When my son Sam’s intestinal biopsy came back “negative” for celiac disease in 2008 (after his celiac blood tests were blatantly positive), I had a big decision to make. To implement the gluten-free diet right away or allow him to continue eating gluten until he was “sick enough” that the gastroenterologist could obtain the appropriate scientific proof to satisfy the standards of care for a celiac diagnosis…and show that the gluten-free diet was indeed warranted.
I can imagine this would be a very difficult decision for most parents to make, especially when the M.D. is telling you that it’s okay for your child to keep eating gluten. I was looking at it through a different lens though, because I had five autoimmune diseases under my belt already, including celiac disease. I also knew that I had had celiac disease (at least in the form of dermatitis herpetiformis) for decades before it was finally discovered because I never looked sick nor did I have any gastrointestinal issues. By that time I was finally diagnosed with celiac, the systemic damage was significant and there was no opportunity for do-overs.
My son however, had an amazing opportunity before him, to avoid the same fate as his mom and all he needed to do was eat gluten-free. While my autoimmune diseases are fairly “easy” to manage through diet and medication, there are even scarier autoimmune diseases that now keep me awake at night…diabetes being one of them. Below, you will see why it scares me so much, as Michelle shares the story of her son Westin, an amazing young man who lives with both Type 1 diabetes and celiac disease (as well as asthma and epilepsy).
Welcome Michelle and Westin!
My name is Michelle and I am a homeschooling mom of 2 boys. My oldest son was diagnosed with Type 1 Diabetes at the age of 2, followed by Asthma, Celiac Disease, and Epilepsy to name a few. My youngest son has been a personal test to see if I can avoid these same health issues with him, so far so good. (Not that I am sure I can really control it). I am passionate about information. I collect a ton of it! Beyond health information, I am also passionate about sustainable living and building. I blog at http://www.earthsheltered.org.
It was January 30, 2000, a Sunday afternoon when my father in law, Gerald, brought Westin, 2 years old, home from a weekend visit to his house. He was our only child and we enjoyed the occasional weekend alone. We would send him off and not think too much about him while he was gone. So when my father in law brought him back to us on Sunday afternoon, we weren’t too surprised that we hadn’t heard from them all weekend even though Gerald informed us that he thought Westin was sick, since he had slept most of the weekend. Huh? Weird. Westin got home and had already crashed on the couch as Gerald was filling us in. He spent the rest of the day on the couch, waking every few hours for something to drink. I was sure he had a sore throat or something. He was 2. Two year olds aren’t the best at conveying how they feel.
My husband is really annoying sometimes. He is the first to say, “Better call the doctor!” He was the breadwinner in our home. I was a stay at home mom since Westin was born in 1997. I was the one that had to go to the doctor, so it wasn’t always a trip I looked forward to. But the persistent man that he is, he kept saying, “Don’t forget, you need to get him into the doctor today.” It was Monday morning and I made the call. They could see Westin at 5pm that evening. (Yes, I remember that much detail. Don’t ask me what we ate yesterday though!)
To keep Westin awake, we spent the day at our shop (we are self employed), which helped. We waited until 5pm and I took him into our pediatrician, alone. We sat in the exam room and the doctor noted that Westin had lost something like 6 pounds! On a 2 year old, that is a lot of weight! The doctor suggested maybe Westin was depressed. WHAT?! The doctor left the room for a moment and I kept thinking, depressed?! What am I going to deal with at age 16?! The doctor returned and suggested I put Westin back on whole milk, anything to get some extra calories in his little body. He also suggested we stop by the lab at the hospital for some tests, “Just in case.”
We went across the parking lot to the lab and they drew blood and asked for a urine sample which ironically we couldn’t get as Westin was still in diapers and his diaper just wasn’t wet enough to squeeze urine out of. They asked if we could wait around town for a little bit so they could try again. We went back to the shop until around 7pm and headed back into the hospital, hoping to complete the test. I honestly can’t remember if they were ever able to squeeze any urine out, those darn diapers ARE meant NOT to leak! We ran to the grocery store on the way home and arrived home, I would say, around 9pm or so.
That is when the world changed. We walked in to find 11 messages on our answering machine. The pediatrician had called and he had called our emergency contact. (Yes, that is why you need an emergency contact.) He couldn’t tell our emergency contact, again, who was my father in law, Gerald, what was wrong so that just sent up alarms. Gerald had called other people in the family, trying to locate us, and they had all called us, trying to locate us. We called the doctor at home and he gave us the news. As I held my baby in my arms, I heard the words, “Your son has Type 1 Diabetes.” I just broke down in tears. The first words out of my mouth were, “What’s the prognosis?” I really had no idea what Type 1 Diabetes meant. We had no one in the family with Type 1. I was really clueless. He assured me it would be ok, that he would live a long life. But that I needed to pack a bag, that the Children’s Hospital was expecting us. We should expect to be gone a few days. I remember asking, “Are you sure we can drive him there ourselves? We don’t need an ambulance?”
We checked into the hospital about 11:30 that night, Monday, January 31, 2000. I remember the car ride there, trying to keep my baby awake. I wasn’t sure why, I just felt better knowing he was awake. I don’t remember how high his blood sugar was, but he was in Diabetic Ketoacidosis (DKA), a very serious and deadly side effect of extremely high blood sugars where the body turns to burning body fat to produce energy when there is not insulin available to convert sugar to energy. It is a delicate condition that requires a balancing of the blood chemistry. Many children and adults with diabetes die from DKA.
We spent 4 days in the hospital, learning how to keep our baby boy alive. Yes, alive. Without insulin he would die. We retold our story, many, many times those first few days. They would ask: Was he drinking a lot? (Yes) Was he peeing a lot? (Yes, of course he was, he was drinking a lot!) Did you notice a fruity smell to his breath? (I guess.) Was he eating a lot? (I really don’t remember the answer to this question) Was he sleeping a lot? (You already know the answer to that.) I learned that in fact, he was peeing a lot and THAT is why he was drinking a lot. His body was trying to rid itself of the excess sugar. What was the fruity smell? That was the ketones in his breath. It will also make breathing more difficult.
The day after we checked into the hospital, our pediatrician called our room. He wanted me to know that he never thought Westin was depressed. He thought he had Leukemia and he just wanted to keep me calm so I could get to the lab. Boy did that put things in perspective. By this point I knew Westin was going to be ok. From that day forward I had a different relationship with our pediatrician. We had a new mutual respect for each other.
In hindsight, Westin had some symptoms of Type 1 Diabetes for at least a few months before his diagnosis. That fall (about 4 months before diagnosis) he was really clingy. He was so attached to me. I tried sending him to daycare a few days a week. I just needed a break. His one and only day in daycare, he cried the entire time. When I picked him up I took him to the pediatrician, just to be sure he was ok. The doctor’s advice was to keep him home. If I didn’t need him there, then don’t send him. I suppose Westin just didn’t feel good and that is why he was so clingy.
During this same time, he had a few events where he “shook”. We thought it was nerves, as it seemed to be when we were in new surroundings, with people he didn’t know very well. In retrospect, his blood sugar was probably low. When your body is first dealing with diabetes, it can over produce insulin, causing lows.
Westin was always a “drinker”. Of course at age 2, that means that for no more than 2 years, he always drank a lot of fluids. We thought that was just “how he was”.
So you can see we were clueless. Now, if my second child had these symptoms, I would have been on high alert. (And trust me, I was on high alert with him for the first few years. Somehow I calmed down a bit as he got older.)
Today Westin is 14 uses an insulin pump which delivers insulin to him on a pre-programmed basis with the addition of more insulin when he eats. This allows us to only give him the equivalent of a shot every 3 days. (He switched from injections to a pump when he was 4.) As he has gotten older, diabetes has gotten easier, but it is no walk in the park. Diabetes doesn’t sleep and so neither do I. Westin handles most of his care during the day. This includes checking his blood sugar before meals and inputting carbohydrate counts into his pump so a correct dosage of insulin can be delivered. I still handle changing out the infusion set for the insulin pump every 3 days and I also check his blood sugar 2-3 times a night. Type 1 Diabetes is about trying to balance insulin and activity. Everything you do affects how your body uses insulin. If you exercise a little more one day, your body will be more sensitive to the insulin, causing low blood sugars. If you exercise a little less one day, your body will be less sensitive to insulin, causing high blood sugars. If you are sick, you can be either more sensitive or less sensitive. You can see, it is regularly a guessing game.
When Westin was about 5 or 6, his diabetes clinic started testing all of the patients for celiac antibodies. Sure enough, the first time they tested everyone, Westin was one of three children to test positive. I believe his number was 19. (I am awful about remembering names of tests.) We were sent to a Gastroenterologist. He looked at the results and explained to us that the number wasn’t very high and that we had enough on our plates. He wouldn’t worry about it at that time. So we went on our way.
About 1% of the total population has celiac disease. It is more common in people with type 1 diabetes. An estimated 10% of people with type 1 also have celiac. – American Diabetes Association
I happened to have a friend with a son with type 1 diabetes whose mother was also type 1 and had celiac disease. As time passed, maybe a year or so, she encouraged me to have further testing done. We met with a different Gastroenterologist and she explained that with a low number like 19, the previous Gastro probably felt that the chance of a positive biopsy was low. She agreed that it was a good decision to wait. But by this time his number had risen (again, I don’t recall what it was, but I want to say closer to 100.) and she agreed it was time to do a biopsy. In May, (Or maybe it was June by the time they called with the results) 2005, at the age of 7, Westin was diagnosed with Celiac Disease. We were informed of the diagnosis by a phone call from someone in the Gastro’s office, with instructions that the dietician would be contacting us. We waited. Finally, we just started to change over to a gluten free diet. We didn’t go cold turkey with Westin at first. Slowly, over that summer, he made the choice to completely cut the gluten out of his diet. He had zero outward symptoms of the disease, so he never felt bad from eating gluten. But as his body got used to being gluten free, he started to have symptoms of diarrhea when he would consume regular gluten foods, like bread. This made his decision to go completely gluten free a bit easier. He once said that he didn’t want to be stuck on the toilet for a week! I have never wanted to be the food police. Letting him get to that place himself made the transition so much easier. Oh, and by the time the dietician called, it was way later in the summer and we were already well on our way to gluten free. We never did meet with her.
What I know now? Type 1 diabetes and Celiac Disease go hand in hand a lot of times. Over the last 6+ years, I have had many friends in the diabetes community have their children diagnosed with Celiac Disease. I have been so happy to help, as my friend helped me.
I also know that while I thought Westin didn’t have any symptoms of Celiac prior to diagnosis, once again, in hindsight, he did have one. We would experience low blood sugar shortly after meals. This was due to slow absorption of food. The food was absorbing much slower than the insulin was taking affect. This was due to the damage to his intestines, proven by the biopsy, even though we saw no other symptoms.
This also means that just because he doesn’t have symptoms of gluten contamination, doesn’t mean that an item of food is safe. This is a blessing and a curse. While he doesn’t get ill if he has something that might have been “glutened”, unless it is a lot of gluten, we really have no clue if something should be avoided in the future. “No symptoms” doesn’t mean “no damage”! Checking antibodies once a year seems pointless to me, as there is no way to back track to see what could have been a problem food. Celiac’s need something like a blood sugar meter that would allow more testing of antibodies. Once a year testing just seems naive.
My beliefs are evolving. A few years ago there was a parent of a child with diabetes who was advocating that a positive antibody test was enough for a diagnosis. I was adamant that I would never put my child through that lifestyle change on a whim, that a biopsy was necessary. I would now like to apologize. I completely agree that it makes sense to go gluten free after a positive antibody test. The body is reacting, simple as that.
Type 1 diabetes was the beginning of a new life for our entire family. In the years to come, we would deal with a few more diagnoses for Westin. After the Celiac diagnosis came asthma. Next it was epilepsy. More recently he has something going on like Irritable Bowl Syndrome (a.k.a., we don’t know what it is). For the most part, we have taken it in stride. That is the biggest lesson Westin’s Type 1 diagnosis taught us, “Don’t panic. Get educated first.” Even when my mother was diagnosed with Inflammatory Breast Cancer, I didn’t panic. Some might even say I didn’t react at all. But I did. I headed right for my computer and started researching. That is what I do. Education makes me feel like I am in some sort of control. Isn’t that why we are all visiting this blog? Thank you, Heidi, for helping to educate us.
Related Medical Abstracts and Articles
Celiac and Diabetes
Thank you Michelle and Westin for opening your world to us. I know firsthand the power a personal testimony can have on someone you don’t even know, and your story will no doubt leave a lasting impression for someone out there who is struggling to find answers of their own.
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