Yep, I have Celiac Disease.
I was diagnosed only a few months ago, even though I had a feeling for years that this could be the answer to all of my off the wall health problems. I have always known that my odd problems all stemmed from somewhere, but it wasn’t till things got serious and painful that my doctor took notice.
Over the years my silent symptoms progressed…B12 deficiency, iron deficiency…then vitamin K & D, then ultimately protein and calcium deficiency and soon the symptoms were not so silent. My new family doctor was pretty positive that I had Crohns, since it runs in my family but the pathology was pretty straight forward…it was Celiac Disease.
The prospect of Celiac disease was daunting but it wasn’t until my doctor explained what it all meant, that it hit home and I began to understand the scope of the situation. I was overwhelmed by the magnitude of the diagnosis…and completely underwhelmed at the amount of information that came with it! I literally left the GI’s office that day with nothing. No brochure, no informational pamphlet, no lists, and no advice except get your children tested and don’t eat gluten…ever. Frankly, this was a life changing diagnosis and a box of pasta comes with more instruction and information than I got.
I was relieved to know what the underlying issue was after all of these years and problems. I know that knowing is a luxury that many don’t have and they are left endlessly wondering, doubting and searching for a diagnosis…this is a miserable place to be. It was also somehow comforting to know that I was in control. No medications, no therapy, no surgery, just a change in diet…sure, no problem…or so I thought.
I remember walking out of the doctor’s office to my truck and thinking… “So, I have Celiac Disease. Now what?”
I had no idea where to even begin. I called the Cowboy on the way home and shared my update. “Good news, I don’t have Crohns but I do have Celiac disease”. He said “Umm, ok…what does that mean?” After my short explanation, he said “well, then we will all do it together”.
While I still didn’t quite understand the extent of the instruction “no gluten…ever”, at that moment I knew I had an ally. I also realized that many going through this same scenario do not. So I offer myself as your ally in your struggle, celebration, contemplation, and wrestling or wherever you are in your journey.
In trying to figure out how to live with a Celiac Disease diagnosis…the right way…I have also learned a few things and feel like I have figured a some things out, so if you are left asking yourself “now what” after your Celiac diagnosis, I have a little advice and a few tips that may help.
10 Tips on How to Stay Positive and Move Forward After Your Diagnosis
Find an ally.
You need an ally in this journey because it can be a bumpy road and you will need help! You need someone to have your back in this craziness! Friend, husband, wife, brother, sister, child, teacher, neighbor…support is critical to your success and will ultimately determine your outlook on your situation. If people around you are making this difficult, you will view this as an impossible and miserable task, and you may even be unknowingly sabotaged with foods you thought were ok. My family is pretty new at this and for me, knowing the Cowboy is looking out for me means the world. It also means that I have help reading labels, asking questions at restaurants and making sure things are cooked properly at home. The bottom line is you have to live this way…forever. It shouldn’t be a struggle. Accidents will happen but blatant carelessness and disregard for your health is not ok. IT IS NOT OK.
Educate yourself and your family.
Not only is this a change for you but it is a change for your entire family, especially the family members that live with you. My girls are seven and eleven. They were ready to help mom feel better because they had seen me struggle over the past few months. Even though they wanted to help, of course they had no idea about things like cross contamination or reading labels. I mean, I can barely get my seven year old to remember to brush her teeth, much less remember to not double dip the knife from her peanut butter and jelly sandwich back into the jar. To help with the effort, we had to make some changes in the products we purchased…we went to squeeze bottles for mayo, jelly, mustard, etc. Before I cleaned out the pantry, I explained what I was going to do and why and asked the girls to help me. Together we read labels, cleaned out the pantry, and talked about food and health (all while listening to 80’s Pop Hits). We made sure to put any gluten filled snacks the girls still wanted to enjoy into a basket on the bottom shelf of the pantry. These are things that go on field trips and in lunches to school, individually wrapped granola bars, etc. Including them in the process was empowering for them and they were learning at tone in the process. They were doing their part to help…and for a seven and eleven-year-old that’s important.
Perform the “great gluten purge”.
Yes, we still have gluten containing products in the house…but not many. I didn’t have to get rid of much but only because I am pretty much a low carb eater and I cook…from scratch…a lot! We have also made an effort over the past few years to eat better, less processed food, more whole fruits and veggies…and these are all gluten free! I did have some stuff hanging around that I had bought for the girls…you know the odd box of macaroni and cheese, cereal, oatmeal, etc. So, we packed a box to go to the local food pantry with all of our purged food. Now, I do love baking and had an assortment of flours, bread, cake, pastry, whole wheat…I cringed as they all went in the trash. Thankfully, it wasn’t much…I’m pretty frugal and really hate wasting ingredients but in this case, you have to remind yourself it’s not a waste, it’s a step toward healing. If you don’t want to through away, give it to a neighbor or family member. We went through every can, bottle, bag, box of anything in that pantry and fridge. If it is not marked “gluten free” on the outside of the container, simply google it and if you can’t find a clear answer…it goes into the donate box or in the trash! You want to be able to enjoy cooking and be comfortable and feel safe in your kitchen. Spend a few hours and perform “great gluten purge” and enlist help!
I probably should mention here that we also purged our cookware…it happened to be time for a new set anyway to so we donated the old stuff and purchased a new set. I also do not use the toaster in our house, which I am totally ok with because it is one appliance I think is totally unnecessary and useless…the Cowboy and I differ here…so I will just stop here!
Don’t forget the spice cabinet!
You know, I am really surprised that I didn’t have more stuff in the fridge that contained gluten. I am a lover of condiments so I have all kinds of add bottles in there! But I was shocked to find that some of my favorite spice blends and seasonings contained wheat as a filler…bummer! I performed the “gluten purge” on my pantry and fridge within days of my diagnosis but I neglected the spice cabinet, so every time I reached in for a spice or seasoning I was trying to read the label…it was a pain! I finally cleaned that cabinet out as well…beef & chicken bouillon, carne guisada seasoning, taco seasoning, chili blends all had to go. Good riddance!
Restock your pantry with gluten free essentials.
But don’t go crazy! Your essentials will be different than mine…cereal for the girls, oatmeal, alternative flours for baking, and a new jar of peanut butter were on my list! I took this opportunity to make a health shift so I left some of those not-so-essential things off my list. I did grab gluten free pasta so if the girls wanted mac and cheese, we weren’t contaminating anything but the prepackaged cookies, crackers and other snacks that were ignored in the pantry were left off the list! Don’t restock with gluten free processed junk food…it is still junk food and some of it is worse than the real thing. Stick with real food!
Find a few new recipes and work them into your weekly rotation.
We all have those standby recipes that we rotate through our busy work week…spaghetti, tacos, your favorite casseroles with canned soup…you know the ones! Many of these recipes are now off limits or at least need to be tweaked to fit your needs. Gluten free pasta, spaghetti squash, corn tortillas, there are even great alternatives to canned soup to revamp your old standbys into new, healthy dishes…you may even like them better! Restaurants can many times not be trusted 100% but you know exactly what goes into your food, how and where it is prepared. Enlist some help and find joy in cooking great food at home that is good for you! Remember fruits, veggies, meat, dairy, nuts and more are all naturally gluten free.
I work full time, have 2 kids and I cook 98.5% of our meals at home…from scratch. It is healthier, cleaner, cheaper and it’s family time…my kids even love to cook! There are incredible recipe resources at your fingertips…you can always start here!
Advocate for yourself.
Celiac Disease is not your fault, a choice or a fad. You are not trying to be difficult, you are trying avoid illness, to heal yourself and improve your health…don’t feel like you are being a burden. If you had a seafood allergy, you would for sure question your food and its preparation. Fortunately, many restaurants post their nutrition and allergen information online and some even have it right on the menu. Ask for gluten free options and make changes to your meal that make sense, most places are happy to accommodate you.
Now, I will say that even though the restaurant has gluten free options doesn’t mean they are safe for those with Celiac Disease…cross contamination is always a possibility. Use your best judgement, most places will note the cross-contamination risks. Most food establishments will also do their best to make sure that doesn’t happen when they are able…when in doubt don’t eat it.
When I know we are going out to eat, I get online and do a little research. I look at the allergen menu, look through the gluten free options, read the disclaimers regarding cross contamination, and make my choice…before we even arrive. This way I don’t have to ask the server a million questions that she probably doesn’t know the answers to and I don’t have to worry about the manager not being there, etc. I do let them know of my issue when I order and I have never had a problem. If someone leaves the restaurant choice up to you, choose a place that you know has gluten free options other than salad…I have found some great new favorites eateries and I love that they think nothing of it when I request something gluten free off the menu. It puts me at ease.
That being said, some of our favorite restaurants are local joints that don’t have a website, much less an allergen menu. I have tested the waters a few times and I must say I regretted it every time. I have worked in restaurant kitchens and cross contamination is a tough thing to control especially in a Mexican restaurant or burger joint. If I have to go eat at these places I will but I do it with extreme caution. If you have a local restaurant that you love, try talking to them, inform them of your issue and see if they can offer you up some options…but be cautious.
Don’t avoid social gatherings.
BBQ’s and potlucks, whether it is a family reunion, church gathering or holiday cookout, are meaningful, fulfilling events where we share and catch up with family and friends, don’t miss out! If you like to cook, offer to bring a dish to the event that you can eat…others will never know that its gluten free! If they do, what a great opportunity to educate them! If you don’t cook and you are worried about the food available at the event, eat something before you go so you aren’t starving. Don’t know what they are serving, call and ask! I do this all the time…don’t be obvious, just a quick call “Hey Sue, I’m excited about coming over on Saturday, what are you cooking? … I have a great recipe for a Marinated Artichoke Salad that would go great with that…do you mind if I bring it along?”. Easy Peasy!
You will not do everything right. You will make mistakes. Take control. Take a breath and know that recovery and healing is possible and within reach. Stay strong. Educate yourself and those close to you. Advocate for yourself, your health and family.
Did I miss something? Have questions? Need to vent? Feel free…