10 Things I Wish I Knew When First Going Gluten Free

10 Things I Wish I Knew When First Going Gluten Free

When I found out I had celiac disease I felt so relieved… finally I had an answer on why I felt so bad always! I was so excited to be gluten free because that meant I would feel great. Although relieved, I was also extremely overwhelmed because I started learning it was not as easy as I thought it would be. When my doctor told me to stop eating gluten, my initial thoughts were it would be simple to give up things like pasta and bread. Quickly I learned going gluten free because of celiac disease was more complicated than that.

In all honesty I struggled hard with the illness the first year (if not longer) because unfortunately I had to learn the ins and outs of celiac the hard way. I didn’t know the term cross-contamination until a year after my diagnosis (I’ll discuss that further below!).

 I learned some things from my doctors (not enough!) and educated myself through books and major medical websites, but honestly I’ve learned the most about my illness through living it and trial and error.

If you’re new to a gluten free life because of celiac or for other health reasons, my hope is I can remove some of that trial and error for you through what I’ve learned!

If I Could Go Back and Give Myself 10 Helpful Tips That Would Have Made the Transition Easier They Would Be:

  1. Breathe: 

    This is going to be a lifelong journey so hold on tight and ride the bumps! Just breathe and stay calm. Stress will make everything worse…literally. Stress reduces your ability to sleep at night and focus during the day, and increases your chances of getting sick.

    One of my symptoms when I get glutened is hair loss. I’m not talking a few strands on my brush, I’m talking handfuls! Naturally that is upsetting and stressful but I’ve learned it’s a vicious cycle. The more I stress, the more my hair falls out. Now I know the drill so I try to stay calm and just breathe! This too shall pass.

    Something else to keep in mind… we’re all human and will make mistakes. I know we all try to never get glutened, but unfortunately most likely it will happen at some point and you can’t get down on yourself and dwell. Learn from your mistakes, move on and continue to breathe!!

  2. Have a Support System:

    I think this would be the biggest piece of advice I could give. I have the most supportive husband and family, which made my transition easier. They literally were with me every step of the way…even removing all gluten from their kitchens! My mom is a nurse so she went with me to all my doctor appointments, would research and explain things to me, and most importantly be my shoulder to cry on when I needed it. I highly recommend having someone to go with you to doctor appointments and be able to vent to.

    Where I made a mistake was not letting my friends in about my struggle. I never wanted to burden anyone with my problems or let them know I was having a hard time. By me not opening up made them not ask and think everything was ok when it wasn’t. Friends are there for you during good times and bad, and if you let them know what’s going on you won’t have to end up making excuses on why you can’t eat out with them or why you’re sick in bed. Don’t be like me. Be open. Let people in. Chances are they want to help!

  3. Become a Label Reading Expert:

    The first few months I went gluten free, grocery shopping was such an ordeal… I mean hours! Reading every label and figuring out what to buy. One time I felt sick and retraced everything I ate and apparently I accidentally bought sugar free honey which contains malt! So I learned my lesson to read labels and never did that again… I learned, moved on and kept breathing (see #1).

    It will get easier and you’ll become very aware of what to buy. Even if something previously was gluten free, don’t just assume it still is…turn it over and read it! Now I have a rule. I only buy whole foods (fresh fruit, vegetables, chicken, fish, etc…) or items that are certified gluten free.

  4. Start Cooking:

    My celiac journey has brought out the inner cook in me and I love it! People often think gluten free food tastes gross…well no, bad food tastes gross! And yes, there are some packaged gluten free foods I’ve tasted that aren’t great… so why not make my own!

    So… start cooking! I share some of my favorite recipes with you that I eat…let’s cook together!

  5. Don’t Be Embarrassed to BYOF!:

    Let’s face it, unless we eat at a 100% gluten free restaurant, we always run the risk of contamination. I’ve gotten sick eating at relatives houses, friends houses, restaurants, etc. even though they said they made me gluten free food. 6 ½ years later I finally realized it’s not worth the risk. Don’t get me wrong I still eat out occasionally (mainly at places that have dedicated gluten free kitchens), but now 98% of the time I cook my own food and bring it with me. Yup, that’s right I bring it with me…to restaurants, parties, holidays, even weddings. I just walk in with my lunch box and Tupperware (discreetly keep it under the table), and ask for a clean plate to serve my food on. My experience has been everyone is very nice about it.

    I wish I decided to do this from the very beginning because it has been a total game changer for my health! I hate to admit it, but the reason I didn’t bring my food everywhere was because I was embarrassed to. Can you believe that?! Ugh… what was I thinking? I guess I unfortunately  had to get sick one too many times to realize I had to put my health first.

  6. You’re Not Alone: 

    As I previously mentioned, a support system is important not only to get you through the difficult times in your celiac journey (or gf journey for whatever reason) but also to help encourage you and celebrate all your wins along the way. I’m blown away by the support I get from strangers (now I consider friends!) online! You guys, with all the bad that social media brings… there is also SO much good! I can’t tell you how many people have encouraged me and offered tips when I’ve shared I’m sick from gluten, or have cheered me on what I celebrated a milestone with my illness. If you’re not already, I highly recommend you get on social media and find others with celiac or that follow a gf lifestyle (search the hashtags #celiac and #glutenfree).

  7. Cross-Contamination Is NO Joke!:

    This is one that I wish so bad someone told me about when I was first diagnosed with celiac. Not even my doctor told me! It took me almost a year before I learned what cross-contamination was. Since it took me so long, it really took a toll on my health and didn’t allow me to start healing. I can remember how frustrated I was when after my first follow-up bloodwork and my numbers were still elevated and I still didn’t feel great… almost a YEAR after my diagnosis! That’s when I started researching everything I could about celiac (since my doctor and nutritionist didn’t tell me!) and finally learned about cross-contamination. I wrote an entire post dedicated to “cross-contamination” and feel very passionate about the issue… so make sure you read it!

  8. Gluten Hides in More Places Besides Just Food:

    Call me naive, but when I started my new gluten free life I thought it was only in food… and the obvious food at that… bread, pasta, etc. Quickly did I realize gluten seems to be in everything! (okay not everything, but it sure feels like it sometimes!). I used to work with kids, so I was shocked to learn it’s in play-doh. I wrote a post about hidden places gluten hides that you may find helpful! Also, don’t forget to check your medicine cabinet and your make-up bag.. Yup, gluten is most likely in there too!

  9. Many People Won’t Get It… and That’s Okay!:

    Unless someone is directly impacted by celiac, either personally or through someone they know, chances are they don’t understand how serious it is. You’ll get eye rolls when you say you’re “gluten free”, I guarantee you’ll hear “it’s not that big of deal”… or “one bite won’t kill you” (← that’s my favorite one!), and the worst is some people in your life may stop inviting you places because they think you’re difficult. Do all these scenarios suck? Absolutely, but you can’t let it affect you because you need to focus on your health and remember that most people aren’t informed on the issue. The best thing you can do is try to educate those around you and not take everything personally.

  10. Focus on the Positive:

    I know sometimes this is easier said than done, trust me I get it! I’m sure hearing the words “you have an  autoimmune disease that you’ll have forever” was not something you ever imagined you’d hear and I also know how hard it is to live with celiac. Our life has been changed forever… the convenience of eating out is gone, social events, traveling, even the cosmetics we buy are all different now. BUT… let’s focus on how much better we feel! Not only do we feel better, but our bodies are healing which lowers the risk of other health issues. Life could be so much worse, so lets focus on all the great things we do have!

    And one extra…

    When in Doubt, Go Without!:

    I think this one needs little explanation. If you’re unsure if it contains gluten or was contaminated just don’t eat it, use it, etc…just don’t!!

    I hope my tips will help make your transition easier! I would love to hear some things you wish you knew when first going gluten free!

    10 Things I Wish I knew When First Diagnosed with Celiac

31 comments

    • Sherri says:

      Hi, I too had to learn by trial and error. I am a biologist and discovered two years ago why I still was not feeling 100% after being diagnosed in 2013. LEGUMES!! They too are not good for the small intestines on a person with celiac disease. Peanuts, peanut butter and lentils are all legumes. Leaving these out have helped tremendously. There have also been published reports on this link from researchers as well.

  1. Penny says:

    Thank u, after many years on being so sick and in pain. Realized a week ago I’m gluten intolerant and believe I have Celica disease. Seen changes in myself only after 24hrs free. I’m 59yrs. This is a life change this late in life. No thyroid since 91 which has been hard enough. Thanks for the encouraging words.

    • msmodify says:

      Hi Penny! I’m glad to hear you’re feeling better, but please be sure you follow up with a doctor for proper testing and follow-up care!

  2. Hannah Hubbard says:

    Thank you so much for writing this!! It is so encouraging and helpful!! I would love to know any advice for doctors appointments and questions to ask because I have not been diagnosed yet but took gluten out of my diet and it is the only thing that has helped with my multiple stomach issues.

  3. Vanda says:

    Great post! Thank you! I know it will sound strange, but sometimes I wish gluten would make me sick… so I would know when I accidentally consume it. I went gluten free to heal my thyroid and it worked wonderfully. I try my best to stay away from gluten but because it doesn’t cause me any stomach issues or any other ilnesses I don’t really feel it right away when I consume some due to cross-contamination or hidden in foods I think gluten free. So I just have to wait until my usual follow up blood work to see my TSH level… anyhow.. I’m just trying to eat whole foods and try to avoid eating out. Hopefully that will do! Thanks again for the useful post, now I will check out your other post about hidden places gluten hides. 🙂

    • FMueller says:

      I’m curious about how you healed your thyroid by going GF. I too have thyroid issues and quit gluten 2 ½ years ago. My thyroid is still hypo without medication.

  4. Andre says:

    I wish someone had told me about cross reactive foods for gluten. I slowed down my healing process because I was still consuming things like chocolate, coffee, oats, corn, etc. my body things all of those are gluten. Didn’t make real progress until I cut every single one out.

  5. patty monsees says:

    I like what you have written. but, i got ibs.and alot of people have told me to go glluten free. The doc. dont know anything. My main problem is, I have no idea what to eat, what to buy. Its to confusing. I just want to quit. If you can help me i could really use it. Because , iam all on my own.

    Thank you,

    Patty Monsees

    • Donna Pierangeli says:

      Patty you can eat anything that doesn’t have malt barley rye or wheat in it. White flour is also wheat flour that has been processed.Ive been diagnosed with Celiac disease since 1992.Im doing well.I forget to pay attention to what food bothered me sometime or get stubborn and eat it.Dont do this It doesn’t help yourself.Im not doing it anymore.Feeling healthy is very important.Jusy read your labels Patty.Hpu are not alone.You may join a Celiac society meeting this would be great for you

  6. Velva says:

    Thank you for sharing, your article was very helpful. I went to the because I was tired all the time, my body felt fatigued. My doctor order lab work and everything was great, except it showed I was gluten allergic. This also explains the hair loss. So I’ve been trying to go GF, but as you shared its hard in the beginning…one day at a time and keep breathing is how I’m approaching this.

  7. Shannon says:

    I have been sick for a full year (nauseous daily) seriously had a million tests ran and nothing showed up until recently the GI Dr did a colonoscopy and endoscopy and blood work and found out I’m at gluten intolerant and dairy intolerant! Yes both!!!!! I’m depressed about it because for 11 days now I have been gluten and dairy free (as far as I know) and still feel sick! I’m hoping it just takes a while to start feeling better!! Is this the case you think?

    • msmodify says:

      Hi Shannon, I’m so sorry you’re experiencing this! It might take a while to feel better because you need to heal your gut, but are you careful about cross-contamination? After I was diagnosed with celiac I still wasn’t feeling well and it turned out I was still getting exposed to gluten through cross-contamination (I didn’t know what that was in the beginning!).

    • Beth says:

      Im both dairy and gluten free too, but also am on a low oxalate diet. That was the most life changing. Might need to look at that. It is nit for the weak, but depends on how bad you feel! And ut sounds like u know how i feel! Beth

  8. Jeanette says:

    Hi. My name is Jeanette. I am 31. I was diagnose with celiac when I was 28. I have been making sure to eat and use everything gluten free. I am doing everything I can to stay safe. But I am still having alot of issues. I don’t know what I’m doing wrong.

  9. Jeanette says:

    Hi. My name is Jeanette. I am 31. I was diagnose with ceiac when I was 28. I eat and use everything gluten free. I am doing everything I can but still been having symptoms and not feeling well. Everything I eat and use I call the manufracture to make sure its gluten free. I keep all the things seperate from everyone else like food and dishes and things. I wash my hands like crazy since my family isn’t gluten free. I clean like crazy. I put paper towels down on tables before I put my plates and things on tables. Since my family don’t clean after fixing thing and it leaves crumbs. It just seems like it never gets easier. I don’t eat at resturants. Any way I am so depressed about this. I just want to feel better. But I don’t know what else to do.

  10. Barbara says:

    Hi. I read where you went in for blood test. I’ve not had any concerning my celiac. What test or what do they look for in blood. I have some overlapping of food contamination and did have some problem but not sure if it’s actually my celiac. Any info will help. Thank you. Barbara

  11. Kat says:

    Gluten is also in Armour Throid which is Thyroid Medicine. I found that out after taking it for months then being told I’m highly gluten sensitive. I was switched to a gluten free thyroid med for only two months due to the fact that my local pharmacies can no longer get it, forcing me back to the med containing gluten!!😕

    • Leah Bush says:

      Thank you for this! I am on Armour and my Doctor has told me to go gluten free due to Hashimoto’s Disease. No idea Armour had Gluten!!

  12. Dana says:

    Thanks for this info I have systemic scleroderma & have had it for thirty yrs final got a doctor who told me to go gluten free so we will see 😄

  13. Kim says:

    I just found out I am sensitive to gluten and casein so I quit eating dairy and anything with gluten in it. I have so much more energy, losing weight and sleeping better. No more brain fog too.

  14. Kayla says:

    Hi! I’m 27 and I was diagnosed with celiaki this March. (2019) I’ve also been taking meds for my thyroid problem since 2010. The trouble I’m having is that I don’t have any stomach issues. I have no idea weather or not I’ve accidentally eaten gluten or not because my body won’t tell me. I don’t know what to do and I have never heard of anyone else who is without symptoms. I had one meeting with a dietitian just after being diagnosed and now I’m completely on my own until next year. It turned out my insides were severely damaged, I suffer malnutrition and I can’t absorb my thyroid medication properly, making the levels too high. The one celiac organisation we have in Sweden you have to pay to be a member of, and I have found no forums or groups in my area. I feel very alone, with limited resources, money, and help.

    I’m glad to have found you guys though. Any advise would be helpful!

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