I recently came across a discussion concerning celiac disease on a physician-only internet forum. Here are some of the (anonymous) comments which were posted:
“Ugh. Is there any disease more boring and worthy of turfing to the GI guys than Celiac Sprue?”
“Celiac disease – so little known, so much to know, so important to know”
“Celiac disease is easy to diagnose ONCE SUSPECTED! We can easily suspect in a child with diarrhea and an adult with the same in chronic state, but in the face of generalized inanition, neuropathy, or other intestinal disorders, or teen age diabetes onset, it doesn’t readily pop up in one’s conciousness. Yet recent studies have suggested that as many as 1 in 5 with celiac disease will have a variety of neurologic and other symptoms. I know in my practice I can look back and see a number of patients whose symptoms might nowadays suggest a strong need for screening. It is with regret that I look back on their years of suffering without a chance for their improvement with a gluten free diet or study of the nutritional factors disturbed by gluten deposition.”
“Most physicians are missing the Celiac Disease because they diagnose it as IBS.”
“Its very hard for patients to stick to a gluten free diet, unless the entire family goes gluten free, which most don’t. I am seeing many more gluten free products in the stores, though, especially baking mixes and crackers/cookies – makes it easier. But I have tasted some gluten free cookies. I decided that gluten is good.”
“Hey, did y’all know that most American soy sauce is mostly fermented wheat?”
And then I came across this comment, a true treasure, which made me feel like the time I had spent reading through the other comments was actually worthwhile. I wish that I could meet this physician in person and give him or her a huge hug!
I diagnose and successfully treat many children with gluten intolerance who do not meet the typical diagnosis of celiac. I screen all kids with neuropsychiatric and immune dysfunction for the HLA DQ2 and DQ8 genetic markers. If the patient is positive, I inform them they do not necessarily meet celiac diagnostic criteria, but the gold standard is a trial off gluten. IF the child is way better ( which they often are), the family is sold on the diet, even if it takes a lot of work.
As for the kids who get worse gluten free, (many are autistic), they are usually soy or corn sensitive, and as they remove gluten they increase their soy and corn consumption and get worse. There are many families that seem more sensitive to soy and corn than even gluten, (GMO?), any trial off gluten, a family must be warned of this potential adverse effect so they are not surprised. Also, patients dont feel better for up to 2-3 weeks, in the beginning they have gluten withdrawal and get worse.
For all of you that believe the gluten free life is hard, it is far harder to have a severe autistic, anxious, depressed or ill child. Most families are more than willing to endure the trouble when they see their kids thrive. Don’t assume they will do poor.
As for those who say that they will have nutritional deficiencies, GIVE ME A BREAK, many cultures all over the world are free of gluten, it is not needed for human life. It just takes education, plus they eat less processed foods, which all Americans could benefit from.
Looking for this in my patients has changed my whole practice, and the lives of my families. We dont have IBS in our office, no functional abdominal pain, no chronic fatigue. Gluten intolerance is not all that we do for those conditions, but it is a good place to start. Children are suffering for reasons that are treatable, not “stress”.
This last post gave me hope that awareness of gluten-related disorders is finally increasing within the medical community, especially in pediatrics. It’s about time!