09/14/2024
Today is National Celiac Disease awareness day, and I want to share my story living with this autoimmune disease to raise awareness 💚🥹
🧐 - What is Celiac Disease?
Celiac disease is a serious autoimmune disease that occurs in genetically predisposed people where the ingestion of gluten (a protein found in wheat, rye and barley) leads to damage in the small intestine. It is estimated to affect 1 in 100 people worldwide.
The treatment burden of celiac disease is comparable to end-stage renal disease, and the partner burden is comparable to caring for a patient with cancer. The ONLY treatment for Celiac Disease is a very strict gluten-free lifestyle. Ingesting as much as a crumb or coming into cross-contact can create issues with malabsorption of nutrients.
Untreated celiac disease can lead to the development of other autoimmune disorders like Type I diabetes and multiple sclerosis (MS), and many other conditions, including dermatitis herpetiformis (an itchy skin rash), anemia, osteoporosis, infertility and miscarriage, neurological conditions like epilepsy and migraines, short stature, heart disease and intestinal cancers (4x greater risk than the average person).
(above info from celiac.org)
😮 - What happens when I ingest gluten?
I know within 5-30 minutes if I’ve been “glutened.” I bloat up painfully bad, looking like I’m pregnant with triplets. Can’t breathe. Blacking out. Feels like poison in my body. Confusion. Brain fog. Screaming in abdominal pain. Nausea. Sobbing. Extreme dehydration. Painfully itchy rash. Depression. Begging for it to end. Migraines. All.. at.. once. 😭
For me, It takes anywhere from 1-14 days to somewhat physically, mentally, and emotionally recover. It takes my body weeks to months to recover from the damage it did to my small intestine. Just… a… crumb. There’s nothing I can do besides let it run its course.
😨 - What does this mean for me?
Being hyper-aware… 24/7. Memorizing ingredients. Spending hours in the grocery store reading food labels. Understanding labeling food “gluten free” in America means it can still contain 20ppm of gluten - meaning I cannot have it. Gluten free toilet paper. Shampoo. Tampons. Hand soap. Cleaning products. Makeup. Tampons. Avoiding construction with dry wall (gluten in it). Anxiety before every meal. Wiping counters down and washing hands 3 times to ensure no cross contamination. So much more.
Being a foodie and having that taken away from me. Only being able to eat at 3 restaurants because no one else has safe measures in place… and it is still a gamble. Missing out on food I grew up loving. Products I loved, never to be used again.
👯 - Going to Social Events with Celiac
My husband brushes his teeth up to 7 times a day - every time he has gluten, he brushes so we can kiss and I don’t get sick.
I’m nervous to touch hands or even for you to touch my skin with a hug.. as I’m not sure what has been in your hands and if my skin will break out in a rash.. or if I touch my face after touching your hand and something ends up going into my mouth.. and then I’m sick.
Getting excited there’s food for me, but seeing it’s too close to something with gluten, or people may have cross contaminated by grabbing other things, then stuck their hands in what was gluten free.. no longer making it safe for me.
It is extremely taxing to be this hyper-aware while trying to have a good time.
🥰 - What I want you to know
• Never stop asking questions.
• It makes me cry when you make something gluten free for me. In a good way, The gesture is so kind… in a sad way, I’m also terrified of cross-contamination in the cooking area and don’t want to upset you by not eating it.. it’s just safest if I don’t.
• It’s been 4.5 years and I still cry about restaurants I can no longer eat at. I would sit at the table guarding my water while everyone else gets to eat appetizers, entrees, and desserts. I’m just trying to hold back my tears. It’s no one’s fault.. not even my own.
• Gluten free fad diets have hindered education on celiac disease and allergies. Evidently it’s cool to eat gluten free, so restaurants adapt it.. when 98% of it isn’t safe for someone who medically needs a 100% gluten free diet. I will tell you, gluten free foods are more processed than processed foods. Unless you’re eating naturally, or course.
💚 - Wrapping it up
Celiac disease is scary, and I can’t do it alone. My support system means everything to me and I’d be honored to add you to it.
It’s hard to go to social events because my life will never be the same, and there is no cure for this. It’s fu***ng depressing.. but I get stronger every day. 🫡
If you know someone with celiac disease, just know it’s never easy and asking 1000 questions when you’re confused makes us feel so seen.
I love you all and if you read this, I love you even more. Thanks for being here ❤️
