These voices represent just a small percentage of the people we have heard from along our journey to protect millions of Americans with the ADINA Act. Their stories and experiences represent the challenges faced by the food allergic disease community every single day. 

Jennifer D. -“About 5 years ago our daughter had a severe reaction to the chewable form of monolukast and later we found out that it contains dairy in the chewable form. It made me incredibly angry mainly because it was prescribed by an allergist with the intention to control her reactions. When I confronted them of course they had no idea they were prescribing a medicine that contained an allergen.”

Kelly H. – “My son had a reaction to childrens advil a few years ago for undeclared milk. He had a fever, gave childrens advil (liquid) and he got full body hives. Took him in and had to pay for the doctors visit. Thankfully, he was okay, but it could have been way worse! I recently also contacted the company who makes childrens Benedryl and they refused to tell me if their chewables contained allergens. They just wouldn’t even tell me and said they couldn’t confirm. Soooo infuriating”

Wendy W. – “This is such an important issue! My adult son with multiple food allergies has not had a reaction to a medication, but we have had to take extensive steps every time to try to get information on ingredients. Doctors arent informed on medication allergens. Pharmacists even have to research it each time and we are rarely confident with the answer. It does not make sense that consumers cannot get details on what they are ingesting. It’s a gamble and it shouldn’t be. Thank you for trying to find a solution!!”

Teresa O – “Thank you for doing this!!! When first trying seasonal allergy meds in pill form once our oldest was old enough is when we discovered the hard way about dairy/milk as a binding agent in pills. It’s so frustrating!!”

Rachel L. – “My son had an anaphylactic reaction to his rescue inhaler. Very frustrating as I had, as I always do, asked his pediatrician to double check the prescription, asked the pharmacist to double check when I picked it up and still everyone (including me) missed the fact that there was a small amount of milk powder used as an inactive ingredient.”

Emily M. – “I have two kids with celiac, and anaphylaxsis to treenuts, coconut, shellfish, and mushrooms. We’ve had to switch medication because of not being able to confirm if they are safe (shellfish has been surprisingly the biggest issue). It’s beyond frustrating. “

Melisa S. – “…, a family member of mine with celiac had a very adverse reaction to medication back in 2017 or 2018 with severe symptoms that were eventually tracked back to gluten , despite due diligence being taken. “.. “I have personally called manufacturers to try to find information about an advil that was provided in a first aid kit at work. I called the main number, had to go through multiple automated systems, talked to a human and was given a new number, that process repeated again more than once, and eventually was told they’d call me back. They never did.”

Leah L. – “It is challenging to find out if even the simplest of over the counter medications are gluten free – ibuprofen, antihistamines, acetaminophen, etc. Every American should be able to know beyond a shadow of a doubt if their prescription or OTC medications contain allergens!”

Amanda M. – “My daughter is medically complex and I continually run into roadblocks with trying to confirm her meds are gluten free. The best was when a manufacturer said they would research but it could take 1-3 months and if they couldn’t find the answer they just wouldn’t send anything. One of her medications is manufactured by a company with a global presence. It is labeled overseas but not in the US. It is extremely frustrating.”

Renae J. – “My experience with my son at Walgreens- they put gluten as an ‘allergy’ on his file. I thought this was awesome. Until they refused to fill his prescriptions because they either could not get the manufacturer to confirm a medication was gluten free or they didn’t have time to find out, so in an abundance of caution, simply refused to fill the prescription. We switched to CVS and he does not have this flag on his records there. He rarely need prescription meds, so we haven’t had a problem, but I bypass the pharmacist and call the manufacturer myself.”

Kim T. – “My daughter is allergic to red dye and wheat, she had strep throat and we had a hard time finding anything not red and gluten free, and I am a physician so I knew all the options, started leaving CvS, looked at the medication, it was red so so had to go back. Luckily I knew how to look up gluten free medications and told the pharmacist a different antibiotic option because they had no clue how to find a gluten free one(the red dye us the major difficulty too.) she vomits and has diarrhea and palpitations with either one.”

Melissa H. – “At CVS Gluten is listed as an allergy at the pharmacy but the pharmacy doesn’t check for food allergies, they only look for drug indications. I no longer feel I can get meds there for my daughter and husband. We go thru Mayo when not urgent but trying to get ahold of someone to call each month to make sure manufacturing hasn’t changed is time consuming for everyone but at least they are willing to unlike CVS.”

Jeanne M. – “When my child needed an antibiotic on the weekend, the pharmacy was not able to contact the manufacturer to find out if it was GF because it was the weekend.”

Jessica D. – “I’m scared everytime I try a new prescription or unlabeled OTC (gluten and shellfish allergy plus celiac)”