Why Test for Celiac Disease?
It's Something You Ate...
You, or a child, are suffering from digestive issues. They may be moderate, or severe, or even mild, but they're there. You want them gone. Anyone would.
You know it has to be something you're eating. And perhaps you've even begun a food diary to help narrow down the potential trigger foods. Gluten is high on your suspect list. You've heard the hype, you're hurting, what's the harm in just dropping it from your diet?
What is Celiac?
Celiac Disease is an autoimmune disorder which causes the body to attack itself instead of properly digesting certain food proteins. The offending proteins are called "Gluten" and are found in all varieties of wheat, barley and rye. Some oats contain gluten because of the way they are grown and processed, they may be 'contaminated' with gluten from other grains.
People who have Celiac Disease usually complain of relatively vague symptoms. They have digestive dusturbances of any kind, skin rashes which are sometimes identified as Dermatitis Herpetiformis, lethargy, fatigue, and easy bruising. They may also suffer from peripheral neuropathy (nerve damage which causes a tingly 'pins and needles' sensation), osteoporosis and anemia. Children with undiagnosed Celiac Disease my be classified as "failure to Thrive". Both Adults and children frequently experience severe weight loss, but some actually gain weight. The hallmark symptom is a 'beer belly' or "toddler tummy" which doesn't really go away. The belly will protrude from bloating which the individual comes to assume is normal.
Many of these symptoms are caused by malnutrition. This doesn't mean the individual isn't eating, many eat quite a bit every day. The problem is that the parts of the digestive tract that help break down and utilize food are damaged by the disease, so instead of processing and utilizing nutrients, water is drawn into the intestines and the food and nutrients it provides is quickly flushed out of the body.
I'm Sold! Why Not Just Give it Up?
I think we'd all agree that Celiac Disease sucks. And if you suspect gluten has been steadily attacking your intestines, causing damage and discomfort over a period of time, you're probably anxious to get it to stop. Break the bread habit, cross crackers off the shopping list and skip half the cereals on the shelf. Doctors are expensive. Testing is expensive, healthcare costs are on the rise and the worse you feel, the harder it is to work and earn those all-important-dollars necessary to make that copay.
Just quit, right? You can give up gluten, if it works you'll know it's a problem, and go from there. It sounds good in theory, but in the end, it's not such a great idea.
For starters, the curious thing about Celiac Disease is that it's only diagnosable while the damage is still going on. The body is a miraculous thing. Once you stop consuming gluten, the mutinous damage will stop. Your intestinal lining will slowly begin to regenerate and fix itself. Your blood will no longer contain markers indicating Celiac Disease. A biopsy of your intestines will be inconculsive. Your doctor will likely shrug and say "Maybe it was just stress." (Okay, your doctor might be more thoughtful than mine. But mine was awfully fond of that phrase.)
If you give up gluten without a firm diagnosis, you will never know if the real problem was Celiac Disease or a less-serious gluten intolerance.
Who Cares? Gluten Free is Gluten Free, Right?
While Gluten Intolerance and Celiac Disease sound like the same thing, there is a huge difference. Strike that. The difference may not seem so huge to you. Just trust me, it's there and it's important.
The common factor in the two conditions is the treatment. Whether it's gold-standard Celiac Disease or 'just' Gluten Intolerance, the only treatment available is total avoidance of gluten grains. This leads one to wonder why, exactly, I want you to go to the doctor and have them draw blood and then possibly risk sedation and an intestinal biopsy.
The answer is that gold-standard diagnosis. Once you develop Celiac Disease, it's for life. It's never going to go away. You can develop it at the age of 10, give up gluten for 10 years, start eating it again when you're in college and are convinced you're invincible, and then when you're 35 discover that while you weren't all that symptomatic, 15 years of intestinal damage is no longer completely reversible and you have osteoporosis, dental problems, infertility and the beginnings of colon cancer all related back to that 25 year old Celiac Disease diagnosis. Celiac Disease is for life. It means total avoidance, for life.
Gluten Intolerance, on the other hand, is considered an intolerance. There are lots of theories surrounding it and plenty of opinions about gluten in general and whether or not it even belongs in the human diet. I'm not going to get into theories or speculate on who's wrong or right. From a medical standpoint (as my current understanding goes) if you are eating gluten, and there is no damage present in the intestinal tract and you are not producing antibodies, then gluten may cause symptoms but not damage. What that means is that you have a lot more choice in the matter. If you have a simple intolerance, you will definitely want to give up gluten. But when you're at a party and you're starving and the fruit and cracker tray gets passed around, you might feel comfortable taking a risk with those apple slices. If you have Celiac Disease, the cracker crumbs will cause your immune system to mutiny again. But if you have an intolerance, the worst that will happen is that you will develop symptoms and recover.
As far as your physical reaction, the risks are the same. But if you have Celiac Disease, the long-term risk of actual, physical damage is too much.
It's also worth noting that Gluten Intolerance may not be for life. Some people believe that it is a precursor to Celiac Disease. For that reason, it makes sense for someone who once suffered from Gluten Intolerance to be tested regularly for Celiac antibodies if they ever choose to go back to consuming gluten. Again, for someone with a simple intolerance, their choice will only affect how they feel. It won't have long lasting physical damage.
What Does Testing Entail?
Going to the Dr is scary. But not knowing, not having answers, is scarier.
There are two steps to the diagnosis of Celiac Disease. The first step is to get blood drawn. No one really likes this process, but it's not too bad. Drink a nice full glass of water and try to get to the lab well after opening, but before the lunch rush so there isn't much of a line. The doctor will be requesting a TTG, Antigliadin, and total serum IgG test.
Basically, the Celiac panel looks for gluten antibodies and makes sure that you have enough antibodies overall for the test results to be accurate.
If the blood test is positive (or inconclusive) the next step is to schedule an endoscopy. This is the one that scares people, but it really isn't bad at all. You will go in with an empty stomach, go to sleep and wake up with a slightly sore throat. While you're asleep, the doctor will go in with a thin flexible tube and take several biopsies of your intestinal lining. These biopsies will then be examined under a microscope for tell tale signs of Celiac Disease (or any other anomalies).
Keep in mind that while Celiac Disease or Gluten Intolerance is what you are expecting to have diagnosed or ruled out, if you have digestive problems, then there are a variety of non-gluten causes. Getting an accurate diagnosis is your goal. So having these tests run really is worthwhile. The endoscopy is not Celiac specific, it will show other problems as well. A good doctor will be looking with an open mind. Getting tested means finding the right diagnosis.
I Got Tested, They Found NOTHING! Now What?
You got tested, good for you! If the results were negative and your biopsy looked okay, then you've tried everything you could to get that gold-standard diagnosis. If you're still convinced gluten is the culprit, give it up. Don't look back, don't think twice. Yes, wheat is a huge part of the Standard American DIet. But, that doesn't mean that you can't eat healthfully without it. You don't even need expensive pseudo-gluten products to live well. Just make sure that you continue to eat a balanced diet, substituting a variety of carbohydrate sources for the building block that used to be wheat. If it works, great! You can live well, and eat freely. Gluten-freely, that is.