Tag Archives: diagnosis

Featured, Science

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

Leave a comment

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

2 Comments

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.