Newbie Pep Talk – 7 things to remember

You’ve just gotten a Celiac diagnosis from your gastroenterologist with positive blood tests and positive endoscopy. The doctor’s office probably called and said something like — You have Celiac disease, start a gluten free diet, and we will see you in 3 to 6 months!

Wait, what? That’s it?

For most, yep, that’s it. It happened to me just like this 7 years ago. Luckily, my niece was diagnosed before me so I had at least seen some of what was required.

Now, you probably feel lost and confused. You might feel like all of your favorite foods are gone and you will never eat again. You are wondering what you will have for dinner. You might even be afraid of eating again. What will you drink at parties? How will you go to parties?

First, this is not a death sentence. It will be challenging for the first year with a steep learning curve, but it will get easier. Know that you will make mistakes and it isn’t the end of the world. Know that at some point you will not trust the diagnosis and test it by eating a large amount of gluten. Then you will be sick for a couple of days and it will be better and you will have confidence in the diagnosis.

Second, there is lots and lots of food to eat. It may not be the same food you are used to but it is inherently a healthier diet than the Standard American Diet. (Note: I live in America, so I’m biased here.) The only deficiency in the gluten free diet is a basic lack of fiber. This can be overcome by fiber supplementation or an increase in vegetable consumption.

Regarding food, I would suggest for 6 months you try not to substitute your gluten favorites with gluten free. Here’s why – you will be disappointed. You’ve grown up with gluten foods and they are delicious. They have emotions and memories tied to them. You need to make a clean break. The comparable gluten-free versions of your favorite foods will be a disappointment. They require different preparations (all gf bread should be toasted, always). It will never be the same and will make you more and more sad to eat the gluten free versions. You need to just make a clean break, like ripping off a band-aid or having a bad breakup.

Third, not everything is gluten related. Knowing that in the first year there are lots of mistakes – having symptoms is probably gluten related. After the first year with a significant amount of knowledge about how your body works and how food affects it, you should know if you got glutened or not. You just have to pay attention. If you ate gluten free all day and are having “glutening” symptoms, it is probably a virus or food poisoning.

Fourth, if it tastes too good, it might have gluten. I see lots of posts where people say that they ordered something gluten free and it was AMAZING. Then they double checked and the item contained gluten. After a year, you know what gluten free bread or buns look like. Don’t be dumb. Know that if it tastes really, really good it might have gluten.

Fifth, find a 100% gluten free restaurant in your town or city or in a nearby city or town. It will keep you from going insane and having to cook all the time.

Sixth, don’t listen to all of the advice on the internet or in the Facebook groups. Some of it is good – like mine ;-). Some of it is terrible – activated charcoal or Dr. Boas magical pill will cure all glutening symptoms. (There are pros and cons to activate charcoal and I think the cons outweigh the pros. But do your own research and make a decision for yourself.)

Finally, you are not alone. Lots of people have been through this diagnosis and lived to tell the tale. If you need support, reach out to someone you have seen on Facebook or in your life that you respect and trust in their advice. Celiac can certainly feel lonely for a while, but it definitely gets easier. I won’t tell you a gluten free diet will cure all that ails you, but it will definitely get better and more easy over time.

So, relax, don’t beat yourself up, and know that it will all be okay. Even 7 years into this diagnosis, I make mistakes. But I am still here and writing blogs about it every day. 😉