So, as I always try to remember is true for everyone I interact with each day, there have been some things going on in the background of my life.
One of them is continued stomach aches and GI issues frequently and urgently popping up at inopportune times and seeming without regard to what I've eaten or how I've acted before. Also the chronic yeast infections I fought for years, while MUCH improved since going off hormonal birth control (and thus initiating a chain of events that ended in a tubal ligectomy + ablation and then a full hysterectomy), are not entirely gone despite doing ALL the things you are supposed to do to prevent them. In addition, the occasional heartburn and bloating remain present, along with brittle nails, random patches of eczema or psoriasis, and rosacea.
Thanks to an abdominal CT scan during an executive physical last year, it was discovered that my gallbladder was "packed full" of gallstones. This came as a shock to me since I'd never felt any pain from the stones or had many of the expected symptoms from them. However, after discussing it with my doctor and a surgeon, and noting that I did indeed have GI issues, heartburn, and bloating, and taking into account that a gallbladder as "packed full" as mine can become gangrenous and necrotic and cause a far more emergent situation, particularly while traveling, we decided to have it removed and that surgery was done last fall. And yet, my symptoms haven't really changed? If anything, they recently got worse.
Which brings me to the GI specialist initial appointment I had two weeks ago. The doctor who oversaw my executive physical strongly recommended a colonoscopy as early as insurance would cover given my many GI concerns and the sharp rise in colon cancer among young adults. He recommended a particular doctor in Dallas, who I then failed to contact for many months, and then had a many month waiting list once I finally did.
My appointment was May 8th. I liked the doctor very much. He was attentive, asked a lot of questions, and listened to all my answers. He showed me pictures and charts to explain what he was telling me, and as a fully visual learner, I appreciated this very much. He let me know that 1 out of 100 gallbladder removal patients experience bile acid malabsorption which could be the cause of my recent increased issues. There's a daily pill that often works to fix that, so we're giving it a try. Then he ordered a few tests to rule out other things while we wait to see if the pill fixes the potential bile issue.
One of the tests was a celiac blood panel. It was a relatively small blood draw, done immediately following my appointment, and the results were back in two days. My result for Gliadin AB IGA and IGG were high. My Tissue Transglutaminase Antibody IGG result was normal, while my Tissue Transglutaminase Antibody IGA result was well over 100, more than 10x the normal upward limit.
In other words, I almost certainly have Celiac Disease. Celiac is an autoimmune disorder where your immune system attacks the tissue of your small intesting when you eat gluten, causing damage to the villi, leading to malabsorption of nutrients and numerous other issues (issues like literally everything that's been wrong with me). The only real treatment is to stop ingesting gluten in any form.
While my blood work values are such that a definitive diagnosis could be made based on them alone, my doctor is concerned about certain additional conditions I could have and wants to do an upper endoscopy, take duodenal biopsies, and do a colonoscopy to get a look and a baseline. I'm scheduled for June 12th and have been told to NOT change my diet until after that procedure.
Honestly this is something of a relief as I feel like I have some times to mentally adjust to a big change and permission (indeed, an order!) from a medical professional to spend 30 days saying goodbye to my favorite glutenous foods. A gluten farewell tour, if you will. So I've been eating normally (i.e., not going carb crazy), but very intentionally savoring every bite of the perfect bagel I ate in NYC, my very favorite pizza for dinner last Friday, and the best grilled cheese in Dallas while my mom was here to shop. This is also why James surprised me with the reservation to our favorite Italian restaurant and that small plate of Cacio e Pepe was everything I needed it to be.
I was going to wait to write about this until after the June 12th procedures so I could be certain, but the truth is the blood work is pretty conclusive and my brain is busy processing this now and writing has always helped with that. If my biopsy comes back with a different result after June 12, then I'll process that through writing too. After I got the panel results back I asked my doctor how likely it was I did not have celiac (i.e., can I spend this time researching the disease and mentally preparing myself?), and he said there was almost no chance I do not have it and if research brings me more comfort than anxiety then I should feel free to start.
So I think we all know I IMMEDIATELY dove into research (which I would have done anyway, but I was curious how my doctor would handicap my chances of a "nevermind! continue eating all the gluten forever!" end result). And it has brought me some comfort. It has also answered MANY MANY things that have been problematic and/or mysterious about my body for the last 20+ years.
Like my chronic yeast infections and the painful allergic reaction that developed in response to them, my frequently shitty immune system, my lifelong GI issues, my surprise gallstones, my headaches, my frequent mouth sores that constantly appear even though I barely eat any sugar or candy anymore, my skin rashes, my frequently low levels of vitamins in my blood work, and more. It's so much that I alternate between relief at the idea of future improvement and fury that I never had this simple blood test before. I have seen so many doctors for so many years. Relief and fury, indeed.
I am comforted by the close friends I have who have been living a gluten-free life with Celiac Disease for years. I know it can be done and I know there have never been more gluten-free options than there are now. But I'm also in mourning. I know it will be fine, but I also love Cheez-Its and bread and pizza and pasta and cookies and CHEEZ-ITS and I will miss them.
It made me feel better when, during our dinner date at Nonna on Saturday night, I mentioned to James that I was a little sad to be eating my last plate of classic Cacio e Pepe. "Oh I'd be devastated," James immediately replied, holding my hand and giving it a squeeze. "I'm being positive for you, but all the best things have gluten. I would be so sad." And I felt seen. This man who seems to be able to adjust his diet at will- to cut out foods he thinks make him feel bad, to add in foods he doesn't like because they make him healthier, to stop drinking alcohol for a decade at a time because he wanted to see how it would feel- this man who cut out all candy and desserts when he decided to get back into competitive swimming as an adult, who stopped eating most gluten a year ago when he decided it made him feel better. THIS MAN would be emotional, devastated, depressed... I really did feel better.
So that's where I'm at. I'm truly largely just relieved and excited about how much better I think I'm going to feel in the future. I'm energized by the challenge- I love change, and I love all the reading and thought and work that goes into one. I'm aware of how small a change like this is in perspective to the health issues of so many others. But I'm also sad? There are alternatives to all my favorite things (well, maybe not cheez-its), but those alternatives are just that- alternatives. Stand-ins. By definition, not the original. Everywhere I go I look at the menu or the conference room food service station and assess the gluten-free options. Sometimes they aren't great.
James is all in on support. He does nearly all the cooking will adjust our menus accordingly. The kids are on gluten watch and constantly telling me when they come across it in the wild (constantly, this is constant). I'm reading and learning and mentally adjusting every meal I see to what it will need to be in the future. I'm bracing myself to have to answer "yes" when the server asks if there are any allergies or sensitivities they need to be aware of, and having to potentially turn down well-intentioned food or treats made or served to me (this is more horrifying than almost anything else). I worry a little about all our future travels and the additional awareness and research that will need to go into all of it and the fact that I will not be able to dive face-first into the fluffy pita plate like I did when we finally got to eat after landing in Egypt.
But! I am largely relieved and optimistic. I'm currently on a plane flying home from a trip to DC (my take on the airport's gluten-free options was they were few and unimpressive) and would love to know any stories, resources, recipe blogs or books, and/or anything else that might be helpful. I've got 21 days until my biopsy and I would like to have read the entirety of the trustworthy part of the internet and feel more prepared by then!
RUPAUL’S DRAG RACE ALL STARS: Wicked Good
5 hours ago
Aww, I'm so sorry to hear you're going through this! BUT, it sounds like overall a relief to have some answers to your ongoing symptoms- and to know what solutions exist. And yes, seems crazy that that wouldn't have been tested before! (P.S. Next time maybe lead with "a new diagnosis (not cancer!)!! I got super scared for a second reading "GI" and not knowing where this post was going! ;)
ReplyDeleteOh my gosh great point - fixed!!
DeleteI am still in a mystery digestive diagnosis loop as well. Commiseration and solidarity to your situation. I also had a gallbladder full of stones, removed in 2017 and haven't been "right" ever since. Got the gaslighting in one state by a GI doc and moved to another state 3 years ago, where I decided to try a GI doc again (mystery symptoms, SO MUCH FUN, like odd gallbladder area "pain attacks"). Anyways, endoscopies are easy, I've now had 2, all the tests under the sun (biopsy, blood, "output") and everything is fine,, minus a small ulcer found during endoscopy. Anyways, all this to say that Bile and Fat Malabsorption is REAL and I have also been doing my own research on that. You can also ask about the...Sphincter of Oddi, which is gallbladder area related. Good luck, enjoy the endoscopy nap (it's a good one) and best wishes for answers and relief!
ReplyDeleteSorry to hear about the health issues. I have made these for a gluten-free friend and her husband using chocolate chips. These might cheer you up: https://lemonsandzest.com/gluten-free-blondies/#wprm-recipe-container-16296. I think GI issues may go hand in hand with the practice of law. I have GERD.....
ReplyDeleteI'm sorry to hear about your dx. It's a big life adjustment. I went through it in 2009 and it has gotten so much easier over the last 5-10 years. I am able to eat out at restaurants and not worry about cross-contamination too much but I know people who have issues if they ingest just the tiniest bit of gluten.
ReplyDeleteMy favorite blog for recipe inspiration is iowagirleats.com. She has tons of great recipes. Being GF kind of forces you to focus on the perimeter of the grocery store (protein and produce) so it's not the worst thing but is still challenging to adjust to. I have found that the best GF bread is at Aldi, of all places!! It's normal-sized (most GF bread has a "honey I shrunk my bread" look to it, and is very expensive). I like to have toast with eggs and such so that is one GF product that we stock. I have kind of given up on GF pasta, but have not tried a wide variety of brands. The ones I've tried are pretty good for that meal but do not reheat well!
Pro-tip for GF pasta - reheat by placing in boiling water for 30 seconds. That’s all it takes. Do not microwave - it will fall apart. Reheating this way means you can’t store it mixed with sauce, unfortunately. I learned that tip from a Celiac of 40 years and he was absolutely right! Even my kids eat GF pasta reheated that way. We like Ronzoni best, followed by Barilla. Only the adults are willing to eat Banza pasta in my house!
DeleteOne of my kids is currently in the "whole host of GI mysteries" saga, so I've become kind of an expert on all things dietary restriction. It super sucks but also it's a good time to have restrictions because it's so much more prevalent. For a minute she was allergic to essentially everything under the sun, gluten included. Walmart of all places is a treasure trove of GF treats. My kid also had a very emotional response to Cheezits but found the Simple Mills puffed cheese crackers to be an acceptable alternative. Simple Mills is/was my go-to for all things gluten free. The bread mix makes actual bread, the pancake mix is delightful, and the crackers are all tasty. I hope that you're on the path to feeling so much better, and I'm sorry it took so long
ReplyDeleteYou amaze me. Despite all the issues, you are active, productive and a bad ass. You are my hero.
ReplyDeleteBoth of my kids (now 7 and 9) have Celiac. They were both diagnosed in 2021. My littlest can’t handle oats either (this is common for sensitive celiacs). Neither of us parents have it, so it was all new to us. We have lots of experience with this by now and have tasted almost every safe GF food on the market! I highly recommend Modern Bread and Bagel for mail order GF bagels. I make our bread weekly because it’s better and cheaper than anything on the market. Happy to share tips as helpful! Celiac clusters with type 1 diabetes and autoimmune thyroiditis so those are good things to watch for as well.
ReplyDeletePS Cheetos are gluten free and the crunchy ones are not a bad Cheez-it substitute. They are not the same, but do have the crunchy cheesy snacky vibe. We’ve never found an actually good cheez-it sub other than those.
DeleteUgh! This is really hard. As a doctor I am so sorry that it took so long for you to be diagnosed. Unfortunately, it is really common. The vitamin deficiencies are supposed to be the clue, still... Anyway, I happen to be connected to an Aussie patrie chef in France. Happy to connect you both for recipes and survival skills.
ReplyDeleteHah! commented too fast. Happy to connect you with an Aussie pastry chef with celiac disease who lives in France...pardon the misspellings and omissions.
DeleteWhat a bummer! I have also had autoimmune issues over the years and they are so tricky to diagnose. I know the diagnosis is a bummer but hopefully the changes will help you to feel better. I am also a lconsumer of way too many Cheez Its (the hot and spicy have my heart!) but am on a “clean-er” eating journey and trying to really Watch protein. I just discovered Catalina Crunch Cheddar snack mix…it isn’t Cheez Its but it is crazy good and gluten free!! I let all my GF friends know because it is excellent (as a fellow cheez it connoisseur -ha!)
ReplyDeleteBest of luck to you!!!
Long time reader first time commenter. Check out Alex Snodgrass — the Defined Dish. She’s on Instagram and has a blog and cookbooks with tons of absolutely delicious gluten free recipes.
ReplyDeleteI try to always tell myself that clarity is a good thing! I am very solution oriented and I imagine having an answer is thrilling in its own way, even if it is not an ideal answer.
ReplyDeleteI am a new mom and my six month old daughter has had a host of dietary intolerances and allergies...and to keep breastfeeding, I've gone dairy, soy, egg and gluten free for the last three months. Mourning gluten is so valid but as someone who has had ongoing GI stuff for 15+ years, this is the best I've ever felt - feeling better and healing is incredible motivation to cut it out. I want a REAL sandwich more than anything (I have not found GF bread to be enjoyable...) but I KNOW the havoc it would wreck. You will be great, you will feel great, you have an amazing support network and that is great!
I went through the exact same thing with my oldest child… had to cut out gluten, dairy, soy, and egg and was already vegetarian. I found the oh she glows blog and cookbooks so helpful and I still cook from them 11 years later. After 18 months of nursing her… she outgrew all sensitivities so keep up the good work! :)
Deleteyou know I already texted you but in case anyone else is perusing this with new celiac diagnosis - def get the kids tested too because this can really run in families. It can also evolve over time (so a kid could be negative at 5, but positive at 10). I bet this will become habit and you will be a super gluten free pro so quickly!!
ReplyDeleteSeconding this. My T1D baby was celiac negative at 1 year old and off the charts positive at age 2.5.
DeleteAh, yes. I've had Celiac for about 14 years now, thanks to my dad. I wouldn't have known if my dad hadn't been diagnosed and his doctor suggested my brother and I get tested as well. I never had any symptoms, now I react if I inadvertently ingest some. Thankfully, there are a lot of good gluten-free options now, but I still have such a hard time with GF pasta. If you find one you love, please share! Good luck with the tests!
ReplyDeleteI’m so sorry you’re dealing with this! I’ve been on a gluten free diet for 4 years now. It does suck to be the only one in the family who can’t eat gluten, but it sounds like your family is so supportive! You will get used to the taste of GF substitutes eventually (toasting GF helps). And even though I miss various foods/treats, I feel SO MUCH BETTER now that I’m generally not tempted by the regular versions. I’ve also had lifelong GI issues (at 43!) and it sucks that you’ve had to wait this long for an answer, but hopefully you will feel better soon and continue focusing on the future. Also, I second iowagirleats for recipes. :)
ReplyDeleteI'm sorry to hear of your diagnosis. I've been living with a chronic disease for 44 years. There will be good days and downright crappy days. Be sure to take care of your mental health! It plays such a huge part in your ability to thrive. My daughter-in-love, Caitlin Hurst, has celiac and lives in McKinney, TX. I'm sure she would love to help you as you navigate your new normal. On the good side, Caitlin traveled to Paris and had zero issues eating croissants, bread and all the goodies! Europe doesn't mess with their wheat like we do in the U.S. so you may have to just travel more!! :)
ReplyDeleteMy son used to be gluten free and we loved this pasta! https://depumaspasta.com/
ReplyDeleteThank you for this post.. some stories rang so many bells and all this might be super helpful to a 13 year old out there.
ReplyDeleteI've been eating gluten free for the last 4 years in an attempt to limit the symptoms of my own autoimmune disease (MS). (I went pretty strictly Paleo for quite awhile, but recently have just remained dairy and gluten free).
ReplyDeleteThe best web sites for recipes I have found are Ambitious Kitchen (not always GF) Paleo Running Momma, Nom Nom Paleo, Primal Gourmet and Defined Dish.
Some of my favourite recipes are:
Breakfasts / Snacks
https://www.ambitiouskitchen.com/5-ingredient-almond-flour-pancakes/
https://savorylotus.com/best-crispy-waffle-recipe-gluten-free-and-nut-free/
https://www.paleorunningmomma.com/paleo-blueberry-muffins-crumb-top/
https://paleomg.com/super-easy-chocolate-chip-banana-walnut-muffins-video/
*I also pretty much have some kind of either hardboiled egg situation in our fridge, or a frittata with eggs and veggies that I meal prep ahead of time.
Lunch / Dinner
https://www.paleorunningmomma.com/roasted-garlic-spaghetti-squash-with-asparagus-and-bacon/ (just add grilled chicken for extra protein)
https://thedefineddish.com/sheet-pan-salmon-nicoise-salad/
https://cookprimalgourmet.com/recipes/chicken-shawarma/
https://nomnompaleo.com/post/147964016043/curry-turkey-bites-apricot-ginger-sauce
And these are the cookbooks I always go back to:
https://www.amazon.ca/Defined-Healthy-Wholesome-Weeknight-Recipes/dp/0358004411/ref=asc_df_0358004411?mcid=875488efa47f337594a5dfe13ca7b2b0&tag=googleshopc0c-20&linkCode=df0&hvadid=706761880978&hvpos=&hvnetw=g&hvrand=6763779619229773930&hvpone=&hvptwo=&hvqmt=&hvdev=c&hvdvcmdl=&hvlocint=&hvlocphy=9001135&hvtargid=pla-864174981995&psc=1&gad_source=1
*the dill pickle chicken nuggets are a staple at our house
https://www.amazon.ca/Primal-Gourmet-Cookbook-Delicious-Lifestyle/dp/0735238596/ref=sr_1_1?dib=eyJ2IjoiMSJ9.Z21DKVowrdQi6vKHCe-qi1b7bsNeYxKlsTb6h4LnwE_YUyqy_Kz8-sByFdTTHYTc9RoqmYswGV4EeiWKTCmTvw_ER64CQWHgjwcXryEMm9CiJOoKtMArRpXBXqMMkJI-oKe40iVWNwQNYJy3KUquOsra1z9IapHLt7JJbmQ6OgWBH-A9Yt7nTnLzlrHzimwu9jn0WTcMQeS89WswV7uUqr5yrIPVGiIu2VKPqzru93VxElojB2zt6YLtvbpZ4tqu-lBzWuB0tnog2RTvWMCd5qwHg7ZY4pwqBdPKTP5I4pk.z_eAacvKcWEFXquM3MSR7044JOPns-z1umZQfkF-G7M&dib_tag=se&hvadid=605674337729&hvdev=c&hvlocphy=9001135&hvnetw=g&hvqmt=e&hvrand=6226376952889157826&hvtargid=kwd-860410451918&hydadcr=25176_13542644&keywords=primal+gourmet+cookbook&mcid=401a8f464042348e8698d5a2cbdd7d67&qid=1747849314&sr=8-1
https://www.amazon.ca/Danielle-Walkers-Against-All-Grain/dp/162860042X/ref=asc_df_162860042X?mcid=420ef467ea713ea4b190ed06175f032b&tag=googleshopc0c-20&linkCode=df0&hvadid=706838297720&hvpos=&hvnetw=g&hvrand=3322095952517644284&hvpone=&hvptwo=&hvqmt=&hvdev=c&hvdvcmdl=&hvlocint=&hvlocphy=9001135&hvtargid=pla-432553386413&psc=1&gad_source=1
*the beef stroganoff and chicken and "rice" casserole frequently get made on weekends to have lunch leftovers for the week!
I just developed a dairy sensitivity. I’m mourning my macaroni and cheese and cheesecake. Literally my 2 favorite foods. With my dairy sensitivity, I could still eat it and deal with extreme pain for 2-3 hours. What does that say about me that I would consider this?? I just went on a cruise with my sisters, and I warned them that my dairy intolerance is my new personality. 🤪I cherish the opportunity to discuss it here in your comment section. I hope you feel free to share your gluten free lifestyle as much as you want. I’ll enjoy it!
ReplyDeleteI have a dairy allergy (not just lactose, all dairy) and the adjustment was hard until a few days in when I felt SO much better, and that made me even more motivated. Now I look at old favorite foods and can't imagine putting my body though that again. It's been 8 years and I am constantly finding new ways to tweak recipes! It's a fun challenge! The part I hate is that I can't eat food offerings from people. I've gotten sick when even people who knew I have a dairy allergy made me things with butter ("but there was no milk! ...oh butter is dairy too?") It's hard but I now check all ingredients with people and always offer to bring a dishor my own meal depending on what the event is. The worst is pizza truck events BUT most near us have awesome GF options (just no dairy-free, sadly).
ReplyDeleteUseful cookbooks:
ReplyDeleteAmerica's Test Kitchen "How Can It Be Gluten Free" cookbook (they have a new volume).
Elana's Pantry cookbooks https://elanaspantry.com/cookbooks/
A few random favorite gf recipes:
seriously the best chocolate cake -- I have served this to many people and nobody realizes that it's gf. I bake it at least 3x year, because everyone in this house wants it for their birthday cake and only 2 of us are gf.
https://www.zenbelly.com/no-joke-dark-chocolate-cake/
naan (my not-gf husband, who often wishes he could add "gluten salt" to our gf home baked goods, loves this!)
https://healthylivingjames.co.uk/best-gluten-free-naan-bread/#wprm-recipe-container-10467
peanut butter cookies (I use this at the holidays and put Hershey kisses on top) -- can't remember where I found it on the web, but here it is:
ingredients
* 1 cup peanut butter
* 3/4 cup packed brown sugar
* 1 large or extra large egg
* 1 teaspoon vanilla extract
* 3/4 teaspoon baking soda
* 1/4 teaspoon table salt
1. Preheat oven to 350 degrees.
2. Beat peanut butter and brown sugar until smooth.
3. Add egg, vanilla, baking soda, and salt. Mix for about a minute.
4. Shape into balls, and if desired roll in sugar. Flatten with a criss cross pattern with a fork, or simply flatten with the bottom of a glass.
5. Bake for 8-9 minutes, don’t over bake, and let them sit on the baking sheet for a few minutes before transferring to a cooling rack.
for at-home pizza crust, my latest favorite is chick pea flour flatbread. it's got a great savory flavor
https://vancouverwithlove.com/chickpea-flour-pizza-crust/
We had a subscription to this for my daughter for a while, but you can buy one-off kits. It might be a good way to get familiar with some of the more difficult gf baked goods (I'm thinking sugar cookies -- you might be able to adapt their kit for your holiday decorating)
https://littlegfchefs.com
Parent of a celiac over here. We mourn cheezits and McDonald's the most. Our whole house has gone GF because I don't want her to feel unsafe eating at home. Things we found that are good:
ReplyDelete*Jovial pasta
*Good Crisp potato chips (great substitute for Pringles, they are better)
*GF Oreos
*Snyder's GF pretzels are infinitely better
*Sabatasso's GF cheese pizza, sold in a 3 pack green box at Costco. We dress ours up with our favorite toppings from home.
*Progresso GF Chicken Noodle soup is the best one.
*Jolly Llama ice cream sandwiches
*King Arthur Measure for Measure flour allows us to make all our old favorite recipes without other modifications
For cookbooks, we really liked "Cook Once, Eat All Week" which allows our family of three to have lots of leftovers.
I can see how there is an odd sense of comfort in a "you fit in this box" definitive diagnosis. I know how frustrating (and uncomfortable!) it is to have undiagnosed GI issues. I've had all.the.tests, blood, -oscopies, and others, doctors continue to rule out celiac and Crohn's and colitis, and it remains unknown. I am now trying various probiotics and next may be working with a nutritionist.
ReplyDeleteAlso I know how to bake GF -- I agree with others about using a good GF flour blend and knowing what recipes adapt better than others. That is a fun challenge. ;)
-Amanda
My 11 year old daughter was diagnosed last summer, after months of various unexplained health issues (extreme fatigue, anxiety, mood issues, inability to focus, always hungry, weight gain, joint pain, low bone density). She has been gluten free since July and is doing so much better. It is a slow and difficult road. For us, we have managed well at home with making gluten free meals and finding gluten free substitutes for most of her favorite foods. Food labeling has improved in the past few years but is still terrible. Gluten is not considered a top allergen so is not required to be specifically listed. Gluten is not required to be disclosed in medicine labeling either, so be sure to check with your pharmacist - even about things like vitamins and cough drops. Unfortunately, we found that many times the pharmacists don't even know and we have had to spend a lot of time on the phone with manufacturers. It is frustrating. Eating out, whether while traveling or otherwise, is still extremely difficult due to all of the cross contact concerns. Many places will say they have gluten free options but they turn out not to be Celiac safe due to cross contact. We wind up mostly packing or own food and she travels with her own personal snack tote of safe foods. We are fortunate to live near a top children's hospital with a Celiac center. Highly recommend connecting with a hospital with a Celiac center and working with a Registered Dietician who focuses on Celiac patients.
ReplyDeleteMy two kids and husband were all diagnosed ~a year ago. Happy to share our favorite food alternatives (some are great; some simply not worth it), travel tips (both domestic and international), and generally commiserate with what is a significant life change. Especially for my husband, I saw him go through the stages of grief (denial, anger, etc.). Yes, all things relative this is not the worst thing (after all there is long treatment available through diet and without medications!), but it is perfectly reasonable to grieve the change. Sending you care from across the inter webs.
ReplyDeleteLong time reader, infrequent commenter. I’ve 43 and was diagnosed with celiac just after my 21st birthday. I watched my mom struggle for over a decade before they figured out her diagnosis so when I got mine, I had the perspective of being grateful that they figured it out “so quickly” and all I have to do is avoid gluten to reverse the auto-immune process. BUT I just want to acknowledge that it does SUCK and you get to mourn, for sure. So give yourself that grace. I want to give you hope that I live a completely full, travel-filled life and this is completely do-able! You’ve got this! I have so many resources I could offer, but I’ll list just a few:
ReplyDelete1. Fast food - Culver’s is EXCELLENT for a gluten free bun / burger option. Chik fila also has a GF bun that works with their breakfast and their grilled chicken. Jason’s Deli is also SUPER GF friendly. And Chipotle!
2. Don’t lose hope - you can adapt recipes (like your beloved sugar cookies) to use GF flour. My favorite is probably the King Arthur GF blend, but make sure whatever blend you choose has Xanthum gum or if not, add it.
3. Mexican food (think corn tortillas) & margaritas! are always an easy choice!
4. In my mid forties, I’m more focused on nutrition than I was previously, so my current favorite blog / instagram for recipe inspiration is Mary’s Whole Life. She’s a fellow celiac too.
5. To replace your cheese-it’s, I’ll put in a plug for baked Cheetos (so good, but get the baked ones) or the synders GF pretzels. These pretzels are so tasty my kids even love them.
6. cheerios are Gluten free and they recently released protein Cheerios (strawberry, cookies & cream, etc) that are delicious and nutritious!
7. For travel, the find me GF app can be handy!
8. This will get easier / less daunting and sad, I promise!
I’ve raised a celiac child. You are lucky to have a disease that is basically cured through diet! Here are my bullet points:
ReplyDeleteBaking: chocolate stuff is easy to make gf.
Dinner: chicken, rice and veggies are gf, and there are many variations on that theme. Soup and salad. You may find it easier to eat things that are naturally gf for a while (like tacos on a corn tortilla) rather than sub for gluten.
Premade: Costco gf cauliflower pizza is good! Avoid soy sauce with supermarket sushi. Daily harvest bowls/smoothies/entrees might be great for your family - they were for is when my kids were your kids’ ages.
Healing: you may want to look at Dr Junger’s clean and or clean gut program, which I highly recommend to facilitate healing and give you a kick start into this new adventure. Gluten free is pretty easy, honestly (egg elimination is actually much harder). And fyi Italy has the highest rate of celiacs and so the gf knowledge and options there are fantastic! You will still lead a rich and interesting gastronomic life.
Another long term reader with a celiac diagnosis. I was diagnosed almost 20 years ago at age 48, after having doctors ignore my myriad of symptoms since I was 18. At least 30 years of pouring an inflammatory protein into my body has had lasting consequences including an incurable non-Hopkins lymphoma.
ReplyDeleteThe huge upside is that my son was 15 and had never entered puberty and had a testosterone level of zero. He was 5’2” and went gluten free (and dairy free) and is now 6’5”. He would never have reached his full height if he had not gone GF at 15. More importantly, he is very healthy and happy. I would advise testing all of your kids and caution you that gluten intolerance can present as depression or anxiety or other mental health issues.
Back 20 years ago was the dark ages for good GF food. I am a gourmet cook and like to eat a diet rich with unprocessed foods and full of high quality food. I used to have to make my own bread and cakes and pizza crust because the store bought options were so ghastly. I went 5 years without a good hamburger in a restaurant. But that is, happily, no longer the case. Trader Joe’s has the best gf bagels, bread, cake and muffins. They also have crackers called “Savory Squares” that filled my Cheezit void.
Traveling is still hard. I had an OK time in France in 2023 but I know some French. I couldn’t have the dishes that I wanted, especially in the small towns where there were less English speakers. Some servers appeared not to know what “sans gluten” meant. I’ve been to Mexico and that was hard and I”m going back in July which is a bit worrisome. I looked at your trip to Egypt and said to myself “I could never go there” and I could never go to someplace like Nepal or Japan unless I had a native who was willing to ask the right questions and translate. Even road trips require some advance planning and I’m happiest when I can bring a cooler of foods. Parties, buffets at hotels and dinner at friends’ houses can be hard.
But overall, being GF has only a small impact on my life. Hope you find the same.
This is a tiny contribution but just chiming in to say that I made homemade cheez-it’s a year or so ago (not gluten free) and they were SO GOOD that we still remember them fondly. So I imagine you could find a good GF flour and use one of the regular cheezit recipes online… it might scratch that itch a bit for you.
ReplyDeleteSeconding this. I make a cheddar cheese biscotti, actually, for cocktail parties and because the cheese and egg buns so well you don’t even notice that they’re made with gf flour (straight almond or our Pamela’s gf pancake mix both work well). As someone above wrote, eggs are a much harder sub than gluten.
DeleteI cut out gluten in November and feel much better. (I am most likely gluten sensitive but not celiac.) GET YOURSELF AN AMAZING CHOCOLATE CROISSANT AND SOME DELICIOUS YEASTED DONUTS. Those are the only things I truly miss! Lots of amazing substitutes except those things.
ReplyDeleteThis is internet advice so worth what you paid but I’m actually a GI doctor so…you can cut out gluten for a few days, like even this next week, and see if you feel better by say, day 5. That will give you some indication of what gluten is doing to your body. You can also stop consuming gluten 48 hours before your endoscopy and it won’t make a difference. We are looking for villi damage and it won’t heal that quickly. Celiac is poorly understood AND trendy - a dangerous combination that tends to make MDs a little more rigid than we need to be bc everyone is convinced they halve celiac even if they just “feel better” not eating gluten.
ReplyDeleteI really hope giving up gluten eases your symptoms — those sound miserable! I love your readers — they’ve already offered such good advice & resources. My husband is GF, here are a couple of other tips I didn’t see above - Tates GF cookies (especially the ginger ones!) are amazing; baked goods with other stuff in them (carrot cake, banana bread, cornbread, oatmeal cookies) are the easiest to make GF, just switch out the flour, things like yellow cakes are harder; often the good GF bread is in the freezer section (like udi’s); unless the pizza place is known for its GF crust, the cauliflower crust is usually better than the GF; GF stuffing mixes taste exactly the same as regular ones (stale bread is stale bread); & consider getting a rice cooker because you will probably start eating a lot more rice instead of bread. Good luck!
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