Hey everyone. Happy Friday. I took about an hour this morning responding to as many of your emails as possible. Yeah…I’m ridiculously backlogged. I can’t respond to every email but I do indeed read them all. It’s absolutely eye-opening how this disease affects us all so differently; physically, mentally and socially.
Today…I thought I’d do a bit of a theme. Three young celiacs reached out to me recently asking for advice on what they are experiencing. And who better to offer advice than this wonderful community. Except for the person that called me Gluten Douche…no need to pipe in here. (That name still cracks me up.)
Anyway…here are the three emails. Any help and guidance you can offer would be much appreciated.
Hi Gluten Dude. I am a 17 and I live with my parents who do not support me with my celiac. They buy the celiac safe foods but do not support me emotionally or in any other way. They tell me i’m overreacting and say that they do not care when i get cross contaminated or anything because apparently it is my fault. I don’t have any support from anyone else either other then maybe one friend that i never can even see because my parents won’t allow contact in person because he is male. Can you please help me? i do not know how to make them understand or anyone else understand.
Dude response: While I don’t understand why so many people don’t take our disease seriously (maybe I should ask Party City), I will NEVER understand why a parent wouldn’t take it seriously. And I get these kinds of emails a lot. Makes me so sad and so frustrated. Ok…first off. IT IS NOT YOUR FAULT. Please take the blame off yourself. Your parents have no right to treat you like this. In this day and age, with the world of information at our fingertips, there is simply no justification in claiming ignorance anymore. If your parents don’t understand and aren’t supportive of your celiac disease, it’s on them. NOT YOU. How do you make people understand? I’d like to say “education” is the answer but I know it’s tough to educate ignorant people. Send them to celiac websites that you trust. Talk about how untreated celiac can lead to a number of other serious health issues. And if they still refuse to support you? You have some decisions to make. Hang tough.
Dear Gluten Dude. I was diagnosed with celiac when I was 12, I’m now 17. I would also like to ask your advise on something. I go to a rather small school where everybody knows everybody, and because of this everyone knows of my celiac disease, seeing as I’m the only one in the school who has it. I recently found out that our nutrition teacher has been teaching her students about celiac, but the information she gives them is incredibly false. She’s has said that celiac disease is reversible, and the only reason doctors don’t tell us that there is a cure is because they want to keep shoving drugs down our throat. Because of this people take me as serious as they used to, and try to tell me that all I have to do is change my diet and I’ll grow out of it. I really want to go to the teacher and inform her how wrong she is, but she honestly scares the living daylights out of my introverted self. Please help me figure out what to do.
Dude response: I know in this day and age, it seems like facts don’t matter. But they do matter. So let’s talk facts. So Fact #1: Celiac disease is not reversible. It’s with us for life. There is NO CURE. And there is only ONE treatment: a 100% gluten-free diet for LIFE. Fact #2: There is no drug to treat celiac disease. And that may be why the medical community is still so ignorant about it. There is no financial motivation for them. That is the sad world we live in. Fact #3: Your nutrition teacher sucks. If you don’t feel comfortable talking to your teacher (and believe me, I was there at your age too), what about your parents? Someone has to come to bat for you. If not, you’ll need to speak up on your own. Not easy, but you can do it!!
Hi Gluten Dude. I️ am 12 years old and two months ago I was diagnosed with celiac disease. I️ don’t have any friends with this and the girls in my friend group don’t understand i️t at all and it really annoys me. I️ asked my teacher a question about the digestive system, casually mentioning I️ had celiac. The teacher did some research about celiac because the question I️ had asked could only be answered if you knew what it was. The next day he said he had done some research on celiac. He then started explaining to me that people with celiac can’t have gluten and he was saying stuff like “I️ don’t know how much you don’t eat gluten.” I️ know that’s not very clear, but he acted like it was no big deal and I️ didn’t know what it was, and I️ felt stupid for asking a question about I️t.
I️t hit me then that people just don’t understand what it’s like. Also, my friend’s dad tries to talk to me about it because he is also gluten and dairy free (I️ didn’t mention but I️ am dairy free too), but it really annoys me because he does not take the diet seriously at all. He has cheating days once a week, that is so different from my 100% gluten free diet I️ have to follow. Every food I️ eat I️ look up to make sure I️t doesn’t have gluten, everywhere I️ go I️ need to make sure my food isn’t contaminated (as I️’m sure you do and can relate). It’s hard watching celebrities say things like “I️ feel so good without gluten and I️ am so much skinnier” and friends saying “oh just don’t eat gluten it’s ok,” because no it’s not ok. I️’m sorry for this long rant!!! I️’m hoping you can relate to this. I️t would mean so much to me if you responded to this with some advice. I️ feel like no one understands what it’s like. Thank you so much for taking the time to read this.
Dude response: Don’t ever feel stupid about your disease. It seems to me you’re pretty darn smart. Please don’t take ANY advice from someone who cheats on their gluten-free diet. They are not to be trusted. And believe me, I know how much the celebrities hurt our cause. Heck, I even wrote a personal plea to Kim Kardashian to knock it off. One of my favorite sayings is “You cannot control what other people say or think. You can only control your reaction to it.” I know easier said than done. Stay strong!
To all three of you awesome people, I have a forum where you can connect with people your own age. Perhaps that can help. Check it out.
Ok…that’s all I got. Can anyone else chime in?