Part 1: How to go gluten free? It all starts upstairs!
So you just got the word you have to go gluten free for life. I assume you’ve been diagnosed with celiac disease or a severe gluten allergy. My condolences. As if your life wasn’t challenging enough, you just got it kicked up a notch.
Right now, your head is spinning. What do I do? Where do I start?
Take a breath…relax…I promise you, while not easy, you can and will do this.
But before you go crazy emptying the gluten-free shelves at your grocery store (a typical newbie reaction), you need to mentally accept that you can never have gluten again. I will say it again…you can never have gluten again…ever.
It stings, doesn’t it?
When I was first diagnosed five years ago, I remember telling Mrs. Dude that I can’t make any promises I won’t cheat. It just seemed so overwhelming. And permanent. And not knowing too much about the disease, I figured theΒ occasional slice of pizza couldn’t possibly harm me. Thankfully, I educated myself, I never caved and this has allowed me to heal.
But I know not everyone’s will-power may be up to the challenge. Take my advice. Give yourself time.
You’re pissed…and rightfully so. It’s ok to be angry. It’s ok to mourn the loss of your old life. It’s ok to long for the care-free days when food and spontaneity could be used in the same sentence. Be angry. Be sad.
But then move on. Look forward and not back. You have to or you’ll lead a miserable, bitter life. You can’t have gluten. Oh well. Face it…there are worse things in life. Much worse.
You have to rise to the mental challenge or you will never succeed in going gluten free. A friend of mine recently stated over dinner that my disease must be great for my will-power. It is indeed. Once you get it through your head that you CAN do this, it really gives a jolt to your self-confidence that you can carry over to all aspects of your life.
So for the next few weeks, focus on brain-training. And I promise, eventually your mindset will shift and you will indeed transition from “I can’t have that???” to “I don’t want that.”
And once you achieve that, you’re half-way there.
I’m so greatful for your knowledge. And since I’m newly diagnoised this series will be sooo helpful. I’m still going through the “I can’t have that” stage.
I was not tested on corn allergy but can there be such also? and what about yeast? I’m veg. but still loved all my sweets . and loved a good croisant veggie sandwhich.
Any advice would be highly appreciated.
Just be patient Heather. The shift WILL happen over time.
I’m reticent to give advice on other allergies…sorry. I’m sticking to what I know.
In case you are interested I wrote a guide on how to go gluten free the easy wayβ¦..Happy to send you a copy of the PDF if you want to post.
YES, I WOULD
I would love that PDF as well if you wouldn’t mind sending to me @ Neuch0002@aol.com
Thank you
I am 63 and was diagnosed a year ago. Looking back, I realize I have had Celiac all my life. So much makes sense now. Needless to say, a lot of damage has been done. I will not go into all my issues, but right now I am dealing with SIBO. I have about 5 foods I can handle at the moment. The other day I did not bring enough food with me to work. There was soup in the kitchen. My Boss suggested I have some. When I said no without even looking to see what was in it. (I knew it was per-packaged) she told me I was “unreasonable”. This is someone who has known me since long before my diagnosis and knows how rotten I feel. Just wanted to rant. Thanks for listening
I think your boss is the unreasonable one…and then some!
You’re welcome to rant any time you’d like.
My name is Nicole I am 16 years old and my sister diagnosed with the Celiac Disease .
She 25 years old , she started the GF Diet about 3 years ago . Im really sad/upset that she has it because she has change ever since she found out she had it . She went through a stage of depression for year or so . She lost a lot of weight during that time and she would be sad … She still has a generous and wonderful heart.. but something inside her has change . She cried a few days ago because she found out that she couldn’t make a spanish desert that she loved so much . It hurts to hear that she cries for “food”… see how that sounds .
I just wish there was a way I can comfort her … even though she lives miles away now ….
I hope there is a cure and FAST ! Any advice , anyone … ?
Thanks for reading .
You’re such a sweet sister Nicole.
Not sure how I can help but three years is a long time to be suffering emotionally from this. I know it’s a standard answer but I would recommend having her talk to somebody (therapist) so she can deal with her feelings.
Once she accepts the loss…it becomes a heck of a lot easier.
There will be no cure any time soon so the best path to happiness is acceptance.
Please keep us posted on her progress.
GD
My sister is doing way !!!!!! Better π She did struggle a lot at first but i guess shes use to being in a GF diet . Also , she moved on with her life ..she gave birth to a baby girl and she happier than ever !
π π thank you
Thank you for all your fantastic information. I’m one of the newbies since my diagnostic just came in a month ago. Every day I learn something new. It is good to everyday check your blog and your tweets because it makes the learning experience easier. You also give us a heartfelt support which I appreciate. It has been very difficult for my fiancΓ©e. He is having a problem understanding the concept of me being celiac or even accepting it. But the support you give all of us it’s enough for me. So I thank you very much for being there always.
You are quite welcome Socorro. Hang in there. It gets easier. And get your fiancee on board…asap.
I feel very alone in this celiac diagnosis. At first I was so relieved for the DNA results that confirmed celiac disease because I was at one point told I had a neuroendocrine tumor on my pancrease (pan -crease ultrasound). Biopsy said no, doctor said probably lymphnoid, pathology said not enough biopsy sample. All over the place, so I was happy with celiac. Much better gluten free but not all the way. Do all grains have gluten that could bother celiacs? It feels too hard giving up all grains but I’m tired of having a huge potbelly after I eat.
Hi Grace. Stick with us and I promise you won’t feel so alone. A great community here. Passionate, smart and humorous.
Here is the list of safe grains. That being said, I’ve given up almost all grains simply because they were hard to digest for me. Life of a celiac. I’ve also given up dairy and soy. You get used to it I promise.
Amaranth
Arrowroot
Buckwheat
Chickpeas (Garbanzos)
Corn
Flax
Flours from nuts/beans/seeds
Millet
Potato starch or flour
Quinoa
Rice (and rice bran/flour)
Sago
Sorghum
Soy (but not most soy sauce)
Tapioca
Teff
Thank you Gluten Dude,
I appreciated your reply and watched Jennifer’s videos. I was inspired, she verbalized what I was feeling.
I viewed your gluten free kitchen and it was an eye opener for me. “Grindz” a coffee grinder cleaner I was using had wheat in it and I am rethinking how I handle our dogs food and biscuits, (not that I eat them) but I touch them everyday.
Thanks again
Today i was diagnosed with celiac disease as well as sensitivities to dairy and starch. I want to tell you how much your knowledge has helped me, after the initial shock and after feeling very pissed and angry I found your website, it is like a little haven for me right now. Your advice has helped me face this challenge and realise that there is much more to life than gluten, which is how i felt earlier. Although i am only 16 and have a very long road ahead of me and many years of no gluten i can honestly say you have made me feel a lot better about this situation and the support you have given me just through your posts has made a huge difference, so thank you. Thank you for helping me feel less alone.
Gluten dude, I think finding this site has pulled me out of a serious hole. I’m from Ireland but I live In Germany, I’ve been ill for a long time this last year was really bad, and 2 months ago found out that it was CD.My first reaction was yipeee I’m not mad I’m ill. Now I’m grieving, it’s difficult. Although I feel a lot better it really will take time to heal, I still have no energy. But I’m finding that it’s more difficult than I though it would be. My home life is difficult I have 2 children 10 & 13 years old and my husband. We now have a gluten cupboard and try to keep it separate, but I’ve been glutened a lot throuh contamination. I guess it’s just alearing process for all of us. I really want to thank you I now don’t feel so alone anymore, just reading here helps π
I am so thankful for your site. I just found out that I have Celiac Disease. My allergist believes this is directly related to why my husband and I have not gotten pregnant yet. I was also diagnoised with Lupus when I was 10 years old. They believe that they were wrong, and it was been Celiac the whole time! Thank you for such a great site full of info, humor, and great information. This is overwhelming.
I have just been diagnosed with Celiac Disease—what a Christmas present! I am glad I now have a reason why I never feel that good so now it’s trying to get use to the fact that my old lifestyle is about to change and I fear it and welcome it if that makes sense. I knew something was wrong and after several years of testing I finally know….it’s scary and overwhelming….the Doctor told me I could hold off until the first of the year to start my gluten free life…it maybe wasn’t the best advice but hope I am ready for all of this in a few days….I’m working at that mindset first and then hope I can figure this all out and start feeling better.
I’m new to this and haven’t gone GF yet. I’m still trying to learn all I can. You said exactly what I’ve been feeling…I fear it and look forward to it all at the same time! I’m still dreading the transition haha! Thanks!! π
Great post, GD. Your closing remarks really say a lot:
“… focus on brain-training. And I promise, eventually your mindset will shift and you will indeed transition from ‘I canβt have that???’ to ‘I donβt want that.’
“And once you achieve that, youβre half-way there.”
I think of this as “psychological framing.” You have to make it about NOT what you CANNOT eat, but what you CAN.
Before my DX last year, I’d just read “Switch: How to Change Things When Change is Hard” by brothers Chip and Dan Heath. If you know Malcolm Gladwell’s books, the writing style is similar.
Little did I know I’d soon use this book to help my dietary adjustment (I ate tons of gluten like almost anyone pre-DX). I’m not saying it’ll help everyone who’s been newly DXed, but I thought I’d share this anyway. First, some background on my DX:
I never had severe symptoms β stomach pain, constipation, diarrhea, brain fog β that many celiacs get. My road to DX began at the blood donor clinic. After 10 donations, my hemoglobin suddenly screened out too low; I was barred from donating.
I visited the doctor where I was given a kit and asked to provide… samples. Being squeamish about this I just let it slide. I rationalised my low hg being from frequent (every 8 wks) donations, not fully replenishing before the next one so it caught up to me. I adjusted my diet (more iron) to restore it. A couple years passed, my hg returned, the clinic invited me back.
But the story repeated: after 10 more donations I failed again. I thought it could be serious so this time I’d do all it took to solve it and they eventually (8 months later) found celiac. Gluten hampered my iron absorption; the donations amplified it. (I had no other celiac symptoms, so it could have gone undetected until something worse happened β pancreatic cancer? Who knows? The life I saved by donating might well have been my own. How’s that for irony?)
Anyway, I’d had no idea of my gluten consumption, so this big change hit me like a 16t weight. I could have dwelled on it as “there’s all this food you CAN’T eat anymore, ever”, but eventually figured this was the wrong mindset. I had to “shrink the change,” as the book put it.
Looking back at the last few years, I realised my eating habits weren’t really so static. Even before the blood issue, I’d cut back on sodium-rich processed foods (high blood pressure runs in my family). Then more changes (more iron) after the first blood fail.
So from my reading, I re-framed it as, “You’ve already made some changes to get healthier. Successful changes. Nobody ever said there wouldn’t be more. This is just another change. And this one will be just as successful.” This turned a big change into just the next item on a checklist β one from which I’d already ticked off some items.
And this is how I “shrank the change.” Sure, I sometimes mourn the old life, but I find this approach helpful in daily life. Maybe down the road I’ll have another setback, and I can continue on the same mindset: you’ve checked off all these other items, so here’s the next one on your staying-healthy checklist.
I’m not saying this approach works for everyone, but it’s worth considering if you’re newly DXed. Don’t think of it as “giving up gluten forever”. Look at it as just one facet of the broader goal of being healthier, and try to draw on something, anything else, no matter how minor, you’ve done lately to improve your health. Let your past success inspire your next success.
Hey man, I really enjoyed reading this post. I look forward to coming back for some good info!
I am not a Celiac. However, my wife and I decided to go gluten free and have experienced a “re-birth” if you will. We feel so much more energized and full of life. My head hasn’t been this clear in a very, very long time. I have also shed a lot of unwanted body fat and just feel great.
The only bad part – when we decide we want to cheat and eat something containing gluten. I have noticed that after consuming a piece of pizza for example, my head will start to hurt and I feel extremely sluggish.
Do you believe in self-imposed celiacs?
Check out my site which is in very early stages-Glutenfreethin.com
Good advice, definitely a mental thing. I recently proven that I’m sensitive to gluten after doing an experiment where I ate pasta every day for a month after being mostly gluten-free for 7 months (I write about it on my blog). Mind boggling to think that my body may have been experiencing negative effects my entire life without even knowing!
Wow…I never really thought about it like that. For me, I found it out a few years back but then it was questioned because the Doctor apparently wasn’t a qualified specialist. So, I had to go through eating gluten again in order to have an accurate test done (6 weeks of glutinous foods *drools* hahahaha) and now I find myself cheating!!!! It’s evil!!! The strange part is that I couldn’t recall how I went gluten free in the first place. I was STRICTLY gluten free. There was something I did and I couldn’t remember. You reminded me of it when you said mentioned changing your mind from can’t to don’t. Thanks! Totally pumped again! π You’re the hero of the day! π
Hello,
I was recently diagnosed with Celiac, things are not too bad so far, I am Muslim and live in a Muslim country, so you know we have “Ramadan” a Whole month of fasting where you don’t eat or drink anything until sunset, to be honest it is helping me a lot thank god, I fond out I am Celiac just a week before the Month of “Ramadan” had started, so it came on time, I still dont know how it is going after Ramadan ends which i in 10 days, where everyone around you is eating awesome food, wish me luck π and thank you for the great website.
May peace be with you Celiacs, Salam Alaikom
Peace π
Hi GD, I am so happy that you tweeted me and thus I found my way here. I was just diagnosed yesterday, and after 40+ years of junkfood eating, I am now forced to eat better. This is going to be the hardest thing I have ever, ever done. I am going to need lots of help as I am totally overwhelmed with all the info. π
There is a silver lining…you will definitely be eating better. Just breathe, mourn the loss of your old lifestyle and embrace your new one. You got this!!
Thank you so much for the info, I thought I could keep cheating since I’m only “borderline celiac” but I’ve been suffering horrible brain fog and it has beaten me down. I need to just accept it and fix it. How long does it take for your body to digest and cleanse the gluten? Is there anything I can do to help besides not eating gluten?
GlutenDude-
So happy to find your site. I was diagnosed Feb 2, 2014 with Celiacs. I told my GI guy that I was probably a Celiac but after about a decade and two blood tests which said I was not they finally did the Endoscopy & Colonoscopy and made it to the small bowel and small intestine and low and behold…no villai. They were all completely blunted. Biopsy confirmed- Celiac. I know many of you feel very upset by this diagnosis- but, I cried because I finally knew what was wrong with me. Knowing what was wrong I could make the changes in my life to heal.
Only problem is…gluten is a cheap filler. I get sick just about every week and am further educated where the gluten may be hidden…like on those sheets of wax paper that seperate my frozen burgers to keep them from sticking. Like in the drywall compound so when i sand it i contaminate my whole home. Like in my dog food so when my beloved pet eats and then licks me I have it on my skin. Like in my bird feed so when I dump out the bag i inhale it.
But, some of the things I had been dealing with seemed to get much better…the rashes, breaking out in my mouth, hot flashes, breaking out in my hair, hours of bathroom time starting at 3:00 am, zombie sleeping where you wake up and don’t remember if you actually fell asleep, stomach pains, aching joints etc…all have gotten better.
Your site is like a fresh breath of clean air. Other people who actually share in this same experience. However, it’s been a long road for me and I am getting poisoned because gluten is hidden everywhere. Would you start a little section for our group. Kinda like a “Look where I found gluten” or whatever. So , we can share where we have in- advertantly gotten sick.
Thanks again for all you do!
Glad you found me!!
I was “diagnosed” with celiac via blood tests in August 2016. My doc put me on a trial gluten free diet for three months. After three months and two gluten bombings, my doc had me go back on a gluten diet for the purpose of a biopsy. I had the biopsy. The biopsy showed changes in my duodenum with minimal damage, so I haven’t officially been diagnosed with Celiac but I definitely am allergic/sensitive to it. I’m confused about non-diagnosis. Can you shed some light on this for me?
Thanks!!
You have an awesome site here!! My dietitian introduced me. π
Hi, GF Dude – and readers. I feel so happy to have found this blog; there is a LOT of great information here – and such realistic encouragement. THANK YOU!
I am celebrating one year GF this month, and I have definitely improved. It’s kind of a slow go, but I have not had one bit of gluten for a whole year (except for that one time when I was erroneously told that a certain potato chip was GF – I ate 5 chips and paid the price; after that, I read EVERY label). Maybe I’ll be more relaxed this year, but I really don’t mind checking…and I am COOKING again, which means I am certain of the ingredients and how they’ve been handled in my own kitchen. There are some wonderful recipes – and I’m ready to experiment (a little!) now too.
Thank you again. I am reviewing your entire site and finding great information and support. I appreciate it!
Great article! We would like you to check out our latest post https://bebreader.com/how-to-start-tasty-healthy-glutenfree-lifestyle/ and let us know what you think π
Good morning! My 12-year old daughter and I are beginning the road to GF. She has no firm diagnosis, other than constant belly pain. We’ve been seeing a nutritionalist who has advised us to follow FOD MAPS Diet, which includes going GF. We are trying to remove every food item that has the potential to cause belly pain (with the thought of adding them back in one at a time) but trying to get a 12-yr old to follow this path is extremely difficult. Any tips on how to help her see the light? I’m grateful for this site for someone who is a complete newb! Thanks!
Hi Peta. Before going gluten free, my suggestion would be to get her tested for celiac disease. It’s a simple blood test and if positive, an endoscopy. This way, you know what you are dealing with. Let me know if you have any questions.
GD