So...our baby boy has celiac disease

I have been holding off posting about our trials and travails with Timmy's health until we had definitive answers. Now that we have one -- celiac disease -- I can tell the story. Maybe someone else in my shoes will stumble across this and have an epiphany and maybe this will give family and friends a better understanding of what celiac disease entails.

Just short of 6 months, I decided to let Timmy experiment with food. Connor had lunged at my lentils at 5 months, 3 weeks...so why not let Timmy gnaw a teething biscuit while I fed Connor his breakfast? I got my answer a few hours later when Timmy was screaming in uncontrollable shrieking pain. He couldn't nurse; all he could do was draw his legs to his chest and suffer. It went on for HOURS. My parents and I took turns walking the floor with him. Mom and I alternated floating in a warm bath with him. The only relief he seemed to find was when mom stashed a warm heating pad under a blanket and cuddled him belly down on it. Even then, he sobbed quietly in his exhausted sleep. Finally at 930 pm after 8 hours of shrieking, I took him into the ER.

Prince William Hospital was great..they rushed him straight back and did tons of testing: CT scans, ultrasounds, blood cultures, stool testing, a full gamut. They weren't able to find much wrong, an elevated level there, a lower level there. They finally diagnosed him with a probable intussesception (bowels telescoping inside out, common in baby boys) and emergency transported him to Inova Fairfax for a pediatric surgery consult. As we walked in the building, he hiccuped and started smiling at everyone. It was eerie...like someone flipped a switch. The team was still prepped to cut into his belly but the radiologist decided to do one last ultrasound. Thank goodness he did because they didn't find the suspicious area this time. They chalked it up to a self resolving intussesception and sent us home at 7 am, weary but grateful. As we left, a doctor tossed over her shoulder that we might think about celiac. Um, what's that?

The next day he had some horrible poops. Anyone that has changed an exclusively breastfed baby knows that it really doesn't smell much. It wins the smell test hands down over a formula fed baby's waste. This smelled like a dead body rotting in the sun. It was eye watering. It was the strangest color too...white and green. Sorry if that's TMI, but it was definitely odd enough to make everyone ponder.

A couple days later, I gave Timmy a couple noodles to play with as I cooked dinner. A few hours later, we started in again on the cycle of misery and uncontrollable crying. It lasted for a shorter period...9 hours rather than 18...but still agonizing and obviously excruciating for him. Again the horrid diapers. Mom and I combed the days the incidents occurred to look for common factors and the only thing we could find was that on both occasions could isolate only gluten ingestion. I then started researching and figured that celiac disease was gluten intolerance on steroids.

We did a follow up appt with both the general physician and the military clinic to get a GI referral in the Tricare system. Our GP, Dr Buchinsky, admitted there was a good possibility that was a problem, though she noted the severity of the symptoms didn't match classic celiac disease. Most celiacs have a more sneaky pernicious onset...kids end up looking like they came out of an Ethiopian famine with a big belly and thin limbs, some diarrhea and discomfort, etc. It takes years to get diagnosed. This was not at all like that. Dr. B ran a celiac panel but warned us it would likely not be positive since he had been gluten free since the second incident and the test requires steady gluten ingestion. It was indeed negative, but I still wanted to pursue a diagnosis through a specialist.

After a HORRID experience with a GI NP at Walter Reed, I blew off all the torturous things she wanted to do instead of celiac testing. I ordered private DNA testing and the test came back two weeks later strongly positive for celiac disease. It's impossible to be more strongly celiac...with the gene combo he has, celiac is inevitable. And it apparently reared its head early. Celiac is NOT an allergy. It is not a sensitivity. It is an autoimmune disease where the body sees an otherwise innocuous piece of bread as a lump of poison and makes the body attack itself. The resulting damage to organs, GI tract and nervous system is cumulative and can lead to other AI disorders like lupus and diabetes or even cancer. You cannot outgrow it.

Luckily, there is a cure: maintain a completely gluten free diet for life. What is gluten in, you say? Oh good Lord. It's in barley, wheat, oats and rye. Guess what is in half the food on supermarket shelves? Oh yeah, barley, wheat, oats and rye and their derivatives. No pizza for Timmy! The more processed it is, the higher the likelihood is that there is gluten in it.

As I've done more reading, I am just floored by how underdiagnosed this disease is. University of Maryland has found evidence that 1 in 132 people in the US have it. It's more like 1 in 32 or 1 in 54 for certain populations like Finnish, Irish and British. That means that around 2 million people in this country have it with only 15,000 actually diagnosed. But those numbers are growing. People are finally recognizing the prevalence of it and the wide diversity of symptoms associated with it. You don't have to be a malnourished waif before you get diagnosed. Celiac disease can be anything from constipation alternating with diarrhea to extreme pain like Timmy to neurological issues like ataxia, behavioral problems, etc. This is not a problem for just babies, young kids or elderly people. In the US people go an average of 11 years before diagnosis. That's a long time to suffer damage to your system.

Now Connor is being screened. He has a 50-75% chance of also being a celiac. I'm taking the entire kitchen gluten free. Timmy is sensitive enough to have a reaction from a kiss from a parent post sandwich. It's daunting, challenging and exciting all in one to embark on gluten free baking and cooking. We're going to be focusing on simple organic recipes with alternative baked goods and focus on keeping as healthy as possible.

In a way Timmy's severe celiac symptoms have been a blessing. If they had not been so dramatic, if he had been a less smiley happy baby, if he hadn't reacted as instantly as he did when we could isolate everything he had eaten so easily, if, if, if...we could have had a child with severe malnutrition, neurological complications, and severe weight loss before drawing the dots together. Now we've had only three exposures, one accidental brother-feeding-granola-bars incident unfortunately, and hopefully we can minimize any future exposures.

I'm sure I'll be blogging about this quite a bit in the future...my mind is reeling with all the implications of this diagnosis. But for now...I'm so grateful we have an answer.