Celiac or gluten intolerance?

This post is meant to answer one of your questions: how did you find out about your allergies.  The short answer is: I did not find out about my allergies. I stumbled on them.

Here is how it came about: I loved to bake and I do: breads, cookies, pies and all things sweet or savory.  My family’s favorite bread was Honey Whole Wheat.  I used to bake about eight large loaves (1.75 lbs. each) every week.  After the loaves cooled, I sliced them and placed each loaf in a plastic bag.

One day, my then 2-year old daughter ate a whole loaf, by herself, hiding behind the coach.  When she reappeared, she had an enlarged stomach and complained of tummy ache.  I called the doctor who asked me to keep an eye on her for the next several hours.  Meanwhile, I discovered the empty plastic bag  and the fate of the loaf of bread.

Over the next four years, her already short menu (potatoes, bread, greens especially broccoli) got a little longer with the addition of bacon and ham.  She tried chicken twice and did not touch it  for a while afterwards.  A pattern emerged: few items in large quantities over a four-day schedule (one day of good eating followed by three days of very little food).  She had hard time falling asleep and staying asleep.  Many doctors later and thousands of dollars in debt, we were not closer to finding a solution.  Finally, our family doctor recommended allergy testing.  The very same day, I went to pharmacy and picked up the numbing cream necessary for these test.

On the way home, I tried to figure out how to explain the procedure to her since, by now,  she was terrified of needles, doctors, nurses and hospitals in general.  Once Joey realized that she would have to take many small shots for the tests to work, she refused to do it.  We cancelled the appointment and waited for her to calm down.

During the same weekend, we met a couple with a daughter whose symptoms almost mirrored Joey’s.  That Sunday afternoon, the mother brought us two bags full of groceries.  All the items were gluten and dairy free.  Joey loved some of them like the cereal and muffins.  She also called some of them “cardboard”.  Within days, her feet and hands lost their customary puffiness and she became more active.

The next step was an appointment with a GI doctor.  In order for the test to work, I had to convince her to go back to eating  gluten: a hard task since she hurt from it.  We managed to get her to eat several crackers a day.  The test came back negative for celiac.  However, the small quantity of gluten, ingested during the week preceding the test, made her so sick, the doctor recommended to keep her on a gluten-free diet plus a  high dose of probiotics.

On the way home from the GI doctor, Joey was in high spirits.  She declared herself “cured” and proceeded to eat all the bread she missed for the last several months  ( read frosted cakes).  The sleepless nights and bi-weekly visits to the nearby hospital, in the middle of the night, resumed. To help her stay on this diet, I offered to become her buddy.  Several days later, my six-year-old eczema disappeared ( it comes back when I touch or ingest gluten products or their derivatives).

About ten weeks into this roller coaster ride, she stopped eating gluten.  Without an explanation, she got up one morning and asked for gluten-free toast and peanut butter.

We never looked back.


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