I Think I Have Coeliac Disease, What Do I do?

Get off the Internet and go to your GP. Seriously.

Coeliac Australia runs a Coeliac Awareness Week every year between March 13 and 20, with each year having a different theme. This year the theme is testing, so I thought I would run through a few of the different tests that are required to medically diagnose Coeliac Disease (CD) and more importantly, why you need a medical diagnosis.

Coeliac Disease is an auto immune condition whereby a suffer cannot digest gluten. Gluten is a protein found in wheat, rye, barley and oats. So any foods with these ingredients or ingredients derived from these grains are off the menu. I won’t go into too much detail here, as there is such an abundance of information out there on gluten, thanks to the rise in popularity of the gluten free diet. If you think you have CD its really important to go to your GP and discuss getting tested.

But, I went to my preferred health care provider and they told me just to stop eating gluten. Isn’t that enough?

No, it’s not enough. Gluten is in a large number of every day foods and deciding to eat gluten free without the appropriate tests could needlessly restrict your diet and mean you might miss out on a number of key nutrients.

Recent research has also revealed that of those who go on a gluten free diet, most do not see their symptoms resolve. For a large number of such people, the culprit is in fact a group of carbohydrates called FODMAPS. So they would need appropriate diet counseling to manage this, and a gluten free diet is not always indicated here.

The most important reason for medically diagnosing CD is this: if and when a vaccine is developed only those with medically diagnosed CD will be eligible. This means you need to be able to provide evidence of having had the tests. No evidence, no vaccine.

What tests will I need to have done?

There are three main tests that are used to determine CD:

Blood Test: measures levels of a particular antibody, the levels of which are usually higher in people with untreated CD. This is usually the first step in the screening process. If you get a positive result, this is not indicative of CD, you will need to have a small bowel biopsy to absolutely confirm your diagnosis.

Biopsy: a small tube is inserted into the small intestine (through the mouth) and several small scrapings are taken. These are then checked to see if there is any damage (villous atrophy).

Gene: In cases where a blood or bowel test is inconclusive, a gene (HLA) test may be undertaken to help interpret the results of the other tests.  It can also be used when a person has already commenced a gluten free diet prior to testing. If this comes back positive, the person will be asked to do a gluten challenge, then under go a small bowel biopsy.

More information on these tests can be found here.

Am I going to have to get a bowel biopsy? I don’t want to, its time consuming/uncomfortable/embarrassing etc.

Most probably. Even if a gene test comes back positive, your GP will most likely want to have a look at the health of your intestine as there is almost always some damage to the lining of the intestine in CD (and it can definitely rule out any parasites that might be causing your symptoms). Once you are on a gluten free diet, your GP will also need to check to make sure your intestine is healing, so you might need to have another one 6 or 12 months after starting a gluten free diet.

The procedure it’s self takes about ten minutes, and is done under light sedation to help minimize any discomfort.

I only feel a little unwell, surely I don’t need to go through all of that?

It doesn’t matter how sick/not sick you feel, it’s really important that you get a definite diagnosis.

Coeliac Disease has several associated conditions that won’t necessarily be picked up on their own. For example, those with CD are at a higher risk of developing osteoporosis, and there are no outward signs of this disease until it is well progressed. If you have CD, there are screening programs in place to help pick up these associated conditions, so you will be able to manage them better.

So, if you think you have Coeliac Disease, DON’T change your diet and make an appointment with your GP to discuss the best course of action for you.

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