Part 4: I want to hear from you! (2018)

I want to hear from you!

Happy Sunday! It’s that time again.. and yes, this is the last question I have! Thank you again to everyone who participated in the last 3 posts… incase you missed it, go ahead and click the links to answer!

Just a reminder…

May is Celiac Disease Awareness Month, so I want to compile YOUR thoughts and feelings regarding the illness and share (anonymously) with everyone in order to help shed light and build a community together!

I want YOU to share YOUR feelings about living with the disease… this way we can see we’re not alone!

Here’s my last question:

“The best advice for someone newly diagnosed with celiac is _______.”

Your answers will be published in a blog post in May and will be anonymous, so if you’re uncomfortable leaving a comment here, please feel free to email me (kristina@msmodify.com).

I LOVE hearing from you and I know that your responses truly help others living with celiac!

Thanks for your help!

xo, Kristina

2 comments

  1. Mari says:

    Relax! It’s not a death sentence, it’s a life sentence. It’s an adventure. You will learn a lot about food, and different ways of making it.
    There are so many amazing products and flours, and there is always something new happening. A lot of those products and flours are expensive, so if you can, make your own. Gluten free products tend to be higher in carbs than their gluten filled counterparts, so if you find something delicious, eat it in moderation. Find a support group locally or online. People that have been living with Celiac Disease are your best resources. Subscribe to web sites like this one. You will get great advice, like what you can and can’t eat, and what to be wary of. Cross contamination is something I can’t stress enough. Even those of us who are vigilant can sometimes be exposed. Like the time I was at Red Robin happily eating a burger and thinking how amazing the bun was. It tasted just like I imagined a regular bun would have. It has been 30 plus years since I have knowingly eaten gluten. Fortunately I only had one bite. The server came over and apologized that they had given me a regular bun, and whisked it away. They replaced it, but it shocked me that a place I had eaten at for ten years, was now a place I had to be wary of. Knowing what to do when you get glutened is important. Scroll back and find the post on that. I rely on Alka Seltzer Gold and lots of water, and hiding out from my family, lest they be caught in the mood swings and temper flare ups that accompany the diarrhea and nausea. Gluten free store products can be just as good as the name brands, and in some cases they are better, Aldi and Trader Joe’s have great gluten free products that are much less expensive, as does Wegmans, where I shop every week. Their products are marked with a G to denote if something is gluten free. They also mark lactose free products. I am lucky to live near Baltimore, and have family members near Philly and D.C. All of these cities have gluten free restaurants, bakeries and cafes. In a pinch, many vegan and vegetarian places have gluten free options, or are gluten free. Amazon is a great last resort, but they tend to be very high on grocery and gluten free pricing. Whether I buy something from them or not, I check the reviews. They are honest and unfiltered, and I trust them. We have a Chinese restaurant near our house that has. gluten free options, and I have had good luck with them. Five Guys and Outback take it seriously too. They are the only chain restaurants I trust, although I will buy the specialty coffees at McDonalds. I used to go to Sonics for coffee, when my husband and son went there for dinner or a late lunch, but the last few times we went, we all had massive diarrhea. How can coffee give someone diarrhea?! I suspect the problem there is cleanliness or lack thereof, but the point is the same. If some place makes you sick, for whatever reason don’t go back again. Let the manager know why you aren’t coming back, and the ball is in their court.

  2. Lee says:

    First, be thankful that you finally know what is causing your symptoms and now you can be in control and eliminate them. Don’t think about all the things you can’t have, explore the new options available to you. At first I resisted buying the expensive flours, etc. as a matter of principle. But, that made me feel deprived. If you can manage it, buy them and continue to make your treats, etc. but gluten free. You will be surprised at how good they can taste. Don’t fall prey to the pre-packaged gluten free food items on grocer’s shelves that are outrageously expensive and contain way too many ingredients (that are unrecognizable and unnecessary). Who needs bread with a 6 month shelf like? Make it yourself. Not only will it taste better, it will be better for you. Call restaurants before you go and quiz them on their real ability to be gluten free. When you find one that works for you, go back. There is an expression about life that goes something like this “You can’t change the course of the wind, but you can adjust the sails.” Most of all – DON’T be influenced by well meaning folks who say things like “have a bite, it won’t hurt you.” You CANNOT have a bite of gluten containing food, it will hurt you.
    I don’t know if it is ok for me to recommend baking books here, but I have found that Annalise Roberts books are perfect for me. Also, the King Arthur Flour website has lots of gluten free recipes (the flourless chocolate cake is addicting). Best of luck.

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