"Should I start a gluten-free diet if I do not have a postive diagnosis of celiac disease?"
I get this question a lot. As someone with an intestinal biopsy-confirmed diagnosis of celiac disease, and as the author of an entire book on celiac disease and how to live well with it, I am asked my opinion on this issue at nearly every lecture or class I teach, and usually in several emails a week! There is indeed a lot of confusion on the subject, and though I am not a physician, (and everyone should consult with their own before making a decision on the matter) I do have my own opinon.
You see, diagnosing celiac disease (CD) is a tricky thing. There are now blood tests available in any lab to test for CD, but not really. They actually test for levels of certain antibodies your body may be producing which would be indicators for the disease, but do not affirmatively prove its existence. Physicians reviewing positive serology results typically order an upper endoscopy to confirm CD, just to be sure. But there are false negatives in the blood tests which often send symptomatic patients packing with no answers. And did I mention there are false negatives in the biopsies as well? I outline these issues in my book, The First Year: Celiac Disease and Living Gluten Free, if you want to know more.
For our purposes right now though, what are you to do if you suspect celiac disease? Of course, seek medical advice and testing (while continuing to eat gluten!), but should those fail to turn up answers, it is looking more and more like trying a gluten-free diet (GFD) is the right thing to do anyway.
Confirming what many have found true for themselves, researchers in Italy have now determined that subjects who tested negative for celiac disease by way of intestinal biopsy, but nonetheless maifested symptoms of CD, do indeed benefit by starting a gluten-free diet. For more on this, take a few minutes to watch Dr. Vikki Petersen's video on this research.
This determination was made because researchers were able to identify significant similarities between the substances involved in the metabolisms of celiac positive patients (overt CD) and of patients with celiac symptoms but no biopsy confirmation (potential CD). In fact, both population groups share certain identified immunological abnormalities.
Their results demonstrate that "metabolic alterations may precede the development of small intestinal villous atrophy and provide a further rationale for early institution of GFD in patients with potential CD."
In other words, the researchers found that even if a patient with celiac symptoms tests negative for the actual disease, they may be in a pre-celiac state that would cause them to benefit from a gluten-free diet as well.
You may not, in fact, have celiac disease, but since other research now indicates that as many as 7% of the population (20 million Americans!) have some level of gluten sensitivity, there may be yet another reason that you could experience health benefits by eliminating gluten from your diet. For one reason or another, you may actually feel better without receiving a positive diagnosis of celiac disease and without even taking a pill (shh! don't tell the pharmaceutical companies!). As Dr. Rodney Ford puts it, "If you feel better gluten-free, and get sick/unwell when you eat gluten: then you are gluten sensitive. The diagnosis is made by your own experience (that is made by elimination & challenge)."
No, a gluten-free diet isn't for everyone, and yes, I believe you should be tested if you suspect that you have celiac disease. However, if you don't find any answers, my recommendation is to try a gluten-free diet for yourself. Caution, however: some studies suggest that for the gluten-sensitive who go gluten-free, if they later reintroduce gluten, it can lead to the development of auto-immune diseases.
*Note – after this original posting, Dr. Vikky Petersen wrote on an intriguing link between anti-gliadin antibodies, gluten sensitivity and certain neurological conditions like ADHD. She noted that one study found 80% of kids with ADHD had anti-gliadin antibodies but were not positive for celiac antibodies. A gluten-free diet may nonetheless be indicated. Her article is worth a read, but here's my take:
Studies recognizing the legitimate condition of "gluten sensitivity" help bring options to people who may otherwise feel they have no answers or solutions. The fact that anti-gliadin antibodies can be measured helps bring legitimacy to arguments that a gluten-free diet may help those with autism spectrum disorder, depression, ADHD and even schizophrenia. Gluten-free may not be the answer for everyone, but it's an easy, non-pharmacological option to try before disregarding it as inapplicable simply because you do not have diagnosed celiac disease. I believe we will see far more population groups benefit from a gluten-free diet in the future, as more is learned about anti-gliadin antibodies, gluten sensitivity, and a gluten-free diet.
For more information on celiac disease and gluten sensitivity:
- The University of Maryland Center for Celiac Research (Dr. Alessio Fasano) – Celiac FAQ page –
- IBS Treatment Center (Dr. Stephen Wangen)
- Center for Food Allergies (Dr. Stephen Wangen)
- HealthNowMed (Dr. Vikki Petersen)