Anatomy of a Celiac Patient

Anatomy of a Celiac Patient

My daughter, Whitney, went to college; shedding herself of the childhood encumbrances of parental oversight in the natural evolution of a young adult.  It was hard having our first born leave the nest. She was a joy to have in our home where we catered to the diet of a younger brother with Celiac Disease. Celiac disease is a digestive disorder causing one to be unable to digest gluten. Because Whitney'a health also improved while eating a gluten free diet, she had mostly stayed on it without complaint.

 Brett was diagnosed when Whitney was 9 years old. Since his diagnosis the whole house had been cleared of any glutinous products such as wheat (flour), barley, and rye so he wouldn't unwittingly pick up something toxic to himself and pop it in his mouth. Goodbye to crackers and cookies, cake and a myriad of other delightful foods.  Whitney, at age 9,  became the accidental beneficiary of improved health through her 4 year old brother’s diet.

Lest you believe that this was a sad, sad existence, you would have had to be there to see what an unfolding relief the diet came to be.  Like a jigsaw puzzle slowly completing itself, our family was healing from all our little ailments and miseries. Our family was going to the pediatrician fewer times each month; kids were being potty trained earlier; fewer days were missed in school for illness; bed wetting stopped; kids slept through the night; complaints of stomach aches disappeared; energy was restored to all of us. It was as if air was being pumped into a deflating life raft. It was a miraculous diagnosis and diet.

So when Whitney left for college, I didn’t foresee the complication peer pressure would present. It wasn’t long before Whitney’s roommates confirmed Whitney's doubts as to the necessity of such a strict diet. She ascertained that she did not really have a doctor’s diagnosis of Celiac disease and that it was her brother who had the disease, not her.  She started to resist the necessity of staying gluten free. I don't doubt that she decided that she wanted to have a definitive diagnosis. If she had Celiac Disease, she wanted it to be proven. She told me that she planned to go back on a regular diet and my heart sank at the decision from which I could not coax her.

Whitney had eaten gluten outside the home off and on, before leaving for college, when she was out with friends. I could see a difference in her health when she was totally gluten free but she was not convinced that she had a Celiac Disease. Our doctor had refused to test my other children for Celiac Disease after Brett was diagnosed because he said it was so rare there wasn’t a chance any more of my kids had it.  Also, it was an expensive test that the insurance wouldn’t cover without cause. I will say that prior to Brett’s diagnosis, my son Brad had been tested for Celiac Disease and it was inconclusive. I will address that later in my blog when I discuss Brad.

In Jan. 2001, Whitney addressed the problems she had been having for three years of college.  She had overwhelming fatigue, gastrointestinal distress, terrible breath, frequent urination, diarrhea, pale stools, occasional numbness in her extremities  among other symptoms. After trying to eliminate milk and fruit from her diet, she realized it wasn’t helping her over-all heath.  She went to the Dr. and was diagnosed with Celiac disease.  She had a biopsy at the University of Utah to confirm it. 

I keep hoping for a better, more conclusive, inexpensive test.

I keep hoping doctors will recognize the symptoms and have people tested for Celiac Disease.

Chances are, Whitney would have tested negative to the blood test if she had not gone 3 years on a regular diet.  Many false negatives have been found when the disease hasn't progressed long enough. But what a shame to lose three years of health unnecessarily. 

Celiac Disease is an inherited disorder. It seems realistic to test first degree relatives of those who are diagnosed. But, the bottom line is if no one can help you find answers; when all else fails, it makes sense to try a gluten free diet and see if it makes a difference.

JOY COMETH IN THE MORNING

I remember when I was pregnant with my last child and I couldn't keep any food down, I thought my suffering was more than I could endure; and I thought maybe I wouldn't live through this pregnancy."When dark clouds of trouble hang o'er us and threaten our peace to destroy. There is hope smiling brightly before us and we know that deliverance is nigh." Hope wasn't smiling before me or behind me or anywhere in sight. At times like this, we often think of Job. HE LOST ALL HIS BELONGINGS AND HIS CHILDREN IN A SINGLE AFTERNOON! Yet, he didn't lose hope, despite his wife telling him to curse God and die.

We read about Job and then we have Psalms and Proverbs and on the other side of Proverbs is Ecclesiastes. When I say on the other side of those books, I mean REALLY on the other side. Job, full of hope despite almost 40 pages of his so called friends calling him to repentance for his supposed sins, doesn't give up on life.

Ecclesiastes looks at the world darkly as if through the eyes of an unbeliever. If you have ever read Job and Ecclesiastes, you have experienced a lesson in frustration. Job's story can be told in three chapters at the beginning and one chapter at the end. All the middle is tortuous. Try reading through it sometime. Then imagine reading it when you have boils all over your body and you will still never know how Job felt. What a smart thing it was to have those chapters to plow through to remind us not to make our friends' suffering worse by offering unhelpful advise when someone is already thickly thrust into a trial.

The end of Job is so wonderful. He is given twice the blessings he had in the beginning. Exactly twice the livestock is restored and exactly the same amount of children are added to him when the dust settles. BUT, when the Lord gave him his second set of children, he WAS doubling the children he previously had because his first set of children are his for eternity through the covenant. So he ends up with twice the children, eternally.

To turn to the Ecclesiastic opposite or maybe not so opposite, we see 11 chapters of Eeyore like pessimism. It seems that the preacher has had his glass half full everlastingly too long. It is as hard to read through as most of Job only sooo much shorter, thank heavens. Finally, after we feel how depressing it is to look at life through the eyes of the hopeless unenlightened soul, we see that it was also just a lesson in the absurd. If life is even a little better by obeying the commandments, why wouldn't we do it. The last verses of Ecclesiastes teaches us how refreshing it is to think positively, just like we learn at the end of Job.

The little baby that came at the end of that pregnancy was so worth it and I didn't die. I didn't even come close. Even if my dad told me it was all in my head. I realized I did have some hope or I would have stopped eating and died. I hope I never have to suffer as Job or be as depressed as an unbeliever. Nevertheless, I know it is true as the psalmist says: "Joy cometh in the morning".

Moses and Me

I just happened to drop into the temple office the other day right when they were looking for a key that had been misplaced the night before. I was the only one in the temple that day that was there when the key was misplaced and I was able to tell them who misplaced it. I don't think that is a coincidence. They needed that key right that minute and they would not have been able to find it if I had not walked in at that moment. No, it wasn't me that misplaced it.

Moses' float down the Nile to the Egyptian princess wanting a child was representative of all the little tender mercies we receive at the Lord's hand. We are guided with the Lord's hand and we are all known to Him.

While teaching seminary this year, I have unearthed the stories of the Old Testament that I had only surface learned before this year. I knew most of the stories. But, I had never read the Old Testament cover to cover. These are some of the things that I have learned from Moses:

1. We all have a mission or calling. Like Moses, we feel inadequate at times and like sleep deprived young mothers, we often feel like the task is too tedious or too long. But, then come the blessings and the miracles when we are saved from the burdens of life and see the fruits of our labors grow and make us feel overjoyed. Like the parting of the Red Sea, seeing our little children learning to follow righteously is a joyous occasion.

2. Each of us have to overcome worldliness. We have to get the Egypt out of us. The sooner we do, the sooner we acquire the peace of mind that feels like the promised land. It's like taking the garbage out. If we hang on to our garbage (even if it doesn't seem like garbage) our whole world begins to stink. We have to daily ask ourselves, are the things I own, owning me? Tonight Glenn and I moved all the things out of one of the extra bedrooms so they can lay carpet in there. I WILL NOT move everything back into that room. I must get rid of accumulated STUFF. Things can suffocate us if we're not careful.

3. Faith precedes the miracle and the everyday sacrifices we make and rituals like daily prayer and scripture study remind us of the ultimate sacrifice of The Son. I'm frankly glad that we are not required to sacrifice livestock as they did in the desert. I will gladly offer up a broken heart and a contrite spirit.

4 Sickness and trials follow us on our journey. But if we look to God, we can live like the children of Israel looked to the serpent on the pole. How sick must we be before we ask for a blessing? We don't have to wait until we drag ourselves lifeless before Him. Bad things come to good people as well as bad. But, the Lord helps those who ask in faith.

5. The Lord gave manna, quail and water when they couldn't find any for themselves. The things we can't provide for ourselves can be miraculously acquired when we humble ourselves before Him.

6. When we become greedy everything begins to fall apart or become rotten as the food did when they began to store up more than they needed for the day.

7. When the children of Israel turned back to their evil ways, all the promises made to those who stayed faithful were withheld. They were not allowed into the promised land.

8. The worship of idols were wasting time in the children of Israel 's lives. They kept slipping back to superstition as we often slip into mind numbing habits that waste our time and take us from responsibilities of family. Enjoyable things come to bad people as well as good but don't be mislead into thinking that everything enjoyable lasts forever. "Lay not up for yourselves treasures on earth....For where your treasure is, there will your heart be also."

9. Lastly, the importance of following the prophet (as Moses was their prophet and head) was one of the most important lessons in Exodus.

Our journey through this life is filled with all the trials of the 40 years of wandering through the wilderness. That story is to help us as we wander through the wilderness from conversion to the promised land. I'm glad my journey isn't laden with quail and desert heat.

Walking home from the Old North School

When I was in elementary school, I often walked home for lunch. Sometimes my dad accompanied me because he was a teacher at my school. When I was alone I usually read a book as I walked. It is a wonder I didn't kill myself tripping over something. I always stopped reading at intersections and I had one eye on the book and one on my surroundings, supposedly. I repeated this exercise after school but there was much more company on the sidewalks after school.

One day, while walking home after school, I realized that I had to go to the bathroom so bad that I couldn't make it all the way home. I decided to stop at a neighbor's house. Beth Moulton quickly answered her door (thank goodness). She was dressed in paint covered clothes and wore a scarf covering her hair. She was holding a paint brush. Panicked, I asked her if she was painting her bathroom. She laughed and said, "No, I'm painting my basement."

I sighed with relief and said, "Good! I'll never make it home to my bathroom. Can I use yours?"

She opened the door and let me run inside. I could hear her chuckling heartily as I sprinted past her. There was never a time that I saw Beth in the last few years of her life without her recalling that day and laughing once again at the memory.

SHARING TIME

Walter Seiter was one of my first church leaders growing up. He had 10 children who were good kids. My mother asked him once how you get children to learn to share with other children. He answered confidently that you just have more children. He didn't elaborate, he just said it matter-of-factly. I've heard lots of theories about family dynamics and the part birth-order plays in a child's life. But, each child gains coping skills unique to themselves that helps them in differing ways to adapt to society.

Whitney is my oldest child. She has a keen mind and reasons well. She had only about 16 months of being an only child. She didn't have time to develop too much selfishness before Cassie came along to share my time and Whitney's toys.


Speaking of toys, we came from an era where toys were not widely available in the stores except at Christmas time. There were five and dime stores that had little toys like cars, bouncy balls, rubber snakes, rubber punch balls, toy soldiers, slinkys, etc. But, baby dolls, barbies, tonka trucks, etc. came out about Thanksgiving time. We loved getting the Sears Christmas Wish Book catalog. What fun it was to choose the toys you wanted for Christmas. So, we rarely bought toys for our kids anytime but Christmas.

The fun part about that is that we got the kids each a toy or two of their own and then the rest of the toys were basically designed to be shared. If we knew the toy wasn't shareable, we made sure each child had something very comparable so they wouldn't fight. One year we got Cassie a little bald baby doll and Whitney got a pretty little baby doll with black hair. Tragedy struck when Whitney liked Cassie's doll better. Whitney enjoyed the other toys but blatantly ignored her baby. No amount of praise for the doll swayed her disdain for the doll.

The neighbor girl, Dena Groff, came down to see what the kids had received from Santa and took one look at Whitney's doll and fell in love. She couldn't figure out why Whitney didn't love it. Dena said, "I've got a doll like Cassie's except she has a blue dress." Cassie's was pink. I said, "Dena, do you like Whitney's doll well enough that you'd like to trade your blue doll for Whitney's doll." She was aghast at the suggestion. She said enthusiastically, "Of course!" Whitney's doll was a much more expensive doll. Off she went to bring her old doll over to the house. Whitney grabbed the bald little doll and hugged it and hugged it and never even looked back as Dena carried her new baby off to her house feeling like she won the lottery. I learned then that you can never go wrong if you buy the exact thing for two close-in-age children.


One year, I found two Cabbage patch kids that looked alike to me. When Cassie found that hers had a tuft of hair under the bonnet, she was deflated. Whitney's was bald. So, she slipped into the bathroom one day and shaved it off. She wasn't delighted with the result but she was happier knowing that it was closer to perfection. Babies in our family didn't have hair! Anyone knows that!


Whitney and Cassie played pretty well together. The oldest child has the advantage over the younger for a little while because of age until the second child learns how to deal with the advantage. The second one learns to refuse to do the thing the older one wants to do (even if he/she really would like to play). That causes the older child to have to bargain with the younger one and the playing field gets evened out.





Whitney and Cassie played school. Whitney was always the teacher and Cassie was always the student with no authority. Cassie refused to play, choosing to make Whitney teach her dolls. This brought on tears for Whitney. Cassie got this smug little look on her face that said, "I won!" Mom was brought into the picture and I assessed the situation by asking lots of questions from each child without showing any bias. Then I tried to get each one to see the other's point of view and a compromise was struck by allowing Cassie to be the teacher first and then Whitney would get to be the teacher next. Both were mostly happy but sharing occurred. In most cases tears were my signal to intervene. If the mother doesn't intervene...often the second child begins to take over control by tormenting the older child; refusing to cooperate in ANY activity and teasing incessantly.

Sunny days and Mondays Always Turn Me Around

Today I awoke at 5:45 and went to teach my church history class at the church. My co-teacher and I discussed the rest of the week's plans and I went home. At 11:30 A.M. I checked my email and saw a reminder of a doctor visit that was at 11:20. I was stunned. I had missed my appointment. I ran to the car, after grabbing my purse, almost without touching the ground. The stop lights were in my favor except at two long lights. I made it in 20 minutes. But, I was too late. The doctor was already at lunch.

I was so embarrassed because I had missed a previous appointment by putting the date on my calendar a week later than it really was. How could I explain two missed appointments. No matter that I had not missed a single appointment in the previous 10 years. Really it is true. I was commiserating to the lady at the counter looking for another appointment. She couldn't find another opening today and the operator wasn't answering the phone with other options. I said, "I don't know what is wrong with me. I've been thinking today is Monday all day." She kept typing on the keyboard looking for an opening, without responding. "Well, thank you for trying," I said. I'll call when I get home. She shrugged her shoulders and sympathetically said, "I'm sorry I couldn't help you."

Back at home I was thinking about how I told a friend I would go Christmas shopping with her tomorrow and that I must have been crazy. Tomorrow I have to go to the temple. Wait! Tomorrow isn't Wednesday, my temple day. Tomorrow is Tuesday. WAIT!!!!! My Dr. appointment is on Tuesday!!!! I didn't miss my appointment! It is tomorrow. Today IS Monday. No wonder the lady didn't respond when I said I had been thinking today is Monday. She thought she was dealing with a lunatic and it turns out, she was.
Now what are the odds of my remembering my appointment at 11:20 tomorrow? And aren't I glad I didn't call my piano student when I thought he had stood me up this afternoon? Yes Scarlet, "Tomorrow is another day," (Tuesday that is).

There's always room for one more.

When Brett was a couple of years older than this picture, he spent the night at a friend's house on a Friday night. We knew the family well and we went to pick him up the next morning. The family had the exact floor plan our house had and early in the morning, Brett sleep walked into the parent's bedroom. Without waking up, he crawled onto their bed and snuggled in between the two parents and kept sleeping. Hating to wake him, knowing he might be shocked and embarrassed, they went back to sleep until an hour or so had passed and they both sneaked out of bed to begin the day. Lots of laughter was had when he finally awoke in a strange bed in a strange house. That's what I call making yourself at home.