My spouse is inconvenienced by my new celiac diagnosis

celiac inconvenience
On today’s Dear Gluten Dude podcast, we’re talking about the frustration of a new celiac diagnosis, well meaning friends who say the wrong things and a future spouse who feels inconvenienced by his wife-to-be’s new disease.

Podcast Transcription

Welcome to Episode 4 of Dear Gluten Dude where I answer emails sent to me from the gluten-free community regarding a whole range of topics. Today we’re talking about the frustration of a new celiac diagnoses, well meaning friends who say the wrong things and a future spouse who feels inconvenienced by his wife-to-be’s new disease.

As always, no sponsors here but I do have a mobile created specifically for the celiac community that I promise you will help you live a much better gluten-free life. Check it out at GlutenDude.app. Ok…on to the inbox.

“Thank you so much for the candid website. I am partially diagnosed, meaning my numbers were high but I have to wait four to eight weeks for the biopsy to come back, but they were high enough that the doctor said it’s most likely Celiac disease. I will only receive dietician support and resources once that comes back.

This journey has been so, so frustrating. Hearing well-meaning family members tell me “it’s healthier.” and “You’ll get super fit.” and “There’s plenty of GF options out there!” just adds on to the frustration.

Having a fiancé who is supportive until he HAS to cook dinner on his cooking nights, otherwise I’d have nothing to eat that’s safe the next day, is disheartening. While if he doesn’t cook, he can pick something up at any restaurant and eat pasta that will reheat the next day. Basically he’s supportive until it’s an inconvenience. I have felt incredibly alone, bitter and downright angry over this diagnosis.

Thank you SO much for this website. It’s refreshing to have someone finally state how I’ve been feeling. Yes, it’s great to have a diagnosis, but it’s overwhelming. Nobody in my life understands the frustration. I have ordered your book, and will continue to find support from this website.”

Wait a minute. You have to wait 4 to 8 weeks for your biopsy to come back? Did you get your biopsy taken on Mars? What in the world is wrong with our health care system?

Anyway, I hear you on the frustration and you are not alone. I have received tons of these types of emails over the years from people just like you. Getting diagnosed is an absolutely overwhelming experience and you have every right to feel the way you do. Your entire life has been uprooted. Not only do you have to watch every morsel of food that goes into your mouth, but there is the issue of cross-contamination, the lack of eating out spontaneously, the extra expenses…am I making you feel better yet?

My point is, while ALL these things get easier as you adapt to your new life (I swear they do), what you are feeling now is REAL. And it’s normal. You don’t need to explain it to people and you sure as hell don’t need to apologize for it.

I have a page on my glutendude.com website titled “Advice for the Newly Diagnosed” and it’s 36 pieces of amazing advice from 36 different people who have been in your shoes. It’s things that I wish I knew when I was diagnosed. It would have made my transition so much easier. I will leave the link in the transcript of this podcast on my site and it’s also one of the first sections of my book when you receive it.

As for your well meaning family and friends, I wouldn’t be too tough on them. They honestly have no idea what you are going through with your new diagnosis and my guess is that their just TRYING to say the right things. And failing may I add, but at least they’re trying. But boy do we all know that going 100% gluten-free has NOTHING to do with “getting fit” or “losing weight”. I gained 15 pounds my first year of celiac. Why? Because my intestines were finally absorbing nutrients and I wasn’t slowly starving my body. That and the fact that I ate all of the crappy replacement foods in the beginning; gluten free pizza, gluten free bread, gluten free cookies. You get the picture and that is a podcast for another day.

Now…I don’t wanna play marriage counselor here, especially since you’re not even married yet, and this is absolutely none of my business, but I see a big old red flag with your fiancée, who already feels your very serious autoimmune disease is an inconvenience. You are going to have this disease for life. I know…it sucks. But choose your partner wisely. And that goes for everyone who is listening out there.

I’m not sure what I would’ve done without Mrs. Dude. The day of my diagnosis, she was more on board than even I was. She immediately scoured the kitchen, purchased new kitchen items for me, created a completely gluten-free zone that was off limits to my kids, who were 12 and 9 at the time and then gave me the death stare when, after being sick for over a year before my diagnosis, I said I couldn’t guarantee that I will stay on the diet 100% of the time. Yeah…not smart. And as a side note, no I’ve never cheated.

I will leave you with one of my favorite quotes: “Choose your life’s mate carefully. From this one decision will come 90 percent of all your happiness or misery.”

Wishing you a healthy and wonderful celiac journey. Any questions, you know where to find me.

—-

And that’s a wrap of Episode 4 of Dear Gluten Dude and I thank you for listening. If you’ve got questions about living with celiac disease, send me an email and I’m more than happy to help. Just head on over to glutendude.com and send me a message and who knows it may even become its own podcast episode. And please do not forget to check out my mobile app over at glutendude.app. Eat safely. Save money online. Find gluten-free beer. Connect with others. If you’ve got celiac disease, this app will make your life better. I promise.
Til next time my gluten-free friends.

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2 thoughts on “My spouse is inconvenienced by my new celiac diagnosis”

  1. Dear Newly Diagnosed Celiac,
    My ex-husband was the same. Our sons were 3 & 5 years old. The tests to diagnose me took over 6 months and I lost 25 pounds. Finally with my diagnosis, I had an answer to why I’d been so sick, but I couldn’t cook for my family. I told my husband that he would have to start cooking for the kids and himself because I couldn’t without tasting it. He yelled at me face to face saying I HAD TO!
    I was a gym manager then and I changed my classes to teach & train in the early evening, just to keep myself away from tasting my kids’ food. He refused to understand… thus the EX.
    Just watch out to see if his attitude continues. Take care of yourself! XO

  2. Oh wow, I have heard stories similar to this many times – this and worse. Dude’s advice is well -taken. There is a grief period following diagnosis that everyone goes through – however long it takes – it takes. That’s all. You are not alone with this- ever. Lots of support out there on line and in person from those who have been through this. The anger and grief are normal. Spouses- to-be– or existing, will either get on board and be helpful- or not. There is no middle ground. That choice is yours to work it out with him- set boundaries you can live with and don’t push. He will either come around eventually – or not. Give him time to adjust and if he sees how well you are doing, it might help. Lots of sources: to learn what you need to know 1) Dude’s book is excellent 2) gluten.org/getting started 3) celiac.com, Beyond Celiac, and NCA all have excellent guides for beginners. First, you need to educate yourself about label reading, shopping and setting up a kitchen. Then you can help him understand your needs and what he will have to do. I am very sorry you have to wait for those results- that’s crazy!- I suggest you ask the doctor to order a genetic test to see if the genes are present – it can take maybe 2 weeks or less and insurance sometimes covers it if coded properly. The results will say if the genes are present – or not. Good luck and yell if you need help!

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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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