Dear Dude: Long Road. Just Diagnosed? Where Do I Begin?

new to celiac. where do I begin?

Oh my…I am so behind on emails…it’s mortifying. I’m going to have to do a big, great, huge, sizable, substantial, immense, enormous, colossal, massive, mammoth, vast, gigantic, monumental, stupendous, gargantuan, elephantine, titanic, mountainous, monstrous mailbag soon. It may take you days to read it but what else do you have on your plate?

For today, let’s focus on just one email. It’s from a woman who has struggled mightily and after seeing a plethora of doctors, finally got diagnosed with celiac disease (though it took some prodding from her to get tested. Big surprise there.) She’s a bit lost. We’ve all been there. Here’s her email. Please feel free to chime in with advice.

Dear Gluten Dude,

After I had a C section with my son in September 2011, everything inside me went wrong. I went to several doctors and requested tests and explained that I cannot pass stool the same and that I am always constipated and many foods bother me. Many doctors suggested medication and called it IBS.

Dude note: Just lazy doctors who don’t feel like digging deep so they call it IBS. I can guess what the BS stands for. Ok…carry on.

I knew there was more. I did my own research for years and after seeing 6 gastro doctors, two dieticians, my pcp, and Gyno for cramps down under (pancreas section), I told my gastro two weeks ago that I read a book and googled various stomach issues and I think I have celiac disease or leaky gut.

Sure enough, I got the blood work results two days ago; I have celiac. I was also diagnosed with GERD last year and with hyperthyroidism after my second birth in 2014. Gotta love my kids lol.

So I am trying to get on a super strict diet plan that eliminates all gluten. I know it’s expensive to shop for gluten free products. Not sure if I can eat pizza or multivitamins or anything that I just eat without checking ingredients. I love holistic remedies. I been feeling like shi* for 6 years and the last two years have been extremely awful and very painful. It’s almost impossible to even pass stool for days and I feel my intestines are hanging out through out this time – like I am 6 months pregnant all over again. It’s humiliating and worst of all, it hurts.

Where do I begin?

I’ve written about this issue many times here so what I’m going to do is throw some links out at you. No…I’m not being lazy. It’s a lot of content and I don’t want to overwhelm you. But trust me…follow this advice and you’ll be just fine.

1. Don’t Eat Gluten-Free Foods
Did I get your attention? Good. Yes, of course you need to eat 100% gluten-free but it me years to begin to heal after my diagnosis. Why? I was eating all of the garbage replacement foods. Pizza, bread, cookies, bagels, cereals. No, no, no, no, no. If you take one thing from this post, it’s this: Eat clean for at least the first few months. It will allow you to heal. I wish someone gave me this advice when I began my journey.

Link: https://glutendude.com/celiac-rant/stop-eating-gluten-free-foods/

2. Learn How to Go Gluten Free
A lot of the newly diagnosed really struggle with various aspects of completely overhauling their diet. It’s a whole mindset. Plus you have to know how to keep your home safe, how to eat out, etc. Lots to consider. I wrote a five part series about it many years ago. Still rings true today.

Link: https://glutendude.com/category/how-to-go-gluten-free/

3. Listen to the Celiac Community
It’s just an amazing community here. Some time ago, I asked them what advice they would give to someone just diagnosed. Their advice came from all angles and was just spot on. Heed their advice. You’ll be glad you did.

Link: https://glutendude.com/attitude/the-best-celiac-advice-ever/

4. Read My Book
I know this seems like a shameless plug (true…I have no shame), but this book is written for people just like you. I would not have written it if I knew it wouldn’t help those newly diagnosed and those still struggling.

Link: https://glutendude.com/ebook/book-about-living-with-celiac/

5. Don’t Live in Fear
You’ve got a life to live. Live it. Do not let celiac hold you back. It’s a bump in the road, but it’s a bump that is manageable. I promise.

Link: https://glutendude.com/newbies/do-not-live-in-fear/

Welcome to your new journey. It’s an interesting ride but you’ll come out on the other side better for it. Much better for it.

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6 thoughts on “Dear Dude: Long Road. Just Diagnosed? Where Do I Begin?”

  1. Joana Azevedo

    Be strong! Follow the 5 tips, one by one. Don’t try to do everything at the same time. There is a lot to do, not only gluten food elimination. Begin with eliminate the obvious gluten food and then every day try to learn more over the hidden gluten food and cross contamination, and apply one new rule everyday in your life. Step by step.
    You also need to find what is good or bad for you. Get a very balance life… because a autoimmune disease is a very serious and strong disease. Food, sleep, relax, work, exercise, have fun… you need all this but everything needs to be balanced in your life to give your body what he needs without being exhausted.
    You will find out that your body will take months to recouver… but if you start fighting today and change things today… you will have a little relieve every day… until the day you will say, finally this is not so difficult!!
    A stupid this that this disease brings is all the time you find that you have different or a new symptom. That is because the body is trying to find the best way to be healthy and trys to tell you that you need to adjust something that he needs or he don’t like. Try to listen him. With time you will understand him better.
    Everyday be patient with you body, do a deep breath, take a decision, move on, don’t look back!
    One day at the time.
    You can do it!!

  2. One of the worst parts of this disease is spending an hour reading labels and then getting sick anyway because the major drugstore chains don’t disclose the presence of gluten and the ingredients give no evidence that there is any. What we need is a law that requires companies to disclose the presence of gluten, not one that allows them to say it doesn’t without any testing. I’ve gotten sick from two different store brands of pain reliever recently. Neither had any ingredients that indicated gluten. One claimed gf on the website but not the packaging. I’m sick of trying to guess if something is safe. Our laws are a joke.

  3. As always, thanks Gluten Dude for your fun and knowledgeable writings.

    Dude is right, eat a balanced diet of real (lightly and mostly unprocessed) foods. Great advice Gluten Dude 🙂

    After seeing my ND, she told me the same thing as GD. She added that I should be eating 9 cups(before cooking) of veggies at each meal. That’s a LOT of veggies so I spread them out throughout the day, and occasionally fall short of that goal, but it has been very helpful in getting well. It was odd learning to eat things like broccoli and chicken for breakfast, but it sure worked!

    I’d add that eating organic (especially the “dirty dozen”) when possible. The less poison we eat, the healthier we can be 🙂

  4. The down and dirty reality: 1. Eat real food you cook yourself. Yes, you will probably have to give up a bunch of other things you’d rather be doing in order to prep and cook (alternate: you can eat the same simple food over and over again). 2. Find a few “emergency” snacks that are naturally gluten free and reasonably packable (e.g., almonds, bananas, an RX bar) so that you aren’t hangry when things go wrong and you can’t find real food. 3. Never eat out again. 4. Learn to smile at people as you say “F. you” when they wax poetically about all the “choice” you have in processed gluten free foods or how they sympathize with the difficulty you have in eating because they’re a vegan.

    That’s basically life with celiac disease.

  5. Dear GD: just diagnosed with CD and a great friend ordered your not so naked truth about CD. I sat down and started to read … then found it hard to put down.!!!
    This book has made the start of my new journey manageable and far less scary than i was lead to believe.
    My decision from the get go of my diagnosis was … I’m going to do whatever it takes to get back to my norm…. this, in retrospect has enabled me to tackle this crap shoot head on.
    I’m managing, I’m thriving… I’m winning.
    Thank you from the top of my intestines 🤣

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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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