Why a correct diagnosis matters to me

In my research about Celiac disease I've encountered some debate about the value of getting a diagnosis. Some people advocate trying a gluten free diet and not pursuing a diagnosis if the diet "works". Here are some reasons why this is bad advice.

Need to rule out the Placebo effect

First, there are reasons why going gluten free might create the illusion of resolving your problems, when in reality nothing has changed. When your life contracts into a miserable constellation of health issues, there is a lot of internal motivation to find a way to make it stop. Sooner or later you may try a gluten free diet. It seems reasonable that if your symptoms clear up, you must have gluten issues. Case closed. Nevertheless, correlation does not equal causation. The placebo effect is a very real and powerful phenomenon. Celiac disease is diagnosed through blood work, biopsy and genetic testing; not through simple observation.

Need for differential diagnosis

Celiac disease is a systemic condition that can express itself with many possible symptoms -- symptoms that are shared with many other diseases and systemic health conditions. So while Celiac might be a possible diagnosis, so might Crohn's, Colitis, AIDS, Cancer or a host of other problems. It is important to know exactly what the problem is.

Celiac is arguably the best case scenario out of any number of possibilities because it is treatable solely through diet. It would be tragic to assume you have Celiac and go on with your life without realizing that you have a far worse condition left untreated.

In my own case, I was convinced that I had Addison's Disease until the blood work ruled that out. I am still waiting on a positive or negative Celiac diagnosis.

Finding my place on the spectrum of gluten disorders

Symptoms are shared between Celiac disease, gluten sensitivity and wheat allergies. If you are on the spectrum, it would be helpful to know whether or not you have an autoimmune condition.

Celiac is hereditary

If you have Celiac then your immediate family members are also likely candidates. It's important to know what you are dealing with, especially if you have kids.

Conclusion

Judging from posts on various Celiac forums, resistance to getting a diagnosis often seems to stem from distrust of the medical community, fear of the endoscopy procedure or simple denial that one's health issues need to be addressed.

It's true that getting diagnosed may involve some unpleasant experiences. The risks of not pursuing a diagnosis seem far worse.

I want to know.

Don't go gluten free if a diagnosis matters to you

If you suspect you have Celiac disease and a proper diagnosis is important to you, then it is important to keep eating gluten. This may seem counter-intuitive at first, but the reason is simple: going gluten free will interfere with your test results. Talk to your doctor and get tested before going gluten free.

Currently there are two ways to test positive for Celiac. Your blood can be tested for the presence of the relevant antibodies or your small intestine can be biopsied to directly observe damage to your villi. Often both methods are used together in order to confirm a diagnosis.

The problem with going gluten free before you have been tested for Celiac is that your body will begin to heal. The antibodies in your blood will diminish or disappear, depending upon how long you have been gluten free. Your villi will begin to heal almost immediately. While this will provide you with relief from the symptoms of Celiac, it will make it harder to receive a correct diagnosis. The reliability of the tests will diminish in proportion to the length of time you have been eating gluten free.

If you have been eating gluten free and you want a diagnosis, you will need to go back on gluten for a period of time. This could be several weeks to several months, depending on how long you have been off gluten. Going back on gluten is called a "gluten challenge". You are re-introducing gluten into your body to see what happens. In order to get a positive diagnosis you need will need to "un-heal".

Many people who have undiagnosed Celiac and have been eating gluten free are simply not willing to conduct a gluten challenge. In many cases, the longer you have been gluten free, the more difficult it is for your body to handle it. For many people gluten intolerance increases after being gluten free. This means that the symptoms will be much worse. And for those who have been off gluten for several weeks or months, the idea of going back on gluten for several weeks or months in order to get a proper diagnosis is inconceivable.

This is why it is better to keep eating gluten if you suspect you have Celiac. It will give you the best chance for a correct diagnosis. Eating gluten means you will not have to delay testing or conduct a gluten challenge. It will let you begin the healing process sooner. See your doctor, get tested and scoped. Then you will know. Then you can stop eating gluten permanently.

Note: False positives and false negatives exist. Genetic testing can help to clarify your situation if blood work and biopsies do not result in a clear diagnosis. Genetic testing can tell you if you have the mutations necessary for Celiac to develop, but it will not tell you if you actually have Celiac.

Suspecting Celiac disease

Background

Despite having some serious medical problems in my infancy, I never needed to pay too much attention to my overall physical health. I never had to watch what I eat or spend much time monitoring my overall fitness. I was happy to spend most of my time in the realm of thoughts and ideas, focusing on my work and letting my body regulate itself.

Almost a year ago I started to develop a constellation of symptoms that -- fast-forward to today -- have become the main focus of my life. Apart from the time-devouring reality of living with these symptoms, I've spent countless hours researching and investigating possible explanations for what is happening to me.

Current status of diagnosis

Things seem to point to Celiac disease and I am currently undergoing a gluten challenge of several weeks leading up to testing via blood work and biopsy.