Social Media is great. Heck, I can use it to vent a great deal of frustration rather than annoying my husband all the time. At the same time, it can be a constant source of frustration and disillusionment. Today is about social media posts.
I read these things all the time and it makes me angry. It makes me believe people don’t understand this disease. Here are a couple of my responses….
“I’m super sensitive and cannot tolerate any amount of gluten” – I’m so sorry. Eating whole foods, certified gluten-free products, living in a gluten-free home, and only eating at gluten-free restaurants will eliminate the possibility of getting glutened.
“I was off gluten for 2 weeks before my tests. Are they wrong?” Unlikely assuming the doctor ran all appropriate testing.** It can take up to 2 years for those with celiac disease to get their blood tests into the normal range. Two weeks of no gluten will not affect the results, but 6 months might. Please consult your doctor for recommendations. If I need to do a post and specifically research this, I can!.
“Everybodys’ reactions are different” – Yes. You are right. Your reactions are specific to you and cannot be compared to anyone else. But you are not so special that all symptoms are gluten-related. So, know your body, eat the right foods, understand your reactions, and stop thinking every eye twitch is gluten-related. It isn’t.
Here are some universal truths – there isn’t enough gluten in a kiss to cause a reaction (probably got the reaction from somewhere else), airborne gluten reactions are not celiac related (one very rare case of this happening in literature, but it was wheat farmers working in wheat silos inhaling gluten), and going to the bathroom immediately after eating is normal. It is called the Gatrocolic Reflex.*
“I didn’t have a reaction, so the product must be safe” – Ask all of the silent celiac patients if they agree. Reactions don’t determine whether you have ingested gluten, only damage to your villi can tell that. If you really want to know if you got glutened, there is something called Gluten Detect. It is cook and will let you know if your symptoms are gluten-related or not.
“Is this the gluten rash?” – Unlikely. Less than 1% of people develop Dermatitis Herpetiformis and requires. If you want to know, please see your dermatologist for testing. Nobody online can tell you.
While this may be a little snarky or judgemental, it is the truth. So, use a little common sense and don’t worry so much.
*Gastrocolic Reflex – If you really want to test this one, here’s how. Don’t eat corn for a week. Eat corn. See how long it takes to come out. For me, it is about 12 hours. 🙂
** IGA Deficiency is the one variable that can throw off all celiac testing.