Most people’s ailments are not visible when you talk to them. You can’t see most diseases. You can’t see someone’s mental health. You really truly cannot know what someone is going through. I’ve had my fair share of issues throughout my life — knee injuries, thyroid disease, anxiety — but I truly didn’t think that I’d be dealing with acid reflux at the ripe age of 35. I always assumed that’d be a later problem.
Interested in the back story and journey I’ve had with acid reflux? I know I’ve said I would talk about it here, so here we go.
It started during pregnancy with my second. I had terrible heartburn throughout. I also had heartburn throughout my first pregnancy, but it went away after birth. I remember for my second, lying in the hospital after eating a snack with chocolate in it, and feeling heartburn immediately. I initially thought, well OK my stomach kind of has to settle back into place, the heartburn should subside in a week or two.
Not only did it not subside in a week or two, it got worse. I remember eating my normal diet, and eating a lot because I was always hungry, but then immediately getting pissed off because the heartburn kept creeping back after everything I ate. I brought it up at my 6 week postpartum visit, and my OB literally shrugged and was like “huh. That’s not normal. Heartburn goes away after the baby usually. Try taking a Prilosec and talk to your PCP.” I was frustrated, because I had kind of hoped that ongoing heartburn after your baby was kind of a normal, yet not discussed thing — because that’s super common with women and pregnancy and postpartum. Weird things happen that no one tells you about and then go “ohhh yeah. No worries.” But with this, I got a raised eyebrow and a handoff to another doc.
So I made an appointment with my PCP to discuss the heartburn. She also was a little stumped, but told me to take some Pepcid in the mornings to see if that would settle my stomach. She assumed that there was some sort of acid imbalance in my stomach after the baby, and a few weeks on Pepcid would hopefully solve the issue. She also told me to cut out high acid foods like tomatoes and chocolate.
It did almost nothing. No matter what I ate, I had heartburn. It felt like something was permanently lodged in my throat. One night I decided to have white wine with dinner, which I had no idea was the worst wine to drink for reflux, and had reflux for about 3 days afterwards. I was upset because although I wasn’t in pain, I was always uncomfortable. If you can imagine the feeling of something always in the back of your throat — it doesn’t hurt — but it’s annoying and uncomfortable — that’s what I always felt like.
It went on for months. I made another appointment. This time she told me to take Prilosec and try the Low FODMAP diet. I did, and it helped only very slightly. I still had reflux. But my stomach then started hurting and I got stomach cramps. I made another appointment. She said being on Prilosec for too long can cause stomach issues. She then put me on a different prescription when Prilosec didn’t work. But that also didn’t work. I now had reflux and stomach pains. I was miserable. I was eating very little food. So how could I feel so shitty after all of that?
I was then sent to the gastroenterologist. When I explained my symptoms to her she gave me a confused look. She said, “The feeling in the back of your throat is not typically a reflux symptom. It sounds like you have allergies.”
I almost threw something in frustration at that diagnosis. I know I have allergies. But that could not possibly be causing such havoc on my body. Could it? I demanded an upper endoscopy to see if they could see evidence of reflux in my throat. They hesitated, because truly did not think I had reflux. But ultimately agreed to the procedure. The results? They did not see evidence of acid reflux. They saw slight evidence of EoE — Eosinophilic Esophagitis — which is inflammation of the esophagus — which could be due to food allergies or environmental. They then told me to come back if I had any more stomach or digestive issues.
This kind of made me manic. So essentially, I’ve been suffering from something I thought was acid reflux for years, and this doc was telling me it was…allergies? Allergies to what? I started taking a Claritin daily (before it was only seasonal), and deep cleaned my entire house. It didn’t seem to make much of an effect on the feeling in the back of my throat. That persisted. If there was inflammation in my esophagus, environmental allergies could be contributing to it, but it had to be something else.
I looked back at my diet. I had tried eliminating the high acid foods, but even with a very bland diet, I was still not feeling well. Not to mention — those stomach pains were still popping up. Something was not agreeing with my system.
I took out a Low FODMAP book I had purchased and read it closely. Simultaneously I Googled, “Diet changes for EoE and reflux” — several Reddit threads came back saying:
“Cut out gluten.”
“Get rid of gluten.”
“All of my symptoms went away when I omitted gluten.”
I also thought back to a conversation with one of my cousins, who told me she also suffered from reflux, and she told me she was gluten and dairy free and feeling so much better.
The Low FODMAP book consisted of mostly gluten free and dairy free recipes.
I looked back at my diet and the things I was eating. Almost everything….had gluten in it.
What if I was allergic to gluten?
I remembered a test I took for Celiac’s at my doc’s suggestion back at one of the appointments. It showed that I was negative, but hovering close to the red area for that disease. I concluded I did not have Celiac’s, and my doctor reassured me based on the test that it was negative. But even if I didn’t have a specific gluten allergy, something was irritating me, and I could be gluten sensitive.
So I started the journey to become gluten free.
It was so daunting.
Not only daunting. It was depressing.
Do you know how many things have gluten in them?!! Oh my gosh. It’s everything you love. Bread, cookies, cakes, cereal, cereal bars, pasta, pastries……I mean………… it’s everything………everything you looooove eating.
I was now taking away BREAD on top of the chocolate that I already gave up.
I also didn’t just gradually cut gluten out. I had to cut it out cold turkey to see if it was what was bothering me. And everything I read said it truly has to be out of your diet for about a month to accurately tell if it’s what’s causing problems.
So cut it out I did. I immediately was overwhelmed and upset with how difficult it was to cut out gluten and still eat things that tasted good. Everything I was eating had gluten in it. I had an English muffin in the morning, a sandwich at lunch, and often some sort of pasta was in with dinner because that was kid friendly. Gluten wasn’t just sprinkled into my diet, it was all over it.
At first, I tried gluten free versions of the things I was eating. I will state very clearly and loudly here that most gluten free bread is awful. It’s awful. There’s no better word than awful for gluten free bread. Most of it is small for some reason, and it crumbles easily. It has awful texture. And the taste — it doesn’t taste, well, like bread. It tastes like a hot mess of a mixture of weird grains and something that’s called “tapioca starch”. The only gluten free bread item I will recommend are gluten free English muffins — I prefer Udi’s. It’s made from cornmeal. And my breakfast sandwiches (English muffin, egg, cheese, bacon) is the one meal I truly can look forward to every morning.
I also tried gluten free pasta. And I cannot recommend anyone eats that. A lot of gluten free pasta is made with rice flour. Rice noodles are good in Asian dishes. They are not good substitutes in Italian dishes. Nope. Hard pass.
And another thing that was incredibly difficult to find substitutes for was snacks. Tortilla chips and potato chips are usually gluten free. So I could eat those, but other common snacks like crackers, Cheez-its, pretzels, things like that — nope.
I knew I needed to get creative with my cooking, but to find something I could cook that was gluten free and kid friendly — I’ll tell ya — it’s a SMALL list. (Also dairy free — this came a bit later, but ultimately I have also cut out dairy as well from my diet).
Along with the frustration of a really difficult transition in cooking at home, I also faced the dreaded parties and gatherings and holidays, or summer cookouts. Most of the time, and I don’t blame them, hosts do not have dietary restrictions on their mind. They come up with a menu, or ask folks to bring things potluck style. This leaves me in an awkward situation. Either I confront the host and ask to see if there are gluten free friendly dishes that will be available, which feels weird and somewhat rude, or I attend the gathering with a gluten free granola bar in my bag.
Now put yourself in my shoes. And looking at an array of food in front of you. At a restaurant for example, do you just only get the salad, or do you take a risk with the chicken marsala which might have flour in the gravy? Nah, you think, better just have the salad. Or just have a potato. Meat is naturally gluten free, but if the meat has a sauce on it, I consider that sauce to have gluten in it. A lot of restaurants will gladly tell you what’s gluten free, but at a buffet-style event, the answer might actually be…nothing.
On top of it, I also have to think of acidic foods when I go out, and a lot of acidic foods are in a lot of things we eat, especially restaurants. Garlic and onions are naturally acidic, and they are found in almost all dishes. Tomatoes and a lot of fruits, also acidic. So there actually could be a gluten free dish — like shrimp skewers over rice, but it’s in a pineapple sauce. I can’t eat pineapple. So that dish is now off limits if I want to be able to sleep well. Mexican food is usually a hard no for me as well — I can’t have salsa and so much Mexican food has hidden spices as well.
People who have never had to deal with dietary restrictions for themselves or their kids often have a very difficult time understanding. Not because they’re mean or they don’t want to. It’s just that if you haven’t dealt with a specific hardship, you just tend to not put much thought into what could really affect others who do deal with it.
So it really makes a huge difference when someone who knows I’m gluten free actually asks me ahead of time what I can eat that won’t bother my stomach later on.
It truly means so much when you check in with someone on what they can and cannot eat.
The best place I have encountered that takes food allergies and dietary restrictions seriously is actually Disney World! I want to go back to Disney for so many reasons, but one of them being that they not only were so careful to make sure I was happy and safe with my food, but their gluten free bread actually tasted good — and all their gluten free food was amazing. Thank you, Disney!
So how am I doing now — almost 4 years later into this journey.
Well, after eliminating gluten from my diet, I felt a lot better. I also started taking an antihistamine daily instead of just during the Spring or Fall when my allergies typically bothered me. Since I was feeling better, about a month into eliminating gluten I tried adding it back. It did not go well. So I determined that gluten was a huge problem in my diet and that eliminating it was the right move.
My stomach was still off a lot, though. So I also decided to eliminate dairy except for certain hard cheeses. My husband can’t eat dairy, so he helped me with that. Once I stopped eating soft cheeses like goat cheese and no longer added milk to items I was baking, I also noticed a positive difference.
So now I’m completely gluten and dairy free.
I actually very recently just tried adding a small amount of chocolate back into my diet. (Think mini chocolate chips.) And they did not bother me! I also have added more foods back into my diet that previously bothered me such as avocados and corn. I read in a Low FODMAP cookbook that having these items such as chocolate and avocado (which are high in FODMAPs) in small amounts, your body should be able to handle them. And now it can! Before, the issue might have been having too much of these ingredients — like eating too much guacamole. But also, to be aware of how the guacamole is made. I can’t have highly acidic lime juice and raw garlic and jalapenos, but I can enjoy avocado on a fish taco with mild spices and a corn tortilla.
I’m less mad at food than I was even a year ago. I’ve finally found the recipes that sit well with me. After immense trial and error and frustration and many tears, I now eat well and enjoy my food again.
Going to restaurants is a bit easier. I’ve found the good ones that truly care about those who need to be gluten free and clearly label their menus with “GF”.
Parties will continue to be difficult, but as this goes on, my friends and family will remember my needs and hopefully have a dish that everyone, even I, can eat!
Also, I discussed with a new PCP (yes, I moved on from the first one) my frustration with this journey and if I possibly never had reflux, but just allergies. She actually diagnosed me with asthma as well, based on an additional symptom of wheezing, which I initially attributed to reflux. I was so frustrated and upset at this, but she said to me, “Some people just have multiple medical issues. You have both reflux and allergic asthma.”
It was definitely a hard pill to swallow, and I looked at the biggest other environmental allergy I initially missed…my cat.
My daughter was suffering from asthma flares, and now I was also wheezing in my own home. We ultimately made the incredibly difficult decision to re-home our cat. I also came to the conclusion on my own terms that pregnancy most likely suppressed my cat allergy. Pregnancy suppresses the immune system, and since I was pregnant for a few years in my home, my cat allergy most likely was not as serious as it had been before. After my second child, a large buildup of cat dander was all over the house from living here for years. It most likely made everything worse. The feeling in the back of my throat was inflammation in my esophagus — from both allergies and gluten.
By removing gluten and allergens, my throat is back to normal. My stomach also doesn’t hurt. I want to say I’m happy because of it, but it was a problem that took me 3 years to actually solve, and resulted in the re-homing of my cat and a massive overhaul of my diet and removing a lot of things I loved from what I ate. Yes, I feel better, but a lot of sacrifices were made to achieve this.
Do you have dietary restrictions?
Have you gone on a frustrating food journey?
Let me know! I’d love to chat.
<3
Megan
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