When one is first diagnosed with Celiac Disease, a gluten allergy, or a gluten intolerance, it is very difficult to know where to begin. Many aspects of your life will drastically change and it may seem overwhelming. Therefore, we have established not only this site, but a specific page to guide you and your family in beginning your GF life.
Where Do I Begin?
Since your diagnosis is often overwhelming and permanent, families are often scared on where to begin. Here are some excellent tips to begin your life-long journey of GF eating:
Start with the foods that you love: Are they gluten free? If they are, you are all set! If not, look for a good substitution (*check out our food and snacks page as well as our blog for good substitutions).
It is helpful to designate a specific shelf in your pantry/refrigerator/freezer/etc. for solely GF items.
To make things easier, buy separate supplies (ex. a colander) to make just GF foods so there are no mix-ups.
Start simple: try out different foods to find your basics.
Find stores near you that carry gluten free products often (we love Wegman's!).
Whenever you are eating (especially in public), be aware of what is in your food and around you.
Advice for Your Struggles:
Don't get discouraged! It is difficult adjusting to this new part of your life and that is okay! When you feel overwhelmed, consider:
Support groups or other websites like ours that will encourage and inform you to live your life fully.
Research using books. Here are some we suggest:
100 Questions and Answers About Celiac Disease and Sprue: A Lahey Clinic Guide by David L. Burns, MD
The First Year Celiac Disease and Living Gluten-Free by Jules E. Dowler Shepard
Living Gluten-Free For Dummies by Danna Korn
Bagels, Buddy, and Me by Melanie Krumrey
The GF Kid: A Celiac Disease Survival Guide by Melissa London
Taking deep breaths and calming down: everything doesn't have to get done in one day!
Talking with your parents/child/etc. about your struggles and how they can help.
De-stressing by choosing events without food.
Making an all GF day/meal to limit the stress and risk of cross-contamination.
Discussing your struggles with your pediatrician or doctor.
Don't always be worried about food and your condition: there are other things to do in life!
When you are first diagnosed, it is key to keep those closest to you informed on your new life. Whether it is cousins, friends, teachers, or babysitters, you must let people know in order to keep you safe. While you don't always have to share all information, you must ensure that the people who take care of you are fully aware. This includes what Celiac Disease is, how sensitive you are, risks of cross-contamination, simple GF foods, and your limitations and boundaries. For instance, our mom would always send a letter to Sara's teachers in order to make sure that they know about her condition. This was helpful in easing stress for Sara, our mom, and the teachers. So, make sure you have a clear and serious conversation with the people in your life after you are first diagnosed.
Sally is very excited to be in your class this year! I just wanted to write to pass along a little information to you. I apologize that I didn’t get this email to you sooner…the end of summer just got away from me!!!
In case you don’t know, Sally has Celiac Disease. It is very mainstream these days, so you are probably very aware of what this means, but just in case, I thought I would just bring you up to speed. Celiac Disease is an autoimmune disease (not an allergy) where the individual cannot process any forms of wheat or gluten. As a result, Sally follows a strict gluten free diet. Unlike allergies, we don’t have to worry about airborne exposure etc…..it is very specific to what she ingests. In addition, any reaction to gluten would most likely be gastrointestinal, fatigue etc. (with more serious complications if she is exposed long term to gluten). Sally was diagnosed almost six years ago, so she really doesn’t know anything different and does an awesome job following the GF diet. She will never let food cross her mouth unless she is sure it is GF or she checks with me. (We have a motto…”If in doubt, go without!” I am also working with her to start reading labels more, and overall advocating for herself)!
On a day to day basis, this won’t have any effect on her or the class, as she will obviously have her own snacks, lunch etc. However, I know you generally celebrate the kids birthdays, and that there may be other class parties, festivities, etc. that will involve food. I am not asking anyone to make accommodations for her. I am happy to provide her with whatever is necessary that will hopefully “match” the food that is being served. I am just asking that if you could communicate with me when there will be upcoming activities involving food, so that she can be prepared and try to fit in as much as possible. In past years, I have provided the teacher with a bag of GF goodies to keep on hand, in case an unexpected birthday or other treat comes up (small packs of m & m’s, small Hershey bars etc). I am hoping that this will be okay with you as well? If I know a day or so in advance that someone is celebrating a birthday, I can throw a couple of cookies or a cupcake or something in the oven the night before for her so she has something fresh. Again...I don’t want parents to think that they have to provide GF for her or the whole class. I want to make this easy on you! I am available every day, so if something comes up last minute, please don’t hesitate to call me to bring something, as I would rather do that than have her feeling left out.
Let me know if you have any questions or suggestions to make this easy on you.
Thank you very much for your time. We are looking forward to a great year!!
Here's an example of a letter to a teacher informing them about Celiac Disease. This should give you a good idea on what information to share to those taking care of GF kids.