My 8 year old daughter, Lindsey, was finally diagnosed with gluten sensitivity in March of 2011, after suffering for years with bad stomach aches that left her bent over and crying in pain, and outward signs of weight loss and slow growth which made us finally realize what was going on. She was initially tested for Celiac in 2008 along with her sister, but her tests were all negative, and we were told to keep her on a regular diet. At the time we did not know about gluten sensitivity, so we complied, not knowing any better, and attributed her pains to constipation. After we figured out that she was losing weight we retested for Celiac in March of 2011. At this point we were well-armed with much knowledge of gluten sensitivity, so even when her Celiac biopsies and bloodwork were negative again, we knew we had to start her on the gluten-free diet this time, regardless. From day one on the diet, her stomach aches disappeared and in the past year she has caught up to her sister in weight and is growing like a weed.
This photo shows Lindsey, on the left, just before we started her on the GF diet. Her Celiac twin sister, Morgan, is on the right. Look at the lack of growth suffered by Lindsey since she was on a regular diet three more years than Morgan. (To specify: they were eating the same foods in the same amounts, except Lindsey had been eating wheat bread on her sandwiches, plus regular food only at parties, restaurants, etc. — otherwise they were eating the same GF things.)
At this point she weighed six lbs.
less than her twin (when she had consistently weighed half a pound more) until a stretch of months during which Lindsey lost a pound while Morgan gained five. Almost a year after this picture was taken, they are now the same weight.
Initially I felt so disappointed in myself (and some of the doctors we’d seen) for not being educated about GS earlier. I kept thinking that my daughter could have lived a much healthier life for the 3 years that she remained on a regular diet when she shouldn’t have. I wonder how much taller she would be now. But all I can do now, in reality, is just be thankful that we figured it out and that she is now on the path to better health, and to keep spreading the word about the reality of gluten sensitivity.
If you’d like to learn more, the best explanation I have found is in this article: “University of Maryland School of Medicine Researchers Identify Key Pathogenic Differences Between Celiac Disease & Gluten Sensitivity”
Included is this information: “The Center for Celiac Research estimates that approximately six percent of the U.S. population, or 18 million people, suffers from gluten sensitivity. This group reacts with some of the same symptoms as people with celiac disease, but gluten-sensitive individuals typically test negative for celiac disease in diagnostic blood tests and show no signs of the damage to the small intestine that defines celiac disease.”
So, essentially, people are said to have “gluten sensitivity” by means of exclusion — that their tests for Celiac disease were negative, yet they have the same symptoms of CD, and that the GF diet works to eliminate those symptoms.
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Here are some excellent articles that discuss the differences between Celiac disease and gluten sensitivity, for further reading:
1) “Divergence of gut permeability and mucosal immune gene expression in two gluten-associated conditions: celiac disease and gluten sensitivity” (Excellent definitions of CD and GS in this article.)
2) “Celiac disease vs. gluten sensitivity” by Tricia Thompson
(This is a Q&A w/ Dr. Fasano, differentiating between CD and GS)
4) “Celiac Disease—Gluten Sensitivity: What’s the Difference?” By Ron Hoggan
(I found this to be a helpful article, and particularly liked his summary.)
5) FAQ re: Celiac Disease & Gluten Sensitivity by Dr. Kenneth Fine
6) “Clues to Gluten Sensitivity” from the Wall Street Journal (Great article)
7) “Key Differences Between Celiac Disease and Gluten Sensitivity” from the Celiac Disease Foundation
9) “Gluten Sensitivity vs. Celiac Disease- What do we know?” by Dr Vikki Petersen
Through this site I hope to help spread awareness about the reality of non-celiac gluten sensitivity so that more people are not told, “If it’s not Celiac, then it’s nothing,” like we first were. Gluten sensitivity is damaging. It is real. And to our family it’s just as important as Celiac. I sincerely hope that researchers will become more serious about GS, tests will become much more accurate and definitive, and that millions more are made aware of this very real condition, so that they, too, can move on to healthier lives.