Article: Undeclared War and Celiac Disease

Published: Townsend Letter for Doctors & Patients - January 2006

There is an undeclared battle going on in medicine, and I am not referring to how insurers and doctors get reimbursed or patient approval for treatment. I am referring to the growing divide between conventional and alternative medicine. And patients are caught in the middle.

Conventional medicine has a narrow-minded view fomented by the reductionist logic taught in medical school. Occum’s Razor insists that most symptoms be neatly put under a single heading to entitle a disease entity. This is why conventional medicine produces specialist focused on a single organ system. Functional or Integrative Medicine views things as happening simultaneously because the symptoms are inextricably linked together to create the whole organism. Rather than naming a disease entity, a physiological process is identified which causes multiple symptoms in multiple organ systems at the same time. Identifying and treating the root cause(s) is how to stop the symptoms and promote healing.

Celiac Disease is unique among autoimmune diseases as we know the inciting agent to be gluten. However to get the disease is a multifactorial process. One must carry the gene, eat gluten AND have a trigger event that initiates the cascade of inflammatory events that ensue. The trigger event can be emotional (death of a loved one or a divorce) or it can be environmental (chemical exposure or pesticides) or it can be triggered by an infection (exposure to mold or mononucleosis). The dilemma is that Celiac disease can present in a multitude of ways depending upon which organ system is most affected in that patient, but multiple organs (and symptoms) are always involved.

Celiac disease is a disease of malabsorption. If you are nutritionally deficient you cannot do these things well: heal, create energy, think straight, sleep well, or be happy. The gamut of symptoms range from the typical gastrointestinal presentation (diarrhea or constipation,weight loss or weight gain, voluminous foul-smelling stools, and abdominal pain) to the more commonly encountered atypical symptoms. Atypical presentations outnumber typical presentations at least 8 to 1. This means anything from chronic fatigue-fibromyalgia to autonomic dysautonomia, from schizophrenia to multiple sclerosis, and from hypothyroidism to diabetes. In short, Celiac disease can present as almost anything since the malabsorption of nutrients and the inflammatory reaction gluten incites can and does affect every organ of the body. The presentation differs with the individual.

The first problem in the diagnosis of Celiac disease is getting the clinician to even entertain it as a possibility. Celiac is still relegated under the heading of “Rare Diseases” as taught in medical schools. This is because few realize its prevalence. The official prevalence now stands at 1in133. This number is fairly consistent worldwide. Time will probably increase this number to 1 in 100 as technology becomes more advanced in detecting the disease in its earlier stages. Although less than 1% of the population, Celiac disease accounts for 25 – 35% of chronic diseases. It also accounts for a lot of symptoms doctors dismiss as “being all in the patient’s head since lab tests are returned as normal for many years. Celiac Disease should be given the title of the “Great Masquereder” formerly used to refer to Syphilis.

Here is the first issue with conventional medicine. Conventional medicine would prefer for all the symptoms of the disease to manifest in order to obtain a correct academic diagnosis and positive lab test results. The doctor could then say “See, this is what you have; the lab test result is abnormal.” By the time lab tests are abnormal in any disease there is tissue damage. The average time to correct diagnosis for most celiacs is 8 to 10 years. The currently used test for the diagnosis of Celiac Disease is the tissue transglutaminase. For this to be positive there has to be almost complete destruction of the villous architecture ( Marsh Stage 3) on biopsy. Since theses lesions can “skip” more than just a few biopsies are needed. If the spot is missed the disease doesn’t exist. This is invasive, expensive and unnecessary. The true art of medicine is figuring out who is on on the way to developing the disease before the lab tests are positive.

The rationale for waiting for the damage to occur is that changing one’s lifestyle (avoidance of gluten) is a huge chore. Isnt our diet what is wrong with American Health? Don’t we eat way too many empty carbohydrates? Don’t we weight too much? Do we exercise enough? What sacrifice is it to eliminate gluten and maintain good health? One of the reasons the Atkins Diet may work so well for many is that gluten is completely eliminated. Grains are not healthy for mosst Americans, especially in the quantity most consume.

Many people who suffer with fibromyalgia, migraines, chronic fatigue, and chronic candida infections realize that they feel better when not ingesting gluten. Most atistic children do better off gluten as well. Does this mean that they are allergic or early in the celiac progression of diseasase? The liklihood is that there is a spectrum of disease. Immune health begins in the gastrointestinal tract and any injury here allows for gluten to become a problem. Regardless as o whether it is an allergy or true celiac diseasem the treatment is the same: NO GLUTEN!

The suffering endured by patients before diagnosis is both physical and emotional. Some feel they are going crazy, and having their doctor tell them that “ it is all in their head” or “it is stress” owing to copious normal lab work add to their injury. As with any disease, a high index of suspicion is required. Since this disease accounts for a lot of chronic illness, Celiac Disease needs to be high on everyone’s list. Consequently most patients self-diagnose or suspect that gluten is an issue before it becomes “clinically apparent”.

Conventional medicine had better watch out - patients are becoming more aware and more responsible for their own health. Pretty soon they will know more than their doctors.