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Home . Health Resources . Resources by Concern . Gluten Resources . Gluten Free Without Celiac Diagnosis

Gluten Free Without Celiac Diagnosis

August 2010 As you research a gluten-free diet (GFD), you will no doubt run across opinions from celiac "experts" that will emphatically state that you shouldn't start your GFD until you have a confirmed celiac diagnosis by blood testing and/or intestinal biopsy. This is wrong and dangerous advice for several reasons that I will explain here.
#1 NOBODY needs wheat, rye or barley to live. A GFD is not dangerous in any context. On the contrary, ample evidence exists that shows that wheat and similar grains have negative health consequences for just about everyone. There is good anthropologic evidence that joint degeneration (arthritis), degenerative heart problems and tooth and gum decay follow as wheat became a staple and agriculture societies replaced hunting and gathering. Modern day cultures that rely on little or no wheat to this day have less of these degenerative problems. Also we see as wheat is introduced into cultures that typically used little or no wheat for centuries that they encounter many new health issues as a result.
#2 The celiac "experts" imply with their recommendation that if you don't have full-blown celiac disease that you aren't gluten sensitive and that you won't benefit from a GFD. I have to wonder how much time these "experts" have spent in the research literature keeping up on the hundreds of studies published in the last decade that show otherwise. Dietary gluten has been linked to over 60 health disorders, many of which are life threatening such as juvenile onset diabetes, adult onset diabetes, cancer, rheumatoid arthritis, dementia, autism, cerebellar ataxia, thyroid problems, liver problems, osteoporosis, gastric reflux and many others. If any other substance in our culture had been scientifically proven to be associated with so many serious health problems it would have been banned by now. Recommending that person stay on wheat and similar grains except for very specific and narrow diagnostic criteria is irresponsible and dangerous. These "experts" are either sincere but badly mistaken or have a serious conflict of interest with their ties with the wheat industry at some level.
#3 A good study was completed about 2002 that showed that the incidence of celiac disease as proven by blood testing (tissue transglutaminase antibodies) and/or biopsy in the North American population is about 1:133 as reported by Fasano et al. It is estimated that the diagnosis detection rate is currently pathetic at about 3%. Also only about 12 of each 100 with celiac disease will have relatively obvious intestinal signs meaning that 88 of each 100 will have either mild or no intestinal signs that they mention to their doctor. With less than obvious intestinal signs most doctors will not even bother to look for celiac disease and won't correlate their other signs and symptoms with a gluten cause. Therefore most patients who truly have CD are on their own. As mentioned, medical doctors are picking up about 3 of every 100 people with true celiac disease leaving 97 to fend for themselves. Therefore saying that a person should get a confirmed diagnosis is not even close to being realistic given the current rate of diagnostic ineptness of the professional health community. I wish I could say that my profession is doing better but it probably isn't.
#4 An excellent study of about 4000 people was completed about 2001 and published in The Lancet that looked at the mortality rates of undiagnosed first degree relatives of diagnosed celiac patients. Yes, we are talking death rates. It was determined that these first degree relatives were 2-8 times more likely to die at every age (from whatever people die from) than the general population. Keep in mind that 97 of 100 people with celiac disease are undiagnosed and that all of their brothers, sisters, sons, daughters, mother and fathers are also at risk for early death. Does it make sense then to wait for the medical community to get up to speed on gluten sensitivity diagnosis before going gluten free? The disease and death toll would say otherwise.
#5 We have mostly been talking about celiac disease. The most conservative estimates say that about 6-7 times as many people as have CD are what I call non-celiac gluten sensitive people. That would mean that about 1:20 at least are gluten sensitive and would therefore need a gluten-free diet to be healthy. These non-celiac gluten sensitive people are subject to the same long list of disorders as a celiac and are subject to the same early death. Some researchers put the incidence of the North American population at 50% or more that are gluten sensitive to some degree. The celiac gene is present in about 35% of the NA population and other genes that have been shown to predispose a person to gluten sensitivity are more common still.
#6 Many good studies have shown that often the only sign that a person is gluten sensitive is some sore of neurological disorder. The research in this field has not relied on blood testing or biopsies because they are negative. These people have demonstrated signs of blood flow abnormalities to the brain and abnormal MRI's. The gluten link has been well established because when these people go gluten free, their blood flow normalizes and the MRI's begin to normalize as well. Anyone with ADD, ADHD, dementia, memory loss, difficulty walking or speaking, strokes or any other neurological disorder would be wise to go gluten free just in case. I would say get evaluated for gluten sensitivity by an experienced doctor but I have already explained why that probably won't work.
#7 Many other conditions will be similar to the neurological problems, that is the condition can exist without positive tTG antibodies detectable in the blood and a negative biopsy but the damage is caused by gluten anyway. I am referring to osteoporosis, multiple sclerosis, rheumatoid arthritis, Hashimoto's thyroiditis, lupus, any other auto immune disorders, any unexplained skin problems and more. The best test for osteoporosis would be a DEXA, go gluten free and repeat the test in 18 months for example. Each person will have to figure out what symptoms they are going to monitor. As one researcher put it, gluten sensitivity is a clinical chameleon. It has so many presentations that each person will have a different set of symptoms. One person will monitor their headaches, another acid reflux, another quality of sleep and another brain fog. I trust you get the idea and why you CAN start a gluten-free diet without the high priest's blessing.







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