If you have ADHD or know someone who has it, you’re probably familiar with how difficult it is for us to manage some fairly basic executive functioning tasks. Our short term memory is poor, and we often don’t think before we do things. So when we’re diagnosed with or suspect a food allergy, it can be really tricky. I am guessing the same is true for any food management issue- special diets like with diabetes or heart health could also be similarly tricky.
I’m going to speak from my own experience here… I haven’t seen much in the ADHD community about this issue, but I’m going to talk about common ADHD issues and how they may complicate getting diagnosed with and dealing with food allergies.
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This blog is for educational purposes only. This information is best case scenario, at least within the scope of my knowledge and experience at the time I write the post. Not only does everyone have different approaches to parenting and life- and my way may not be your cup of tea, but also- I am not perfect, nor do I want anyone to imagine that I am. Despite being a therapist and having a whole host of really cool techniques for all the mental health related things, I am constantly learning and trying to do better.
I’m hoping that this blog can help you. When we share what works for us, we can help others develop their own toolkit for improving their mental health.
Issues with Getting Your Food Allergy or Intolerance Diagnosis
Food allergies and ADHD don’t really have anything in common- it’s more than the executive functioning issues with ADHD make food allergies problematic.
When you initially suspect a food allergy or intolerance, the allergist is likely to ask you to track your diet and reaction to the various foods. You may need to remove certain foods from your diet for a period of time, then add them back in over a course of weeks.
I remember the first time a doctor suggested that I do this. My mouth dropped open. I saw a funny TikTok video that summarizes what a typical reaction might be to this sort of request…
@lifeactuator Things people with ADHD have a hard time explaining. Part 19 #adhd #adhdtiktok #adhdtok #adhdawareness ♬ original sound – Eric LA^
At the time, I wasn’t diagnosed with ADHD yet and while I suspected it, I didn’t really think through the reason this suggestion sounded SO VERY HARD.
But there are a lot of challenges here:
- Remembering to track the food
- Remembering to track unpleasant symptoms
- Being able to find the notebook you’re tracking everything in when you need it.
- The length of time that you need to do this (usually 1-2 months)
- The need to cut foods out of your diet for that time period and track when to introduce them back in.
- Learning new recipes or adjusting current ones.
- Trying to figure out what every food has in it- this is hell for some ingredients like egg which are hidden in a lot of foods.
- Trying to do tasks that are already difficult or unpleasant- like grocery shopping or cooking- but making it harder.
- We struggle to get started on tasks that feel really ‘big’ and difficult. We are prone to procrastination.
I’m sure there is more involved that I’m not thinking of right now. But my doctor might as well have asked me to climb Mount Everest. I can’t quite explain it- but if you know, you know what I mean.
These are combined with the typical challenges for most people- things like not being able to go out to eat because you can’t be 100% sure what’s in the food you’re eating.
After an Allergy or Intolerance Diagnosis: ADHD Mistakes
Once you’re diagnosed, you need to do the following:
- Remember not to eat foods that you may have automatically… I’ve had egg products for years without thought. Grabbing something off an hors d’oeuvres plate is pretty automatic. When you first get diagnosed, it’s easy to impulsive grab and munch before THINKING.
- Remember to check ingredients for the allergen… on EVERY box/container of food. Because one box/batch might have an allergen that another doesn’t.
- Carefully monitor your diet- forever.
- Carry an Epi-Pen.
- Be willing to USE The Epi-Pen and go to the hospital after.
- Announce your allergy and ask about allergens at every restaurant, activity, vacation, and event that you attend… at least if you want to eat.
- Rely on others understanding your allergy when you eat out and ask about ingredients.
- Deal with RSD (rejection sensitive dysphoria) when restaurant staff, family, and friends treat you like crap because your allergy is inconvenient for them.
And, depending on the severity of your allergy, you need to think about cross contamination. I have to think about the fact that food such as bacon may have been cooked on the same pan and at the same time as the scrambled eggs, even though I know the bacon itself would be safe. Our dishwasher is currently acting up so I’ve been worried that it may not wash off egg properly if my other family members ate egg recently.
You can’t ASSume that anything is safe because for some ungodly reason, there is WEIRD STUFF in our normal every day foods.
Things I’ve discovered have egg (often the hard way):
- Marshmallow fluff
- Pancake mix… the kind where you need to add egg.
- Most salad dressings. Italian is usually safe, but not Olive Garden’s Italian.
- Many chocolate bars and more candy than I would have guessed- ie. Milky Way, Three Musketeers
Not only is it difficult to manage all of this, but the USA has very few rules about companies reporting allergens.
And just because you THINK you’re safe, doesn’t mean that you are… you need to check EVERY BOX. NOT every product like you might expect.
And MORE frustrating- two batches of the same product can have different ingredients.
Here are two boxes of THE SAME BLUEBERRY MUFFIN MIX… on the same day… at the same grocery store… same sku code. The left box has only wheat ingredients. The right one has wheat EGG MILK AND SOY! This *blew my mind* and the only reason that I knew to look was because an allergy group mentioned it.
I was at the store to find the non egg version because I can substitute other things for the egg that’s required to make it. Apparently the non egg version is an older batch and we all were trying to buy the non egg version before it was gone.
Rejection Sensitive Dysphoria and Food Allergy Management
UGH. The RSD is probably the hardest part. I hate asking about allergens and inconveniencing people. I hate the angry looks, like they think I’m intentionally being a pain in the butt.
Sometimes staff at restaurants will just tell you EVERYTHING has the allergen in it to avoid having to look up the information or worry about liability (I’ve been told mac and cheese had egg soooo…).
Sometimes they’ll say everything is safe and you have to educate them or otherwise risk getting sick- for example, we went to a restaurant and the manager told our waitress almost all of their sandwiches were egg free. I had to let them know that the mayonnaise likely has egg in it, as do a lot of dressings and sauces. This way they could check to see if the food that I choose was safe… because I was already there, seated, and I needed to eat. I probably should have left to find another restaurant, but walking out is a really distressing and embarrassing thing to do too. Fortunately, the waitress was really nice and had Celiac so she understood my issue a bit.
More often than not, I’m the only one who cannot have dessert at events or restaurants (desserts almost always have egg).
I’m the person who says, “I can’t go to the special lobster eating event because I’m anaphylactic and I don’t really want to take the risk of being stuck in a room with the smell and potentially having a reaction.” And then having the person either upset that I won’t/can’t come or try to accommodate me, and I’ll feel guilty that I’m extra work.
And while I am a therapist who is aware of my RSD and able to cope with it, it still is sad and lonely sometimes. Sometimes those little food things can really make a nice day very sad. This is why having a support system of others with the same allergy can be helpful.
Overall, managing food allergies or intolerances requires a LOT of executive functioning skills. Skills that quite frankly, are VERY VERY HARD for us.
The stress of it is INDESCRIBABLE. I went to Disney right before the pandemic hit and discovered that they tend to have VERY allergy friendly staff. They’re educated and careful. They care. It was such a unique experience for me and SUCH a relief to me that I almost burst into tears. Not only did I not have to worry about feeling guilty about asking about allergens, but they made me feel confident that they weren’t going to make an accidental mistake despite good intentions. AND they even had desserts and other foods that were allergen-free. They order special breakfast cakes and desserts that are allergy friendly, fresh each day.
The relief… the joy… the weight off my back… it’s hard to explain. Because allergies take a LOT of executive functioning skills to manage… so much that sometimes I just want to NOT EAT. Or just eat Oreos (they’re egg free, thank goodness).
Ideas that May Help
This is more of an awareness post. I don’t really have many solutions.
- If people aren’t supportive and helpful about your allergen, DITCH THEM. This is unkind of them. If it’s a waiter at a restaurant, talk to the manager or write a review. The reviews let others with allergies know if they can safely eat there. It’s also good to leave GREAT reviews and mention allergy friendliness if you have a good experience.
- Have more than one Epi-pen and keep them in areas that you know you may need them. For example, if you use a purse, the Epi-pen should stay in there.
- Join a group that focuses on your allergen. Often it helps to run things by a group when you have questions. This is where I find good recipes and substitutes. It’s also where I go when I need to have a good rant/cry about issues that I run into with other humans ignoring my allergy.
- Go to restaurants that have a published allergy menu. This helps a lot. Most of these places won’t be ‘creative’ or ‘generous’ with ingredients. No random ‘the chef sent out these lovely shrimp cocktails as a bonus’ like at a fancy restaurant.
- If you have a non ADHD partner or friend that you go out with frequently, ask for their help remembering.
- Keep a list of local restaurants that are allergy-knowledgeable or not.
- Make a list of safe food and safe restaurants that you can keep on an app in your phone.
- Find friends to eat with occasionally who have a similar allergy (if you know anyone). This can be reassuring and you can swap info, share favorite restaurants and recipes, etc.
- Keep track of the best local hospital to go if you need to use your Epi-pen. I’ve never used mine (more on this in a second), but we have 3 local hospitals that are all about the same distance. Two have a much shorter wait.
- When traveling internationally or going anywhere that the staff won’t speak your first language, make sure to get a good translation in multiple languages about your allergies. I feel like having a small card with the words translated in different languages would be helpful.
The one thing that I think is LACKING and REALLY needs to be addressed by medical professionals is the FEAR ABOUT USING THE EPI-PEN. I’ve been shown how to use it, but would truly hesitate to use Epi-Pen if needed because I’ve never used it before.
This is a common issue for people with ADHD- we see a big scary new thing that we need to do and possibly procrastinate on learning to do it. This is not a big deal if it’s learning to fix the broken leg on a chair… but problematic if it’s ‘learning to use the medical device that can save your life.’
I would REALLY benefit from an Epi-Pen “blank” WITH NEEDLE and a doctor to guide me through the entire process, including stabbing myself with the needle. I need to actually do it so I’m not scared of doing it. Fortunately, my anaphylactic allergies are easy to avoid and I haven’t had any mistakes post diagnosis. I have more of a Celiac type response to egg so that doesn’t require an Epi-pen.
And attached to the real Epi-Pen, I’d truly need a card to remind me how to use it and the next steps after using it.
I hope this gave everyone some ideas, or at least allowed you to feel less alone in this issue. What a pain in the tush.