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WE NEED SOMETHING DONE TO PROTECT US!!!

Mar22
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Go to solution Solved by RMJ,

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Mar22 Rookie
Mar22
Posted

Hi there! I am SO UPSET, FURIOUS ETC.! 
I was the one trying to make sure that our drugs were “safe”.. (I have celiac, my Dad has terrible DH) I have been on a mission to help him! I KNOW he is NOT ingesting ANY gluten as I cook for him. I came upon the idea that hmm maybe his medications??! That is where  it all started!! Long story longer.. CVS pharmacist was an  amazing help! The outcome NOT SO MUCH!!  The manufacturer says “there is No Gluten in our Drug. I can’t guarantee that there is Not Cross contamination in the facility though! I AM IRRATE!! We didn’t ask for this disease!! Why are there NO LAWS FOR US?! This is just toodiscouraging for me!! I was hoping you could help get me in touch with whoever to make some noise aboutthis!! It’s just NOT ok!!!
Sorry for the rant! I am extremely upset & need help to get my Dad’s rash under control! (He’s on Dapsone, makes him extremely Exhausted with the other medications he’s on)
**We need laws to protect us too!! **

We DIDN’T ask for this! IT IS A DISEASE!!! Nothing to be fluffed off over!!!  
 

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Maria Deal Apprentice
Maria Deal
Posted

Yes I agree.
✅ We also need safe food in hospitals! I need surgery but I won’t have it, there is nothing except fruit cups that I can eat! 😡 I am extremely sensitive, airborne reactive, so cross contamination is a big deal to me!

I found a pharmacy, Publix, that cares and gives me the “info cube” so I can call manufacturer. The other pharmacies are too overwhelmed or you cannot even speak to them to explain an allergy!

Someone needs to be the Gluten Free manufacturer.

Mar22 Rookie
Mar22
Posted
  • Author

Maria,

I am EXTREMELY SENSITIVE AS WELL! Can’t touch it! I am sorry you are going through this!! You are 1000% right!!! Even when going for endoscopy/ colonoscopy.. ummm HELLOOOOO!!! NO gluten-free FOOD?!?! It’s ridiculous!!! 
I Agree also to your point of the need for a gluten-free MANUFACTURER!!! 
Jennifer Esposito is a huge advocate.. maybe SHE HAS TGE PLATFORM??!!? 
 

  • Solution
RMJ Mentor
RMJ
Posted
  • Solution

This looks like the most recent attempt in Congress to pass a law requiring labeling of medications with respect to gluten, although it didn’t make it through.

HR2435

The National Celiac Association advocates for this type of labeling.

National Celiac Association

Perhaps write to your congressperson and ask them to introduce such legislation or support it next time it comes up.

Mar22 Rookie
Mar22
Posted
  • Author

Thank you SO MUCH for your WEALTH OF KNOWLEDGE & information!!!! 🤭

I will DEFINITELY do ALL of the above that you mentioned!!! 🙌🫶

LCAnacortes Enthusiast
LCAnacortes
Posted

Dylan Dreyer on the Today Show's son Cal has celiac.  Having more celebrities diagnosed will bring more attention to this. I was super lucky.  I live in Anacortes Washington USA and had to have emergency gall bladder surgery.  Island Hospital did great - about having gluten free options and lactose free too. 

Mar22 Rookie
Mar22
Posted
  • Author

Good to know!! I am in New York. I was unaware that Cal has Celiac, and YES the more celebrities or people in power, that have it might help.. 
You are right about the fact that we are GROWING IN #s!! 
 

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Mar22 Rookie
Mar22
Posted
  • Author
Just now, Mar22 said:

Good to know!! I am in New York. I was unaware that Cal has Celiac, and YES the more celebrities or people in power, that have it might help.. 
You are right about the fact that we are GROWING IN #s!!  Manhattan has A lot of food options (restaurants) but we NEED THIS LAW PASSED regarding medications & manufacturing cross contamination!!
Be well 😉

 

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