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

58 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.

      • Darci Kreinbring says:

        Going gluten free helps your gut absorb the vitamins and minerals your thyroid needs to be healthy. I have Hashimotos auto immune disease and hypothyroidism. Not only do you need to be gluten free but soy free. Soy is even worse than gluten for thyroid disease and it’s in everything too. Currently I have to be gluten free, dairy free, soy free and egg free because of allergy and intolerance. I eat only whole foods and read every label. Its exhausting. I’m lucky and have a very supportive family.

  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. Chi says:

    Thank you for this.
    Cross contamination is really an issue for me and some of my friends with this condition.
    We sometimes want to believe, if the amount isnt large it wont matter.

  6. 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

    • janet slifko says:

      Wheat…rye..barley..and sometimes oat..u can purchase gf oats..Google 4 list of foods u need 2 avoid..i also purchased a hand held book that u can look up .for example ice cream and it will name all brands and flavors that r gf…it saved me hours from reading label..told my gastro Dr about it and she now uses it 2 help her patients learn their way around gf eating..called gluten -free grocery shopping guide..last edition I have is 2014/2015..not sure if they still publish..www.glutenfreeliving.com or 800 437 5828..see if u can still buy them..they r around 25$..I loved it…huge help..

  7. 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.

  8. 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

  9. 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.

  10. 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.

  11. 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

  12. 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!!

  13. 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 😄

  14. 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.

  15. 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!

  16. Kathi says:

    I am new to the gluten free world but I think I’m doing ok so far. I had a question though, does anyone have a good recipe for gluten free sugar cookies? Seems there hard to make the dough very good.
    Thanks

    • Chris says:

      No I don’t but archway makes chocolate chip and sugar cookies u can get them on Amazon they cost a lot but are worth it for a sweet

  17. Lori says:

    As I read your blog, I felt like it was something I had written myself lol. I lost my hair and eyelashes the year I was diagnosed with celiac. That’s when I knew something was really wrong even though I’d been going to different doctors for over 15 years trying to find answers. They never thought to test my blood or do an endoscopy until I was 46 years old. Thank you so much for sharing. I’m only one year into this new life and it’s great to be able to read from others who have experienced the same struggles and can provide some good advice.

  18. Else van Wyk says:

    Hi all
    I am also going through gluten intolerance, struggelung for years. I found John Bergman and Barbara O’neill with life changing change in eating habits. Hope you all find good advice there, I did and it changed my life after 5 hip operations!

  19. Sian Egbuniwe says:

    I have experience the same as you also. I take my food out just in case I am unable to find a gluten free restaurant. And yes just one bite sends me out of sorts and more serious side effects too. However, after over 6 years of a strict diet I now feel so much better, no pains or other issues and I am also feeling so much healthier too.

  20. Janine says:

    Can anyone tell me some of your serious symptoms before you were diagnosed? Like I have all the similar, but then a bad attack cause other weird things like….racing heartbeat, feeling flush or heart rate drops, many gurgling sounds from insides, anxiety, burping a lot, light headed, and a weird feeling like my midsection is pulsing like a heartbeat. Anyone else with any of these symptoms when your are contaminated? Thanks in advance,,,,would so appreciate opinions. Janine

  21. janet slifko says:

    Buy bisquick gf pancake mix…i make snicker doddle cookies with it…they are excellent…you can Google gf recipe for sugar cookies too…goggle for any kind of recipe..its great…may have to buy different kinds of flour to use but most are found in the bigger grocery stores..even have gf aisle…

  22. MamaJay4 says:

    My first thought when I got the news was: “I’m screwed! Yep, that was my first thought! LOL, I’m lactose intolerant, allergy to coconut oil/products, I have gastroparesis, IBS, celiac, my hubby is diabetic! I’ve been cooking both of us for 51 yrs! Yep, we are both screwed, I’m 71 and now I need to figure out another detail for us to NOT eat. Up until now, I have been cooking mainly for him with his diabetes. I’ve just been eating a lot of the same ole, same ole!

  23. Charlene says:

    I really appreciated this. My 9 year old and I have both recently found out we are gluten and lactose intolerant. The pain was unreal which is why we went to the doctor and eventually found the cause. It’s difficult for her because she feels like everyone knows her food is different and that they’ll think shes weird. Thank you for sharing this, I think she’ll also become more comfortable after reading this.

  24. Alison says:

    Thank you for this! I just got diagnosed with celiac. I also have two other autoimmune diseases (hashimotos and type 1 diabetes) my main concern is trying to figure out how to integrate both of these diets in my every day life.

  25. Emily says:

    I’m 19, and was just diagnosed with celiac a couple months ago. Growing up I had many symptoms like unexplained seizures, countless cavities, and many more, but doctors couldn’t figure out why and dentists assumed it was bad hygiene. I’ve had stomach pains for as long as I can remember but they had gotten so bad over these past two years that I was missing school constantly, calling in sick to work, missing out on trips and sleepovers because I knew I would have pain and didn’t want my friends to see me like that, taking Advil and Tylenol daily to help ease my pain (knowing that it wasn’t good for me), and countless doctors appointments just to be told it was anxiety. When I finally had bloodwork done and we realized I had celiac disease I had an endoscopy and biopsy to confirm, I’ve just started my gluten free diet this month. I was so relieved to finally know what was causing me all of this pain. I knew the diet would be hard but I didn’t realize that it would also affect me in a social way. I would have to bring my own prepared food when going to friends houses or to work or that I wouldn’t be able to just go out to a restaurant with friends and making my own separate meals every night while my family all ate something “normal”. Most people don’t understand and I’ve been having a very hard time adjusting. I came across this post while having a pretty rough night coping with my new adjustments and I just want to thank you for sharing, after reading your post and all these comments I don’t feel so alone.

    • Margaret Bunce says:

      I have been down the same road as all of you with no help from my doctor what so ever. Gluten free affects the whole family, they are so supportive. Yes it effects every aspect of your life. I was ill a few weeks ago and admitted for the first time that I hate going on holiday because it is so difficult and I dread it. I should not feel this way as we have had some amazing holiday I just wish I could remember more about them but when your are ill you live in a fog another world and some how you just get through it. Maggie

  26. Inez Hanan says:

    WOW thank you so much for this information. I’m looking forward to more information. I’m new at this and struggling.

    • msmodify says:

      I’m sorry to hear you’re struggling, I promise it gets easier over time! I’m glad you found it helpful! You can search “celiac” or “gluten free tips” in the search bar on my page and see other posts you might find helpful!

      • Marilyn McMahon says:

        I have been go for 18 years and have still made mistakes lolt of products list gluten free. But have maltodextrin in them.
        Was told by one manager from a company that when they list maltodextrin it is gluten free. What do you think?
        Love your response to the people you respond to. Sincerely. Mariyn

  27. Olivia says:

    Thank you for sharing this post !
    I’ve fully gone gluten -free because I’m very sensitive to gluten . I have an auto immune disease called psoriasis and gluten free has helped me so much . My doctor never told me to go gluten free my naturopathic doctor did !
    I also suffered from migraines and going gluten free has made them occur less and I all around feel better and healed finally . I’ve realized gluten is a major trigger for myself & migraines but you won’t realize that unless you get a food sensitivity test done . I really recommend getting one to anyone seeing this post .
    I also really recommend seeing a naturopath if you have an auto immune disease , or suffer from acne.
    Have a good day

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