Awura) who cuts my hair, and this time she was enthusing about how she'd gone (sort of) gluten free, and how amazingly much better she felt. 

I ran down a long list of symptoms of celiac disease, and she said she'd had all of them. 

Also, she has Graves, an autoimmune thyroid disease.  Celiac disease is an autoimmune disease - it's an immune reaction to dietary gluten that triggers an autoimmune process, and other problems. 

If someone has one autoimmune disease, they're likely to get others. 

So already having an autoimmune disease and lots of symptoms of celiac disease, it seems likely she does have celiac disease. 

But - she found out about the gluten-free diet from a book, Grain Brain - not from a doctor. 

So, she is still eating gluten to some extent!

People who have celiac disease are supposed to consume no gluten, to the best of their ability.

I've seen this many times.  People discover they have a problem with gluten via alternative-medicine ideas, or a popular book. 

So they sort of quit gluten, but not really.  If they were properly diagnosed with celiac disease by a doctor, the doctor would tell them to eat no gluten, that they should not eat wheat, barley, rye and probably oats (or foods derived from those grains).  And the authority of the medical diagnosis means something to people. 

It's a big problem with these "alternative" or "popular" approaches to health.  People don't take them all that seriously.  These books and so on are under-diagnosing people with serious problems.  Celiac disease can kill people.  It raises the risk of several kinds of cancer. 

I suggested to Awura years ago that she might have a gluten problem.  But it just went in one ear and out the other :( 

This fall when she cut my hair again, she was still eating gluten now and then.  She says it makes her vaguely sick, but she does it anyway. 

From my experience and those of many others I've heard from, this probably means that she's still eating enough gluten in an ongoing way so that her body suppresses obvious symptoms when she eats a major amount of gluten.  If she really went gluten-free for an extended time and then ate a major amount of gluten, she'd likely get really sick. 

I told her she was running an increased risk of cancer and other problems as long as she kept on eating gluten - that she likely has celiac disease even though she hasn't been properly diagnosed. 

She said she didn't think she had celiac disease.  I told her people can have celiac disease without the obvious "classical" symptoms. 

I hope it sinks in eventually.  Often people with celiac disease seem to be addicted to gluten. 

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Comment by Luara on November 20, 2014 at 10:48am

Celiac disease often does not have the typical symptoms.  People can even have celiac disease without any symptoms.  That's why the diagnosis is so often missed.  People with celiac disease have gone undiagnosed or misdiagnosed for decades. 

The delayed-reaction food allergies also are not generally obvious, and that's why people can have them and not know it.  The best available way to diagnose them is with a hypoallergenic elimination diet followed by food challenges.  But this process has a lot of pitfalls. 

There are diagnostic methods for delayed-reaction food allergies that look promising from research, but nothing clinically proven yet.

Comment by Michael Penn on November 20, 2014 at 9:52am

I don't know much about my family because I was a step child and almost everyone on my mother's side of the family is dead. I do know that I don't eat properly and I have wondered about Celiac disease, but I do not have all of the symptoms. Everything I look up, I do not have all of the symptoms. As far as I know I have no food allergies.

Comment by Luara on November 20, 2014 at 7:00am

@Michael Penn

Celiac disease is more likely to be causing some of your problems if you have other autoimmune diseases or there's autoimmune disease in your family history.

Similarly, delayed-reaction food allergies are more likely to be causing some of your problems if you have other allergy problems or there are a lot of allergies in your family history.

Comment by Michael Penn on November 19, 2014 at 3:20pm

I'm still pursuing my health issues and have no satisfactory answers. I have a gastrointestinal disorder that has responded to Probiotics like Ultimate Flora and digestive enzymes, but my doctor thinks along lines of GERD and gastritis. Wrong on both counts. I have neither of them. Abdominal discomfort is always present and pants purchased this year are getting tight on me. This also makes me more tired all the time now.

I do take allopurinol for gout and that is now under control. Doctors are funny. My gout is no longer gout. I found out a couple of years ago that they now call it "gouty arthritis." In other words, you can take an OTC med like Alieve for arthritis as a pain med, but my med is designed to make me piss away excess uric acid. If I took Alieve it could cause a gout flare up. I don't see that the 2 are related really, and it's just a new classification.

Comment by Luara on November 17, 2014 at 6:27pm

FT, all I meant is that it's not clear how many of the people who think they are healthier on a gluten-free diet, actually are.  When people are eating gluten, they can have subtle symptoms that aren't obviously linked to gluten - they don't particularly notice anything when they eat it. 

But anyway, my point in this blog post is that these self-help or alternative-medicine diagnoses underdiagnose a lot of people who actually have celiac disease. 

In reality, they should be very careful not to consume gluten! 

Skeptics often think in terms of self-help or alternative medicine overdiagnosing people - telling them they have problems they don't have. 

But in terms of health, underdiagnosing is more dangerous. 

I have encountered several people who seem likely to actually have celiac disease - who have found out gluten is not OK with them - but they continue to eat it sometimes - putting themselves at risk of serious disease. 

There are probably millions of people in the USA like this - people who have celiac disease but don't carefully follow a gluten-free diet. 

Comment by Luara on November 17, 2014 at 1:57pm

FT, There are people who are gluten sensitive without having celiac disease.

Gluten sensitivity is sometimes very severe, as in gluten ataxia - people who can't walk straight after they've been "glutened".

A lot of gluten-caused problems including celiac disease are still very underdiagnosed. 

So I don't know to what extent people who self-diagnose with gluten sensitivity are making things up. 

Comment by Luara on November 17, 2014 at 10:12am

Barbara,

Since you haven't been tested for celiac disease by a doctor, the same concerns apply to you.  If you do have celiac disease, you're running a higher risk of some of the many problems that are caused when celiacs eat gluten.  Lymphoma, colon cancer, osteoporosis - there's a long list of diseases that are associated with eating gluten, for celiacs. 

If you don't want to go through the gluten challenge process, the safe thing would be to completely eliminate gluten.

Actually, since you are still eating gluten, a doctor might recommend doing the blood tests for celiac disease without a gluten challenge.  The blood tests would show you do have celiac disease if they're positive.  If they're negative the doctor would probably recommend you do a gluten challenge, but of course you can just pass on that. 

There's a gluten sensitivity test at Enterolab.com which doesn't require that you be on a gluten-containing diet.  It's not a celiac test exactly, but they measure various antibodies that are associated with celiac disease and they can give you an idea of whether you might have it.  It works for years after people go gluten-free. 

I got that test.  I had 8-10 times the IgA antibodies to TtG and gliadin, that they considered normal.  So I decided I probably had celiac disease and I should not eat gluten.  At all.  It would have been hell to do a gluten challenge. 

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