My Story: Recovery from Gluten-intolerance, PCOS and Autoimmune Thyroid Disease

A few weeks ago, I shared my husband’s story of recovery from mental illness and chronic pain through real food and promised to share more stories of recovery. Soon, I’ll share the story of my son who, raised on real and traditional foods, illustrates that there is hope for true recovery in the next generation.  If you would like to share your story of recovery through real food, please contact me.

My Story

I was born in a small community in Oklahoma to a very young mother, and in the late seventies the world was anything but breastfeeding-friendly and, like most babies of my generation, I was raised on formula.  Colicky and intolerant of milk, I was raised on specifically on soy formula – a food we now understand to be riddled with antinutrients like enzyme inhibitors, goitrogens, endocrine-disruption xenoestrogens and mineral-blocking phytate.  We now know that soy formula is linked to increased risk of thyroid disease, depressed immune response, diabetes and hormonal disruption in adulthood, but, at that time, no one fully understood or recognized these risks.  And as a mother, you do the best you can with what circumstances allow.

Later, I weaned to mayonnaise and white bread sandwiches, m & ms and breakfast cereals.  My saving grace, nutritionally speaking, was a love of liverwurst and anchovies both of which I consumed with abandon until grade school when I learned from my peers that liverwurst and anchovies were “gross.”  By then, the low-fat craze of the eighties and nineties was in full swing and my household was no exception: margarine replaced butter; vegetable oil and shortening replaced traditional cooking fats; chicken came without the skin and blue-tinged skim milk lurked in plastic jugs in the fridge.  We didn’t consume sugar, except on rare occasions, though plenty of artificial sweeteners wormed their way into the home – mostly as Crystal Light.  I remember craving fat so desperately, that, on the rare occasions we had real butter in the house, I’d steal away in the middle of the night and eat it by the spoonful under the cover of a darkness lit only by the pale and lonely refrigerator light.

By middle and high school, I, like most of my eco-conscious and animal-loving peers, toyed with vegetarianism.  I didn’t like what I read about CAFOs, but didn’t understand that there was an alternative.  Mostly, I was uninformed and believed whole-heartedly what I learned in school: that fruit, vegetables and whole grains are the keys to health; that plant-based diets are the only humane and healthy choice, and that the more soy I consumed, the better off I’d be.  It wasn’t too long before I began to get sick.

Tired All the Time, Gaining Weight with No Cause

In college, even though money was tight for me just as it is for all college students, I did my best to eat well – even if that meant spiking my 25-cent Ramen noodles with fresh bok choy and kimchi.  Mostly, however, my diet is best described as whole foods vegetarian with occasional dalliances with fish or chicken when I began to feel nutritionally deprived and the cravings resurfaced.  I should have listened to my body.

By my junior year, I felt sick.  I was gaining weight, despite eating a low-fat diet with plenty of whole grains.  I felt tired all the time, from the moment I woke to when I fell asleep.  Worried, I visited the campus doctors and nurse practicioners who took bloodwork, found nothing abnormal and simply concluded that I was “under stress.”  Only, I didn’t feel particularly stressed out: my studies were easy, I had a loving boyfriend and I was plodding happily along.

Eventually, I just stopped going to the doctor.  Tired of being told time and time again that my fatigue, my weight gain and general malaise was all in my head, I gave up and surrendered to the idea that I’d feel like that for the rest of my life.

The Diagnoses: Gluten Intolerance, Graves Disease, PCOS

A few months after I finished school and took a job, those symptoms I’d give up on started recurring with a ferocity I hadn’t expected.  I tried dieting to lose that extra weight that had mysteriously crept on in the final years of school and I dutifully restricted calories and fat.  I worked out regularly at a local gym.  It didn’t matter.  Now, I wasn’t just tired; I was exhausted.  I wasn’t just gaining a little weight; I gained twenty-five pounds in three months.

At my next wellness visit, my doctor cautioned me not to gain weight so rapidly and urged me to eat low-fat foods, whole grains and to exercise more.  I broke down in his examination room, paper gown and all.  But I do eat right, I implored. I exercise. His eyebrow raised and he suggested that I might suffer from polycystic ovarian syndrome – a condition of infertility affecting approximately 10% of women.  Some blood tests and an ultrasound later and his suspicion was confirmed.  Given the state of my ovaries during the ultrasound, he suggested it would be nearly impossible for me to conceive.

Two years after that initial diagnosis, I still didn’t feel optimally well.  I continued to gain weight, but chalked it up to PCOS.  I was still exhausted, but couldn’t sleep.  I felt jittery nearly all the time, even suffering from tremors.  My stomach was constantly upset, and my digestive health left a lot to be desired.  Bloodwork done at a stray community health fair led to an urgent phone call: TSH (a poor indicator of thyroid health) came back almost undetectable.  They suspected hyperthyroidism, which was later confirmed through full thyroid panels including antithyroid antibodies.  I had autoimmune thyroid disease and was severely ill.

Given the choice between antithyroid pharmaceuticals and ablation of my thyroid by radioactive iodine, I chose pharmaceuticals with the warning from my physician that “it almost always fails.”  She explained that I should give up hope of healing, undergo ablation by radioactive iodine and commit myself to taking medication for the rest of my life.  That wasn’t good enough for me.

Several months under the care of an endocrinologist, my thyroid seemed to recover with hormone levels hovering at normal; yet, I was still sick.   In exasperation, my endocrinologist ran a series of antibody blood tests which resulted in a diagnosis of celiac disease.  At 25, I had been diagnosed with polycystic ovarian syndrome, Graves disease and celiac disease. (Of course, now, blood work alone wouldn’t be used for a celiac diagnosis which usually also involves a biopsy – but that’s the diagnosis from my endocrinologist.)

Recovery through Real Food

After the diagnosis of celiac disease, I had direction.  More than the task of taking pills – metformin and yasmin to combat PCOS, tapazole to combat Graves disease – I felt a new sense of control.  There was a way to heal myself through food.  My husband and I dutifully cleaned our cupboards removing any hint of a processed food and we adhered to a gluten-free, whole foods diet.  We also began to better incorporate oily fish into our diet: wild-caught salmon in particular.

Within five months on a whole-foods, gluten-free diet, I was pregnant.  I went to my primary care physician for confirmation only to have her shrug her shoulders and look at me worriedly.  She said, “With your conditions, there’s no way you can be pregnant; it’s more likely there’s something seriously wrong with you.”  Though  tests confirmed elevated levels of hCG in my blood, she refused to confirm the pregnancy until I undertook an ultrasound – believing, instead, that pregnancy was impossible and I was simply very, very ill.  It was two very hard days of worry before they could schedule an ultrasound.  The doctor was wrong, and, sure enough, I was pregnant.  During my pregnancy, I was able to give up the pharmaceuticals and maintain thyroid health.

During my pregnancy, I craved good foods: wild-caught salmon, cottage cheese, butter.  So I steered away from that veg*n diet I toyed with for years and began eating real foods – if only because that’s what my body knew it needed.  After the birth of our very healthy boy, we returned to a gluten-free, whole foods vegetarian diet, but not for long. You see, I eventually found the Nourishing Traditions in an online book swap which led me to the Weston A Price Foundation.

We began adhering to the dietary principles of the Weston A Price Foundation and our health blossomed in a way I never knew possible.  I felt revitalized.  I had energy.  I felt healthy.  Eventually, and with care, I focused on healing my gut in an effort to recover from gluten intolerance just as my naturopath suggested I might.  I consumed bone broths, sauerkrauts and water kefir.  After a time, I was able to tolerate a small amount of properly prepared wheat and spelt: true sourdoughs and sprouted grain flours.  It was a diet very similar to the one outlined in Reversing Food Allergies, an online course offered by a friend of mine who has also successfully healed her sensitivity to food through a strategic approach to that focuses on digestive health.

A Continual Journey

Healing doesn’t take place overnight, but our bodies do have the ability to heal.  They do have the ability to recover from disease, from food sensitivities and from infertility.

For me, it’s a constant struggle.  I still suffer from symptoms of PCOS like overweight, though I menstruate regularly now when I never did before.  I still keep an eye on the health of my thyroid with regular tests and mindfulness toward symptoms (they haven’t recurred and tests have always returned normal).  I’m careful, and I choose to honor my body through real foods, traditionally prepared.

As for food sensitivities, I’ve recently noticed a recurrence in symptoms of celiac disease which has me concerned.  For the last several months we readopted a completely gluten-free diet.  And while I did my best to heal with the knowledge I had, I didn’t follow a strict protocol and omitted key steps necessary for recovery: an introductory diet, therapeutic grade probiotics and strategic detoxing which is why I plan to follow the GAPS diet using the online class Reversing Food Allergies as my guide.

As a culture, we expect immediate results and when we don’t get them, we throw up our hands in surrender.  For me, I understand that my road to recovery is a continual journey of learning.  After all, from the soy formula of my infancy, the low-fat pseudofoods of my childhood to the vegetarianism of my teens and early twenties, I spent twenty-seven years eating wrong. The five years I’ve spent adhering to traditional foods has seen miraculous improvements in my health, but I don’t expect five years of good to undo twenty-seven years of wrong.  It’s a slow process, but one that does offer recovery.

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What people are saying

  1. Jessi Rae says

    My story is starting to sound a little like yours. My husband and I are unable to conceive, and I was very recently diagnosed with Grave’s disease. I’m on tapizole and really hoping to be able to “cure” my Graves through diet (looking at the GAPS diet specifically), and be able to conceive sometime next year. I hope that I can share a happy story with you in a year. Please feel free to contact me if you have any advice! You’re already an encouragement.

  2. claire says

    This was great to read. I have PCOS, and have had no luck after 6months of Clomid. Would you mid sharing your diet? What would a whole foods, gluten free diet entail? If you could point me even in the right direction it’d be much appreciated! x

  3. Marie says

    This sounds similar to my background. I grew up with a mother who was overweight and always working. Our house was filled with low calorie food and the artificial sweeteners. I remember my mother making peach yogurt for dinner and being starving after that. There was nothing else but yogurt soup and for a growing teenager one needs more.
    I know thought she was trying to loose weight and had now concept of the true way to eat.

    In college I went through the vegetarian stage and even tried veganism. However I would get tired a lot and sick quite often. It wasn’t until I met my husband who is from France that I learned how to eat a balanced meal. I currently suffer from thyroid problems and pcos. I’ve been taking levoxyl and my doctor wants to put me on metmorfin for my irregular periods. However I am still not convinced that taking three pills a day will make me healthier.

    I appreciate this article because it shows that one can take control over their lives through listening to their bodies and eating right.

  4. Charlene says

    I loved reading this. I have PCOS and I took the liberty to base some affirmations for myself on what you wrote;
    I can heal myself through food
    I choose to honor my body by eating real food
    My road to recovery is a continual journey of learning
    Thank you for being an inspiration!

  5. says

    Hello Jenny,

    It is inspiring to read stories like yours. I have been eating a WAPF diet for a few years now, but was recently diagnosed with gluten intolerance as well as cross-reactive intolerances to oats, dairy, egg, and tapioca. I just found out I am pregnant and of course I want to eat the WAPF diet for pregnancy. However, as you know, that includes LOTS of eggs and dairy. I was wondering if you are aware of any resources out there for helping pregnant women achieve the necessary nutrients while still avoiding eggs and dairy? So far I have been making homemade soaked nut milks, and supplementing with spirulina, flax oil, chia, bovine gelatin, dessicated liver, and FCLO. Is there anything else you would recommend, or another resource you could point me to?

    Thanks so much!

    Angie

  6. jenny says

    I was also diagnosed with graves disease and took tapazol. I have been “in recovery” for over a decade now. I also had HORRIBLE allergies my whole life with multiple annual ear infections age 1-18 and then multiple annual sinus infections age 19-36. At age 36, the man I eventually married suggested I give up wheat and it was a miracle cure! Subsequently I have given up all gluten and have never been healthier!

  7. Regina says

    I am gluten intolerant and I am also allergic to whey and caesin. I am starting the gaps diet and would like to know if I would ever be able to have milk, cheeze, butter, ice cream and milk ever again. I lost too much weight.

    • Heather Lewis says

      You can get Gluten free, Diary free ice cream at Wagmens and Giant food stores, you can get Gluten free and Casine free ice crem, cookies, cakes, mufflin, pancakes, you name it, My Throide Antibodies dropped almost in half, being Gluten and Casine free for only 3 months, Soon all the Antibodies wil be gone, KEEP thins in mind if you want to get preg, i had Two beutiful children, at the time I did not know I was Gluten Sensitive, even tested Neg, but I was, and both my children are Autisic and got Sensivities to gluten, casine, soy, eggs, corn, ext., so PLEASE make sure all of your Anitboides are at normal levels before having a child. I had two misscarriages last year and was told I have Hashimotos, High ANA antibodies, High Throide antibodies, and Low C3C (immune disease), I can tell you the diet WORKS, I also quite caffine as well, as soon as my numbers as normal we are going to try for another baby.

  8. Leah says

    I love reading these stories. I am 29 and first got psoriasis, an autoimmune disorder, around the age of 23. Then I was diagnosed by my OBGYN with PCOS about 3 years ago. When I went to the PCOS specialist, he said I didn’t have it, mainly because I wasn’t overweight. My mother has a thyroid issue so… Then the arthritis started. It is beyond awful. It’s embarrassing to tell people too, because they usually say, “oh, I thought you get that when you’re old?” Now my feet have been swollen for almost two months now. I’m thinking Rheumatoid Arthritis. The first time I had swelling, I thought it was gout, since it was a night after drinking tequila for my friends wedding party. Needless to say, I’m a mess, and now I have chest pains. My internet research has turned up a lot of stories on autoimmune disease and taking too many antibiotics, which I definitely have. That and my diet and not enough exercise have turned me into a waling corpse. I definitely need a serious detox and total diet change. Also, I have read extensively on systemic candida infections, which many people link to autoimmune disease, cancer, and other ailments. Something to think about. The saddest thing of all is the medical com minty wants to shove unnatural pharmaceuticals down our throats, when they should be telling us to change our diet. Honestly, I think they have done me more harm than good.

    • Danielle says

      Have you ever tried working with a Naturopathic Doctor? I was diagnosed with PCOS with gluten & dairy intolerance and have been working with a N.D. to getting my PCOS in order. For the first time in 10 years, I feel a world of a difference, keeping a healthy weight, having energy, more consistently emotionally stable and not crashing with low energy, sleeping better, more regularity, and much more! I was on birth control for 5 years, but felt it was making things worst than better. After getting off it, it has been hell and back trying to figure out what was going on with my body, mind, and spirit; but then, working with my diet, exercising daily, and focusing on healing my gut has made a complete shift in my state of mind.

    • Sandra Crawford says

      Leah
      Just because you are not over weight does not mean you can’t have PCOS. I was disposed with PCOS when I was 17 and I am now 51 and have never been extremely over weight. In fact, before I had children (through IVF) I was quite thin.

      Be persistent.

      Sandra

  9. Erica says

    Did I read that right? Did you say you were able to get off ALL pharmeceuticals while you were pregnant and your thyroid was fine??

  10. Elizabeth says

    Loved reading your story. Our upbringing was identical…with the exception of sugar (fed in abundance). I was chuckling through the liverwurst comment :). I also did low-fat, had a ramen noodle diet in my early twenties, and was a vegetarian/vegan on and off. I have been suffering from food sensitivities for eight years now. I could go on and on about the number of conventional doctor’s, naturopath’s, chiropractors, acupuncturist’s, I have seen over this timeframe, but it is basically the same old story. Treatment plans that end in thousands of dollars. The best alternative I have found is to follow a whole food diet rich in fats and low on grains. No gluten, dairy, or soy. Grass fed beef, pastured eggs, free-range chicken and lots of veggies (local if possible). I still feel somewhat deprived given my upbringing, however as the years go by it gets easier. Bottom-line is, I have a leaky-gut that I believe is stress-induced and until I can manage my stress response, I will not be able to fully heal. Thanks again for your story….Best wishes to you!!

  11. Shan says

    Thank you for this article….

    I feel like I have been diagnosing myself for years. I have PCOS now and was diagnosed about a year ago. My mom and I continually asses my symptoms. A few weeks ago, we requested a blood test for celiacs and it came up positive. I have an appointment tomorrow to plan a biopsy. Your story and recipes are an inspiration. Thank you for sharing your life and being able to connect with people like me who thought they were crazy.

  12. says

    What an uplifting story. My daughter can identify with much of your story. I have just sent her the link. Thank you. Isn’t it sad that we have to do this journey on our own, with no medical support and negativity all around. She , my daughter, suffered lots because nobody was prepared to listen. Even endocronologists are not much chop. They are still heavily reliant on drugs! Sites like yours serve to let the rest of the world know that fat people are NOT lazy and that food can heal. Well done.

    Lovely photo by the way!

  13. Lauren says

    Jenny — I am currently deep in the battle to figure out what is wrong with me and how to treat it. I want to believe that all my problems are connected so on a whim I googled “PCOS, thyroid, intolerance” to see what came up and this was the top hit. I can’t tell you how excited I am to know that someone else has all these problems and has made strides in healing them. I wanted to ask — knowing what you know now, how would you recommend being tested to know for certain whether I have gluten and/or dairy allergies? Is there a conclusive way to know? I’m willing to eliminate, but I would like to know I actually am intolerant before I commit to the time and money. Thank you so much for posting this! You’ve given me hope!

  14. says

    Hi! Thank you so much for sharing your story! I was recently diagnosed with PCOS, and I have been Gluten Intolerant, and have had Hypothyroidism for years. The doctors at first made it seem as if it is purely psychological and diagnosed me with Bi Polar Disorder. Also they didn’t bother checking at first for PCOS and made it seem as if I wasn’t eating right or exercising when I gained a ton of weight( I ended up going from a size 10 to a size 18 in a number of years). I was born in the 80s and yes, tons of margarine and sweeteners. I am also lactose intolerant to a certain degree. I have found I can eat most cheeses. Though I am taking some medicine for both PCOS(Metformin) though I stopped this week due to stabbing pains in my abdomen and dizziness), and for Bi Polar( Depakote and Oxcarbazamine), this is mainly to control my seizures. I would ultimately like to live without medicine. I am thinking about booking an appointment with a neurologist, because I am pretty sure that it is connected to my head trauma a number of years ago on my left temporal lobe. Sorry, I know this is a lot to process…please anyone help me if this resonates somehow. You are already an inspiration, and I am glad I discovered your blog today!

    Warm Regards, Laura

  15. Sandra Crawford says

    I have exactly the same diagnosis as you. I was dianosed with PCOS when I was 17 and and underactive thyroyd when i was 25. I have always had stomach trouble which the doctotors ignored. At 40 I self diagnosed myself with gluten intolerance. I am now 51 and since going off the pill 18 months ago have ad semi regulat periods for the first time in m life. I have been Gluten Free for 11 years and we try to maintain a healthy diet. Your story is an inspiration and I will be looking into changing my families diet further to improve my and their health.

  16. Tricia says

    Hi Jenny, I am also from and still live in Oklahoma. I started eating gluten free about 5 months ago. I wasn’t medically diagnosed with celiac or gluten intolerance with a test but my brother is a doctor and told me he thought that is what my migraines and digestion issues are due to. So I thought after a few months that maybe I could eat some gluten every once in a while or is it in my head or is this really making me sick? So…I at TWO doughnuts! I was so exhausted and had migraines like crazy for almost 2 weeks! I’ve been gluten free again since then (about 2 months). But I became extremely fatigued and was having migraines almost daily for about a month. After blood work coming back normal, I’m wondering if it was wheat harvest!? Did you/do you have a hard time during wheat harvest? I’m not sure if that was what made me so sick and if so I don’t know what to do beside move and unless I move into town rather than in the middle of the wheat field, I don’t know if I’m going to ever move from family and friends. So I’m hoping there’s something I can do to get me thorough the summers here in Oklahoma.
    Thank you!
    Tricia

  17. Krissi says

    Thank you for this post…I suffer from PCOS and Celiac Disease, I feel like I am alone in my fight. Actually right now I am laying in bed in a fetal position because I allowed myself to eat nasty processed gluten filled crap and I feel like death. Shortly after my diagnosis my Husband lost his career and I lost the insurance :/ I do not know where to start with healing myself, the weight gain from PCOS has caused me to be depressed and the restrictive diet has caused me to become bitter…I do not want to be this person, I want to heal! I am going to check out the GAPS diet now…I am tired of feeling out of control and angry all the time, just want my life back. I again thank you for your post, our lives could almost be mirror images (even those nasty mayo and white bread sandwiches – can it believe I ever ate such a thing! Lol).

  18. Darlene says

    Hi, I have been reading everything I can about gluten-intolerance, PCOS and Autoimmune Thyroid Disease.
    I have PCOS and I have been dealing with its symptoms for years. I also have Hypothyroidism. I feel they are linked together somehow. I have just started going gluten-free for the last two days and I am going to see if I feel any different later on. I am tired of feeling tired. I have taken thyroid pills for years but I really don’t feel any different. I still feel fatigued and achey. I hoped for this tired feeling to be lifted off of me but no luck. As far as the PCOS, it is possible to have children so don’t give up. I had two children. I had surgery on my ovaries and the doctor performed a wedge-resection and removed 1/4th off of each ovary. Between taking the thyroid pills and the surgery on my ovaries, I started ovulating and had two children five years apart so don’t give up. The doctor said the surgery would “losen” the ovaries up and it did. I have an appointment on Monday anyway with my doctor and I am going to ask to be tested for thyroid antibodies to see if I have Hashimoto”s Thyroidiitis. Maybe this autoimmune disorder is attacking my thyroid when it is trying to attack the gluten. I read that the molecule in gluten is so simular to the thyroid gland that the anti-bodies are attacking both. I am going gluten-free to see if it helps. It couldn’t hurt. If I feel a difference later, I will post back. I never hear about anyone’s results and I would love to hear it myself.

  19. Kimmy says

    I am just starting this journey and I am so excited to read the results that you have had. It made me giggle to hear that you got pregnant so quickly. Thank you for sharing your story and giving hope to woman in similar situations.

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