This is a post for anyone who is wondering just what on earth is wrong with me and why I can’t seem to eat anything. It’s taken years to untangle my health issues, and I’m still not done yet… but at least I’m getting somewhere, finally.
I’ve always had health issues. From infant food intolerances, to repeated bouts of pneumonia, to migraines. I can handle a little discomfort. But after I had my first child, it got decidedly worse. I had near-constant, brutal migraines. My sinuses were swollen and in pain. After my second child, I had swollen hands, nerve pain, and muscle weakness. I had the inability to think straight, like my mind was in a fog. Everything was inflamed and hurt. I’d say that most days my pain level was between 6 and 8 on the pain chart. For those unused to the pain chart, that means it had a direct impact on my life, interfering with my ability to do tasks, sometimes even taking care of my basic needs. I ended up on antibiotics a lot. After seeing the doctor over and over, I had multiple medications to take, I had to clean my sinuses twice a day, I took Advil like it was a vitamin, and I was constantly hanging out in the bathroom with a steamy shower in order to try to get the pain in my head to get the slightest bit better. And this went on day after day, month after month, for years.
My regular doctor sent me to an allergist, who suggested it might be due to gluten. So, five years ago, I went gluten free. My symptoms got drastically better in just three days. It was hard work to get used to checking every ingredient and every meal I ordered at a restaurant, but it was worth it to finally get my life back. I still had good days and bad days, but finally the good days outnumbered the bad days. I had more bad days in the beginning when I wasn’t quite sure which foods tended to not be problematic (spices!), but I also had many friends and family who were also GF to help me. The great thing about the diet becoming trendy, even if it is for stupid reasons, is that many manufacturers removed gluten from their products, so it’s really only gotten easier as time has gone on.
But then other problems cropped up. Back when I was 19, I was diagnosed with IBS. It’s basically a catch-all, we-don’t-know-what’s-wrong-with-you and please-go-away diagnosis. It’s miserable, embarrassing, and even has a horrible, comedy-worthy name. One doctor gave me hydrocodone and told me to go away, another gave me a list of foods to avoid and muscle relaxants to help with the pain. I wasn’t really interested in being on those medicines forever and the list of foods never helped. But I dealt with it. After I went GF, my IBS got worse. So I re-dedicated myself to avoiding the foods I was supposed to avoid and ate fiber until I couldn’t stand it anymore! Still, it got worse. And worse. (Trust me, you don’t want a discussion of the symptoms!) Finally, when I just couldn’t take it one second longer, I went looking for a gastroenterologist in the area and found my favorite doctor, ever. I finally felt like someone was taking my problems seriously.
He introduced me to a new idea from Monash University in Australia — that not only does fiber not necessarily help IBS, it might make it worse! I was initially skeptical of a doctor giving me another new diet that would supposedly help me, but as soon as I looked at the lists of allowed and disallowed foods, I was ready to try it. The foods on the lists lined up perfectly with what I had already determined by experimenting at home. I knew carrots were always fine to eat. I knew green bell peppers always made me sick. And so did Monash University!
So two years ago, I embarked on the low FODMAP diet. It’s hard. It’s really hard. Honestly, I’m not entirely sure how people without degrees in Biochemistry or Molecular Biology even manage to figure it out, because it’s so sciency! Basically, it’s like lactose intolerance, but on a crazy massive scale. With lactose intolerance, you can’t digest lactose, a sugar in milk, so when the undigested lactose reaches your intestines, the bacteria there throw a fermentation party… and symptoms result. Well, FODMAPs are just a bunch of other sugars and sugar-related molecules, such as fructose, that do the same thing when you don’t digest them correctly. The thing is, those sugars and other molecules are sprinkled liberally around the food web and there isn’t any easy way to guess which FODMAPs might be in which foods.
I had to reduce or stop eating most fruits, many vegetables (no onions or garlic is difficult!), sweeteners (no honey!), artifical sweeteners (no gum or most diet foods), many types of nuts, almost all beans (*sob*), and many other foods. Like many food-intolerance diets, you start by eliminating everything that might make you feel bad. I felt so much better in just one week. Then, after a month or two of the elimination diet, you slowly try to add things back in to see if you can tolerate them. I mostly failed to tolerate anything and while I was testing each problematic food, I felt bad again. It was a difficult summer.
(Chart thanks to Jeffrey Roberts from ibsgroup.org. It’s a little out of date — some of the foods on the “ok” list are only tolerated in small amounts, such as celery and grapes.)
Eventually, I even managed this crazy FODMAPs diet. I started making my own cream cheese (store-bought cream cheese is high in lactose) and made lists of FODMAPs-free meals so I could have an easy meal list for planning purposes. (List 1, List 2, List 3) I searched for recipes online and stuck them in Pinterest so I could find them. My mom and I took old recipes and made them GF and low-FODMAPs. I made almost everything I ate from scratch, including chicken broth and pasta sauce, just like I did back when my babies were nursing. When they were babies, they had really bad colic, because they couldn’t handle the onions or garlic in food. I searched for alternate brands that used sugar instead of HFCS, brands that used no onions, brands that didn’t sneak in my mortal enemy, sorbitol. I used maple syrup in everything. I felt great.
But a year later (last spring), I felt bad again. Not just bad… horrible, as in “let’s get to the ER, I think I’m dying” horrible. We haven’t entirely figured out what happened to me last spring and summer, but one major thing I was diagnosed with was GERD. Reflux. I realized that I basically had the digestive system of an extremely colicy newborn. Even worse, it was my beloved low FODMAPs diet that was hurting me. When I lost so many fruits and vegetables, I filled those spaces in my meals with tomatoes, pineapple, citrus fruits… everything that makes reflux worse.
It was the worst year of my life. It was months of unpleasant testing with doctors. I lost 15 pounds because I couldn’t eat. Then I gained 15 pounds because I couldn’t do anything. I got out of shape. I was scared to go anywhere. I spent far too much time teaching the kids how to call 911 and quizzing them about our address, just in case. Heck, I was even injected with radioactive isotopes twice!
So now I take medicine for reflux. I cut tomatoes out for a while. I try to eat way way way before bedtime. I’m at a bit of a loss for what to eat. It would probably be easier to make a list of foods I *can* eat instead of lists of foods I can’t. I’m pretty sure it would be shorter. I still have bad days, but the bad days usually aren’t as bad. On the other hand, the good days are also never as good.
I’m not convinced we’ve figured out what happened to me last year. We’re a step closer, but we still don’t have the complete picture. All I know is that it’s correlated with my allergies and it’s spring again… and I’m scared.