The purpose of this post is to help others draw a possible connection between food allergies and autoimmune diseases. After being diagnosed with autoimmune thyroid disease (Hashimoto’s), I researched possible causes and food allergies kept coming up, gluten in particular. I searched and searched for a solid causal link between food allergies and hypothyroidism but all the research studies were correlative and no one could relate one personal story (that I found) of a definitive connection. The proof that I was looking for was a substantial lowering of the thyroid antibodies, thyroid peroxidase and anti-thyroglobulin, in response to eliminating certain foods from the diet. So, I performed my own little study…on myself.
I first eliminated gluten, then milk, then all grains. I read the book on the specific carbohydrate diet by Elaine Gottschall, designed to help people with Crohn’s disease and gave that a try (minus the yogurt). After reading a bunch of articles by Loren Cordain, I purchased the “Paleo Diet for Athletes” (I run) and decided that made a bit more sense for me in the long term. The paleo diet basically consists of meat, vegetables, fruit, nuts and eggs. Mind you, this is without knowing what the hell was really wrong with me. I didn’t have a lot of the severe GI problems that others complain about but there were signs that something was wrong besides developing Hashimoto’s disease. For one, I could never wear women’s jeans. I’m petite, (5’3”, 108 lbs) and have always been athletic, but if my jeans fit well around my legs, they were always too tight around my waist – so I started wearing boys jeans which I figured fit with my tom-boy persona anyway. What I didn’t realize was that I was bloated – all the time, for as long as I could remember. Not knowing this made it difficult to distinguish exactly what foods were making me ‘sick’.
After 6 months on the paleo diet, without consuming grains, dairy, legumes, soy, starch and refined sugar, both of my thyroid antibodies went down 60% and my Thyroid Stimulating Hormone (TSH) levels dropped to the lowest level (2.06) they had ever been in the 2 years that I had been getting blood tests. I had also just tested ‘positive’ for rheumatism 6 months earlier and after the diet changes, the test returned to ‘negative’. I also deflated – the bloating subsided and I developed a very lean, muscular build. I had way more energy, did not get sick once and my running even improved (injury free).
These results gave me a great deal of confidence and convinced me that I was, indeed, healing. I proudly reported these results to my friends and family who by now thought I was slightly insane for making the drastic diet changes that I did. My elation didn’t last though. On the subsequent blood test, after I returned from a 2.5 week long motorcycle trip, my levels went back up slightly despite sticking to my diet. I was once again bloated up like a pig. I presented my situation to a gastroenterologist and requested some tests, but he was skeptical that any of my symptoms were related to food. After everything indicated that I was in perfect health, I started to think I was going crazy. At the suggestion of a friend, I saw a clinical nutritionist (and fucking brilliant man), Dr. Robert Pastore, who requested a panel of both IGE and IgG4 blood tests to identify food allergies. Having an IGG/IGA panel done by Quest Diagnostics a year earlier and everything coming up negative I was skeptical that it would work, but he assured me that this lab (Metametrix) was different.
It took 6 weeks to get an appointment for the blood test with Dr. Pastore, so I decided to flood my body with any possible allergen to give the blood tests the best chance of working. Pizza, ice cream, bagels, soy burgers, bean burritos and lots of chocolate cake – I enjoyed eating it but started to feel horrible after about a week. I developed keratosis, hot flashes at night (I’m 39), canker sores all over my mouth, gas all the time, acne and had fits of depression. I had developed Raynaud’s condition about a year before this, but it got worse over the course of the month of binging – it spread in my hands and started to show up in my feet. Still, I forced that last bagel down my throat the morning of the blood test. I was thrilled when it was over.
For the next 3 weeks as I awaited my test results I went back on the paleo diet, and started to experience severe withdrawal symptoms – cravings, brain fog, mood swings from hell and so much bloating. Upon walking into Dr. Pastore’s office for my results he said, “Well, the good news is that you are going to feel a whole lot better after this…” then he hands me blood test results that I could not believe. It turns out I’m allergic to practically everything – wheat, soy, casein (milk), all grains except corn, eggs, coffee, almonds, beans, mustard…even ginger…and the list goes on. The paleo diet was the way to go for me, but I never excluded everything. Especially on the road, I was pounding eggs, coffee and slathering mustard on everything! At home I was having herbal teas laced with ginger all the time. I occasionally splurged with gluten-free cookies made with rice flour and other grains – all of which I’m allergic to. I was never completely allergen-free.
That brings me to the present – as of today I am completely allergen free for 8 days. I’m experiencing severe withdrawal symptoms now, like I never thought possible. To the list above, add diarrhea every morning and occasionally at night and during the day. As my poor husband will attest, ‘mood swings’ is beyond an understatement – I’m an absolute bitch. I am lethargic. I feel like there are lead weights all over my body. I can actually feel the gravitational pull of the earth sucking me into comfortable furniture and keeping me there despite thirst, an exploding bladder and the whines of a play-obsessed puppy. When I succumb to guilt and/or pain and do get up, I get a head rush, my body feels weak and I often forget why I got up. My memory is very short, concentration is fleeting and I feel like I am just taking up space much of the time. Naps do not help. I am sensitive to light on some mornings and am nauseous often. Oh, did I mention that I am trying to finish my PhD?
So, have I proven that there is a connection between food allergies and autoimmune thyroid disease? Perhaps not, but I am convinced – so is my doctor (Robert Pastore). I will likely get my TSH and antibody levels checked once more in about 2 years when my gut is completely healed, but it is no longer a concern of mine. I read extensively on autoimmune diseases and food allergies for almost a year and am now convinced that food was the cause of my medical problems. Based on all I read, I also believe that food allergies are pervasive, perhaps reaching epidemic proportions, and are likely responsible for many other ‘ailments’ plaguing our society including obesity, depression, some types of autism and even some mental disorders. Just like I eventually developed multiple autoimmune diseases (Hashimoto’s, rheumatism, and Raynaud’s condition), many people who have one autoimmune disease will likely develop others if they don’t eliminate the culprit from their diet or from their environment. Also, certain autoimmune diseases like those affecting the thyroid or joints are not hereditary as some doctors would like to have you believe. Instead, it is the propensity for an autoimmune response to manifest in the damage to a particular tissue or organ (like the thyroid) that is hereditary. Food (or other environmental factor) is the cause, not who you’re related to.
It all comes down to cause and effect…and the focus is more often than not on the wrong one. So much effort is put into treating symptoms and not enough on figuring out the causes. If you search the hard literature the research is being done to try to identify the causes for autoimmune disorders, but very little is passed down from doctor to patient. I tried talking to my endocrinologist about some studies looking at the prevalence of gluten and casein allergies amongst patients with hypothyroidism (peer-reviewed from popular journals) and he had no clue what I was talking about (but he was a moron, see next paragraph). There is an entire book out on how “to deal” with hypothyroidism with only one paragraph on the connection with gluten (or any food allergy) – pages and pages of information on what prescription medications to take to alleviate symptoms though. It seems like there is a hell of a lot of attention on feeling good and not enough on actually being healthy.
A short note on my experiences with my endocrinologist. He tried to convince me that my problems had nothing to do with food and said I would just have to watch my levels and wait until I had to go on Synthroid because nothing else could be done for my condition. He ignored most of the results of my blood work and was only concerned with how I felt. As if I had some terminal condition and all that could be done was to keep me comfortable till the inevitable. He was just itching to write me a Synthroid prescription and kept offering to put me on anti-depressants to cheer me up (depression was a symptom of my food allergies). I refused. Towards the end, he was ordering over $4,000 (per session) in useless lab tests – not sure how venereal diseases relate to my thyroid – undoubtedly to make some extra money off the insurance company. I kept going to him for the sole purpose of using him to monitor my TSH and antibody levels and give me printouts of the results so I could figure out what was wrong with me. He was useless – completely useless. I had to argue with him to redo my antibody tests 6 months into the new diet because he didn’t see the point since autoimmune diseases are progressive. He was surprised when they went down, but passed it off as a fluke. What a fucking moron. By the way, he is a popular doctor with many patients in Manhattan – if you want to know his name, please let me know and I’ll send it to you privately.
I have relatives and friends that are suffering with autoimmune diseases – an aunt with Sjogren’s disease, a mother-in-law with rheumatoid arthritis and friends with Hashimoto’s. I have tried to share what I’ve learned along the way with them, but when I mentioned giving up certain foods they listened…but from a distance. I’m not sure any of them would be willing to experiment with removing foods from their diet or get blood work done. I suppose when I get my final blood test results indicating no autoimmune disease at all, they might take all my rants more seriously, but I am skeptical. I feel helpless watching the people I love suffer when there could be an easy solution.
Please take my advice and do not give up, especially if a doctor claims nothing can be done for your condition. Doctors do not know everything and I think many stopped reading after med school. So that means you have to read – research studies, books, blogs, other people’s experiences, until you get the answer or at least some resolution. I implore anyone who reads this and suffers from an autoimmune disease to try this approach and consider the foods you eat as a possible cause of your health problems. Good luck!