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.