Food allergens are often found in medications. Who knew?!
When an elimination diet is prescribed for EoE or food allergies, most patients and their parents understand that they must read food labels. A common mistake is for someone who is otherwise diligent in their avoidance to assume that doctors would not prescribe a medication if it contained an allergen. The fact of the matter is that physicians do not have the time to devote to label reading because they spend all day with their patients. When they have time to sit down and read, it is journal articles and other professional resources which must be first devoured. The truth is that doctors often do not know whether the medication they have just prescribed is safe from the perspective of food allergies.
If not the doctor, then why not the pharmacist? You've given them a list of food allergens so they should only be giving you medications that are free of those foods, right? Well...kind of. In a perfect world that would be the case. But we don't live in a perfect world. The reality is that label reading is hard! Food labeling laws do not apply to medications or supplements. Therefore, even the most common allergens can be hidden in flavorings or as long words that a pharmacist will not recognize as an allergen. They are trained to understand medications. Training that allergists receive on food allergies is very basic.
In the real world, the burden of label reading falls to us - the patients and parents managing elimination diets at home. If you have not already read my previous entry, Label Reading Rules, you should read it now before proceeding with this entry.
The process that I follow to ensure that my Overachievers' medications are safe sometimes feels long and impossible, but it has become much easier with time. It helps that we have a good medical team (doctors, nurses, pharmacists, dietitians, etc.) to lean on! I try to schedule doctor's appointments for mornings. Before I leave the office, I write down the exact name of the medication, whether it is a brand name or generic, the dose, and the form (pill or liquid) that is preferred. I also ask whether pills can be substituted for liquid.
Once I have left the doctor's office, I call my pharmacist to see if they have the medication in stock. If so, I ask them to pull out the package insert and read me the list of excipients. (Excipient is just a fancy word that means "inactive ingredient.") Then I follow my previously mentioned label reading rules to determine whether the medication is safe or not, keeping in mind that even the most common allergens can be listed in ambiguous terms. See my Allergy & Eos Resources page for sites that can help with this process. If the product is safe, then I have it filled. When the same medication is needed in the future, I ask the pharmacist to fill it with the same NDC Code which is a number that identifies not only the type of medication, but also the manufacturer, form (ex: pill vs. liquid) and packaging information. I still personally inspect the list of ingredients every time that I pick up a new medication. For over the counter (OTC) meds, the ingredient list is printed on the box just like it is for foods. For prescription medications, you will typically need to look at the package insert. To find the ingredient list in the sea of itty bitty print, I look for the chemical symbol which looks like a big hexagon with a bunch of lines connecting smaller hexagons. Often, the package insert for prescription medications will include ingredients for both pill and liquid form, so it's important to read closely to ensure that you are looking at the form that you need.
If our pharmacy does not have a needed medication in stock, or if what they do have includes allergens, then there are still ways to look into safety right away. In that case, I pull up DailyMed and type in the generic name of the medication that we need. If you type cefdinir (a generic antibiotic) into the search box today, you will get links to all 23 package inserts that are available. I start at the top and read each package insert until I get to one that does not include any allergens of the Overachiever in question. Once I have identified a safe version of the medication, I call our pharmacist and give them the NDC number at the bottom of the package insert. During the week, our pharmacy can order medications for next day delivery as long as I contact them before they put their order in for the day. They do not get deliveries on weekends, so I try to get in with the pediatrician no later than Thursday morning to allow time for me to research and for the pharmacy to place an order. If it is a Friday or Saturday and we can't wait until Monday, then I start calling around to other local pharmacies. Every so often, I will get get lucky!
If I cannot locate a safe version of the medication that has been prescribed, then I call the doctor to find out what to do next. Often, they will have me repeat the same process for a second medication. If time is a factor or we just can't seem to find a safe oral medication, then we look at other options. Medications that come in shot form often are more pure than oral versions of the same medication. IV versions of the same medication are even more pure. A compounding pharmacist may be able to make a safe version of the medication you need. However, if you go that route then you need to be very clear that they need to start with the pure active ingredient. Most compounding pharmacists will just grind up pills to make a liquid version for patients who are unable to swallow pills. That obviously will not work if the pills include your allergen! You should know up front that insurance companies do not always cover the cost of compounded medications, and often they assess a higher copay than if you go with a medication off the shelf. Still, it's an option to consider...
If your pharmacy adds flavoring to liquid medications to make it easier to convince your child to take it, don't forget to check that ingredient list as well!
Occasionally, there will be a true medical need to administer a medication that includes allergens as inactive ingredients. I am personally not comfortable going this route unless our allergist is involved in the process to limit the risk, though we have had to do it on occasion.
As always, please keep in mind that I am not a medical professional. I am just a mom and patient who has spent a great deal of time managing my Overachievers' allergic reactions and reading labels to prevent repeat occurrences. Please consult with a licensed medical professional with any questions that you have about your own medical treatments, including the level of diligence that they expect you to maintain with regard to label reading.
Please share below if you have additional information or ideas about the identification of allergens in medications.