I told my kids when they were learning math facts – addition, subtraction, and multiplication tables. I told them this stinks, but that they were learning the rules of math. When they knew the rules well enough, they would get to use the rules to their advantage and have a little fun. Yes, I’m a dork – I think algebra is fun!
Anyway, I’ve been thinking about it and here are the rules of celiac as I see them…..
First, never, ever purposefully eat gluten. No explanation needed here.
Second, get a complete diagnosis – blood test and biopsy. If they disagree, consult the doctor and find a root cause. A celiac diagnosis may be where things end up, but further evaluation is needed to confirm. Some will say a complete diagnosis is prohibitively expensive without insurance – it might be, but so is adhering to a gluten free diet that is unnecessary because of an inaccurate or incomplete diagnosis.
Third, eat whole foods and make them the bulk of the diet. Whole fruits and vegetables, proteins, dairy, eggs, and whole grains, like rice. Some have trouble with dairy, obviously cut dairy out if it bothers you.
Fourth, not everything is related to celiac. Lots of symptoms pop up in people with celiac disease. Before diagnosis the headache I have would not be blamed on celiac and the headache is probably unrelated to celiac now too. As a side note, I broke my toe – not because of celiac or my bones being weakened from celiac, but because I dropped a heavy serving dish on it. My toe would have broken if I have celiac or not.
Once, the first three have been mastered, let’s move onto the next few.
Fifth, when eating out, be exceptionally careful. Eating out with celiac can be done safely. First at a gluten free restaurant and then, at the most expensive restaurant you can afford. Finally and the least safe option, but some place where you know they do a good job with cross contamination in the back.
Sixth, don’t let the naysayers get to you. Not everyone will be supportive of your medically required diet. Not everyone will make you a gluten free meal or want to hear about all of the trials and tribulations of being gluten free. It doesn’t matter what anyone else says. You are taking care of your health and that is the most important thing. See #7 for help.
Seventh, invest in teflon underwear! The teflon underwear will protect you from all of the slings and arrows of people saying that you are making stuff up. The teflon underwear will make you strong and powerful and able to stand up for yourself. The teflon underwear may be uncomfortable for a while, but after some time, you will love it!
Eighth, follow up with your gastroenterologist yearly or at least every other year. They can spot nutrient deficiencies and other celiac complications. Or if you feel your symptoms have changed or worsened, please see your doctor sooner.
Ninth, travel, or camp, or do what you want. Do not let this disease keep you at home or restrict your life in any way. There might be more planning for trips or other activities, but this disease should not stop anyone from doing or being anything.
Tenth, read labels every time. Sometimes formulations change, for example Nacho Cheese Doritos in the US. For a long time Nacho Cheese Doritos were labelled gluten free, more recently they are no longer labelled gluten free. Manufacturing changes and we need to be aware.
Eleventh, keep your head up. Celiac is tough. It is hard every day, three meals a day. Some days are easy and some are hard, but we just gotta put one foot in front of the other and keep moving forward.