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.
It’s hard…
- 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.
Hi there – I just wanted to thank you for writing this. It was a great read, as my 5 year old was newly diagnosed with Celiac disease a few months ago. Its been a huge adjustment for our family and we are now in process of getting my 2 year old tested as well as ourselves. Its no fun trying to explain my son the things he used to have, he can no longer have as well as taking him to birthday parties and setting a separate plate for ‘pizza’ and ‘cake’ BUT he’s a champ and has really surprised my husband and I on how mature he is about this disease. Either way, i just wanted to tell you I’ve been following your blog before you had Lincoln and enjoy all your recipes. Thanks for sharing your story, i’m sure its touched a lot of others suffering celiac or know someone who does.
Mariam
I’m so sorry to hear about your son, Mariam. My 3 year old has a dairy allergy so I relate to how tough it can be for little kids feeling left out or “different”. Like you said though, my son has really surprised me and I’m glad to hear your little guy is taking it well too. They are more resilient then I think we give them credit for!!
Thank you1 Thank you! I am non celiac gluten sensitive. It took me years, 2 colonoscopies and a biopsy to determine I didn’t have celiac but what the heck was wrong with me? About a year ago, I decided to go gluten free to see if it helped. No gluten made such a huge difference but what do I eat? Grilled chicken and baked potatoes got old real fast. Thankfully, I have always followed your blog and knew a great source of gf recipes. I’ve made many, many of your delicious recipes, even my non-gf hubby likes them. Your GF zucchini bread? Yes!
I have been gluten free for about 2 years to treat a hormonal disorder and IBS. I have heard that candies that are normally gluten free, like Reese’s as you mentioned, are not gluten free in their holiday shapes. Any idea why that is? Is it something in the shaping process? I’ve always wondered. Great post. It’s nice to have a food blog dedicated to gluten free.
It’s because they have to outsource production of holiday shapes to facilities that they can’t guarantee have safe lines. So sad – I used to look forward to eating the Reese’s eggs in particular all year long!
Although I don’t have celiac disease, I was diagnosed with diabetes at the age of 36 (I’m 38 now). Despite having no family history and not being the typical body shape and age for Type II diabetes, I’m diabetic. It’s such a hard thing to totally have to change your diet (I love pasta and fruit) and realize just how much carbohydrates a serving of your favorite food contains (and what the serving size is). I totally understand about feeling like a burden to family and friends, the restaurant anxiety (because I see the results in black and white on my glucose meter), the overwhelmingness of it all. There are times I wish I could just have one day a month to eat whatever I wanted without the consequences. Managing the blood sugar fluctuations, the medication, the insulin injections and the finger pokes, it’s not a fun thing to endure. However, it could always be worse. At least I got 36 years before the diagnosis.
Hi Kristin, Thanks for taking the time to so-eloquently say what needed to be said! Since being told that I needed to be gluten free by my physician last year, my family has looked at me as if I doing some self-imposed fad diet… oh how far from the truth! Your recipes are easy and delicious…. and while my family loves them, they don’t realize they are gluten free! Thank you for being my source of great support!
[…] Living With Celiac Disease – I can relate to this so much. […]
Thank you for your article. I have celiac and reading articles from other people that have celiac makes me feel not so alone. I was just diagnosed in January so i am still learning about it.
Hi Kristin,
I really enjoyed this post. I just got diagnosed four weeks ago and at first it was easy, but now I have realized this is for life and I can’t have many things I used to love.
I look forward to following your post.
Thank you,
Stacey
Could not have explained it better. My celiac layer format for years although now I realize I had it all my life. Social situations are the toughest. I have had well intentioned friends make things with gluten to “prove” to me I could eat it just to make me physically sick within minutes. I just don’t understand. Diabetics are not questioned about diet choices. L8ke you I’m happy to be living a healthy life without gf. Thank you for the article
Great article! My daughter was diagnosed with gluten intolerance after years of being told she had IBS. She is able to keep symptoms at bay through her diet. But like you said, her social life changed. She can not eat or drink what all of her friends do. She brings her own food, does not eat or waits until she gets home to eat. No one wants to be gluten free. Your article was perfect thank you.
I was diagnosed about 15 months ago and have been pretty good, except for times of going out. Having had a few work mates die of cancer last year, I am thankful that all the horrendous symptoms I had been experiencing turned out to be CD and not cancer (at the time I felt so terrible I thought I must have a terminal illness) but do gave the occasional ‘I’m sick of this disease’ moments. I just accept I will feel sick if I eat out, and am thankful for understanding family and friends – but found it hard when some workmates had a get together and I was told ‘thought we’d get pizza, but sorry, they don’t have gluten free’. I was a bit peeved that there are GF options like Thai, Indian, a pizza company that does have gf. I ended up going to another friend’s place instead and we had gf Indian and I made a gf pavlova (Aussie meringue dessert). I love ‘high tea’ and am a bit sad that I’ll only ever be able to have the gf version, and I would love a flaky croissant, but generally do ok. One issue though is that Aussie coeliacs are advised not to have oats, and so many US gf recipes contain oats – I confess to a bit of a sigh if I see a promising gf item only to find jolly oats in the ingredients lol. Keep up the good work ?
Thank you so much for writing this post!! This week has just been one of those weeks where I have been sad about what foods I am missing and feeling like I am a burden to others, rather than focusing on what foods I can enjoy, being thankful I have a diagnosis, having a disease that is manageable right now, and knowing I have a supportive and an understanding family. Thanks for the inspiration!
We all have those weeks, Megan – it’s hard not to! Keep your chin up and let yourself have those days. Nobody has to be strong 100% of the time!
My sister-in-law was diagnosed with Celiac disease and I was so glad to have two food-related blogs, yours and Chris loves Julia, to refer to. I don’t have to worry about gluten but I keep a list of recipes for her in mind. I’m glad you’re out there telling people about this.
You are so kind, Susan – I’m sure she appreciates that so much!
Thanks for this beautiful post. I don’t have Celiac, but I do have an un diagnosed chronic illness (docs can’t figure it out). I found a great naturopathic Neuro who put me on a hardcore elimination diet (no gluten, dairy, sugar, soy, corn, nuts, etc etc!). After nearly a year of this I’ve slowly reintroduced (limited) foods again and have seen an improvement in my symptoms. I have not returned to gluten because I’ve found that its been one of the larger issues in healing my immune system. I completely agree with all of your comments. It’s not easy living like this, but it’s doable and like you said, it’s LIVING which is most important!
PS – would love to find out what everyday and beauty care products you use that are GF.
Ugh, I’m so sorry to hear this, Yeni! I hope you get answers soon! I have been using products from Primally Pure lately and absolutely love them. https://primallypure.com/ I believe Beauty Counter’s products including makeup are all GF, all-natural, etc. You should check them out!
I hear you. All your frustrations are familiar. But the worry about hurting other people’s feelings or their judgemental eye-rolls., screw that. Just compliment the heck out of whatever you can’t have, say it smells wonderful & you can just imagine how awesome it is…& leave it there.
I decided against testing since I couldn’t really see any point to suffering with cramps & diarrhea for weeks to get a diagnosis. I know how to cook for myself & pack treats to get through social events. A small incidental ingestion usually only gives me shits for a few days, as long as there is no anal leakage on the furniture, I call it good. If someone really wants me to try their special home baked goody, that little detail generally gets’em to rethink.
For some unknown reason, I’m not only affected by wheat, rye & barley, but sorghum & millet too. So several gluten-free products are out for me too. I mostly avoid gluten free baked products altogether because they taste second-rate.
I love to read your recipes, you do a real good job developing them.
I have 2 suggestions: Try grilled polenta instead of gf pasta for a change-up. Served with grilled breakfast sausage & assortment of grilled veg, it’s a summer supper that will please everyone. And just this past weekend I had salted eggplant spears dredged in rice flour, deep fried with honey to dip. It was like eating baklava again. That was at a Thai restaurant.
I am Celiac and so is my daughter . It is tough and I thank you for this article. People cannot fully grasp the lifestyle commitment it requires and yes it gets old being ” that person”.
I only wish my mother would have been properly diagnosed as she suffered because of it. Thanks for sharing!
I’m so sorry to hear that, Lori. I’ve heard a lot of stories of people suffering for decades before being diagnosed. Glad you and your daughter are able to get healthy!
Love love love this post! While I tested negative for CD, I do have a gluten sensitivity and Ulcerative Colitis so I am no stranger to digestive issues. It wasn’t depressing at all and was informative while still being real. Gluten is EVERYWHERE but, fortunately, now there that is more awareness, GF options are much more widely available than they used to be. Keep on truckin’ lady!
Thanks Ryan – you too!!
As someone who was also diagnosed with CD later in life a lot in this post rings true. I had actually gone gluten free before getting diagnosed (I know now that is a bad thing) but got glutened and had a bad case of Dermatitis Herpeteformis that my GI used to diagnose me. I feel amazing now, have been able to maintain a stable healthy weight, and have gotten a lot better at cooking. I’ve stayed gluten free while travelling through or living in…let me count…8 countries (Germany, France, Spain, Croatia, Greece, Korea, Japan, and Cambodia) so don’t take those countries off of your bucket list! I didn’t eat anything ‘weird’ in any of those places, I was just able to find things I could eat. No, I couldn’t eat in any restaurant I wanted but it was totally doable. I’ve honestly had more trouble with getting glutened in the US because I’ve had such good luck in other countries I’m a little more lax than I should be here.
Oh, and thank you for this blog. I found it three weeks ago and you’ve been all over my meal planning. I’ve made the sausage gnocchi skillet, the steak and sweet potato rice bowls, chicken/bacon/parmesan pasta skillet, baked chicken parm, ‘roasted’ garlic chicken skillet, mongolian noodle bowls, and the bbq chicken stuffed peppers. My husband has been loving every recipe I try – so thank you!
Oh I am so glad to hear this!! I’ve heard Europe and Australia in particular are so accommodating of Celiacs, and am super happy to hear about your experiences in Asia. Thanks Emma!
Thank you for addressing the psychological symptoms. These are the hardest for me to deal with as well and I think the least talked about issue.
Agreed, Kaitlin! Glad you could relate. :)
My granddaughter was diagnosed with Celiac Disease in October of 2016, at the age of 2 1/2 years of age. Unfortunately, she went undiagnosed for approximately 6-8 months. She was a terribly picky eater who did not like to eat. As a grandma I knew something else had to be going on. She was getting thinner and thinner, yet her belly protruded a lot! She didn’t want to eat junk food even, so you knew it just wasn’t a typical picky eater. Twice my daughter took her to her pediatrician and her doctor said not to worry about it because both her and her husband are tall and thin. I wish I could attach a picture for you to see what she looked like before. Anyway, finally a doctor was very concern because of the extended belly. They ordered the endoscopy and it came back confirming she had celiac disease. She had only gained maybe one pound in a year. After her diagnosis, she has now gained 7 pounds in the last 6 months. She is such a different child, it’s unbelievable. She will eat just about anything you put in front of her, she has so much more energy, and is just thriving. It’s sad that it took so long for the doctors to diagnose this. I have RA and thyroid disease myself, so I wonder if she has this disease because of my auto immune diseases. Thanks for sharing your story!!
This is such a common story! I’m so, so glad your daughter kept persisting – a mother (and grandmother!) always knows when something isn’t right. So glad to hear she has a diagnosis and is on the mend!