This is Sarah’s Story . . . 

She was their first baby, and they loved her so much.  The pregnancy and the birth were hard, but she looked perfect and no one knew anything was wrong.  Her mother noticed she didn’t seem to feel well and sometimes refused to eat.   She began eliminating possible allergens from her own diet since Sarah, age six months, was still nursing.  Dairy, nuts, soy, chocolate, peas, citrus, wheat and eggs went by the way.  She was still using spelt, rye and oats.  Gluten didn’t occur to her.  The diet change helped a lot and Sarah seemed to grow well until she was two.

Starting at age two, when Sarah caught a bug, a cold or stomach flu, she got very sick, very quickly.  She dehydrated, sometimes over one night, and had to go to the hospital for IV rehydration.  No one thought of celiac disease.  No one suggested her mother avoid gluten.  An appointment was made for Sarah with a pediatric gastroenterologist, but she was booked for three months ahead.

After a hospital stay in the spring, her mother, fairly frantic for answers, found something on the internet.  The problem seemed to be celiac disease, an autoimmune disease triggered by the presence of gluten in the intestine.  The signs and symptoms matched up.  Gluten is the stuff that becomes elastic when you knead bread.  It’s in wheat, rye, oats and barley.  Her mother was right.  After the fact everyone agreed, all the doctors said “Oh, yes, celiac disease, gluten, of course.”

Three weeks later she nearly died.  She stopped eating and drinking, lay quietly on the couch, unresponsive.  Thank God for hospitals and re-hydration.  Everyone now thought it must be celiac disease triggered by gluten.  She was already as gluten free as we novices could manage – but it takes time for the body to heal.

That summer it was very hard times.   In the hospital her family stood around helplessly as twenty-one pound Sarah screamed “help me, help me” because of the terrible abdominal pain.  The gluten in her diet had done much damage.  The hospital staff explained they couldn’t give her anything for pain because she was too small.  She wasn’t growing.

Sarah’s grandmother remembers the look in the doctor’s eyes as she released Sarah from the hospital – compassion but not much hope for her survival.  It scared her.  She decided to devote herself to cooking the most nutritious meals possible with no gluten. 
 

Sarah’s mother and father were exhausted and afraid their beloved baby girl would die.  They huddled together like a circled wagon train, as though that would protect her.  She was eating one bite every few hours and drinking little.  Her grandma, a nurse, and old day care mother thought maybe she could help.  Maybe the English know best, maybe fresh air and a little laughter will help. 
 

She bundled Sarah into a stroller and walked her down to the grocery store.   People stared then looked away.  Sarah did look worn out and very thin.  Never mind, it was a step in the right direction.  Grandma and Sarah discussed it and decided that baby food would be a place to begin.  Grandma piled them all over Sarah, as though they were building blocks, and Sarah laughed.  Her Grandma took a breath and the vice around her heart loosened.
 

They made a plan, half a jar of food and 2 ounces of water every twenty minutes.  Sarah cried and begged for no more.  Her belly hurt and she was too tired she said.  The grown ups said take four breaths in between each bite and each sip.  After a few days her own appetite came back.  She still needed to be fed or she got too tired.   

The treatment for celiac disease is both simple and extremely difficult – remove all gluten from her diet.  Again, thank God, no surgery, no mortality.  But the challenge of eliminating gluten from one’s house, one’s food, one’s life is never ending.

Because of her sensitivity to gluten, Sarah doesn’t get out too much.  Gluten is everywhere.  When she does get the chance for an adventure, a change of venue for the day she is grateful.  Even if she gets sick, she is cheerful and full of good reports.  She never complains about her life.

If she is sick for a week and looses muscle and strength, then she works hard to get it back.  She plays on the monkey bars, runs and rides her bike until the strength comes back.  Sarah loves to be alive and loves the good days she’s given.  She works hard at everything she does.

Now she has two brothers and a baby sister who are all glad she’s here to play with them.  Her parents are still crazy about her.  They have a completely gluten free home.  Because of her, the family learned that her mother and her grandmother also have celiac disease and they are healthier now too, without gluten, thanks to Sarah.