Living With Food Intolerances

There are serious differences between food allergies and food intolerances. Since Bess doesn’t have an anaphylactic reaction to her trigger foods, her intolerances are not always taken seriously. People hear ‘food intolerance’ and think gas, discomfort, and some lost sleep.

What is it really like when Bess gets a hold of a trigger food? Screaming for 8-12 hours at a time for 3 days…very few breaks from top of her lungs screaming. Diapers filled with mucus and streaked with blood. She barely sleeps. She sobs for at least 36 hours, while gas explodes from her raw little bottom. And a strange rash covers her back and belly.

This happens after two bites of a trigger food. We are extremely grateful that she doesn’t have food allergies, but these food intolerances aren’t sunshine and rainbows.

Last year, we took her to an allergist and a gastroenterologist. Both at a Children’s Hospital. I actually took the girls all by myself to the follow-up appointment. It was my first trip alone to that hospital. And with the giant special needs stroller. (I listened to the same Coldplay album on repeat for 7 hours on the drive. If you don’t own Ghost Stories, I recommend buying it today. It’s one of the few albums I listen to from the very beginning to the very end without skipping any tracks.)

bess gastro 2 bess gastro

After a couple hours of appointments, we decided to start a trial with Bess. It was almost guaranteed to wreck her immune system all winter, but we needed to know if she had a disorder or just intolerances. Two weeks earlier, she had tested negative to actual allergies. We used a trial medication for three months, which wasn’t covered by our insurance. Because our daughter didn’t stop breathing, it wasn’t considered necessary. Bloody, projectile diarrhea seemed like a pretty worthy reason for medication to me. But I may be biased as the person washing all those diapers.

We also couldn’t eat any new foods, eliminate any foods, or change our diet at all. For three months. We were grateful when the trial revealed that Elizabeth did not have eosinophilic esophagitis (eoe), just ‘serious food intolerances’…it was great news. We had waited so long to get that news, because insurance wouldn’t even cover the initial visit until after her first birthday. We finally had some answers.

I continued to breastfeed Bess for several months after getting the news. We were both off wheat, gluten, cow’s milk, any cow’s milk proteins, peaches, and cocoa. We were able to add eggs into our diet, which was amazing. Since weaning Bess, I have reintroduced some of these foods back into my diet. But Bess is still off all those foods.

Last week, she accidentally ate two bites of a trigger food. Insane diapers for three days. Sleeping patterns were non-existent. Screaming and crying for days. And a rash on her trunk. Two bites.

I will admit that I barely thought about food allergies and intolerances, other than the peanut…he is treated with fear and reverence, until Bess was a couple months old. She has me checking labels constantly, questioning everyone who is feeding her, and continually saying, “Don’t leave that fill-in-the-blank sitting out. Bess might get it.” It’s exhausting being a mom to a kid with food issues.

I am so blessed to know fellow mamas whose kiddos have allergies, intolerances, and both. Support is how you get through the tough days. And marshmallows. Those also help me get through the tough days.

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3 thoughts on “Living With Food Intolerances

  1. Amber says:

    Just as an FYI, you don’t have to have anaphylaxis to have an allergy, and you don’t have to stop breathing to have anaphylaxis. Anaphylaxis is when two or more body systems are affected by an allergic reaction – such as digestive and skin (like Bess has). Skin testing tends to have lots of false negatives and false positives, blood tests are more accurate, but still have false negatives, especially if you have already excluded the item in question from your diet. If she is having that sort of reaction, I would consider it allergy, not intolerance (the difference is that an allergy is caused by the immune system, while an intolerance isn’t). I’m not trying to be bossy or think I’m telling you stuff you don’t know, especially since I’m just some random person on the internet, but if Bess were mine, I would consider a second opinion (I know, I know, just what you wanted, another doctor appointment). I just went through all of this myself before discovering I have an allergy to peanuts, corn, and shellfish, as well as latex cross allergens (pineapple, kiwi, canteloupe, tree nuts, banana, etc), and an intolerance to lactose.

  2. […] was nursing a kiddo with allergies/intolerances. No gluten. No wheat. No dairy of any kind. Absolutely no cows milk proteins. No cocoa or […]

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