After seven years on a strict gluten-free diet, yesterday afternoon I met a gastroenterologist to begin the process of determining whether, in fact, I have celiac disease. This means that for the next 12 weeks I’ll undertake a gluten challenge in preparation for a small intestine endoscopy and biopsy in July to look for damage indicative of the disease.
Since I don’t have trouble tolerating the diet and I’ve had good results from it, people would be justified in asking, “Why bother?” Even the gastroenterologist, without arguing for or against this procedure, wanted to know my answer to that question. It’s important to know and here are my reasons.
- For people with celiac disease, even traces of gluten can cause damage. Often it is invisible and doesn’t provoke symptoms but can have long-term health implications. As far as we know, the concern is not so serious for people with non-celiac gluten sensitivity. If I’m going to follow this diet for the rest of my life I want to know how careful I need to be. It’s not a concern when eating at home. We maintain a strictly gluten-free kitchen. But the gluten-free diet becomes a source of anxiety every time I enter a restaurant or eat dinner prepared by anyone who doesn’t know the finer points. Even in restaurants that have gluten-free menus, many servers roll their eyes when you tell them you have a gluten sensitivity. If I’m going to be hardline about this for the rest of my life, I want to know.
- Bearing in mind those hidden implications of celiac disease, patients need appropriate medical follow-up even in the absence of symptoms. The gastroenterologist yesterday said he recommends a biopsy every five years. According to my research, CD patients should also be monitored for bone mineral density. They are at higher risk for certain kinds of heart problems and other diseases. CD patients on a gluten-free diet tend to have elevated cholesterol, as I do. I’d like to have a clear picture. Perhaps what’s more important, if I have CD I like my general practitioner to treat me like I have CD.
- It’s partly academic. As a journalist who often writes about CD, I’ve interviewed leading experts like Dr. Joseph Murray and Dr. Alessio Fasano. I’m research editor for Gluten-Free Living magazine. Several of my articles have presented the argument that no one should ever go on a gluten-free diet without first ruling out CD because it can only be diagnosed by the effects of eating gluten. I support this position particularly considering all the controversy around the diet, which can obscure serious health risks for a small but important minority of people. My job as a journalist is to inform and my lack of diagnosis might suggest I’m a hypocrite.
However things turn out, it will be another adventure, another story to tell.
In February, results finally came from a test done last summer. They showed I have HLA-DQ2, one of the genes that predisposes people for CD. This only proves that I’m not among 60 percent of the population that doesn’t have the genes and can’t get celiac disease. But based on the results, my doctor referred me to the gastroenterologist.
The usual path to diagnosis begins with a blood test for antibodies while the patient is eating gluten. However, I would have to pay for these tests and the cheapest, most readily available test for tissue transglutaminase antibodies (anti-TTG) is at best inconclusive. The specialist recommended that I forgo blood tests, do not pass go, head directly to biopsy. I was surprised, however this reflects the fact that many experts still regard biopsy (a collection of small tissue samples from the gut lining) as the gold standard for diagnosis, particularly in adults.
Starting this week, maybe tomorrow, I start eating gluten again. Fortunately, only modest amounts are necessary to provoke markers of the disease. Dr. Murray advocates a kinder, gentler gluten challenge than was considered necessary in the past. My gastroenterologist said three doses per week should be enough, although he encouraged me to eat more if I can tolerate it.
I don’t know what to expect. I have mixed feelings. Besides the suspicion of CD, I’ve benefited in many way from the gluten-free diet. It has sparked creativity in cooking. I pay more attention to healthy eating. But nobody wants a disease like this. I’d be happy to uncover a less dire explanation for the symptoms.
The gastroenterologist suggested I might enjoy the chance to eat whatever I like. I should be looking forward to tasting the things I miss most like a good crusty baguette, regular pizza and apple fritters from St. Jacobs Farmers Market. But having interviewed CD patients who briefly went back on gluten, I doubt that it will be any fun.
I had lots of low-grade digestive issues before the diet. I’d been diagnosed with hiatal hernia and reflux disorder years ago. I suspect these were somehow related. I have to take a proton pump inhibitor to treat reflux. For a couple of years I had frequent diarrhea. This became markedly worse after I acquired a bread machine and started eating delicious bread every day. Twice I soiled myself while out in public. It was humiliating, no help to someone who suffered from social anxiety.
My uncle had celiac disease so I suspected gluten might be the problem. But I didn’t have enough income at the time to justify (in my own mind) paying for blood tests. I wish I’d known better. I went on a gluten-free diet in March 2008.
I stopped having the runs immediately. But in the ensuing weeks I noticed improvements in other seemingly unrelated symptoms. Depression and anxiety were alleviated. So was joint pain, which I’d attributed to an inherited tendency toward arthritis. At age 44 I would commonly get tired of being on my feet for long (normal shopping trips were physically grueling). It’s strange to realize I’d accepted that as normal; now 51, I seldom experience fatigue like that. All these complaints are typical for people who don’t know they have CD.
In light of this, people might be justified in questioning my curiosity – why I need to pursue a diagnosis now. If the treatment works so well, maybe I should just accept it. But as a journalist I’m obsessed with knowing and speaking the truth. It might be easier to tell restaurant servers a little white lie: “I have celiac disease.” But it runs against the fibre of who I am.
It’s also possible that the condition is not CD. The biopsy might be negative, which could indicate non-celiac gluten sensitivity or other possible food sensitivities, for example to fermentable oligo-, di-, mono-saccharides and polylols (FODMAPs). If that becomes the questions, I’ll pursue the answer.
I need to know.
[Edit: As an afterthought, I recall that in 2008 I couldn’t obtain a referral for biopsy without first taking the blood test for celiac disease. It’s an encouraging to find that medical awareness of this disease and its implications have shifted, and that the gastroenterologist wants to take the simplest approach for a clear diagnosis. It’s also important to note that here in Canada we have to pay for the blood tests (though some employee benefit programs would cover it) but not the surgical procedure of endoscopy and biopsy. Strangely, the lab didn’t charge me for the genetic test last year. I suspect this was an oversight.]