May is Celiac Awareness Month, so I’m once again partnering with UnityPoint Health to give you a peek into what life is like for someone living with Celiac Disease…aka having to go gluten-free when you don’t really want to.
I was diagnosed with Celiac Disease, an autoimmune condition in which the ingestion of gluten leads to damage in the small intestines, shortly after Lincoln was born in 2013. It was a dark time of my life, to say the least, and you can read about my diagnosis story here. Celiac Disease impacts the body’s ability to absorb nutrients and can cause everything from unexplained infertility, to osteoporosis, and even cancer if left unmanaged.
So, what the heck is gluten anyway? Gluten is a protein found in cereal grains like wheat, barley and rye. The only way to manage Celiac Disease is to not eat foods containing gluten, which is tough because, like a newly crawling baby, it seems to be in just about everything. From the obvious like bread, cake and beer, to the not so obvious like play dough, hair spray and even prescription drugs. (For a full list of all the names gluten can go by, check out my ebook.) Eating a source of gluten as small as a bread crumb can make someone with Celiac Disease ill. For me, getting “glutened” can mean up to two weeks of stabbing stomach pains, extreme fatigue, headaches, and brain fog.
As I sit down to write this post, my heart starts racing and I’m getting a little sweaty. I feel like this is a common reaction for people with Celiac Disease when they begin to tell their story. Why? Because so many people see the words “gluten-free” and immediately roll their eyes. Every time I tell someone I need to eat gluten-free, I’m fully prepared for them to pull out a mega phone and yell “YOU’RE ANNOYING.”
I get it. I really do. But I don’t have a choice. Thanks to genetics plus a bad delivery with Lincoln, which triggered the disease that lay dormant inside of me for 30 years, I got an autoimmune condition that comes with restrictions I wouldn’t wish on my worst enemy.
Before I go on, I want to acknowledge that things could be so much worse. I have a disease that is managed through diet (which to be fair, sounds way easier than it is.) I don’t have cancer. I don’t have heart disease. I don’t have diabetes. These particular diseases can be caused by Celiac Disease, but my condition is not currently life threatening, and I am so grateful for that.
I also don’t write this post for pity. At ALL. We’ve all got our things! Rather, my intent is to inform people about Celiac Disease, and give those who have written off the gluten-free community as annoying or just following the latest fad diet, a different perspective.
So, what’s life like living with Celiac Disease? Anxiety-inducing. Having to cook and eat gluten-free is actually the least of my worries (at home, anyway – restaurants are a completely different story,) and I feel like I’ve shown you over the past 3+ years it’s manageable. For me, the most difficult part of having Celiac Disease is the psychological and social impacts it’s had on my life.
- Feeling like a constant burden to my family and friends.
- Skipping social events because it’s awkward being the only one not eating.
- Paying $7 for a loaf of bread.
- Feeling miserable for 1-2+ weeks every time I accidentally ingest gluten.
- Having to feverishly research every restaurant I eat at then feel anxious for 24 hours after my meal.
- Putting my health in the hands of everyone from the waiter, to the chef, to the person who purchases ingredients, to the dishwasher when I choose to eat at a restaurant.
- Poring over every label of every packaged food I buy.
- Always being the odd man out.
- Knowing I’ll never be able to fully experience the local food and culture of all the destinations on my bucket list.
- Constantly apologizing for and feeling self-conscious about my disease.
- Worrying that I’ve passed this beast onto my children.
- Hurting people’s feelings and creating an uncomfortable situation by having to turn down foods they’ve cooked because I don’t know if it’s safe.
To sum it up…living with Celiac Disease, mmm, sucks.
That said, I’m a firm believer that everything in life happens for a reason. Maybe my why is because I have this amazing platform to reach and support people with Celiac Disease.
Maybe it’s so I can reassure someone who has received a Celiac Disease diagnosis that, although it feels like their world is crashing down, everything is going to be ok.
Maybe it’s so I can share safe and delicious gluten-free products that can help someone with Celiac Disease feel normal for a minute.
Maybe it’s so I can inspire someone whose had unresolved health issues for years ask their doctor to be tested for Celiac Disease. (This has happened multiple times, and surprise – Celiac diagnosis!)
Maybe it’s so I had the knowledge to help one of my best friends who was just diagnosed with Diffuse Scleroderma navigate the confusing world of autoimmune diseases.
Maybe it’s so I could write an ebook to help people go gluten-free when they’re struggling to understand everything that entails.
Maybe it’s so I can change the opinion of someone who thinks everyone who eats gluten-free has a choice.
I truly feel like my life’s purpose in regard to my work outside the home has something to do with serving people with Celiac Disease. I don’t know what that looks like quite yet, but nearly four years ago life gave me lemons and I’ll be damned if I don’t make lemonade. That is to say – stay tuned. :)
Now, I wanted to share a doctor’s take on Celiac Disease with you so I reached out to Dr. Thomas Martin of the Iowa Digestive Diseases Center, which works with UnityPoint Health, with a few questions I routinely get asked. Thought you might find this information interesting!
Why do you think more people are getting diagnosed with Celiac Disease then ever before?
I think there’s an increased awareness of Celiac Disease, overall. People are recognizing it’s a genetic disease and there’s more discussion among family members when someone is diagnosed. I see people becoming more proactive in educating family members, first degree relatives in particular, to get checked out. I also think primary care providers are much better at screening patients with a family history or have symptoms that suggest CD. With this being an autoimmune disease, rheumatologists, endocrinologists (diabetes and thyroid diseases) and dermatologists will refer me patients they have screened through antibody testing.
What are the most common symptoms people complain about before getting tested/diagnosed with Celiac Disease?
The spectrum of symptoms varies in regard to initial complaint. Most commonly the symptoms are bloating, diarrhea and/or unintentional weight loss. In some patients Dermatitis Herpetiformis, a rash specific to Celiac Disease, is their first presentation. There is an entity called irritable bowel syndrome, or IBS, that is very common in the gastroenterology field. The symptoms of IBS can mimic that of CD and vice versa. IBS is a complicated diagnosis but some patients with bloating, joint pain, diarrhea and fatigue may in fact have CD. Therefore, we screen our IBS patients through antibody testing.
How can someone determine if they have non-Celiac gluten sensitivity?
Non-Celiac gluten sensitivity is an evolving topic. Up to 2-3 years ago I was admittedly a purist regarding going gluten-free in that I did not recommend going gluten-free, to a patient unless we had the laboratory or endoscopic findings to support CD. Some of that is training in fellowship and some is that a gluten-free diet is life altering in that it changes how people buy food for themselves/family, eat at restaurants, eat on vacation, etc. I think if the lab + endoscopy show no evidence of CD but they respond to a gluten-free diet symptom-wise, that would be suggestive of gluten sensitivity. One note is if a patient has been off gluten for more than a month or so, the actual tissue damage we see with Celiac Disease may not be seen on a biopsy. The Celiac blood tests can take longer to normalize. My point is that if a patient has already been on a gluten-free diet, the biopsy and blood work can be tough to interpret. Patients who are already [eating] gluten-free and feeling better would need to go back on gluten to get an accurate measure. That is a tough one when a patient comes in feeling well on a gluten-free diet and wants to know if they truly have Celiac Disease.
What could happen if Celiac Disease goes undiagnosed/unmanaged?
Celiac Disease affects the small bowel tissue. The small bowel is the body’s workhorse for absorption of nutrients from our food. Both iron and calcium are largely absorbed at the duodenum (upper most small intestine.) Celiac Disease most commonly involves the duodenum, though it can occur anywhere along the small intestine. Therefore, malabsorption (the villi of the small bowel are flattened/destroyed and can’t absorb the iron from food) of iron results in iron deficiency anemia. Malabsorption of calcium can result in osteoporosis/osteopenia (thinning of the bones). So, Celiac Disease can result in anemia and increase risk of bone fracture if left untreated. There are many different vitamin deficiencies that can also occur as the small bowel is responsible for a large part of vitamin absorption. Calcium and iron are unique due to their specific site of absorption at the duodenum, where Celiac Disease is most commonly found. A very rare type of lymphoma can occur with Celiac Disease that has been left untreated over many years.
What are the tests/procedures done to diagnose Celiac Disease?
The most common tests to diagnose someone with Celiac Disease are antibody/blood tests and endoscopy with small bowel biopsy. Standard endoscopy reaches the duodenum where Celiac is most commonly found. The blood tests range from 80-97% accurate.
Thank you, Dr. Martin!
Now, confession: I had my Mom read this post before hitting “publish” to make sure it wasn’t too depressing. I want to be completely honest, but I also don’t want you to think my life is miserable. Because it’s not (and I have a robust wrinkle cream collection for my permanent smile lines to prove it!) Yes, I have an incurable autoimmune disease that has a huge impact on my everyday life, but I’m also an incredibly happy mom and wife. I have wonderful friends and family members who would turn into pretzels if they bent over any further backwards to accommodate my diet. I have a job that allows me to help others in the same situation.
I can run. I can breathe. I can dream. I can do.
I am LIVING!
I can also eat Reese’s Peanut Butter Cups. Yep, they’re gluten-free! (Well, the normal sized ones, not the holiday shapes. #celiacproblems)
My point is, I can choose to be miserable about my disease or I can choose to find the good, the happy and the positive in my everyday life. I have so much to be thankful for, and am hopeful for a cure in the future. Until then, it’s full steam ahead!
Since I know some might be curious, the initial test to screen for Celiac Disease is a simple one and can usually be done at your general practitioner’s office (mine was.) As Dr. Martin mentioned, you must be eating foods containing gluten for the test results to be accurate, so don’t toss all your gluten-containing goodies if you want to be tested. Your doctor will be able to recommend you to a gastroenterologist for further testing if the results come back indicating Celiac Disease.
If you live in Iowa, Illinois or Wisconsin, UnityPoint Health provider services are available. Visit www.unitypoint.org, select the location you live in, click the “Find a Doctor” tab, then select “Gastroenterology and Hepatology” to find a provider near you.
These are so helpful, I just got diagnosed with CD in March. I am of the silent celiac kind, so no digestion triggers if I get “glutened” but the gluten protein attacks my thyroid reducing its function. So I haven’t decided if it sucks more because I never really know! I also live in a Colorado the land of gluten free until you ask about cross contamination and boom, only option is a salad! It is amazing how many things are cross contaminated! I am lucky that most restaurants here know, but also it is depressing because I can never eat what I want! And never in my whole life have I wanted more cookies, cupcakes, pizza, etc than I did after finding out I had CD! After extensive gut testing, I have a lot of repair to do to fix my bodies over all function! I love your outlook and thanks for sharing! I apologize by the hour to my family and friends because I can’t eat anything!
Hi Meghann, I was diagnosed in April and also am of the silent Celiac variety. I do not experience any immediate pain or discomfort if I happen to eat something with gluten, and I wish I did so I would know! Also, I have found myself lusting over bread and donuts. :)
I think being asymptomatic would be super scary – do you get your numbers checked often?
Casey the College Celiac 05.16.2017
High five for spreading awareness girl! Celiac ain’t easy and it’s important to let people know that the gluten free “Diet” is so much more than a diet. It’s our medicine and what keeps us alive. Not enough people realize how awkward celiac can make social situations or even dating (AKA telling your date that he can’t kiss you until he brushes his teeth). Stay awesome and keep kicking celiac’s booty! ;)
Yes to all of this! Celiac Disease made me realize that food is fun, yes, but it’s also something that can make us sick or well. It truly is our medicine!
Andrea Sutherland 05.16.2017
My husband was diagnosed with a gluten intolerance about 6 years ago. He had several diagnostic tests of which his Doctor was not absolutely positive that he had the affliction but we went gluten free and he started to feel better. In the past few months we have learned an interesting fact about how wheat and other grains are harvested in the US. Three days prior to harvest many farmers spray their crops with a product such as Round Up which kills the stock and allows them to get more of the yield off the stalk. He also learned that this disease/afflication is not a problem in Europe as they don’t use a pesticide before harvest. So my husband tried some pasta made in Italy ( which we found at our local grocery store) and has not had any problems with it.
I am glad your husband has been able to enjoy pasta again, but I’d like to clarify a few things about wheat production (I was raised on a grain farm in western Canada, am involved in our family farm, have a BSc and MSc in Agriculture, and work in agriculture). Farmers in Canada, US, and even in Europe use glyphosate (Round-Up) before harvest to control weeds in the fall (especially perennial), and as a way of dessicating or drying out the stalks and leaves to make it easier to harvest the grain. This is particularly true in more northern climates where the crop doesn’t always have a chance to completely dry down before winter hits. This application is done when the grain is already less than 30% moisture, which means the crop is physiologically mature and the grain is already filled, so the glyphosate will not be translocated from the plant into the grain. There is also a “pre-harvest interval” which defines how many days you have to wait after spraying a crop before you can harvest it — generally 7 to 14 days for glyphosate. Harvested grain is also tested for pesticide residues when it is delivered to the terminal and will be refused if it exceeds the maximum residue limits. This is all regulated in every country the pesticide is sold.
And one final note, Italy has to import about 30-40% of the durum wheat used to make pasta, predominantly from Canada and Russia :).
Well written, Kristin!
Thank you, Julie!
Kristen, I love this! I went gluten free exactly one year before you after feeling awful through my freshman year of college. I have to admit I was a little bit excited when you went gluten free too (sorry!), because your blog was one of the few non-gluten free food blogs that I still followed. Anyway, I relate to this oh so well, especially the parts about feeling bad at social gatherings. It doesn’t bother me a bit when I’m at home, but it’s tough when you’re with people. Anyway I’m glad you are making lemonade out of lemons. Love your blog.
One thing I’ve always been grateful for is not being diagnosed in school, especially college where literally 90% of my diet was gluten-based! Major props to you for managing this beast while in school! ??
Thank you, Kristen, for sharing this and for the way your blog has changed since your diagnosis but is still one of my favorite places to find a good recipe. Your openness and determination are encouraging and I enjoy your posts so much.
Thank you so much, KC – so nice of you to say!
Great post! I don’t have CD, but have been following your blog for a few years and enjoy your recipes. Thanks for being open, honest, and teaching us about CD and your experiences. You are an inspiration!
Thanks for reading, and your interest in the topic, Melissa!
I was diagnosed with Celiac Disease in 2009 and feel exactly the same as you. I am a super sensitive Celiac and respond to common/shared utensils and other not really gluten free foods (like Cheerios, etc). It’s extremely difficult to eat out as I always seem to get poisoned by restaurant’s supposedly gluten free food. People want to help and do not have malicious intent, but do not have a firm understanding of all the various places gluten is hidden. I don’t eat out much and really miss all the local hole-in-the-wall and super authentic experiences….but I’ve become an amazing cook because of this haha. I wasn’t going to let some food restrictions stop me from great flavors. For those of you who are recently diagnosed – things get easier and in time you will forget about the foods that you are missing. That doesn’t mean you cannot eat and enjoy other experiences. Personally, when I stopped trying to recreate old favorites and embraced thinking outside the box with new flavors (hard to recreate gf/dairy free Chicago deep dish haha), I suddenly began enjoying unique and amazing foods that others always request. Keep your heads-up…things could always be worse.
Sorry – forgot to add a few things – Kristin, I’ve been following you for years after going to college in Iowa. I am pretty much addicted to all your Asian recipes, thanks! go Cyclones haha!
I am the same way, David – super sensitive to even a small amount of cross contamination and don’t eat Cheerios, etc. We have 4 restaurants in town that we are regulars at. Stinks that we can’t eat out just anywhere, but it is what it is, I guess!
My daughter is allergic to dairy and I relate to so much of this post. My husband and I never realized how many things contain dairy until we had to avoid it! It sucks but I always tell myself this really is a great time to have an allergy – it’s so much more common than when I was growing up and googling ingredients saves our lives on a near daily basis. Love that you’re looking on the bright side too! :)
Food restrictions are so hard – but like you said, it’s awesome that we have so much information at our fingertips!
Bridget Larson 05.16.2017
Thank you so so much for having a positive take on this horrible disease. I was just diagnosed last week and have been throwing myself a bit of a pity party ever since. I’m trying to move on with my life, but as a mom of 3 active children, I am struggling with so many simple “life” questions…like simple things to cook that my whole family will like, what shampoo is ok, is Diet Coke GF? (Super important, ha)…. I wanted you to know I appreciate reading your blog and love your recipes. Thank you for bringing education and awareness about being GF.
PS-Love that you’re from iowa…me too!!! (:
I’m so sorry to hear about your diagnosis, Bridget, and that you’re struggling right now. I so relate and feel your pain! It’s hard because the learning curve is steep but needs to happen immediately – it almost feels like you want to crawl into a corner and just not pay attention to any of it. It gets easier and I am always here to help if you need it!
Jennifer S. 05.16.2017
Interesting tid-bit I got from a schar Instagram post in March is that people of Irish decent are the more likely to suffer from celiac’s disease or gluten intolerance. I am one of those people and I already know that I’ve passed this on to my son. Thank you for writing this.
Very interesting – I’d never heard that!
I was diagnosed with celiac disease 8 years ago and was doing well until the past year when I started getting rashes & just not feeling my best. So I went for food allergy testing, and I couldn’t believe it when the results came in & I reacted highly to rice, potatoes, soy, peanuts and ginger all of things. Like, seriously, I eat a lot of rice & potatoes on a gluten free diet. I did read that after 6 months or so there is a possibility of adding some of these back in my diet if my body has healed from imflammation, but I don’t really know. So after googling “rice, potato, gluten, soy free diet”, I came across the Paleo diet, they don’t recommend eating any grains, so I’m going to try it to the best of my abilities, but will probably sneak in some corn pasta and the occasional gluten free bread.
I hear so many great things about Paleo – I hope it helps. I too developed sensitivities to white potatoes, apples, some grains and found that I could tolerate them better after eating super clean for 8-10 weeks, so there is hope!
Excellent information. Thank you for sharing and continuing to inspire the celiac community.
Thank you Amy – so nice of you to say. :)
I was reading your post and I was relating with all the points you mencioned. I don’t have CD, but I have IBS and lactose intolerance. It’s not as bad as CD I would say, but I still had to remove from my diet a loooot of stuff I loved to eat, including some healthy food like some veggies and fruits. And yes, socially it can be really sad/boring/awkward. So… I can relate.
But hey, like you said, it could be worse! :)
I think anyone with any kind of restriction can relate – you are not alone!
I was just diagnosed with Celiac Disease last month, and a friend told me about your blog and website. Thank you so much for this article! I am near tears, not because your article was depressing (ha!), but because you said everything that I have been thinking and feeling. It is so frustrating and scary to eat out now, and I am from a family that goes out a lot, so my world feels a little upside down. My boyfriend and I also have a food and travel bucket list, and it makes me mad knowing that I can’t go to all of those restaurants now or fully enjoy the places we go. I’m trying to channel my frustrations and research into my own blog as a diary for myself and hopefully to help others as well. You have been an inspiration for that, so thank you. And again, thank you for saying what I’ve been feeling…I will definitely be sharing this article with my friends and family!
I’m so sorry to hear about your diagnosis, Tiffany – and I can relate to everything you’re going through. I was in “mourning” of all the foods I couldn’t eat for a really long time. Then I realized there are so many great GF replacement foods. Just wish it was easier to eat at restaurants, but like I said – there are worse things! I hope things get better for you real soon!
Terri G 05.16.2017
This is great info–thanks for sharing! I feel some of your pain, as I, too, have an incurable autoimmune disease. It’s called Sjogren’s Syndrome. My immune system attacks the glands that make moisture for the body, such as tears and saliva. The damage keeps the glands from working the way they should and makes my eyes, mouth, and skin dry. I’m on two meds and use a plethora of OTC products that help keep the symptoms manageable, and I have wonderful medical professionals who understand my disease and take good care of me. Most of all, I have a fantastic husband who cooks meals that I am able to easily consume and digest. My rheumy doc tests me every year for Celiac Disease, as it’s common for those with autoimmune diseases to have more than one, and there is a strong connection between Celiac and Sjogren’s. So far, so good on Celiac, but I wouldn’t be surprised if I someday develop it.
AID are so, so scary – and to think there are dozens and dozens of them that most people have never heard about – including Sjogren’s! My word – I can’t even imagine! As I said in the comment above, I also don’t know what I’d do without a supportive spouse. It is so crucial to getting through the day to day!
Thank you so much for sharing. My husband also deals with an incurable autoimmune disease (not Celiac) that has a huge impact on our life. I was nodding my head along with your points because it can be SO difficult and we have gone through our fair share of bad (um, miserable and scary) days. BUT it could be so much worse. We are learning to manage it and choose to live our lives to the fullest. Thank you for sharing! You are not alone :)
I don’t know what I’d do without a supportive spouse, which is another huge source of guilt for me. Not only did I have to go gluten-free, but Ben did too (at home, anyway.) Cannot say enough about how much a supportive spouse/partner means!
Thank you so much for sharing this post and all of the recipes and helpful tips in your blog. My sister was diagnosed with Celiac several years ago and you have provided a wealth of information to help me accommodate her diet when we’re together. Thanks again!
So glad, Abby!! I’m sure she appreciates any effort you make to help her out! :)
Thank you for sharing your story! I have a cousin who has CD and while I have always sympathized at how hard eating a gluten-free diet was, I was not aware of just how many products in our everyday lives contain gluten (hairspray, really?!). This post was definitely an eye-opener for me and I will definitely make more of an effort to bring gluten-free dishes for that side of the family from now on.
She will definitely appreciate it, Brittany – so kind of you to make the effort for her!
similar to you, I had to go gluten free in 2013 after a traumatic injury that triggered it. I am also a vegetarian so I feel like I am the most annoying person ever to go out with and always worry that people think I’m just being difficult. I miss all of my favorite foods and more carefree lifestyle but am grateful that there are more options now. Your blog and ebook have been a great resource for me, as we went through this on the same timeline. Thank you for always being so helpful!
I’m so glad the ebook was helpful, Bets! Always here to chat if you need to, and yes to feeling like the most difficult person in the world to dine out with. Add Lincoln’s dairy allergy and I’m constantly afraid the waiter is going to ask us to leave after I explain all our diet restrictions. ?