When I was six years old, my father (a half Swede/half Finn) died of complications of Chrohn's Disease and Rheumatoid Arthritis. When I was a little girl, I was thin, short and my stomach always hurt. Not knowing that was abnormal, I lived with the pain, constipation and diarrhea as a fact of my life. At one point, my mother had a Dr. run tests (upper and lower GI x-rays) on me, but nothing was diagnosed.
I grew up, married and had 10 very skinny, short children. Right after my 6th child was born, we noticed that Brittany, age 5 and Nathan, age 3 were very ill. Both only weighed 24 pounds and had severe diarrhea... the running-down-the-legs kind. They had horrendous-smelling gas. Their stomachs were bloated and they had no butt cheeks. They looked like starving kids in Ethiopia. They were covered in rashes and I fretted over their health, daily.Finally, taking them to the Pediatrician in 1994 was a success! They were CLASSIC Celiacs. Most people with this disease aren't classic in their symptoms so the disease goes undiagnosed, as in my case. The kid's blood tests were sent to the Mayo Clinic and alas, a true diagnosis was determined. Our Doctor told us there was no cure but it would be "simple"... just stay away from and pancakes and bread!
Okay, that was such an understatement! We found that the basic American diet is 85% gluten-containing! I stood one day, in 1994, in my kitchen, crying and overwhelmed by the destruction of the disease to my family and the large amounts of gluten in my cupboards. I emptied the kitchen out, throwing food into boxes and then gave them away to the neighbors. I was left with frozen and canned vegetables. The cupboards were bare!
After Brittany and Nathan were diagnosed, I began to wonder about the rest of us. Hadn't each of our babies struggled with diarrhea from the time they began to eat solid food? Didn't they all have continual gas and bloating and that odd rash on their little bodies? My Pediatritian had me contact Dr. Fasano of the University of Maryland Medical Center in Baltimore to get more information. Dr. Fasano asked me to go to a local hospital and have the blood drawn on all my children and I for a genetic study on Celiac Disease that the Univ. of Maryland was doing. In return, Dr. Fasano sent us the results of the blood-work on all of us. Incidentally, the whole family had been on a relatively gluten-free diet since the 2 kids were diagnosed but had gone back to eating gluten for a period of 3 months before this blood-work was done.
The findings were so interesting to me. First of all, we ALL were found to have Selective IgA Immune Deficiency. The jury is still out on that one, to know if it is associated with Celiac Disease. The next thing we found, is that the younger the child, the higher their anti-gliadin count in their blood. All were positive, however, for Celiac Disease. I chose not to have the biopsies done as I felt we didn't need to be tested, based on our history and positive responses to the gluten-free diet.
The University of Utah also heard about our family and came to our home to draw blood for a genetic study they were also doing on Celiac Disease. In Aug. 1997, I had my 8th child and her umbilical cord blood was sent to Helsinki, Finland where they have been studying Celiac Disease in Finnish children. I am 1/4 Finn and thus my children 1/8th. My Finnish family is from Pudasjarvi, Oulu right at the "waist" of the country. 
The kids rallied and grew stronger on a strict gluten-free diet. Their bouts of diarrhea became less often and they gained weight. I went on to have 2 more Celiac children and I continue to struggle with cooking for them and learning exactly where gluten is hidden in processed foods.
I have often wondered why all 10 kids have it? Does that mean their father has it? What would be the chance of me marrying a man with this disease? His mother had a horrible rash all her life. Many of his siblings, cousins and relatives either died of abdominal cancer or lymphoma, had continual intestinal distress, had diabetes or had children who had failure-to-thrive problems. No one, in his family, has wanted to get tested lest they discover they may have to deal with the same diet we live with.
Five of my children are grown and still live the daily dilemma over their diet. I have 4 granddaughters and we don't know if they are Celiacs, yet. One of my children once stated, "The symptoms of the disease are easier to handle than the diet". But, it is imperative that a Celiac endure a strict gluten-free diet.
