Lactose and Carbohydrates and Gluten, Oh My!!

When I was about 15 I started having some, ahem, digestive problems. My super intelligent older sister had had similar symptoms and had started taking lactase (brand name Lactaid) with any dairy and found that helped relieve most, if not all, of her symptoms. I followed her advice and avoided dairy for a few days and when I tried it again, this time with the magical Lactaid, voila! No symptoms. It was like I was given my life back. I will say that it was a few years before I really had it under control as I didn't always know what was in my food (I was 15 and living at home) nor did I really think too much about it. My mom just couldn't believe that this was my problem and she even tried to kill me once with a quiche. After that episode I think she got the point. I never had the lactose intolerance tests done as this seemed to so obviously be my problem.

Then this year I was hit with this Type 1 Diabetes (T1D) crisis. An autoimmune disease. Autoimmune means that, for whatever reason, the body is attacking healthy cells. In T1D the body is attacking the cells that make insulin. No one knows for sure why it happens but they do know there is some genetic link. But what makes that genetic marker "turn on" and present as diabetes?? One of the theories is that a viral infection of some kind is the trigger. Apparently in schools where there are chicken pox outbreaks the community sees an increase in the number of T1D diagnoses several months later. An interesting theory but definitely difficult to prove. Another theory is that a stressful event is the trigger. I would say that being pregnant with twins and then having 2 babies and a toddler has been a stressful event. Days and months on end of stressful events. I think it is a little coincidental in my case that as soon as I started to feel normal again and had things under control that was when I started showing diabetic symptoms. Why is it important to know why? Well, if we can figure out why it happens then maybe we can prevent it in others. I would love to know how to prevent this from happening to my own children as I'm sure that at least one of them is also a "lucky recipient" of this oh so fantastic gene.

If you are diagnosed with T1D where I live the endocrinologist sends you for blood work to screen for Celiac Disease. Celiac Disease is another autoimmune disease that damages the small intestine. They do blood work that tests for certain antibodies and if those antibodies show up in the blood work it is an almost certain diagnosis of Celiac Disease. If you are diagnosed with CD you must never eat gluten. Ever. The list includes anything made with wheat, rye or barley (as well as others). Have you ever looked at the ingredients of the food in your cupboard? If you were to gut your pantry of gluten you'd probably have a very empty pantry afterward.

So why am I talking about Celiac Disease now? It turns out that in my antibody screen my levels were 10 times what a healthy person should have (normal is less that 20 and I was greater than 200). I will have to have an endoscope done to look at my small intestine and take some samples for testing. They shove a tube down your throat and look at your small intestine with a camera and then take teeny, tiny tweezers and collect samples. They better knock me out for this one. At this point I have been advised to continue eating gluten until the tests can be run to verify the diagnosis. I'm trying to enjoy my favorite snacks/meals now as I will almost certainly need to make changes in the very near future. This actually terrifies me. What kind of damage am I doing to myself while I continue to eat gluten?? I am actually looking forward to going gluten-free, as hard as it will be, because I am hopeful that I will just feel better. At least I will be able to manage this little lovely with diet. Insulin therapy is enough, thank you very much.

With all that is going on I am constantly watching my kids for signs and symptoms of both T1D and CD. I am more than a little paranoid and have checked the blood sugar levels of 2 of my 3 kids when I thought they were acting weird (both were normal). My husband outed me at our last diabetes appointment with my nurse and told her I even tested one of our cats (also normal). I have since tested the other cat too (normal). So now I have to consider doing blood work on my kids to see if they have Celiac Disease too. I don't present with "classical" symptoms and it could very easily go unnoticed in my kids. It is amazing to look at the looooong list of symptoms for Celiac disease, many of them NOT digestive symptoms. Depression. Lethargy. Migraines. Infertility. Miscarriage. Irritability (I bet my husband is looking forward to me going gluten-free to see if that helps!). From the reading I've been doing it appears that as many as 97% of people with Celiac Disease are undiagnosed. I guess that means I am in the lucky 3% that knows and can actually do something about it.

FYI, November is Diabetes Awareness month. Please visit http://www.diabetes.ca/awareness/ and donate today :-)