Ready for a really long read? Just a warning, there’s no short version here… Also, this was written around 2016? Some things may have changed since then, especially the safe food we eat. This was a snapshot of where we were back then.
The Allergy Chef
I want to start my story by saying that I’m not the rule, I’m the exception. I can honestly say I’ve never met anyone in my boat before, and I don’t ever hope to meet one. The story below only scratches the surface, but will give you an idea of the path I walk.
As a young child, I couldn’t have eggs, chocolate, and milk without feeling sick. I was also allergic to grass and had a note to get out of PE. My skin was hyper sensitive to soaps and detergents. I gained weight like no body’s business. I was the fattest kid in kindergarten, weighing in at a whopping 60+ pounds. By grade 4, I was in the 140 range. By the time I was in middle school, I was so large I couldn’t fit on a roller coaster. Yup, one of the saddest days of my life when both David and I (he was the other big kid) couldn’t go on one of the rides, and had to take the walk of shame… By the end of high school, I was simply huge.
Through all of that, I was living in an abusive environment. My dad died shortly after I turned 5, and the stress that I had to endure increased every day. Hind sight allows me to see that it was probably during this time the (assumed) leaky gut started. That amount of physical and emotional stress on a child is simply too much.
I had a somewhat ok upbringing. I’m sure it could have been worse. I didn’t play sports much, but loved to play baseball. I did that for many years. Looking back, I can honestly say I didn’t overeat as a child. Portions were appropriate for my age. However, there was a lot of fast food, and frozen meals. Mix that in with developing most likely leaky gut and the food issues that were already there, and it was a storm brewing.
During high school, I had my wisdom teeth removed. The laughing gas was seriously hilarious. I still laugh about it to this day. No really, it was SO funny. I digress. After the operation, eating became very difficult. Right about the same time, I was on antibiotics, as I was getting sick a lot, but never really getting better, and I developed an ear infection. I had to get things checked out because I was scheduled to take a flight for a school trip. I now know that it was during this time, I completely fell apart, and no one knew. On the second to last night of the trip, I had the most delicious meal ever. Remember the dental operation? It was preventing me from eating most of the trip since the food was too hard. It was soft pasta. I had thirds. It was creamy and filling and I hadn’t really eaten in days. Well, the next day it all hit the fan. It started with a shake. I was literally shaking, but only in the hands. Just a little. But it lasted for hours, and it was uncontrollable. After several hours, they called to find out if there were any medical conditions they should be aware of, but there weren’t any. As the day came to a close, my whole body was shaking off and on, uncontrollably. We boarded our flight, and it was still going, this was after about 18 hours. I was moved to first class and the pilot was made aware in case they had to make an emergency landing. No one knew what was wrong with me. When we landed, I was taken off first, and there was a medical team waiting for me. They got me hooked up to all sorts of things, and I got to ride in an ambulance with the lights on (but no sirens) to the emergency room. I was there overnight, maybe even the next day. I don’t remember that part. It all happened so fast. They ran a million tests and poked me with a million things. I even had a brain scan. In the end, all they could say was that it was tremors, and they had no idea why they came and why they left.
DUH! It was the wheat and dairy overload. Oh if only I could go back in time and help younger me out… save myself from the suffering.
As I completed high school, the physical and emotional stress got worse as the abuse got worse. Every day there as a new reason to want to die. It was like living in hell. The weight never stopped going up. I was adopted by awesome people in my late teens, but a lot of damage had already been done.
In case you don’t know me, people say I’m smart. I graduated from college at age 19. I moved to a different state and got even more sick. I was getting rashes all the time, walking was hard, I was getting more infections, and still, no one knew what was wrong with me.
I moved back to CA and got a new job. I kept falling apart. I was about 400 pounds, and coughing up blood almost daily. I had no idea what was wrong. One evening, I went out with friends and had a few drinks. Not the hard ones, but the sugary ones. I was SO sick that night. I woke up and threw up, but I wasn’t drunk. I knew it was the sugar. The next day, I eliminated sugar. Overall, it didn’t help much, but I started to learn about what was wrong with the current food system.
I finally decided to see a doctor. I hadn’t seen one in a long time. I had been previously diagnosed with PCOS, and that was attributed to my weight. Looking back, it makes me angry because of all of the assumptions that were made about me. No one that could have helped me did. They simply didn’t do their job. The reality is, it was classic chicken and the egg. PCOS was not the driving force, it was the end result…
The new doctor referred me to an endocrinologist, who, like the others didn’t do a good job. She essentially blamed me for everything, said I was fat, gave me some pills, and sent me on my way. I wasn’t satisfied with this. I played along for a while… I moved again, and then moved back to CA, again. Yup, I couldn’t make up my mind. There was drama, and the stress was rising even more. Although I wasn’t living in an abusive home anymore, I was living under way too much stress. Yes, that’s the moral of the story so far. Stress kills. Literally.
During this time, The Papa needed help with The Kids, and like I had always been there for him in the past, I was there again. Looking back, it was too much to handle. Just too much. I wasn’t getting enough rest, the stress level was insane, and I had to work and take care of 4 kids all day every day. At this point, I reached my max of about 450 pounds if I had to guess. I didn’t have a scale that could hold me.
Enter the greatest doctor ever. He’s a chiropractor. Yup, I had gone east. One day, after explaining that I was taking a ton of OTC pain and allergy pills every day to function, and that just going outside caused intense sinus pain, he suggested I could have a problem with gluten. Since I had been learning so much through research I had to do when feeding the kids, it was easy-ish to make the change. I started with rice. I decided to make my favorite fried rice and see what happened. The first day, with everything in, it hurt as usual to eat. One by one, I started to remove the ingredients. It wasn’t until I removed the corn that I REALLY felt better. I was left with rice and peas, and I was strangely OK with that. Once we knew there was some sort of allergy in play, I decided to get tested for a bunch of stuff. We learned that my vitamin D was 4. Yes, that’s not a typo. It was 4. I have been told by so many doctors and professionals that they have never seen anyone with vitamin D that low before. I also tested positively allergic to just about everything. I also tested positive to having more food sensitivities than I can count. When you added it all up, there wasn’t much left.
I consulted with many specialists, none of whom could agree on a course of treatment. Meanwhile, I was getting sicker everyday. It got to the point where I couldn’t really leave the house anymore without getting sick. My throat would swell up every time I ate, so I stopped eating for the most part. The Papa and I said our goodbyes because we knew the next meal could kill me. Finally, I couldn’t drink water without feeling sick. Literally EVERYTHING was bothering me. I was referred to more doctors, all of whom gave me pills I was allergic to. Yet, they were convinced the benefits would outweigh the harm. It didn’t. I got sicker each day. I finally reached the end of the road, the guy that everyone sends their patients to, the ones you simply can’t help. He was supposed to be like a miracle worker. He gave me 30 days to live. Like all the others, he had never seen anyone that bad before.
Those 30 days were leading up to Kid Three’s birthday. I made sure that everyday was a good one. We never told the kids why, but we tried to make sure that if these were my last days, they would have good memories. 30 days came and went, and I was stil here. Another 30, and I was still here. After 6 months of waiting to die, we figured the doctor must have been wrong. At this point, I had given up on both east and west and tried to do my own thing.
To this day, I’m not really all that better. I did loose 250 – 300 pounds which was nice. I still can’t drink water consistently. I have to wear an industrial mask to leave the house. I’ve developed contact allergic reactions where all it takes is a touch and you have a problem. I’ve had head to toe symptoms, about 100 of them, maybe more. There have been times where the reactions literally paralyze me and cause my heart rate to drop quickly. Times when I can’t breathe. Times when I’m so depressed and mentally effected I’d rather be dead.
Living with this condition has been probably the worse thing I’ve ever known. Yet, I try not to feel sorry for myself. I try to remind myself everyday that it could be worse. I try to stay thankful for the little things… hot water… indoor plumbing… a car that works…
As a young child, I was quite ambitious. Yet, I had to put aside all my wishes and dreams to take care of others. Then I was too sick to live. I’m at a point now where all I can do is try to make it easier for those that are suffering through this sort of stuff. The funny thing is, this isn’t even the whole story. I think I’m only scratching the surface, hehe, but I think you get the idea now.
10 years ago, I never knew this allergy world existed. Now, I’m determined to make it a better one. My dream is to make it so there isn’t another kid that gets looked over, and that we can stop these problems before they start.
Coconut. Of all things… it had to be coconut. Usually, something like coconut isn’t a big deal, similar to those with a shellfish allergy. It’s usually quite “easy” to avoid. However, once you go dairy free, or start to make healthier choices, there’s coconut in just about everything. It’s nearly impossible to have everyone share a store-bought dessert, such as the really cool Daiya dairy free cheesecakes. They have coconut. A lot of Paleo treats have coconut too. There are times when it becomes a struggle because for so long I have tried to make sure that no child is left behind, but I also have to make sure that The Papa isn’t left behind either. Oh, and macadamia too, but we aren’t phased by that one.
Kid One has had issues in life that’s made his diet become the center of attention. He does amazingly well when he’s on juice diets. He says that he thinks much more clear and fast. However, he hates it. He’s been on camel’s milk, and that really helped balance his mood. He’s been Gluten Free and Dairy Free for years because it improved his brain functionality. He was on GAPs for about a year as well. He’s the kid that’s been on it all, and hates it all. Now that he’s old enough to make his own choices, he chooses to eat like an
organic American. While it makes me sad, it’s OK because this is all part of coming into your own. He knows what’s good for him and what makes him function better. Now he just needs to choose it, even when it’s hard. I share that to say that no one is perfect. It’s not easy in today’s society to pass up all of the temptations.
If you have found that the products we offer are helpful, be sure to thank Kid Two if you ever meet him. It’s because of him that all of this exists. Kid Two was born allergic to dairy. It wasn’t a huge deal. We had him on soy based products (something we would regret later once we learned more about it). At age 6, I knew there was something going on. He was gaining weight, yet I knew how much he was eating and how much exercise he was getting. As someone who was like that as a kid, I knew I had to get to the bottom of it ASAP. I worked with his pediatrician at the time, and she was epic. She didn’t think I was crazy, and would listen to my ideas and brainstorm with me. We had him tested for everything, including a sleep test. The last thing she tried was a new round of common food allergens, and boom. There it was. A wheat allergy. It was a big deal. Yet, it was devastating for him. He cried… He asked me if he could have pancakes. No. Cake? No. Cupcakes? No. Chicken nuggets? No. He kept crying. That same night, I went to Whole Foods while the kids were playing (we were trying to cheer him up) and bought every gluten free item I could find. It was hard because it also had to be dairy free. I spent over $300 that night, and every penny was well spent.
We got home and I set up the kitchen with all the products. We called him in and said “SURPRISE! These are all the things you CAN have!” He gasped and cried tears of joy. I don’t think he’s ever hugged me that hard. Getting a little teary eyed just thinking about it. Don’t tell him I said that. Anywho, that was the start of our DF GF life.
Then. Yup. There’s more. Then he started to get sick again. Little things here and there. I knew once again that something was wrong. He was complaining of stomach aches ALL the time. He had a new pediatrician (not as epic) but still nice. I asked her to run some tests, and he came back as low vitamin D. Now, she said it was normal… He was at 20 and normal was 20 – 100. Anyone that’s ever had low D knows what the smirk on my face looks like as I write this. So, I took him off of eggs and did a food challenge. It was hard not having eggs in anything, so there was no bread for him either during that week. Sure enough, I made him eat an egg one day, and he was in SO much pain. He said it was a 9, knowing that 10 meant you were in so much pain you wished you were dead. He slept for most of that day, and he hasn’t had eggs since.
I went about making sure he was on every good supplement under the sun, and mega doses of it at the beginning. We saw an immediate change in him. Then we got a little lazy. I put him “in charge” of supplements. He knew what he was supposed to take, and it was all portioned out for him. I didn’t stay on top of it, and that was a HUGE mistake. He was tired all the time, couldn’t focus, was just blah. Finally, one day, he told me that it took all of his brain power and energy to take out the trash when asked, and he forgot what he was doing while he was doing it. It finally clicked. For whatever reason, I wasn’t hearing what he had been trying to tell me, and I finally got it. I was back in charge of supplements. Within two weeks, he was back. He was fast, alert, and really on top of things. He could feel the difference, and he liked it. I like to joke with him now…”Kid Two, if you evvvverr stop taking supplements without permission….ooooo the trouble you’re going to be in.” What I love however is that Kid Two is just so fun and awesome. He’s never seen his inability to eat things as something that holds him back. It’s just the way things are for him. Although travel is hard, and eating out is nearly impossible, he does well with what he has.
I should add, he is severely allergic to dairy. He’s at the point now where items made in a shared facility cause reactions, so just about everything has to be made at home now, including snacks.
The famous boy who couldn’t have sugar. Kid Three is so special. He can’t have sugar to save his life. When he was much younger, he got into A LOT of trouble at school. You can’t imagine the awful things he would do. Well, one day, we were fed up. We had truly had enough. We took away all sugar for a month. This was at a time when dessert was served daily to anyone who ate their vegetables, so this was a BIG deal. Well, after two weeks, it was like having a whole new kid. He was nicer, quieter, and simply more in control of himself. Silly us. We thought the punishment was working. Fast forward to the end of his sentence, and the first night he had his dessert back, he was literally jumping off the walls. No joke. Two bites in and he jumps up, bounces on the couch and starts bouncing into the walls. We were shocked, and in that moment, we knew. From that day on, it’s all been a counting game. We started by taking away all sugar again, but did it “with him” rather than “to him”. We had to explain that it was for his benefit. I should also add that this happened at a time when he was on meds for ADHD, but I never was happy with it. On 2 occasions, he came to me and said that his heart was hurting, and sure enough, it would be racing as if it were going to explode. I wanted him off the meds ASAP. OK, back to the other story. So, we slowly increased his sugar by a few grams a day. One day, we had to get hair cuts. He was starving. I gave him 2 Z-Bars (total of 20g of sugar). He was literally rolling all over the floor. He wasn’t trying to be wild, instead, he literally couldn’t control himself. That’s when I knew what the magic number was.
For years, his number was 20g per meal. However, over time, he became more rude, and mouthy. He started to become loud and problematic. Sure enough, The Papa was letting sugar slide, a little here and a little there. Well it all added up fast. So I went low/no sugar with him. On day one, I got him down to 4g of added sugar for the whole day. He was an angel that day. He also realized over the next week that it was easier to think, and easier to “be good” on the low/no sugar plan.
Now, we’re in a medium place. He has about 12g a day of added sugar. Some days less, some a little more. I don’t count fruit or milk sugars against him, but I also don’t let him gorge on these items either. It’s all about balance. These days, it’s hard because he’s growing, and he eats a lot, but we’re having to find new ways to give him a lot of food without going over the limits. Although it’s really hard to deal with (harder than GF DF EF sometimes), it’s worth it.
This little one has no allergies to speak of. At one point, she was jealous of the others because they got “special food”. However, they all assured her that they were jealous of her. I always giggle to myself when I think about this because the grass really is greener on the other side.
Kid Five is so cool. She’s not really ours. She’s from another country, and lives with us for school. Our families have been close for decades. She has no allergies. In fact, she had no clue that people could have food allergies until she came to live with us. It was a total shock for her. Interestingly, she has her own microwave (gasp). Update: Kid Five is now off at college. We went to visit her last month.
Kid Six lived with us for about a year while we were helping his family. Peanut Butter and Chocolate. Yes, those were the two things he couldn’t have. It was hard at first because the kids LOVE chocolate. I had to be very mindful to make sure he wasn’t left out. It was during this time that a lot of our more tropical flavors were developed.
Over the years, we have had many people in our lives that have helped us get to where we are. Since The Allergy Chef can’t taste what she creates, others do the job for her. A very special thanks to: Christine, Rachelle, JK, Kelly, Jack, Orlando, Margoux, Julie, Vernita, Elaine, Cyrene, Dottie, David, Elizabeth, Nicholas, Natalie, Eric, and Karlton. You have all been instrumental in our success!