The following was written by Stacey Robbins, a reader with Hashimoto’s who made the lifestyle changes necessary to manage her health. She originally made this post about the autoimmune diet for the Facebook Hashimoto’s 411 group and turned it into a chapter for her book You’re Not Crazy and You’re Not Alone: Losing the Victim, Finding Your Sense of Humor and Learning to Love Yourself through Hashimoto’s. Stacey’s story not only illustrates the importance of your diet, but also how your attitude can affect your health:
This subject has been on my heart big time:
What a button-pushing topic for those of us with an autoimmune thing.
I remember in the beginning of being sick almost 20 years ago and then, the diagnoses a few years later, I was looking for a miracle.
“God, YOU do it!”
Then, I switched to, “Doctors, YOU (and your synthetic meds) do it!”
Next, I found the natural route and I was like, “Supplements, acupuncture, Reiki, Jin Shin, NAET, and on and on and on: YOU do it!”
And all the while messages were coming to me:
Change your lifestyle.
Change your relationships.
Change your rest.
Change your food.
Essentially: Stacey, YOU do it.
I think I wanted to do anything but change my food.
Being raised in Italian family with my mom as an amazing cook, my grandmother (who taught me how to make homemade pasta) was an amazing baker. My great aunts who made homemade sausages and grew the peppers that they’d roast over the fire, and my great-grandmothers who woke up at 3 a.m. to make bread.
This was my food experience.
Food was my life, my culture, my sense of belonging, my holidays, my pride, my liberty…my identity.
It was attached to my sense of fun when I went out with my friends because fun meant I could eat and drink any way I wanted.
And it was attached to my dreams of the future: When I go to Italy, I will eat my way through Amalfi and all the way down to Sicily.
How does one exactly go to Italy and NOT eat the pasta?
Is life even worth living if you can’t go to Italy and drink the wine and eat the bread???
It has been SUCH a process of surrender for me to redefine the “Life of My Dreams” as a life where I eat and drink whatever I want to “The Life of My Dreams” meaning that I felt good again.
Trust me, I really wanted a pill to make it better and if you told me that I could have slept long enough to heal myself of this thing, I would have gladly gone into hibernation.
So, why do I share this? Because I understand how it’s more than letting go of gluten and dairy and corn and eggs and soy and nightshades and grains. It’s about letting go of all the associations we make with food.
I did all those other things — relationships, rest, supplements, meds, lifestyles — they’re all valuable but none of them substitute for what the food changes provide.
Myalgias went away, weight was lost, depression lifted, clarity of thinking returned, internal order resurfaced — I had no idea that cake was making me bitchy and that raw veggies made me want to have sex again. Who knew?
So, please know, friends who are new to this great group or if you’ve been here a while, when you hear the beating drum from the long-timers with Hashi’s about making some food changes, it’s not because anyone’s trying to ruin your fun or create some cultic thinking — it’s because many of us have traveled the long journey of trying to change everything BUT food and we want to short cut you to one of the quickest ways you can start feeling better.
This is a caring place and a lot of wisdom flows here. I really want your journey to feeling better to be shorter than mine has been so, the encouragement and experience I want to offer is this: Face the food issues head-on.
“The food you eat can either be the safest and most powerful form of medicine or the slowest form of poison.” (Unknown)
Love and Health to you,
Thank you Stacey. I guess that’s what I’ve been doing. Trying to change everything but the food. Food is my addiction, my hobby. Going out to dinner has ALWAYS been one of my favorite things to do. I love all foods. Which is why it is SOO hard to think of not being able to have it. 🙁 I truly feel like I’ve lost my best friend and I’ve only been GF for 5 days!!! I really MISS my foods. Yes, just in these 5 days I have felt amazingly better and even lost 4 pounds, but it is soo hard to say no to the food my husband cooks for him and our son, like the meatloaf or fried chicken. But I did it this week. I went to bed early the other night because I was hungry wanting some cake that they were eating and I knew I was going to give in if I kept sitting there. I keep trying to convince myself that it’s worth it. I am so sick and tired of being sick and tired and have tried everything under the sun, except changing my diet. This must be the only way. I hope I can be strong like you and just accept that this has to be the new way of life for me or I will continue to not have a life! Thanks again for sharing!
Love this, Stacey! I grew up in a family where bread was a staple. In fact, their table etiquette (where you put your hands when seated) is built around having a fork in one hand and a piece of bread in the other.
No one was allowed to stay at relatives’ tables without eating. “Eat!, Eat!” was a constant mantra. It was whole, natural, and otherwise healthy food. We ate and hung around the table for hours, picking at pastries, fruits, candies, leftover scraps on the serving plates.
Luckily we didn’t get fat, but for me it has been a hard-fought battle to re-imagine the way I see food, and what foods. I am also lucky in that I’ve been tested, and the only problem I have is with gluten and tapioca. So while I’m not as limited as many are, my culture values bread and pastry so highly that it has been a VERY difficult thing to completely stay away. I also tested high for the “gluten addict” marker so temptations are doubly hard for me to resist. But I do, because my health demands it.
It’s been almost 3 months, and I eat very well. In fact, I eat many more calories now and continue to lose weight because I’m eating the *right* foods for my disease. For those who worry about “giving up” certain foods, once you’re over the habit and are feeling better, you will (like me) begin to see food very differently. And having that liberation feels just as good as the physical proof that you are doing the right thing for your body!
hooray for a good run! I feel the same way about NYRR races – I am so sick of the same 10K course, in particular. You didn’t miss much at the Mini! I haven’t done a real destination race but am dying to – Big Sur, London, Eugene, Ho82oulu&#nl30; I could go on
How did you evaluate which food is good for you and which ones are not right? My wife has Hashimoto’s and we are struggling to figure out the right diet.
Hi Stacey and Allesa,
Thanks for sharing!
I can only imaging what lies ahead for me and my not so understanding partner…Bread, gluten-cake etc. is one thing but not even gluten-free rice cake or sushi? I have also grown up in a bread/ cake adoring country in Europe…where we still have to travel to. Imagine remote area and people who have no clue of what even gluten is…It becomes pure survival I guess 🙂 On the serious side: Sometimes one does not know what to eat anymore. It must be especially hard for animal lovers and vegans.
Also if one is already underweight does it not create new problems? I’m scared…
How can we determine what to eat and not eat? Eggs bad??
Like several other people on this site and dozens I’ve looked at over a few months, I just want to know how to get tested properly to know what my body is sensitive to. Then, I want to know what to eat and when to eat it. And what supplements to take. There is finally sooooo much info on the thyroid situation that it becomes more difficult every day to figure out what and when to eat! I also have not had adrenals checked or any of that; TSH test is in normal range, but I have almost EVERY symptom, and have had for years. And my doctor retired 2 months ago so I really need to find some answers somehow. Can you email me exactly what tests I should get done? And any sort of protocol for cutting out the trigger foods? I’ve been “mostly” GF for four years, and recently limited dairy to organic butter and cream for my coffee. Is it true I have to give up coffee? Over these past five years I lost 60 pounds by completely changing my diet, but now my hair is like straw, falling out and coming out when I shampoo; nails are a mess, fungus on fingernails and toes, cold cold cold, puffy eyes… I sound like quite a mess but people still call me beautiful at 73!
Any help you can offer along these lines will be answer to prayer!
Thanks to you, for all you do!
Rev. Allorrah Be
Circles of Light Ministries
Allorah, you and the others here probably won’t get direct answers to comments on this post, but try joining the Facebook group Hashimoto’s 411, which supports Dr. K’s protocol and has many thousands of helpful members. You’ll get tons of information and help there!
I would also like to know exactly what test would be helpful for finding food allergies. I am going to the Dr. on Monday as I just saw that my ANA Panel is really high. I was trying to be off sugar and flour for the past week, but said “Screw It” this morning and ate Lucky Charms with milk. I feel panicky and like I can’t quite breathe.
Don’t know if it’s from either item, or just a panic attack (which I don’t normally have) because I KNOW I am going to have to give up some of my best FRIENDS in the food circle…All the things that have given my comfort, yet have been obviously making me sick all these years.
Yes, yes…I am co-dependent on food. It is my drug of choice. It is there for me in the happy and the sad times. It is there without question, silently killing me.
I will continue to plug on, and hope that I can surrender soon.
I got my asymptomatic Hashi diagnosis July 30 and went IAP on Aug. 1. I have never had any issues with food but after cramming as much research ( including Dr. K’s work) into that time frame as was possible, I knew there was no choice but to embrace this new lifestyle. I have joined a support group with other Autoimmune sufferers and it is a very sobering experience. They all have several conditions they are each dealing with. After hearing about their issues, I am absolutely convicted about staying the course and doing EVERYTHING within my power to get my antibodies in check.
Like many of you I was very involved with cooking, dining out, wine tasting…Now, I am embracing the idea of culinary alchemy, turning one food into another ( cauliflower into rice, zucchini into noodles…) and I absolutely love the challenge. My husband digs the new dishes and has no complaints about what is in the fridge these days.
Try looking the abundance you have available to you and not the handful of things that you shouldn’t eat. There is so much to enjoy.
I can totally relate to what you are saying. I have made a lot of these changes already and I am on the road to recovery after being diagnosed with Hashimoto’s and Celiac Disease. My grocery bill has probably tripled but I know it will all be worth it soon. I have been Paleo for a while and soon I am going to try to eliminate the nuts, nightshades & eggs to try to see if I get better results with an autoimmune diet. Thanks for the encouragement. It’s nice to know there are others that are fighting the same daily battles out there.
I was just diagnosed with Hashimoto on Dec. 31st, this is all so new and it is totally confusing.. I know the diet change will be good for me and I am not worried about it yet but of course I haven’t started yet. I will be meeting with my professional person on Thursday and she is supposed to help me learn what to eat and what not to eat so it sounds like my life will be changing.
After all these years I have finally been diagnosed and now know that there is hope for me after all. Its hard when you constantly hit a wall… after wall after wall..
Wish me luck…
I was just diagnosed with Hashimotos thyroids.
Can people recommend a good book or two to read (I know nothing about the disease except that is lifelong and devastating and can lead to other diseases). I’m, well, afraid.
I’m on a med, but feel terrible and am soon tired that I can barely move. I need to educate myself and quickly.
Marsha – have you read Dr. Kharrazian’s thyroid book yet? Here’s a link to his page on it – on that page there is great info about the book and ways to find it if you want to read it. It proved very helpful in my healing from debilitating Hashimoto’s symptoms.
Great article. its practically not easy going through all this. Keep up the strength and good work.
Anyone tell me if coconut flour is ok on autoimmune diet? By Dr Kharrazians page on diet it lists all coconut products except coconut flour.
I am currently on the gaps and would rather not introduce lots of almond flour so wondering if coconut is ok? I know it has high fibre content so maybe problematic in dysbiosis etc???
Wow! What clarity! I mean, your article/letter to all of us who suffer from this was something I had been running from since the age of 28. My experience regarding food is a bit different. My family was poor. We DID eat VERY plain food but it wasn’t good for you kind of food. There was a lot of pasta, peanut butter, etc etc. In retrospect, it was a pretty crappy diet. I didn’t get to eat a lot of junk food though because we were very poor. I’m the oldest of 8 children so, food was mostly sparse and not very healthy. When I left home to marry my first husband, I had him stop by the store after the wedding…I bought 3 candy bars and devoured each one of them! I eat because I feel deprived otherwise. I know I need to get over this…not so easy though. I’ve tried all of the things you stated above, save the one that works. It feels awful not being able to have a boiled egg (I LOVE THEM…I live on them), or a piece of chocolate. I love butter…just plain butter in my coffee…no more of that. The diet seems restrictive but I know…I really KNOW that it works because I have heard many speak volumes about it. My body is ready…but my mind is not. What does one do for a salty snack or a snack where one doesn’t feel deprived of sugar? Fruit? I love grapes but I didn’t see them on the list here. And how much fruit can one have? I think, like you were once…I’m bitter about having Hashimoto’s but I’m more bitter about the fact that I need to change my diet in order to feel normal again. But how can I feel truly normal if I can’t eat like normal people without suffering from weight loss issues, bad skin, and hair loss? I suppose, I’m just going to have to bit the bullet. If I knew that weight loss would be something I could see right away, I’d be more excited about doing it. Sigh…what to do…Thank you for this letter…not only does it help me feel as if I’m not alone, it has made my day. I’m going to think long and hard today and make some changes. Do I jump right in or do I just stick my toe in the water? I suppose the only way to be submerged is to dive in! One can’t swim with just a toe in the water, right? Thanks again! God Bless You!