The question has been issued: What is the Celiac Iceberg?  Recent research on Celiac disease has noted various levels of disease activity associated with this autoimmune disease.  The top level of the iceberg consists of visible symptoms in the GI (gastrointestinal) tract.  These symptoms can be: diarrhea, vomiting, pain in the stomach, constipation, bloating, cramping, gas, migraines, depression, lactose intolerance, joint pain, recurrent aphthous ulcers (canker sores), anemia and more.  The second level is the “Silent Celiac Disease”.  Here you will see atypical or few symptoms.  The third and deepest level is the “Latent Celiac Disease”.  There will be no symptoms at this level.

The problem with these levels are: the effects of Celiac Disease.  Individuals not realizing that they have this autoimmune disease can develop diseases such as: diabetes type 1, thyroid disease, systemic lupus erythematosus, sarcoidosis, colitis, rheumatoid arthritis and others.  Individuals with any one of these levels of the Celiac Iceberg will test positive 92% of the time to the serological test for anti-tissue transglutaminase or anti-endoysium.  This test is not in the normal series of blood tests given yearly during physicals.  Yet it is estimated that 1 out of 133 individuals in the United States have this autoimmune disease.  Only 1% of the effected individuals have been diagnosed.

In the following years, my children were very healthy.  The whole family ate gluten-free.  I would give Adam his goat milk but would cook with cow’s milk, since the heat denatured the lactose protein.  Both boys turned out to be good athletes.  We frequently were involved with many tournaments in baseball and tennis. (In a chapter of my recent book, I noted the food I brought for picnics during these tournaments.)  Adam also loved music from the age of 4.  It didn’t matter what: piano, drums, voice, he loved them all.  I only worked during this time two days a week.  The rest of the time my car was in constant motion taking my boys to their various activities.  These were good years.  The only time there were problems was when they tried to eat desserts provided by their friends.  Otherwise they were very healthy.  About the time Garrett was 12 and Adam was 9, my husband and I used a different babysitter for a night out.  Every time we had someone to watch the boys I would inform the individual of their wheat problem.  Then I would show the individual what foods were available for them.  When my husband and I returned that night we found the babysitter and the boys eating wheat flour pizza.  This individual’s explaination to me was,”Well pizza has flour in it and that is not wheat.”  I thought “Save me from fools and idiots.”  I was not happy.  The boys told me they did not have a reaction to the pizza.  I explained to them that this incident was just a fluke (Remember Celiac Disease is an autoimmune disease, once a Celiac always a Celiac.  But this information was not available in the early 90’s.  And it is an intolerence which takes time to show symptoms).  I took the boys to their doctor, hoping he would back me up.  Instead he declared the boys free of their wheat allergy.  The boys were ecstatic.  They wanted to be like their friends and eat wheat.  They started eating wheat items and did not show GI tract disturbances.  What we did not know then is that they were in the “Celiac Iceberg”.

Time went by and the boy’s health deteriorated.  Adam started to develop asthma; Garrett started having problems with his growth pattern.  The health problems led to some defeats in their sports because of asthma attacks (EIA- exercised induced asthma).  Adam continued to get worse with his asthma.  He would have asthma attacks every Friday on P.E. day when the class ran the mile.  That was also the day the grass was cut.  I started taking him to voice lessons so he could learn to expand his diaphragm.  Our doctor referred Adam to an Allergy Specialist.  He tested positive for allergies to milk, grass, olive trees and many more.  We started him on allergy shots about one week before the turning point in Adam’s life.  It was October 1995, nine months after the Northridge earthquake in California.  We were still having periodic aftershocks.  On that particular day, Adam wasn’t feeling well.  We went to see his allergy specialist, got his shots and medicine.  Then we drove to Simi to pick up something for Adam.  While we were in Simi there was an aftershock.  About 11PM that night, Adam came into our bedroom and said “Mom, I can’t Breath!” 

To be continued