Saturday, December 27, 2014

When a child is diagnosed with type 1 diabetes AND celiac



My son was diagnosed with diabetes in April 2011.  Then in May, we attended our first appointment with the pediatric endocrinologist - a two hour drive away.  At the end of our appointment, the doctor gave us a slip for blood work to be done right before our next appointment in August.  At that next appointment, the doctor gave us the next shocker - our son almost certainly had celiac, too, based on his sky high blood test numbers!  We had no idea he had even been tested for it, so it was quite a surprise!  I was a few months pregnant and already weepy, and so I, of course, dissolved into a puddle of tears at the news.

At first, I have to admit, that following the gluten free diet seemed more challenging than type 1 diabetes!  I spent a lot of time placing calls to companies asking if their products were, in fact, gluten free.  Going out to lunch became almost impossible, because every kid friendly restaurant seemed to have mostly foods containing gluten. Treating low blood sugar became a little trickier, too.  Plus, I often felt like a control freak supervising all the cooking and baking my relatives did when they came to visit.

Looking back now, I think a big part of the challenge with celiac was that it involved something so personal - my son's diet.  Changing the way you have been eating for five, ten, fifteen or more years can be a daunting task.  Everyone has likes and dislikes.  Some people literally cannot stomach certain foods at all.  Plus, there is a certain amount of comparison that can go on in people's minds when eating with other people.  I remember going to play dates with my two oldest sons when they were little and comparing in my mind my children's ordinary healthy snacks to other kids' super healthy snacks.  I often felt inadequate in the nutrition department.  I even feel this tension a bit meeting other parents with type 1 diabetes.  Some parents allow their child to eat a regular treat and others strictly control their child's diet.

At a future appointment, one of our diabetes educators, who is also a dietician, counseled us that our son could eat items not containing gluten but listed as being manufactured on equipment that may contain wheat.  This was a load off!  Nowadays, many grocery stores add a little liability disclaimer to virtually all their generic products stating they may contain wheat.  Does a can of plain peanuts really contain wheat?  Does a package of plain rice cakes also contain wheat?  We would often avoid those items just in case.  The dietician told us that type 1 diabetics who also have celiac often can eat products free of gluten but yet possibly manufactured on equipment containing wheat.  If your child has celiac, please consult your doctor or dietician for his or her own dietary guidelines.

Now that my son has dealt with celiac for three and a half years, eating gluten free has become much more routine.  We have discovered through trial and error which gluten free products are yummy and which ones are awful. My son really likes Udi's gluten free products but very much does not like Rudi's products (however, maybe your child will love Rudi's - everyone is different).  My son loves Bisquick Gluten free pancake mix, Environkidz peanut choco crispy rice bars, Rice Chex cereal, and glutino gluten free table crackers.  When we eat out, Wendy's gluten free menu has been great; plus they cook many of their foods in little plastic dishes which reduces the possibility of contamination.  My son likes Papa Murphy's gluten free cheese pizza, too.  He has not experienced any ill effects thus far.   My son's celiac test numbers always come back in the normal range, so we must be doing a good job.  If that changes, we will talk to our doctor and diabetes educator about changes to his diet, particularly when eating out.  Celiac.org has a nice little list of gluten free candies which is especially helpful around Halloween.  However, if your child has diabetes, too, you will need to look up the carb amounts and also decide how much candy you approve of him eating.

Since the rest of my family does not have celiac, I still prepare gluten containing meals like spaghetti or pancakes; I just make a separate batch of gluten free noodles or pancakes for my son.  In terms of baking, I use gluten free all purpose flour or brown rice flour in almost all my recipes.  The brown rice flour is one of the least expensive gluten free flours (and it is whole grain), but the finished products are slightly crumbly.  However, all my kids still think they taste good!

As for Holy Communion, if your local Catholic Church does not dip the consecrated hosts in the wine cup, your child may be able to receive Jesus solely from the chalice.  Remember, when you receive either the host or the wine, you are receiving both Jesus' body and blood.  Also, many churches offer a low gluten host that some people with celiac can tolerate.  My son has had no ill effects from receiving it at Mass.

Saturday, December 13, 2014

Teenagers



When my son was diagnosed with diabetes at age 11, I was very fastidious about writing everything down - almost compulsive about it - and following all the protocols to a tee.  I even wrote down everything he ate, thinking the endocrinologist would want to comment on his diet.  At that time, a BG in the 300s was atypical and a cause for concern.  My son even went to one checkup and had an A1C of close to 7!  He was voted the best patient of the day at the doctor's office!

Fast forward to now - the teenage years.  That A1C I mentioned was the best ever and it has slowly increased each checkup.  Because my son is a teenager and also due to the type of personality he has, he wants to be in almost complete control of his diabetes care even though he doesn't want to count carbs consistently, bolus after every meal, check for ketones when over 300 or when sick, or check his BG at least four times per day.

It can be super frustrating for us, as the parents, to see our son not want to take care of himself yet refuse to let us help.  At times, we see a glimmer of hope and maturity on his part - he will stay awake and keep checking every hour when he gets a BG of 400 late at night.  However, often that little hope of him taking better care of himself flies away into the wind.

When you have a teenager, especially one with a certain type of strong willed personality, you cannot just put your foot down and insist he do such and such a thing.  That only results in him including you less in his diabetes care and contributes to more anger and volatility in the relationship.

I wish I had the answer to this quandary.  Prayer is something good to do in this type of situation.  We have tried external motivators, but I feel, because they are not intrinsic motivators, they do not continue to motivate for long.  Praising him for the little successes is important.  Every checkup we attend, the doctor and the diabetes educator reinforce the importance of daily diabetes care which means that the information is not just coming from us - this is a good thing.  We have said those same things almost every day for the last 3 and a half years yet they do not seem to sink in.  Sometimes I think that laying off for a while might be the key.  In other areas that we have done that, there comes a point when maturity sets in and he amazes us!  However, it can be so scary to attempt this approach with regards to diabetes.  What has worked for you and your family?

Here are just a few links about teenagers and diabetes:

http://www.medscape.com/viewarticle/586455
http://www.ncbi.nlm.nih.gov/pubmed/16751852
http://www.everydayhealth.com/type-1-diabetes/one-moms-challenge-raising-teen-with-type-1-diabetes.aspx