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.