Toodlebug went in for allergy testing and came out allergic to the world. I’m joking, of course. Mostly. In addition to the standard fare one might expect, think indoor/outdoor allergies and cats, Toodle is also allergic to peanuts, pork, soy, and wheat. Round two added asparagus, cauliflower, raspberries (poor girl!), tomatoes, sesame seeds, ginger, and navy beans to the list. That’s a bit…tricky. We purged the pantry again, and I ended up at the grocery store more times in two weeks than I had in the previous three months. Because we have nearly eliminated all processed foods from our diets, the hardest part is coming up with something quick at lunch or dinner if we don’t have a lot of prep time.
The big question now is whether the allergy testing was worth it. Have we seen any progress? K-Hubs and I say yes. While she still has bald patches, they aren’t spreading and new ones don’t appear to be forming. There are follicles in each patch, and hair is growing in, albeit slowly. Another question is whether Toodle’s health, aside from hair, is improved. And to that we also say yes. Toodle is, and always will be, a spirited girl. It’s one of the many things I love about her. But she seems calmer, more able to follow through on actions and ideas. Like my mother, I am digging my heels in on this one. I whole-heartedly believe the behavior of Toodlebug’s hair is an indicator of her overall wellbeing. And maybe I can’t fix her alopecia areata, but I still believe wellness and alopecia are related.
I’m glad I pushed for round-two of allergy testing because the allergist, a little more traditional in nature than K-Hubs and I, said if her hair didn’t grow back after eliminating foods identified in the first round, there would be no need to do any other testing because the allergies were then not related to her alopecia areata. However, per usual, something kept bugging me. Why wait? Couldn’t it be possible that some other food we hadn’t tested for be the one food that was bothering her? Couldn’t we unknowingly offer her large quantities of food that irritated her? Many people with alopecia (areata, totalis, or universalis) don’t see progress until the particularly offensive food is removed or all offensive foods are eliminated. In an effort to find alternatives to foods she could no longer eat, couldn’t we inadvertently introduce new foods that also caused allergic reactions?
It turns out, yes, that is exactly what could have happened. Tomatoes and raspberries, identified in round-two testing, were two otherwise healthy foods she not only ate in large quantities but also was highly allergic to. Feeling self-conscious about being so persistent, I feared I was turning into “that” parent. The one everyone in the clinic whispers about. But then I had another familiar feeling. It was similar to the way Mom acted throughout my childhood every time she felt something was wrong and she was the only who could see it. She advocated for me even if, and especially when, everyone else disagreed. In spite of her 5’1 frame, she was a force to be reckoned with.
For example, there was the time she argued incessantly with the orthodontist. She simply would not hear about anything to do with headgear. In spite of his protests to the contrary, she was convinced the gear would pop out of my mouth and into my eyes, blinding me forever. And then there was the time she wouldn’t let me sign up for pointe ballet classes because she was convinced I’d need foot and ankle surgery by the time I was 20.
So although I was going to wait a while for further testing after round one, I listened to my inner voice and lasted a whopping three days to set up round two. True confession, I would have set it up sooner but it was a weekend. We have learned that autoimmune diseases are primarily environmental and less about genetics, which meant I had another nagging feeling. And an innocuous comment from the pediatrician (not the family physician referenced in the previous post) about early exposure to prevent future allergies led me down a pointless path. This time the nagging feeling was that we had done something wrong. Maybe we washed our hands too much when she was little or not enough. Maybe we bathed her too often or not often enough. Did we overexpose her to germs, but maybe the wrong ones? And the family cat we never got? What if that was the whole reason she acquired alopecia areata. The “environment” we created for her was all wrong. This could have all been prevented had we just gotten a family pet. Well, shoot. We failed as parents before we even got her to kindergarten.
But I like to think God smiles on us more often than we realize. And after the first round of testing, a woman approached me in the health foods aisle at the grocery store with a question about milk alternatives. This led to trading stories about our allergy-prone children. The woman, to whom I will always be grateful, said, “Oh, you need that book by that doctor who cured herself of Multiple Sclerosis through diet and exercise. Can’t remember her name. Something like Wall.”
The book has been a game changer, a lifesaver, for us. The Wahls Protocol answered many of my insecurities about Toodle’s health and why I am drawn to doctors who also have a functional approach to medicine. Environmental doesn’t automatically mean “parental screw-up” like I had been secretly thinking. Environmental includes anything from an illness at some point in one’s life to exposure to a toxin. High fevers are also possible culprits. And combined with genetics, which do play a part, there are some people who are going to be more prone to autoimmune diseases than others. But if the environment is the main cause, then maybe the environment can be the main cure, too. Hence the emphasis in her book on diet, exercise, and assessment of stress and environmental toxins.
Dr. Wahls’ book got me thinking maybe symptoms don’t always tie nicely into one diagnosis. At the risk of making Toodlebug “special,” I found myself wondering, instead of anaphylactic shock, what if her symptoms were behavioral? What if, instead of getting physically sick from offending foods, she is ill behaved at the table because she genuinely doesn’t feel well? What if, instead of swelling and rashes with each meal, she is distracted, irritable, and hyper? This seemed to be the case for Toodle. What are we doing about it? I remember having extremely sensitive skin until I was in high school. Mom, Dad, The Gram, and Auntie tried to keep me away from potpourri stores, perfumes, certain jewelry, and even makeup. I didn’t wear foundation until I was a sophomore. Only once Mom suggested I give it a try did I actually start.
In that same vein we have focused on perfumes and chemicals that might be bothersome. We have changed out her detergent. Overkill? Probably. But we had some Charlie’s Soap on hand so the switch was easy. Reflecting back on the little things my family did for me, I remember secretly thanking them for trying. And once I learned the medicine she takes thins her scalp to allow it to work (I don’t know how that one never dawned on me), I traded out her shampoo and conditioner. Thank you to the lovely Whole Foods employee who helped me find an all-natural alternative that didn’t include wheat or soy. That was not an easy task.
We have eliminated nearly all processed foods. Someone hold me. I could really go for boxed brownies right now. Toodle also drinks rice milk, and we buy our fruits and vegetables in bulk at Costco. K-Hubs is the official freezer of foods for the family. He found this site particularly helpful for learning how to freeze various foods. What about sugar? That’s where I draw the line. I’ll give up wheat and all the goodness that goes with it. I’ll give up soy and every soy-laced chocolate on the planet. I’ll steer clear of cheese and eat it privately in the company of dear friends who let me eat the last piece. I’ll eat Jimmy John’s in my car on a side street and sneak cookies at kids’ birthday parties. I’ll develop an honest affection for fruit and kale smoothies (sweetened, of course). But sugar? I will not give up sugar. Why? Because I have absolutely no idea how to cook with it’s brothers and sisters. Stevia? You have no idea how many desserts I have thrown away trying to bake with stevia and a bulking agent like applesauce. Agave nectar? Well, of course it isn’t recommended in large doses because that’s the one I have reasonable success with. I’m like Julia Roberts in Pretty Woman. “That’s the fork I know.”
Twinkleberry eats the rubbery cookies I have attempted to make, but she also tries to eat foam bath toys, so I don’t take her vote with a lot of confidence. To the men and women who have learned to make 7-layer cakes with stevia, honey, and egg whites, I salute you. K-Hubs does, too. He’d actually like to meet you and not-so-secretly wonders if you’ll adopt him for dinner and let him stay for dessert. People with alopecia areata often do give up sugar. And eventually, I will have a burst of patience and attempt to bake with sugar alternatives again. For now, we are letting Toodle eat some sweet treats but only in small quantities.
In cutting out processed foods, I was surprised how much we had cut back on sugar already. There may be other foods to avoid, but the first two rounds were enlightening. The testing process was bothersome enough for Toodle (we are doing the scratch test as covered by insurance – I’ve heard of a blood-draw/panel option, too) that K-Hubs and I decided to postpone testing for tree nuts and shellfish since she doesn’t eat foods in either group with regularity. Already we feel a sense of relief and an ability to care for Toodle, which has been our main goal from the beginning. As curious as we are to see how this evolves, there is another person to add to the list. The allergist. We go back for a follow-up assessment in two months. When I asked what the meeting would be about, he said, “I want to see if the hair grows back. I want to see what her scalp looks like.” I’ll accept that. We want that as well. RESOURCES I promised in my previous post that I would share articles and websites that have been helpful in understanding what to try and what to expect. Below are a few of my favorites. Cookbooks:
- Vitamix Recipe book that came with my 5200 Series
- Better Homes and Gardens – I modify individual ingredients
- The Wahls’ Protocol – Awesome starter recipes
- Foods to eat and those to avoid – http://www.diethealthclub.com/health-issues-and-diet/alopecia-areata/alopecia-areata-diet.html
- For what others have to say about their own experiences – http://www.alopeciaworld.com/forum/topics/dietary-changes-halting-alopecia-areata
- This PDF was of one patient and his success in reversing the effects of alopecia – http://www.steinorthopedic.com/pdf/alopecia-areata.pdf
- This one is a case study of one person who reversed his alopecia through functional medicine. It is a little different than other articles I have found, but I took comfort in the early stages with Toodle that we might have other options. Part one of his content is here – http://www.healingalopeciaareata.com/all-great-truths-begin-as-blasphemies/ AND part two is here – http://www.healingalopeciaareata.com/scientific-basis-that-diet-and-nutrition-might-be-used-to-reverse-alopecia-areata/
I can’t speak to the validity of any of these articles and resources, only that they helped me better understand Toodle’s situation and my own uncertainties of how we were initially addressing her alopecia areata.