On Tuesday we had our official meeting with the dietician about celiac disease. The meeting itself wasn’t particularly insightful – but we went into it well informed to begin with. I didn’t really know what to expect. The dietician was friendly and she did ask us some questions and told us a few things. In the end, we left with a three page handout with the most important information. In addition, now that we’ve met, I can email her with questions at any time.
Looks at this experience as an educator, and reflect, I see that she did some things really well. Instead of giving us an handout with an overwhelming amount of information, she cut it down to a concise three page handout with the most important information. The information included some general guidelines for gluten free eating, a short list of what to eat, what to avoid, and hidden sources of gluten, some quick meal ideas, and three good websites for more information: Celiac Disease Foundation, Celiac Support Association, and Gluten Intolerance Group. I was aware of the first, but not the other two.
I keep thinking that I should be getting more information. I keep thinking that this should be a bigger deal. But in reality, it is pretty simple. I have an auto immune disease that is completely treatable by maintaining a gluten free diet. The challenge is figuring out all the hidden sources of gluten.
Last night I started going through my medications. I called my pharmacy to have them add “gluten” as an allergy. I was impressed when the Express Scripts pharmacist says that now that it is listed they will check all generics before sending them to me. For all the meds I already have, he gave me the phone numbers for the companies. This morning I started making calls. Sadly, the melatonin I use from Costco is not considered gluten free. Fortunately, I’ve found the CVS brand melatonin is. The meds I’ve checked so far are OK, but I have a few more companies to call. Hopefully by the end of Friday I will have checked all my meds.
Ironically, Tuesday just before the going to see the dietician I got glutened (in the celiac community, the verb ‘to be glutened’ means to have accidentally ingested some form of gluten). I asked my husband to grab a smoothly for me at the office. He grabbed one for each of us and allowed me to choose. I looked at the ingredients – one had ‘wheat grass’ so opted to not have that one. Neither were labelled gluten free. I thought that I had chosen the safe one. It had fewer ingredients and none that looked suspicious to me. I learned from the dietician that one of the ‘hidden’ sources of gluten is in “artificial flavor” and “natural flavor”. Upon returning to the car we learned that “natural flavor” was an ingredient. I can confirm (based upon my bodies reaction) that indeed the smoothy was NOT gluten free. Live and learn.
On the list of hidden sources of gluten that surprised me:
- brewers yeast
- triticale
- malt
I noticed the little gem about “artificial flavor” and “natural flavor” are not on the list from the dietician. She also promised a list of bad ingredient in medications and supplements – which I don’t have appear to have. Good that I can just send her a message on the my Health (secure email) system.
In addition, the dietician mentioned that “starch” when listed as an ingredient is suspect unless you know the source of the starch or the food item is listed as gluten-free. So, potato starch or corn starch are OK, but starch or vegetable starch is not. I’m also in the process of going through any powders that I consume – such as electrolyte drink. I’m going to have to change from my previous favorite to the Vega brand, which is labeled as gluten free.
