I’ve been asked this question a few times in just a handful of months: Should we just try the gluten-free diet and see what happens? It is a big question with the potential for some repercussions. I am not a doctor and on this blog I will not recommend that anyone who has a tummy ache should just go on the gluten-free diet. But there are times where I wonder if just trying the diet is the answer? Today’s post is not going to tell you what to do, but rather hopefully give you two different ways to look at the issue.
Just in the last two weeks, I know of three cases where the people are either contemplating (not sure how seriously) or have already started, the gluten-free diet to see if their health improves. Two of them have been advised by doctors to do so, without a positive test result for celiac. While I don’t feel comfortable going into the ailments any of these people have, I will say in one case it involves very serious health issues with some symptoms pointing to possible celiac disease. So what do you do?
Argument #1: All research points to waiting on the gluten-free diet
I’ll be honest, this issue is a tough one. Most doctors say patients should not go on a gluten-free diet without an official diagnosis of celiac disease from their physician. The main reason is that if you have undiagnosed celiac and go on the gluten-free diet before getting tested, future celiac tests could come back negative. “If you think you may have celiac disease, wait until you’ve been diagnosed to start a gluten free diet,” the Mayo Clinic’s website reports. “That’s because it may be more difficult for your doctor to make a diagnosis if you’ve begun the diet before being tested.”
Columbia University’s Celiac Disease Center even addressed the idea that some doctors may recommend just trying the gluten-free diet to see what happens. “The recommendation by physicians, nutritionists, naturopaths and osteopaths to try a gluten-free diet as a trial of therapy for gastrointestinal symptoms, without biopsy confirmation of the diagnosis, should be discouraged.”
The University of Chicago took a different approach. Its doctors say if you go gluten-free before a diagnosis, “a child may have to eat gluten for 4-8 weeks (a gluten challenge) in order to have a biopsy if that child has not been eating gluten for several months or more. A gluten challenge in adults can last three months.” Many celiacs have violent reactions after their gut heals. Returning to that place in their lives likely would be a difficult process. Also researchers in Chicago found “clinical experience also shows that children and adults who have not been biopsied as part of their diagnosis for celiac disease tend to take the diet less seriously and eat gluten when they shouldn’t. ”
Bottom line from the medical community: get the blood and biopsy tests done first before going gluten-free.
Argument #2: Going gluten-free never hurt anyone
So here’s the other side. What if you’re so sick and you feel no one in the medical community is helping you find the diagnosis you may need? Anyone who’s been around celiac disease for a few months quickly learns that a diagnosis of celiac can sometimes take years. For some, it means years of seeing different doctors, years of varying diagnoses, years of pain, unexplained ailments and overall poor health.
What if you really feel like you’ve got nothing to lose by trying the diet? I think there are times where this can be attempted. Do I have any research to support this? No. Would I recommend this to just anyone? No. But I have to admit, there is something about taking your health into your own hands. But you’d better know what you’re doing; including doing the diet right – no cross contamination, no cheating, and ensuring you’re supplementing with essential vitamins you miss when you go gluten-free. About.com’s Nancy Lapid reported last year, “…gluten-free products are often low in B vitamins, calcium, vitamin D, iron, zinc, magnesium, and fiber. Few if any gluten-free products are enriched or fortified with these nutrients”. Also if you’re not careful, your cholesterol could rise because many gluten-free foods are high in fat.
I am confident there are people who have gone on the diet to see if they feel better — and been right. Some people don’t need to have a diagnosis on paper to know they react badly or even violently to gluten. I also know there are celiacs or parents of celiacs who would never subject themselves or their children to a 2-3 month gluten challenge just to be sure they have celiac.
Bottom line is that there is no bottom line on this one. This option is way to gray to be “bottom lined”. I don’t recommend just anyone going on the gluten-free diet. But in a dire situation where you don’t know what to do next (and there are situations like this), if you think this is what you need to try, then you should do what is best for you. And deep down, I don’t think just trying the gluten-free diet ever really hurt anyone.
Note: If you think you have celiac disease and are having difficulty getting tested, contact your local gastroenterologist’s office, ask for the doctor most experienced with celiac disease and see about getting an appointment. Another option is to check with your local support group for doctor suggestions.
Disclaimer: I have gone on the gluten-free diet without doctor’s orders before to see if it impacted my health and to see what living the gluten-free lifestyle was like. I didn’t have any major celiac symptoms, nor have I ever tested positive for celiac. I have since gone back to adding some gluten back in my diet. I blogged about it back in January.