Going Gluten-FreeMay 17, 2011

Get Tested!

I’ve spent five years—yes, five years! —trying to get my family members tested for celiac disease. After I was diagnosed with the condition in 2005, I urged my mom, dad and two brothers to get tested. (Approximately 10 percent of first-degree relatives are affected.) I made a point of talking up how much better I felt gluten free, cooking great gluten-free foods and maintaining a really positive attitude. But no one got tested.

Last year when a dear family friend became sick with cancer, scared, my mom finally agreed to get tested. Fortunately, my mom doesn’t have celiac disease.

I still have work to do with my dad (a doctor) and two brothers, but a new study, presented at a major medical meeting last week, strengthens my case.

Researchers from Finland screened 3,000 healthy, asymptomatic family members of celiac patients. They then randomly assigned 40 participants who had positive celiac antibodies (endomysial antibody, EmA) to a gluten-free or regular diet for one year.

Even though participants thought they were asymptomatic, after a one-year trial on the gluten-free diet, many realized they had, in fact, suffered from gastrointestinal symptoms and a lower health-related quality of life while on a gluten-containing diet.

Researchers say it’s unclear why some celiacs have severe symptoms while others don’t, but it’s possible people “adapt” to minor symptoms over time, only recognizing them once they feel better.

Intestinal mucosa and minor vitamin deficiencies also improved after one year on the gluten-free diet. Researchers found a trend toward improvements in bone mineral density too. (Low bone density is a common complication of long-term, undiagnosed celiac disease.) At the end of the study, most (85 percent) of the participants were willing to continue on the gluten-free diet.

Based on their findings, researchers concluded that asymptomatic celiacs benefit from early detection and treatment with the gluten-free diet, and that screening of high risk groups—like first-degree relatives—is justifiable and encouraged.

Note to my family: Are you listening?

Christine Boyd is Living Without's medical writer.

Comments (3)

I like the way commonsense describes the medical community focusing almost entirely on the single spoke of CD instead of looking at the entire wheel. As we know, a positive biopsy is a hard diagnosis but a negative biopsy doesn't say there isn't a problem. I agree that treating the symptoms of GS with pharmaceuticals only makes sense to the stock holders of those companies. We have used the stool testing with good results as well but are now shifting to blood testing via cyrex labs. The cyrex labs people are totally up on the extent of damage gluten is causing and have devised different antibody arrays that are quite comprehensive. Instead of looking at one or two gluten related antibodies that check about 50 in these profiles. About 26 of these are related just to wheat with the other 22 checking other possible offenders including about 6 different milk proteins, quinoa, coffee and of course barley and rye. These type of testing advance should help clarify the need for the GF diet in many more people who are interested in better health.

Posted by: Daniel S | May 19, 2011 2:27 PM    Report this comment

I have a similar story with our gluten intolerant family. This is especially difficult because only full allergies show up on traditional blood tests. The change to a GFCF diet allowed my son to become medication free for the first time in years. His stomach was so bloated he needed to wear husky clothes. The parents of the other six grand kids fought my efforts to get everyone tested and on the diet. We have a lot of ADHD in our family but in spite of the tremendous benefit in behavior and learning improvement in my son they were not convinced. Three years latter all seven kids (three families) are gluten free, dairy free and happy! The trick, however, is to also go low glycemic. We have found that baking with almond and coconut flower and using lower glycemic sweeteners has made a huge difference. Rice, corn and tapioca flour simply have too much simple sugars.

Posted by: Laura C | May 19, 2011 9:20 AM    Report this comment

Testing for CD proved worthless for my family! We all tested negative, because apparently we didn't have it YET! Our villa weren't destroyed enough to satisfy the medical community so we were told to continue eating gluten. Our other symptoms including headaches, bloating, asthma, ADHD, numerous gastrointestinal issues, hypoglycemia, thyroid and hormone issues, etc. were discounted and ignored in terms of WHY we had these symptoms. We were simply given various medications (which ALL had side effects!) to mask these symptoms. Thank goodness for Dr. Kenneth Fine's stool test which literary saved our health and well-being by correctly diagnosing our condition.....we have Gluten Syndrome! Once we eliminated gluten from our diets, every single one of our symptoms went away- and, therefore, our need for all the medications went away as well! The medical community must recognize the "large umbrella" of Gluten Syndrome, rather than focusing the small "spoke" of CD!

Posted by: commonsense | May 19, 2011 8:47 AM    Report this comment

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