Classic Case of Celiac Disease and One They Missed

Most people thought I was a little bit crazy having another baby when my first three children had so much tummy trouble and rashes and ear infections.

 But, I was determined to find out the cause of their distress and I wanted to have my children while I was young. I come from a family of six children and I hoped to have six, also. I had a hunch that if I found out what was wrong with one of the kids, it would be the answer to what ailed the others. I thought they’d grow out of it.  That’s what the doctors were telling me.

 Brad had been on an elimination diet of chicken and rice, suggested by his doctor. His rashes were driving him crazy but the vomiting was worse. They wanted me to feed him potatoes but at first he couldn’t even hold those down.  So, I started adding other things into his diet one by one as we waited while Dr. James Tipton, a pediatric gastroenterologist, scheduled Brad for a upper and lower endoscopy. The scope proved to be inconclusive for all maladies they tested for.  It wasn’t until 3 years later when Brett was diagnosed that I found out that Brad had been screened and biopsied for Celiac Disease. I had never heard of Celiac Disease (I know now that Brad should have been on a regular diet when they did the scope because it was useless or nearly useless for them to look for damage to Brad’s intestine caused by Celiac Disease when I had him on an elimination diet amounting to a gluten free diet for 6 weeks or so. He had probably healed a lot and thus became a missed case of Celiac Disease.) In the picture below Brad had sores on his face from scratching his itchy rashes. 

Southern California’s best gastroenterologists had exhausted all their ideas on what was causing Brad’s rashes, abdominal pain and general gastric distress. They really did their best to get us off the merry-go-round we were on.They told me to be my own detective and find out what foods were causing Brad to have problems and eliminate them from his diet. They said he had juvenile irritable bowel syndrome , a catch-all term meaning his bowel was irritated and immature. They said it didn’t appear to be anything life threatening. They were convinced it was diet related. Truly, I WAS glad to rule out stuff that was pretty scary. I was grateful that they leveled with me and admitted that they didn’t know why Brad's intestine was irritated.

   I had decided to start being really careful with what I fed my family making sure to feed them whole foods with lots of vegetables and unprocessed foods. I found that any thing with sugar, whether sucrose, lactose from milk, or fructose from fruit, caused both boys to have abdominal pain. (It was later explained that sugar ferments in the stomach and causes gas pain when there is a digestion problem. That also causes bloating)

Soon after this photo we had a NO JUNK FOOD policy.  I began baking whole wheat bread. We really did eat a lot of vegetables, meat and bread. I made 10 loaves of bread a week and of course the symptoms continued. But, surprisingly, because we ate no simple carbohydrates like sugar and honey,  fruit  and milk they weren’t in as much pain. There wasn’t anything to ferment in the intestines.  BUT, I always joked that my kids had the ”fastest bowels in the west.” We didn't venture too far from a bathroom.

Brad took Atarax to deal with the constant itching. But, it made him sleepy. 

Brett was following right along in the colicky pattern of his siblings.  He started getting really fussy when I started solid foods.  Brett had 3 ear infections before he was 6 months old. They put him on an antihistamine for his rash and hives. During one treatment for ear infection, he had a terrible reaction to penicillin and broke out in giant hives. He developed a rash on his stomach when he was a year old and had hives a lot. By the time Brett was diagnosed with Celiac Disease, at age 4, he had fluid on his inner ear and his doctor was afraid of permanent hearing loss.  With successful administering of a gluten free diet, the fluid went away. He had no lasting hearing loss.

If you look closely you can see a red spot near the corner of Brett's mouth on his right cheek.  That spot   was a sign that some food had irritated him.  It would flare and fade for many months.

Brett vomited quite often but didn’t act sick every time.  It was just a "puke, run, and play" sort of thing.  He still didn’t sleep through the night most nights at age 3. He had a really bloated stomach too.

 Brett was so small that he was beginning to get frustrated about not being able to reach things.  His size wasn’t keeping up with his age. He was really crabby and not his normal sweet self.

Brett was 4 years old when doctors confirmed that his height and weight had flattened out on the growth chart. Brett had been a chunky little baby but when he started eating solid foods, he began slowing and then flattening to very little growth to bottom out off the chart below the 3rd percentile. 

Notice in the picture below that Brett's little sister, Hayley who is more than two years younger than him, is almost as tall as he is. Can you see Brett's bloated tummy, as well? His legs, arms and buttocks had no muscle.  But his tummy was huge, a typical sign of malnutrition. 

I had unwittingly, been feeding my kids so much gluten, it made Brett into a text book case of Celiac Disease. Here is Brett playing in the flour bin. That bin should have had skull and crossbones on it. One morning, I discovered that there was a collection of cups under Bretts bed that had sugar crystals on the inside. Brett admitted to waking up in the night hungry and going out to get a cup of sugar and eating it before falling back to sleep. (The doctors explained that he wasn't digesting food so he got hungry in the night and needed a quick energy source.  This is also a sign of malnutrition.) All my kids had trouble sleeping through the night and this was probably why.

The doctors tested Brett for Cystic Fibrosis and a myriad of other things. But, when they did a blood test on him to screen for Celiac Disease, it was positive.  They biopsied him to prove it.  He had serious damage indicative of the positive diagnosis.  They said his intestinal folds were so worn down, they looked like the inside of a garden hose.  

Because Brett had broken his arm at 18 months of age, they were able to take an x-ray of his arm and compare it to the 18 month x-ray.  In doing so they determined that his bone age was about 18 months less than his real age. He was 4 at the time. 

After we put them on a gluten free diet, Brad and Brett grew twice the normal rate of children their ages for the first year.  Then they grew at a normal rate. They grew 4 inches in one year. Because I had to get all the gluten (wheat, barley, and rye) out of the house, all the kids started feeling better.  But, the surprise came when I started feeling better too.  I started being able to put on weight and I had more energy.  I felt bad again every time I ate wheat when I ate out at a restaurant with my husband. I quickly became very strict in what all of us ate in and out of the house. My husband, Glenn was the only one that didn't avoid gluten. But, there was none to be had in our house.

The doctors shook their heads at my insisting to keep all the kids away from gluten.  They would not test them because of the expense of the test and the rarity of the disease. (Or so they thought then.  Now we know that at least 1 in 133 people in the general population have Celiac Disease) But, the results were worth the criticism.  We started noticing they had more energy; they were no longer anemic; they lost their Budha bellies; they had fewer rashes; their eczema slowly went away; headaches went away; they slept through the night; they were happier and felt like playing outside more; hoarse voices went away; runny noses dried up; no more ear infections; but most surprising of all was the bed wetting stopped. Meals  and food preparation were not easy in those days but life was good. 

Brad would later decide to go back on gluten at age 18, to get a definitive diagnosis.  His rashes recurred along with his intestinal symptoms.  But, the rashes were diagnosed as Dermatitis Herpetiformis, a skin reaction caused by Celiac Disease that some patients get.  I will do another blog on DH at a later date. An intestinal biopsy proved Brad had Celiac disease at that time.

Progression of Celiac Disease

When Whitney was a 3 month old baby, she got thrush.  It began the endless parade of ailments she would get. Tummy aches became common.

In the above picture you can see a  red spot on her cheek that came and went. This is like the one she had at age two but the one she got later was larger and darker. It wasn't like a pimple. It was about the size of a dime and it was just red and looked like a hive but it didn't itch.(Brett later got a similar spot on his face before he was diagnosed with Celiac disease). Other skin rashes and hives came and went. 

As a little toddler, she presented with allergies that affected her congestion.  She was one year old when Dr. Lindsay said she was allergic to dust or pollen. Then, he added milk to his list of possible allergies.

 She was a very picky eater and was often constipated but would swing to having diarrhea on any given day.

She was a magnet to viruses because her resistance always seemed to be down. She was put on an antibiotic for strep throat when she was 18 months old and had frequent ear infections.

 I pinned a handkerchief to Whitney’s shirt so she could wipe her constantly dripping nose. She often had fevers and congestion. 

She was a poor sleeper with frequent wake up periods with what appeared to be tummy aches. She would wake up in hysterics that took ½ hour to sooth. 

She had problems with bed-wetting until age 9. (Not coincidentally, we removed wheat from the house when she was 9) She had a scaly patch of skin on the back of her head above her hair line that was really difficult to get rid of when she was 8. It looked like Psoriasis. 

She broke a bone in her hand and later broke an arm and even later she broke a vertebra in her back. Children with Celiac disease have more bone fractures.  Whitney also had a lot of aching joints especially in her legs/knees. The doctor called them growing pains.The kids at school teased her because her breath was awful. She had frequent yeast infections.

Her doctor was concerned about muscle wasting in her extremities and buttocks. She was underweight and had short stature. At one point she had numbness in her extremities and face without explanation. She had exercise induced asthma. Before age 9 she was prone to moderate headaches. 

Whitney ate wheat on occasion during her teen age years when she was not at home. And during those years she had blood tests that showed that she had protein in her urine.  She was also found to have had 3 times the normal amount of single chain fatty acids in her bloodstream. They sent her to a specialist in Los Angeles Children’s Hospital.  They said she was not digesting fats properly. And yet....they didn't believe she had Celiac disease. All the pictures above were before going on a gluten free diet. 

What we know now is that because Whitney didn't entirely rid herself of gluten in her teens, she was probably slowly damaging her small intestine and would later be diagnosed with Celiac disease when the damage was finally obvious. But, the blood test would not be positive until she had been on a regular high gluten diet for 3 years. Our present tests are too unreliable in testing children and adults with early stage Celiac disease, especially when only minimal gluten is eaten in the home. I believe that it is the late diagnosis that made her have fertility problems. (Fertility problems are related to Celiac Disease) She was finally able to have a child through fertility treatments. She was successful with in-vitro fertilization. Her subsequent pregnancies were all without further treatments.  I believe her body was finally healthy enough to allow a normal pregnancy.  She had her first child a little less than 5 years after her definitive diagnosis of Celiac Disease. It is believed that it takes about 3 years to totally heal the damaged intestine in a young adult. 

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.