Monday, May 04, 2009

On Sale Now: The G Free Diet

Curious about Going Gluten-Free? Get Tested First!

Elisabeth Hasselbeck appeared on Good Morning America today to promote her new book The G Free Diet. At the GMA website you can see the segment, read an excerpt from her book, and find a link to the book's website,

I'm glad that Elisabeth is raising awareness of celiac disease, which is still grossly underdiagnosed, and it's good to see that her story might alert people diagnosed with IBS that they might actually have celiac disease—but I hope that people do not go on a gluten-free diet before getting tested for the condition. I try to avoid shouting on this blog, but here goes: GET TESTED FIRST!

As I'm sure Dr. Peter Green (Elisabeth's doctor and mine) would be glad to tell you, getting screened for celiac disease is a simple and relatively inexpensive process that should be done in coordination with an informed physician. The first step is to get a series of blood tests while gluten is still in your diet. You can find the list of the blood tests at the website of the Celiac Disease Center of Columbia University (CDCCU), where Dr. Green is the director as well as the founder. Based on the results of the tests, the physician may suggest proceeding with an endoscopic biopsy to look for gluten-related intestinal damage, which is the gold standard for a diagnosis.

Speaking of gold, I want to emphasize that the time when you're considering trying out a gluten-free diet is the golden moment for being screened and tested for celiac disease (which is, strictly speaking, not an allergy). Instead of going on the diet right away, make that appointment with your physician and discuss taking the blood tests. After the results come in, you can talk about the next move. (The biopsy also yields the best results while you're still consuming gluten.) After you get the test results, you can still choose to eliminate gluten from your diet, but at least you'll have a baseline that doctors can refer to. If your tests turn out to be positive, they can be useful in monitoring the success of your diet, getting family members tested as well, and even getting federal tax breaks for your expensive gluten-free food!

Want more info? Try the National Foundation for Celiac Awareness (NFCA), the Celiac Disease Foundation (CDF), the William K. Warren Medical Research Center for Celiac Disease (WCCD), the Celiac Disease Center at Beth Israel Deaconess Medical Center (CDCBI), the University of Maryland Center for Celiac Research (UMCCR), and Mayo Clinic.

Also, be aware that Dr. Green has co-written his own book, Celiac Disease: A Hidden Epidemic. Don't expect to read about Elisabeth in that book, but do expect to spend some time in the company of one of the world's experts on the subject.

Here you can see Elisabeth and Dr. Green on The View, back in March 2007.

Source (7:12)

Thanks to Erin at the New York City Celiac Disease Meetup Group (NYCCDMG) for the lead.


mb said...

Thanks for the article!

Please don't take this as a flame... I've yet to find a compelling argument to be tested first (actually ever (if tested means confirmed by blood test and biopsy)). The cost of a confirmed diagnosis can be denied insurance, inflated insurance premiums, and predudicial treatment as a diseased person (I am diagnosed by the way). There are no real benefits that I am aware of for being confirmed and the treatment is the same either way. Has anyone ever been asked if they are confirmed (including by a physician)? I am all for being diagnosed, either with a doctor or by diet elimination, I'm just not sure the two step confirmation process is worth the financial cost/risk. I do acknowledge that all of this is a very personal decision that needs to meet an individual's needs.

When the medical and insurance industries develop a treatment (other than self administered diet) or insurance companies figure out that it is cheaper to be diagnosed than to continue to pay for testing and symptoms treatment, it will be time for all of us to be confirmed.

BTW, I've recently heard of two cases where doctors have suggested that people buy life insurance or change health insurance(if they have plans to do so) before getting their biopsy. What an indictment of the system.

Thanks for opening up the discussion.

David Marc Fischer said...

Thanks for the feedback.

In the United States, insurance policies vary depending on geography, so strategies in New York might be different from those in other places. But of course supporting smart health care reform is something that can be part of any strategy anywhere.

I've already listed three benefits of getting tested. If positive you can use test results to measure your compliance with the diet (something hard to do otherwise), you can make a better case for getting other family members tested (they're at greater risk) and you can get a tax break for the higher cost of maintaining a gluten-free diet.

Furthermore, a positive diagnosis can help you to get the proper follow-up tests for yourself, including bone density (even at a relatively young age) and thyroid testing. Testing probably also adds to the "official" number of people with celiac disease and helps to gauge how many remain undiagnosed.

Even when negative, the testing can help a doctor figure out what really is wrong (or right) with you. And it can save you the cost of a gluten-free diet.

In eleven years on the diet and mixing with people who have tested positive and people who have tested negative and people who haven't tested, I have never heard anyone (except perhaps, with due respect, you) express regret over being tested. I have, however, heard from many who went gf without being tested and then faced a conundrum when they wanted to get tested.

So I advocate for people to get tested, and try to make a strong case to prevent people from winding up in that conundrum because they followed the advice of people who told them to simply go on the diet. And I support reforms that recognize the benefits of testing for celiac disease. Incidentally, Dr. Green recently completed a study in conjunction with an insurer--and I think the study ultimately backs insurance company support of testing and recognition of the savings for a properly diagnosed individual who goes on the diet.

mb said...

No problem and thanks for the response. To clarify, I do not disagree with some level of initial testing (as needed) and ongoing testing for diet compliance as you state (however I've never been asked if I was confirmed to obtain a blood test). What I am not so sure about is the need to be confirmed. Confirmation of Celiac Disease does not eliminate other potential causes of symptoms (as many of us in this community know first hand). I also agree that getting a good handle on the size of the diseased population is a good thing. My issue is with insurance primarily. For those buying their own insurance, it is a significant problem. One family I am familiar with has been denied insurance by several companies and another is paying several hundred dollars a month additional (with all kinds of restrictions) because their child has CD.

Thanks again and I appreciate your blog (and opinions)!

Justie Coyne said...

I would like to put my two cents worth in on this topic: to be tested or not to be tested before trying a GF diet. I underwent the blood test--I am IgA deficient, so the antibody that they test for and which attaches to the IgAs was not present in my blood. I was told three times by my nurse practitioner that I was negative (even AFTER I had googled the results and found the possibility of false negatives if you have low IgA levels). I took my labs to a specialist who took one look and scheduled me for a biopsy. I had already tried GF cooking, and I was feeling better within a matter of days. The specialist required me to go back onto a full gluten diet prior to the biopsy. Then I had the biopsy and the results were negative. The specialist wanted me to come back in for more testing including giardia screening again (I had been misdiagnosed with this in undergrad, tested negative for it this time around, and do NOT and NEVER HAVE had giardia). My lifelong symptoms resolved with one thing: a GF diet.

There is no benefit in being tested by these modern methods of medicine. I am a lawyer and I work in the healthcare industry. I will not go back to my specialist for repeat testing to fing out what "really is wrong." There is nothing wrong other than I'm allergic to gluten. I know it, and that's all that matters. The best method of "testing" is perhaps the elimination diet, even though physicians consider the biopsy the golden standard. If the physician takes a biopsy from a portion of the bowel that isn't damaged, it can come back negative. Depending on the pathologist they use to interpret the results, some pathologists will say you are negative if the bowel's fibers are dented or bent but not completely flattened. I ask you, how bad does the damage need to be before you will test positive???

Testing is not fail safe. This disease is under-studies and midunderstood continuously. Physicians, insurance companies, and even bloggers often forget that we can't cure all the wrongs and we can't even find all the wrongs all the time. Your best method of diagnosis is what works for you, not what works for your doctors. Be informed consumers.

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you can make a better case for getting other family members tested