Dear Dr. McDougall and to the whole team,
I am a long term follower and success story. I am from a rheumatoid arthritis family (mom and brother). I have suffered inflammation but never got any exact diagnosis but kept reading and reading and changing my diet and always stayed this side of (whatever) inflammatory disease progressing. I am ever grateful to you all for all the work you do. I wrote this essay on my story as part of a memoir and I thought I would share it with you all. Happy to be a star McDougaller on your web site to help others. As I mention below I have tended to keep quiet because this news is hard for people to hear but I'm ready to speak out.
Best, Sarah
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When I was a kid, I had eczema. Itchy rash on my arms and the back of my neck pretty persistently throughout my childhood, miraculously tapering off in my teens. I remember when it abated being grateful I could wear short sleeve shirts, revealing the clear skin on the insides of my elbows. I’m done with all that nonsense, I thought. I grew out of it. Just like they said I would.
I also suffered from a couple of nasty bouts of asthma that would send me to the emergency room as a kid. That feeling of the air passage constricting to a tiny hole and using all my lung capacity to suck in a tiny amount never enough. Not fun, but I’m giving that one credit for why I never smoked. I’m a never smoker. Proud of my pink lungs, but this is just to say I was an allergy kid.
Mom and dad and the pediatrician thought I was allergic to chocolate. I was a kid allergic to chocolate. Chocolate! No chocolate cake, chocolate cupcakes, chocolate chip cookies, chocolate chip ice cream, M&Ms. The whole deal. Bummer. Of course with chocolate as my forbidden food, I craved it more than anything. And I snuck it all the time. Of course I wasn’t fooling anyone when I scratched myself raw all those nights.
Flash forward to art class at the Art Students League. I’m in my late 20s. Suddenly there are cracks on the tips of my fingers. I’m wondering what that could be from? Could it be from the solvent for my oil paints? Suddenly the itch was back. The word itch sounds mild. It’s more like a fire that rages under your skin until the only relief is scratching it. Nights I scratched all night and couldn’t get rest. I started to have pain in my hands. My fingers were so swollen I couldn’t hold Troy’s hand as we walked home on Ninth Avenue. The touch of the cotton bedsheets bedsheet on my legs was impossible to endure..
What was happening? I started to wonder what in the world I could be allergic to. Was it the coffee? Was it the bagel with cream cheese? Was it the half and half in my Starbucks? I visited a dermatologist and peppered him with such questions. Nonsense, he replied. He wrote me a prescription for a Cortizone cream and sent me off.
I used the cream, and it helped a little, but the rash never went away completely. It was always ready to come back sometimes worse than others. I knew I hadn’t figured anything out.
I was back to my questions. Was it the coffee? Was it the chocolate cake? Was it the butter in the biscuits? Was it the strawberries? I kept wondering.
One day after many years of trial and error (seven to be exact) I was reciting my questions to my husband and I said do you think it’s the creamer? And he answered go ahead and give up dairy. It’s the only thing you haven’t tried. See if that helps.
A week later, all of my symptoms cleared up. My hands went back to normal size. For our wedding, a few years before, I had had to get Cortizone shots in my hands to wear my wedding ring. But now they went back to normal size on their own. No more itching. No more swelling. No more pain in my joints.
Whoa. This was big. I wasn’t allergic to chocolate all those years ago. I was allergic to dairy. The milk and butter in the chocolate.
In a way my life started over. I felt so much better. I could run and jump and not risk anaphylaxis on the treadmill. But I became a food weirdo. Goodbye, Greek yogurt and goat cheese. I’ll pass on the pizza. At Thanksgiving, no thanks on the mac and cheese and green bean casserole for me Adios, ice cream. Adieu, dessert tray. I started to eat my cereal with rice milk. I was weird in a new way.
We were already weird because we were trying to not repeat the cardiovascular disease that took its toll on my father-in-law (quadruple bypass). So we nerded out on books on that and watched our cholesterol numbers. Just about gave up red meat and most other meats and stuck with seafood.
So first, meat. Then dairy. What could we even eat? I couldn’t always stay on the dairy wagon. I couldn’t always say no the pizza. Felt so sorry for myself. Everyone else got to eat the pizza—why not me? I fell into a battle with myself. Eat the pizza and feel miserable or don’t eat the pizza and feel unfathomably sad. For many months I ate the pizza and suffered the consequences. It was day by day.
And even without dairy I still had a few flare-y moments. So I realized there must be more foods my body doesn’t like. There was the eggplant casserole I had loved so much as a kid. Even how it made my lips burn. Oh, it doesn’t do that to you? Ah, right. Just me. I added eggplant to the list.
Hoppy beers made my hands swell up. Same with wine. Really? No fair. Can I file a complaint with the manager?
By then, we were back in New Orleans. I always loved a good plate lunch, but the cafeteria at the times picayune took me back to my childhood. To me the taste of Chez Picayune’s red gravy was Proust’s madeleine. Suddenly I was in our house on Prytania Street tasting Edith Johnson’s creole cooking. All the New Orleans dishes: shrimp creole, chicken fricassee, red beans and rice, stuffed bell peppers, And that eggplant casserole. It tasted so good I would never even notice my swollen lips. This was taste of home. The taste of love and family. How can you give that up?
I remember one day in desperation, opening the fridge and yelling. What am I supposed to eat? I thought lemon water would work. Water with lemon. I had fun buying bags of lemons and slicing them up and adding them to my water. But after a week of that, swollen hands returned. Lemon? Are you kidding me? Even lemon.
So I knew there were other allergens. I also had trouble eating like a normal person in public and separating out all the ingredients in everything. What was in that soup? What was on the sandwich? When my allergy flares got really bad, I realized I had to eat super plain. Plain fish, plain white rice, plain green beans. I ate this alone at home and filled my belly full. It felt great to eat food that wasn’t going to turn against me. I vowed to learn more.
I started to read up on inflammation. I learned that you should eat wild-caught fish instead of farmed, because the feed served to the fish might contain your allergen. Wild-caught fish. Wow. Never thought about that before ever but OK makes sense.
So back then my happy food was wild-caught fish, white rice (plain), green beans steamed. Each thing as itself. No sauces. This is not how we eat in New Orleans. This is what I ate in secret at home.
But when I ate like this, my hands were normal size and pain free, and I didn’t spend my nights with the fiery flare of inflammation.
During this period, my mom received a three hour infusion steroid treatment every other month for her autoimmune disease. It would never cure it, but it was supposed to slow the progress of the disease, maintain her joint function. But it didn’t really do that. Over many years, her joints were stiff in the mornings as her appointment approached, and my siblings and I fretted about the eventual loss of use of her hands and her ability to walk
Mom’s troubles began in her fifties. Painful episodes in her hands and feet. She often wondered whether it was food related but no doctor ever confirmed that hypothesis or gave her any definitive answer. But she had come along way from the Christian Science of her youth. Luckily her mother Helen took her to the hospital as a girl with pneumonia and they tried this new drug on her: penicillin. Whew. So thank goodness she went to the doctor at all, and she followed their guidance. Doctors really got her out of a jam in the mental health category as well. And I’m thankful for all those trips to the ER. Hurrah for steroids.
But maybe there’s another way? A way to get off those steroids? When I gave up dairy, I tried to suggest the same to her. Maybe that would help her illness. But my words never seemed to reach her. Her breakfast plate had a butter filled croissant or a bagel with cream cheese. For lunch, a ham and cheese sandwich maybe on a croissant. For dinner, maybe onion soup with a butter-soaked crouton with Gruyere cheese and a Caesar salad with parmesan. She was on her medication, so hopefully that would help .
In those years I took up jogging, and I went from 0 to 3 miles. Eventually, up to an occasional 10K. Felt like a hero. I took my sister Lucy on her first half marathon, and I even helped her through the last mile if you can believe it. Sometime after that It’s like a switch went off in her head, and she has left me in the dust ever since, peppering her daily schedule with yoga classes and her annual calendar with marathons in all parts of the world. If we couldn’t save mom, we could run mile after mile in frustration and helplessness. And maybe save ourselves.
Gradually, mom went from cane to wheelchair, although it took many years. And back then they didn’t know that sitting was the new smoking. Atrophy was another secret killer. Or maybe not so secret? It was plastered all over the Well section of the New York Times. But that section wasn’t as interesting as the book review.
I realized I couldn’t drink most commercial smoothies, so I started to make my own. I learned that dark green leafies were the most dense in nutrients the body wants. Foods that are rich in color like blueberries and dark cherries.
When I got myself in a jam by eating carelessly, my hands would swell up and crack and ooze. Gross. Unsightly and painful, they would immediately send me back to the humiliation of the kid with the raw elbows.
Instead of more steroids I tried this I could slip baby spinach into my smoothies and if I added blueberries and maple syrup, as well as nondairy milk and frozen bananas, it was tasty. And that concoction shrunk my hands back to normal size. Food, the great healer.
Also, it was not just what I ate, but what I did not eat. So many things to keep track of. But it worked.
Over time I felt less sad about giving up the pizza. I started to look at that slice and hold my stomach anticipating how bad I would feel. I started to think about making greens the center of my food each day. Not easy at first but certainly possible. Preferable to shooting pain in my knees.
Mom’s hands twisted into shapes. Eventually, she had to use two hands to sip water. She could no longer open a bottle by herself. Her knees bent sideways and she went from cane to wheelchair. I wondered sometimes if life would be different if she skipped the croissant and the cream cheese. But it was not to be. We would never know.
I was sad to learn that nobody in rheumatology spoke about nutrition. I would look around the rheumatology waiting room and wonder what everybody had for breakfast what they were going to have for supper. Disappointed further when I learned that med schools didn’t teach nutrition. And even further, if they did teach nutrition, wouldn’t they still include milk and butter like they do for kids in the food pyramid? Do they still serve eggs and bacon to the cardiology patients in the hospital? Nobody would believe me.
I found a couple of inflammation MDs. So grateful for their books which saved me. Even though I was a food weirdo, I felt like I knew a secret that everybody should learn: Your body wants you to eat fruits, vegetables, whole grains, beans, seeds, and nuts, with only occasional animal protein. Yep. That’s it. I wanted to scream it from the mountain tops. Wanted to save some lives.
And here’s the kicker. It’s not just me. Eating all the foods outside of the list hurts everybody, not just me. Disease forms slowly over time for others. But the autoimmune body tells you right away. I was not a weirdo after all. We all were, just most people didn’t know it yet. I started to appreciate this body. My body that speaks back to me. Tells me what to eat. So my legs and arms could move. So I could lift my two babies I had in my forties, push their stroller as well as mom’s wheelchair. OK, no buttercream but I’ll take it.
I tried to share it a couple of times but each time my words fell on deaf ears. Twenty years after my dairy discovery, I told my old dermatologist, the one who gave me injections in my hands, and he laughed it off with a shrug. Go figure.
I realized most people don’t really want to know what the body wants to eat. Who in their right mind would read this article and want to give up wine, beer, cheese, milk, cream, all desserts, and meat? My favorite doctor even leaves out oils. A life with no oil. Who can live like that? Troy told me I ruined food for him. Sorry, love. I did. We dream of going to France but there’s the lingering question. What are we going to eat? What is there besides croissants, pastries, cream sauces, wine, and, oh, le fromage!
I realized people want to eat what they want to eat. What mom served them when they were kids, when food meant love. When food meant belonging. No one needs me coming around and telling them what to eat or what not to eat. So I kept my mouth shut. Kept to myself.
There’s the ache of painful hands, and there’s the ache of living side-by-side with someone who is suffering. Someone you love. Someone you want to help. There must be something we can do. Maybe try this, try that, But what if they don’t? What if they can’t hear you. What if they can’t go there. Where you are. What if we are all tethered to our own track? How do we live with that? Watch that slow march to Calvary.
Now almost a quarter into the twenty-first-century, science is coming around to the notion that the immune system lives in your gut and there’s something going on with all of that flora in there. The bad bacteria are linked to certain diseases.
Hmm, you don’t say. There’s something to that. It didn’t help mom but I’m hopeful for my son who gets the itchies too. And those doctors who saved me, who wrote their books and give their talks, remain at the fringes of traditional Western medicine. You guys are my Galileo. Maybe we don’t believe you now but one day science will catch up to you. Just maybe not soon enough. Thank you for telling the truth.
Last weekend my sister and I ran our weekly long run: ten miles. I’ve been alive half a century and I can still do a downward dog and a chair pose. I can squeeze my hand into a fist. My rings slip off and on no problem. We are about to run a half marathon in January. This one’s for you, Mom. Love you the best.
