How do I get my family to take celiac disease seriously?

celiac is a real disease

This is a tough one. A young woman writes to me, explaining that she is stuck at home for financial reasons, but her family doesn’t take her celiac disease seriously and has pretty much written her out of the picture. There is a lot to unpack here. And as always, I do my best and I share what it is truly like to live with celiac disease (hint…it sux), hoping the family will “get it”. The response is also kind of a love story. Enjoy.

Podcast Transcription

Hey everyone. Gluten Dude here. Hope you are all well, two points of interest before I kick off this podcast. Number one very exciting news. I got a carpet in my home office. Since I’ve been doing this podcast, we’re in a condo in Asbury Park, beautiful downtown Asbury Park, New Jersey. And my home office did not have a carpet. So my first What 10 podcast now may have been kind of echoey echoey echoey, echoey, echoey. So I’m hoping the carpet makes the sound a little better. And the second point of interest is this podcast is going to be a little different. It’s an email from a young woman who is really struggling because she is financially dependent on her parents. But they don’t take her celiac disease seriously. Just wonderful. I know. So she is really pleading for help. So what I’m gonna do is I’m going to read her email, and it’s somewhat long, so hang in there. And then, as a response, I’m going to read a blog post that someone with celiac disease did on my site years and years ago. And it is the perfect response to tell people what it’s actually like to have celiac disease. Hint, it sucks. So on that note, let’s kick off the podcast.

You’re not just telling us what we want to hear. No, sir. No way.
We just want to hear the truth. Well, then I guess I am telling you what you want to hear.

And welcome to episode 11. What is dear gluten due you ask? I get lots and lots of emails. Over the years. I have over 1000 in my inbox, and each week, I’m going to take one email and read it to you and give the best response humanly possible. And I would always love for you folks to chime in as well.

As always, this podcast has absolutely no sponsors. But I always do mention my mobile app. Check it out like gluten do dot app, over 3000 restaurants, 10,000 locations, find gluten free beer, a forum, a private chat room, and lots more. So check it out at glutendude.app. Now, as promised, let’s head to the inbox.

You got my baby? Yeah

Dear gluten dude, I was diagnosed with celiac disease 16 years ago, I was 12. At the time, I found your website a long time ago and always thought about reaching out to you, but never really knew what to say. Nor did I want to waste your time. I feel like you understand a lot about this disease. And I love that you focus on what we go through on a daily basis. I’ve truly been through the wringer with this disease. And I’m lucky if I feel half decent to have seven days a week, while being 100% gluten free. From the age of about 12 to 18. I could cheat and we’ll be okay. Then everything changed. Then everything changed again when I was 23. And now again at 28.

I hate asking for help. But I need help with getting my family to understand what is going on. They keep downplaying it and think I’m exaggerating and compare me to other people they know that celiac, the aren’t nearly as bad as me to be more concise. I need one article that is concise and to the point that I can show them. I’m having troubles financially. And as much as I hate to bring in family drama. I need help financially for my family. But they think I’m using celiac as an excuse not to work full time. There’s enough money to go around.

But they won’t help me because I think I’m lying about how celiac has affected my life. Or that I’m not careful enough with my diet. It’s been 16 years. I know how to avoid gluten, they don’t understand how hard it really is for me. I’m getting backed up against the wall financially right now. If I can’t make them understand, I have to start getting labeled as disabled and seeking some sort of ultimate source for financial stability. They’re disinheriting me since I’m sick all the time, and they think I’m blown out of proportion. My equal share is all in need. But they don’t want to give it to me because I’m lazy.

I know how this email comes off. I’m pretty sick right now and ranting I probably sound like some kid with entitlement issue. And I’m sorry for that. I just want to make sure I can have a family one day, right now I would never dream of it. Because I know financial issues creep up as a result of my illness. I’m going to how good I can get things in my life. It will always be temporary. And I need to be prepared financially for being sick. So I need an article that can show them one make them understand that I’m truly sick five out of seven days a week. Two that this is happening to me even though I’m not making mistakes with my diet three that is impossible to compare me to other celiacs aren’t as bad as me for that I won’t get any better anytime soon and won’t just go away. And five that it will likely get worse and I’ll be faced with multiple challenges as a result of this disease in the future. We can’t even speculate right now, I’d really don’t know where else to turn.

I’ve been trying to find an article on your site to show them like can’t really find one that accomplishes it all. Like, only find ones that simply hint at it. Thank you so much for reading, I completely understand it be too busy to reply or even read this. It’s strange how I can devote this to you. Because I feel like I know you, but you don’t know me. I hope you’re doing well.

Well, that was a heavy load my friends, I am not going to delve into the family drama. And I certainly will delve into the financials. And I really don’t think there is one article that encapsulates all five points that you are looking for. So instead, I’m gonna read you something that someone sent me years ago, I received an email from somebody asking how he should best respond to his girlfriend who has celiac disease, when she does not feel well. So as I always I put it out to the community and I got some amazing response. But one response stood out so much that I made it its own blog post. So here’s what she has to say about how someone should deal with you when you have celiac disease. And maybe you can share this with your parents to get them to understand what it feels like to be in our shoes. And to take it a little more goddamn seriously. Alright, here’s the article.

So many times we look okay on the outside, and no one can see the bone we retire notice the aching joints, the fuzzy brain, or the war going on inside our bodies. We go to work when we don’t feel well, because we have to our sick leave is reserved for times when we simply can’t function at all. With a multitude of doctor visits that are sure to arise from other complications caused by the disease. Our tired when we’re gluten is not the same tire day you feel. There really should be some new word invented for the gluten tire that we feel that makes it almost impossible just to walk through the house. So don’t feel offended if she seems fine with people outside the home and then sick when she returns home. We often smile and chat with people because we feel we have to sometimes our jobs depend on it. Sometimes we have special occasions that we must attend and don’t want to be the guest that dampens the entire occasion. When we come home, we are spent physically and emotionally it takes a toll on everyone, but especially loved one to get the short end of the physical and emotional stick. In other words, know that we become good at smiling through the pain for others because we have to, but appreciate not having to do that with the ones we love.

She thanks to you for allowing her to feel safe enough to drop the act when she is with you. Sadly, many of us have loved ones that take offense and feel they are being treated worse than strangers. Don’t take offense if she doesn’t want to be touched at all. Know that sometimes a gentle hug or a caress can hurt my husband loves to put his arm around my waist. But if I’ve been glutened I will flinch and draw away as a reflex. When he can’t see as I feel like my abdomen is an overinflated balloon. I’ve even looked in the mirror sometimes thinking I must look six months pregnant. And I’m surprised to see that I look no different. The best thing is for the two of you to open the communication lines.

Know that advanced plans are scary for us because we never know from day to day how we’re gonna feel that event scheduled two months from now can’t be fully appreciated until the day before. I’ve actually been apparently basket case just before an event. And I’ve eaten next to nothing. We simply can’t get as excited at events on the calendar as others. It isn’t because we are excited to do things with you. We’re afraid that we’re gonna feel horrible on that date and don’t want to disappoint you. Sometimes things that are exciting for most people like cruises resorts and multiple destinations are scary for us. buzzwords, like all inclusive are particularly horrifying, because we’re locked into where and what to eat. Part of the fun for any trip is sharing meals. Unfortunately for us, that becomes the biggest stress and fear. If thrown a trip where we don’t speak the language and that fear is magnified. Be willing to be flexible. One crumb can make that dream vacation or even dinner and a movie become months of torture.

Be her champion. My husband is now a pro at questioning restaurant staff and talking to managers. When I feel like I just can’t talk about gluten across contamination. Another moment. He is a second set of eyes for little things like spoons being double dipped from gluten items into gluten free ones. He educates others, he doesn’t ask what he can do to help because he knows I hate being an invalid. Instead he says let me do that for you. Those six little words say more than all the Hallmark cards ever written. He takes over when I can’t function. Last February I came out of surgery and the nurse tried to give me a cracker and ginger ale and recovery. He was on like a dog with a bone and practically slapped the cracker out of her hand. This is the man I hope I never have to live one single day without.

And that my friends puts it wrap on episode 11 of dear gluten news as always, I so thank you for tuning in or millions of podcasts out there and you chose to listen to the little knee much appreciated. Till next time

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2 thoughts on “How do I get my family to take celiac disease seriously?”

  1. Just reading this brought tears to my eyes as I know it’s true-heard it from others. Point: the ADA (American Disability Assoc) now lists CD as a handicap and therefore open to those rules of employment, etc. For many, it really is a handicap not knowing how you will feel in 3 days or even 3 hours. It does make life difficult at times and often a downer for many at events. This is why we say “always take responsibility for your food and surroundings”. Call ahead to ask if a restaurant is safe for you, or an event like a wedding, if the meal can be made safe for you. May I respectfully suggest (if benefits are in place) if this family will agree to counselling in order to settle this issue. She is being disrespected in a very serious way and needs to come to grips with the situation. The family’s financial situation aside, perhaps contact local social services to see what is available in their area (like counselling) and other support services. This family needs help. Badly.

  2. I really have a hard time responding to this because it’s so triggering of my own abuse trauma. But I didn’t want to leave someone who’s upset without support. So all I will say is, it’s not you it’s them. This fits a pattern of family abuse. My family is a bunch of perfectionist Eastern Europeans and the word lazy is somehow considered the worst weapon ever (by them). It took me a long time to mentally detox from that. A person can only keep up the pretense of being OK for so long. Ultimately this is harmful and counterproductive. It’s not encouraging or supportive, but honestly my family thinks they are being supportive with this tough love crap. But if you ask me, it’s just tough. Full stop. So I’ve disengaged. I’m lucky to have been able to do that.

    It’s not you, it’s them.

    When you’re still working through this, you might want to brutally cut out of your life anyone who hurts you. Then later, when you’ve had time to re-evaluate, you can pick your battles. But honestly at some point I told myself I’d rather be in a gutter than keep hearing their negativity. I’m not saying it was the best solution, but I had to face their toxicity with an equal amount of “GTFO of my life.” There are no perfect choices in such a situation.

    You are enough. You do try, you do what you can and it’s enough.

    You don’t have to get their approval. They are the ones using money=love. Not you.

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Who I am. And who I'm not.

Who I am. And who I'm not.

I AM someone who's been gluten-free since 2007 due to a diagnosis of severe celiac disease. I'm someone who can steer you in the right direction when it comes to going gluten-free. And I'm someone who will always give you the naked truth about going gluten free.

I AM NOT someone who embraces this gluten-free craziness. I didn’t find freedom, a better life or any of that other crap when I got diagnosed. With all due respect to Hunter S. Thompson, I found fear and loathing of an unknown world. But if I can share my wisdom, tell my stories and make the transition easier on you, I’ve done my job.

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