Once upon a time I had a conversation with a gentleman in his 50's whose wife had died suddenly a few days before. He was a recovering alcoholic, sober for maybe five years on the heels of a long and unfortunately remarkable 35 year drinking career. When I asked how he was doing, he said something along the lines of "If ever there were a good time to drink, now would be it." But he went on to say that he knew that just one drink would kill him, that he had come to accept that drinking for him just wasn't an option. He didn't mean that one drink would kill him on the spot, but that it would send him back down a path he had fought for so long to get off, and that he didn't think that he could recover again.
It took 8 months to come up with a definitive celiac diagnosis. A dear relative of mine simply opted to stop eating gluten and not pursue a diagnosis. The end result is that we both feel better, have more energy, and have better health overall. So why bother with all the tests?
Because the consequences to the body can be so major, many experts suggest pursuing an actual diagnosis for celiac
disease if you have symptoms or reason to suspect celiac, rather than just cutting out gluten in your diet. One challenge in doing this is that you’d have to keep eating gluten throughout the tests in order to lessen the risk getting a false negative result. If you have celiac and stop eating gluten, the inflammation in your gut will begin to heal and the antibodies will decrease, and any tests after that may not be accurate. If a biopsy of your small intestine doesn't detect damage, you'll be told that you don't have celiac.
I think there are two major reasons to go through the testing. The first is that you and your doctors can be on the lookout for problems that may occur from years of eating gluten before a celiac diagnosis happens. Some of these can be quite serious, including lymphoma and diseases caused by specific nutritional deficiencies. The second reason is largely psychological and could have an impact on your ability to start and stick with a gluten-free diet, which is the only treatment for celiac disease. If you allow yourself to believe that perhaps you are just gluten intolerant, thinking that you will just feel bad but not causing actual damage to your system, you may be tempted to cheat and eat the occasional piece of bread or birthday cake or whatever and suffer the consequences. If you know that cheating on the gluten free diet would be damaging your system and making you more likely to get really sick later on, I expect that you would be more likely to stick with it. Just like my 57-year-old alcoholic and his abstinence from booze, you will come to understand that eating any gluten is just not an option.
That said, I know people who have gone gluten-free without testing for really great reasons. One woman I know feels awful when she eats gluten and she doesn’t have health insurance to cover the tests. My dear relative knows that he has a genetic likelihood of having celiac, but he doesn’t like doctors and he’s a man of action and would rather just get on with feeling better than waiting around. I don't think he cheats, but he isn’t as careful about avoiding gluten when eating out as he could be.
And I know a number of people who have tested negative for celiac but have gone gluten free anyway, because they just feel better -- lots better in some cases. My friend Betty cured a persistent cough when she avoids gluten, but she tested negative for celiac disease. A co-worker of mine has terrible stomach pain and other symptoms when she eats gluten, but her doctor told her that she doesn’t have celiac. Another friend has dermatitis herpetiformus, a painful and itchy skin rash that is often found in people with celiac disease even though her tests came back saying she didn’t have celiac. Some people occasionally knowingly cheat on the gf diet and pay the price. The third is very strict and never cheats.
For me, I feel much like the alcoholic who knows he can't drink anymore. Because I have a definitive celiac diagnosis, eating gluten is just not an option, so I pursue the best way to live without it. In the end the decision to go through the testing process is a personal choice. And even if you test negative, that doesn't mean that you wouldn't benefit from a gluten free diet anyway.
There are good books that contain much more information about the medical aspects of celiac disease. I recommend Real
Life with Celiac Disease. It shares many stories of the different ways celiac disease presents itself, paths to diagnosis, and ways to handle a variety of real-life challenges to addressing them. Deciding to adopt a gluten free diet for the rest of your life may seem impossible, but it is something that you can certainly master and it can even become easy. And no bread tastes as good as healthy feels.