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Why self-diagnosis of Celiac Disease and gluten intolerance is so common

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And why you should probably give the benefit of the doubt

In a discussion at Reddit, someone pointed out that wheat allergies are actually rather rare, and suggested that most people who claim gluten problems are just making things up.

This is my response, or why self diagnosis is so common and why there is probably merit to those conclusions:

Technically, wheat allergy is relatively rare compared to Celiac Disease and non-Celiac gluten sensitivities. Allergy is an acute IgE reaction, Celiac and non-CD sensitivities tend to be mediated by the slower acting IgG and/or IgA antibodies. However, that is a lot of technical stuff to explain to your server, so it is usually a lot more convenient for gluten sensitive individuals to just say they’re allergic. “Intolerant” doesn’t quite carry the importance of gluten sensitivities, because there is a strong and direct correlation between gluten consumption in sensitive individuals and all-cause mortality. That hasn’t been established so clearly with other types of “intolerance” originating from different mechanisms (ie, lactose intolerance)

Anyway, we can diagnose CD with intestinal biopsy, and we can diagnose non-CD sensitivities with blood serum tests. HOWEVER: Once someone has been on a gluten-free diet for a significant amount of time, the intestines heal and the blood serum drops to healthy levels. So you just can’t test someone for gluten reactions if they’re already on a gluten-free diet. It isn’t instant like an allergy, and it could take months or years of gluten consumption to build up the diagnostic markers our tests are looking for.

The puzzled doctor - a familar image to the gluten intolerant

Ultimately though, I see no reason why anyone would choose to adhere to such a restrictive and difficult diet unless they feel a significant subjective improvement. Instead, it is extremely common to hear stories from people who were diagnosed but choose to ignore their doctors’ dietary advice. Even with full knowledge of the disease, maintaining the diet is an extreme act of mental fortitude.

Self-diagnosis is an interesting… problem. American doctors are notoriously bad at detecting Celiac Disease. Many were taught that it is extremely rare and only effects children. Based on what we know from random blood sampling, about 1% of the population has Celiac Disease and only 5% of them have received a “real” diagnosis from a doctor. Non-Celiac gluten sensitivity is 5-10 times more common than Celiac, yet almost 0% of those patients will ever get an official diagnosis beyond IBS or CFS. An elimination diet can be conducted in a relatively scientific manner, but the data is highly subjective.

Granted, the gluten-free diet may act as a placebo in some cases. Anything could be a placebo, though, so why would anyone choose such a difficult placebo over cheaper and more convenient ones?

Random Stuff

Anti-vaccinationists give Gluten-Free a bad name

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Greetings Orac,

I thought this might be of interest to you in particular because you seem quite up to date with the mercury/autism/naturalism noise that is circulating the internet.

My name is John and I’m fairly new to blogging. I’m a big fan of http://scienceblogs.com particularly because there is so much skepticism of untested medical theory that passes as “wisdom” so often on the internet.

However, when it comes to my pet medical cause, Celiac Disease, I’ve noticed that the gluten-free diet often ends up associated with anti-vaccinationists and other sorts of medical quackery. Gluten returns as a search result 20 times on scienceblogs.com, almost exclusively in relation to tainted Chinese products or the latest fads in autism quackery. Celiac only returns three times: once as a user comment, once in a list of digestive conditions, and once in reference to the celiac trunk and not celiac disease at all.

What I would love to see for once, is a story about Celiac Disease and the medically verified effects of a gluten-free diet.

from my site https://www.glutenblog.com:

The University of Chicago estimates that as few as 3% of all affected Celiac Disease patients have been correctly diagnosed – and on average, those “lucky” few have waited 11 years from the onset of symptoms until the diagnosis was made.

Random sampling and records from nations with universal screening indicates that Celiac Disease affects between 1 in 90 and 1 in 133 people.

This meets the World Health Organization’s frequency criteria for universal screening, but we barely ever catch it. Everyone thinks of allergies: hives, asphyxiation, swelling – but the symptoms of intolerence are completely different.

The patient may be underweight or overweight, constipated or constantly suffering diarrhea. There might be an intensely itching skin irritation, or exhaustion, or symptoms of malnutrition and dehydration. Then again, there may be no symptoms at all.

The University of Chicago says there are over 200 possible symptoms of Celiac Disease and some of these include neurological disfunction or impaired development. Statistically, it makes sense for autistic patients to be tested for Celiac Disease but legitimate scientists shy away from the subject because of its exploitation by profiteering quacks. Maybe I’m wrong about testing autistic individuals for Celiac, but since the WHO says everyone should be tested for Celiac Disease, it would be a cost-effective compromise to at least test chronically ill patients for the disease.

Food

Wheat and Celiac Disease – Gluten Protein as a “Killer” Plant Defense

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What is Celiac Disease?

Celiac Disease is basically an intestinal condition caused by a negative auto-immune response to gluten, a protein that can be found in wheat, rye, and barley. This is distinct from an allergic reaction to wheat, but it is no less dangerous. The criteria for diagnosing Celiac is traditionally a small intestine biopsy: flattened villae indicate a positive confirmation. The intestines are damaged by auto-immune chemicals sent by the body to fight the protein, and eventually the intestine loses the ability to absorb food. The tissue damage also increases the risk of malignancies developing later on…

Although the condition has been historically defined by the status of the intestines, it really is a whole-body auto-immune condition. The emphasis has been shifting toward blood testing – and more patients are finding the diagnosis they need.

Untreated Celiac Disease is a killer, with mortality and malignancy rates out-pacing the general population by significant margins. Its also fairly common, affecting about 1% of the population.

Symptoms:

The symptoms are open-ended. The patient may be underweight or overweight, constipated or constantly suffering diarrhea. There might be an intensely itching skin irritation, or exhaustion, or symptoms of malnutrition and dehydration. Then again, there may be no symptoms at all.

Diagnosis Rates:

It shouldn’t be surprising then that it has been extremely under-diagnosed in the United States. The University of Chicago estimates that as few as 3% of all affected Celiac Disease patients have been correctly diagnosed – and on average, those lucky few have waited 11 years from the onset of symptoms until the diagnosis was made.

Random sampling and records from nations with universal screening indicates that Celiac Disease affects between 1 in 90 and 1 in 133 people. This is about 2.5 million Americans – and yet only about 75,000 are diagnosed.

Gluten Protein: “Killer” Plant Defense

Plants need to defend themselves, too. I think gluten is a great example of this plant defense, even if most of the human population has by now adapted around it. The protein is an incredibly complex chain of amino acids that includes a significant dose of opioid peptides (mimicking the effect of opiates in the brain) and phytohormones. In “normal” digestive systems, these are no problem – but in a compromised digestive system often accompanied by “leaky gut” you can start to see how the protein wreaks havoc on an unprepared immune system.

Food

Ouch, wisdom teeth

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As soon as my wisdom teeth popped up on the x-rays, we knew they were coming in completely wrong.  Not quite horizontal, they pointed right at my other molars and threatened to disrupt the entire row.

Luckily (I guess), they stopped moving for many many years.  They just sat there.  Maybe it was complications of Celiac and mal-absorption and there wasn’t enough nutrients to continue the final tooth project.  Whether or not that is the case, they are moving fast since I’ve been eating gluten-free for almost two years now.

I’ll spare you the details of the pain, but interestingly enough I will share that most of the pain isn’t in the actual teeth or jaw.  It actually took me a few days to realize exactly where the source of this was.  Its been going in waves for the last few months, but in the last week or two its been completely disorienting.

Fortunately, I was able to get appointments at the dentist for consultation, x-rays, and extraction within the next five days.   Hopefully, the surgery doesn’t hurt as much as the current status quo.