Before this month ends I have to acknowledge that May is Celiac Disease Awareness Month.
Celiac Disease is an autoimmune disease that I have. It means that my body cannot process the gluten protein at all. If it enters my intestines, they shut down, entirely and I am unable to get any sort of nutrients.
There are a lot of misunderstandings about Celiac. The biggest one is, of course, that it is an allergy, or an intolerance. Itâs actually about the immune system. My immune system is programmed to see gluten as a virus and completely shut down.
It doesnât matter how much or how little gluten, the result is the same. This is why cross contamination is such a big thing. Even a small crumb could make my body sick for months. Think of gluten as glitter. It gets EVERYWHERE, and you have to be really diligent to clean it up.
Which is why going out to eat is so scary. Cause, for me, being gluten free isnât a fad, it keeps me alive, and many many people just see it as a joke.
Illinois is doing something about this. They passed a law that went into affect in January requiring Celiac Disease to be included in the training a restaurantâs food safety manager must go through. Which is a huge step in Celiac Disease Awareness.
But itâs not just food. Itâs also medication.
Sometimes I feel like I might be confused for MAHA because I am so wary of medication. Even though itâs unregulated I would rather take supplements every single time, cause at least they SAY âgluten free.â
Itâs not that gluten is consistently used to bind meds, but there is no FDA requirement for pharmaceutical companies to test for ANY allergens. So all I know is that they donât include gluten containing ingredients, but they donât test to make sure theyâre actually gluten free.
There are a few exceptions, Walgreens âFree and Pureâ over the counter line being one. They DO test all their drugs to 20ppm of gluten, which is the industry standard. For the first time in my life, I have headache meds. That was never something I had access to before.
But thatâs about it. I have an IUD cause the birth control Kaiser now carries is no longer a safe brand. I had an infection but couldnât have antibiotics, cause the last time I did, when I had pneumonia in 2014, I WAS glutenated.
Luckily thereâs a bill in Congress called the ADINA Act. It stands for Allergen Disclosure in Non-Food Articles Act, and it would bring the US into the 21st century.
A lot of countries already have this. Like you have to list potential allergens on food items, this would require the same thing for non food items, like medication.
The bill currently had 17 cosponsors, 10 Dems and 7 Republicans, but it needs a whole lot more attention to actually pass.
Cause, itâs been introduced in various forms since Dem Rep Tim Ryan introduced it in 2012. Most people reading this have probably never heard of Rep Tim Ryan, and that tells you just how long itâs been introduced. And itâs never passed. Itâs never even been voted on in committee.
But things are hopefully different now. Cause Adina Togal is a girl. A girl with INCREDIBLE parents, Seth and Jennifer, who are shouldering this fight personally.
Itâs not just a statistic of how many people have been affected by the lack of labeling, itâs a girl that these elected officials can see stand in front of them who is lucky to be alive today, after being given medication containing her allergens at camp in 2022.
As someone who is chronically ill, in large part thanks to having been born with Celiac and going undiagnosed for the first three years of my life, the ADINA Act would change everything for me.
So, as this Celiac Disease Awareness Month comes to an end, I beg you, please call your Rep and ask them to make this a priority. Itâs completely bipartisan, it might actually have a chance of passing this year, if we can get enough attention on it, that is.
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