Celiac Disease Awareness

[Squecca]

May is celiac disease awareness month so I thought I'd raise some awareness on a very misunderstood condition!

Celiac Disease Awareness (Outside of the US, it's often spelled Coeliac)

•Celiac disease is a genetic autoimmune disease triggered by the activation of the HLA genes, most notably HLA-DQ1 and HLA-DQ2.

•It is a condition that causes the sufferer’s immune system to attack the small intestines when gluten, a protein found in certain grains such as wheat, rye, and barley, is consumed. Repeat exposure can completely shave down the intestinal villi!

•It can be identified through endoscopes, biopsies, and blood testing.

•There are about 2-3 million Americans diagnosed with it, and an estimated 1 in 100 people worldwide suspected, but only 30% are diagnosed.

•Without treatment, it can cause permanent intestinal damage, osteoporosis, some types of cancer, brain damage, malabsorption, infertility, and even death.

•Celiac disease arose 10,000 years ago, was given a name 2,000 years ago, and its association with gluten was discovered in 1953.

•So far, the only treatment is to eat gluten free. Celiac disease has no cure and can not go away.

•A celiac can only eat as much as 20 ppm (parts per million) of gluten before being damaged. That is about a particle, or a fraction of a bread crumb.

•Gluten is not required to be labeled on foods, medicines, or any other product in the United States, despite being required in 85 other countries, including the UK, the European Union, Canada, Australia, Russia, China, India, Mexico, etc.

•The US FDA legally allows gluten to be hidden in ingredients (including the vague “natural flavors” and “artificial flavors”) KNOWING that it is sickening and killing celiacs.

•There is more stigma, bigotry, and ableism surrounding celiac disease than nearly any other autoimmune disease, digestive disease, or food allergy.

•There is significantly less national funding for the research of celiac disease than other similarly common medical conditions. It received some of the lowest amounts of NIH grants.

•The FDA declared in 2021 that sesame be required to be labeled on food products, despite there being much more people who have celiac disease than people who have sesame allergies. (Obviously a huge win for people with sesame allergies though!)

•Because of the rampant stigma, bigotry, and ableism surrounding celiac disease, we have seen many celebrities, politicians, and companies make fun of celiac disease and its sufferers at a rate that we have not seen with ANY other medical condition. Notable bullying perpetrators include: Disney, NBC, Netflix, Party City, Jimmy Kimmel, Jimmy Fallon, etc. That's how normalized celiac disease stigma is!

•Gluten free food costs 158-242% more than its gluten-filled counterparts, and tends to have more calories.

•60-70% of diagnosed celiacs are women, and female celiacs tend to have more severe symptoms than male celiacs.

Fun-ish facts after all that depressing stuff:

•Bananas were thought to be the cure for celiac disease before the gluten component was discovered because people on an all-banana diet had fewer symptoms (but because they weren’t consuming gluten lol)

•The relation to grains was in part discovered when celiac patients happened to feel great during grain shortages (while everyone else was hungry and weaker)

•Even if you have both of the HLA gene mutations for celiac disease, there is still only a 3% chance you'll develop it! However, some people develop celiac disease with only one of the gene mutations. And remember, if you have the gene mutations, you can develop celiac disease at any time, even if you're old!

•If you have a family member with celiac disease, you have a 10% chance of developing it too. If you don't have any family history, you have a 1% chance of developing it.

•People with celiac disease are less likely to get breast and lung cancer <3

•A gluten free diet has been shown to decrease schizophrenia symptoms.

•Since making this post about a year ago, 2 more countries have started requiring the labeling of gluten! Unfortunately the US isn't one of them. The best thing that can happen for us American celiacs would be for the FLMA (Food Labeling Modernization Act) to pass! Please contact your local representatives about this! It would help a lot more people than just celiacs! Links will be at the bottom of the post.

I hope you learned something, and feel free to ask questions!

Recommended reading: https://tinyurl.com/2p97bnx6

Submit a comment in support of gluten labeling: https://www.regulations.gov/docket/FDA-2023-P-3942/comments

Support the Food Labeling Modernization Act (FLMA) and the Allergen Disclosure In Non-food Articles Act (ADINA): https://www.beyondceliac.org/connect-with-the-community/advocacy/

[HeavenScent.]

I didnt know too much about celiac disease prior to reading this. Thank you so much for making us all aware of this disease <3

[Red_Lyrium_Diance]

I have Celiac Disease <3 My mom also has it

[Squecca]

I didnt know too much about celiac disease prior to reading this. Thank you so much for making us all aware of this disease <3

Thank you for your response! I am glad I can teach people

I have Celiac Disease <3 My mom also has it

Ahhh sorry to hear that! Hopefully you guys can manage it well!

[CryptidHunter_425]

I have Celiac so it's nice to see something like this!!

[Squecca]

I have Celiac so it's nice to see something like this!!

<3

[HeartFlowerCat]

I didn't know about Celiac disease, thank you for the info!

[Squecca]

I didn't know about Celiac disease, thank you for the info!

Thank you for reading! <3

[WarriorcatKitty]

This is some good info!
I've been tested for celiac as I am a t1 diabetic, and since they are both autoimmune disorders, t1s have a higher chance of having it as well. They said I don't have it, which is good, but I do think I might have some sensitivity to wheat, not entirely sure. Gluten sensitivity seems to run in my family as my grandma is doing gluten free now from discovering she had some issues with it, and my mom has always said how wheat tends to make her feel really bad and sluggish so idk
I still eat gluten often but it does seem like maybe when I have high amounts of it at once, it messes with my stomach a bit

[Squecca]

This is some good info!
I've been tested for celiac as I am a t1 diabetic, and since they are both autoimmune disorders, t1s have a higher chance of having it as well. They said I don't have it, which is good, but I do think I might have some sensitivity to wheat, not entirely sure. Gluten sensitivity seems to run in my family as my grandma is doing gluten free now from discovering she had some issues with it, and my mom has always said how wheat tends to make her feel really bad and sluggish so idk
I still eat gluten often but it does seem like maybe when I have high amounts of it at once, it messes with my stomach a bit

I'm sorry about you and your family's struggles! People with celiac disease are also more likely to have t1 diabetes, which I've been tested for as well! My blood sugar just runs high though.
The longer you go untreated with celiac disease, the more likely you are to develop additional autoimmune disorders. Thankfully, I was diagnosed at 2 and have been on the proper diet ever since, so hopefully I don't develop any other autoimmune issue. But autoimmune diseases do run in my family
I hope your grandma feels better now!