Diagnosis and gluten-free -- Five Years Later

[tspiggy]

Hello, fellow celiacs!

It's been a long time since I last prowled this forum, newly diagnosed, terrified and looking for answers that my doctor couldn't provide. A wise soul with the user name Irish Heart told me at the outset to not let the disease define nor confine me. In the five years since my dx on 10/11/12 I've taken her advice to heart. With the unwavering support of my husband, daughter, friends, GI doc and nutritionist, I've learned how to manage the disease while living an entirely normal life and want to assure the newcomers here that you can eventually do the same.

At the time of diagnosis I had endured 18 months of hell. Insomnia, raging anxiety, balance issues, tingling extremities, crippling fatigue, upper abdominal pain. The weight loss was so rapid that I feared the worst. Four different doctors gave me four different misdagnoses. When I was finally diagnosed I was relieved to finally have a name for my condition. But I was still scared and faced the daunting task of making an immediate, life-changing dietary change. Celiacs can't simply ease into gluten-free.

It took time, and a lot of trial and error, to finally get the gluten-free diet down to a science. Like many folks here, I made a lot of mistakes in the beginning. I cried a river on my first post-dx grocery shopping trip, spending far too much money on gluten-free food that tasted like cardboard. I lamented the loss of a “normal” life. Eating out seemed too intimidating and risky. I accidentally glutened myself a few times and spent sleepless nights worrying about the possible damage I'd done to myself. My wonderful nutritionist, whose brother is also celiac, patiently spent an hour with me reviewing what to look for on ingredient labels and suggested sticking to whole foods that are naturally gluten-free just to keep things simple at first.

Once I got the hang of the gluten-free diet my body quickly responded. All of my physical symptoms resolved within six weeks (the anxiety, on the other hand, took two years to gradually subside). I gained back the weight (and then some, thanks to discovering Trader Joe's gluten-free mini cupcakes :-)). Today I practice yoga six days a week and do cardio and strength training on alternate days. I can easily modify any recipe. I no longer ask my husband or daughter if something they brought home is gluten-free; they know what to look for and I trust them to have checked it first. I take my own food to weddings and other social events, and everybody understands. I have a list of restaurants that I know are completely safe, and I've learned which brands and foods cause a rare cross-reaction. For example, I can't eat oatmeal, not even from dedicated gluten-free brands. The only salsa that doesn't cause a reaction is Amy's. Last summer we went to Ireland and the UK, where nearly every restaurant has a gluten-free menu and follows proper protocol to avoid cc. We discovered a wonderful restaurant in London named Niche, in which the entire menu is gluten-free and delicious. I loved picking off my husband and daughter's plates, secure in the knowledge that everything was safe.

At 54 I feel strong, healthy and happy.

I was lucky that my disease was caught before related complications set in or other AI diseases developed. I don't have follow up blood work and have not had any follow up endoscopies since the first one. Both my GI doc and nutritionist agree that as long as I have no deficiencies and feel well there's no need. I do continue to have an annual physical with thorough blood work that goes above and beyond the typical (10 vials), and everything has come back normal. Some members here may disagree with my approach, but it's worked for me for five years.

Which leads me to: no two celiacs are the same. What works for me won't necessarily work for you, and vice-versa. If you're feeling well, congratulations. But please be understanding of those who continue to struggle with symptoms and/or are also battling additional health issues. What works for you likely won't work for them. If you're feeling poorly I'm truly sorry, but that doesn't give you the excuse to scare the hell out of people, especially newcomers looking for answers. One of my first posts five years ago asked if it was ok to occasionally cheat on the gluten-free diet (I've since learned that it's not, and have never cheated). Within an hour I was bombarded with sixteen semi-hysterical responses, mostly consisting of all caps, multiple exclamation points and “helpful” links to articles of dubious merit linking celiac to cancer. Instead of assurance those responses only terrified me more. The aforementioned Irish Heart provided one of the handful of reasonable responses that talked me down. We're all here to support each other, regardless of where we are in our gluten-free journey.

So...to the newcomers, welcome. Have a look around, take what you need and discard what you don't. To the veterans, keep fighting the good fight and thanks for your help. May we all be happy, may we all be healthy and may we all be free from suffering.

Namaste.

[kareng]

Thanks for sharing this.  I let Irish Heart know so she can read this post.

[Victoria1234]

3 hours ago, tspiggy said:

One of my first posts five years ago asked if it was ok to occasionally cheat on the gluten-free diet

I'm so curious to read it, but cannot find it! Was it under tspiggy?

Plus I'm so glad you are doing so well!

[kareng]

8 minutes ago, Victoria1234 said:

I'm so curious to read it, but cannot find it! Was it under tspiggy?

Plus I'm so glad you are doing so well!

If you go to her profile ( by clicking on the pink T) you should be able to find some of her posts....maybe all

 

[Victoria1234]

46 minutes ago, kareng said:

If you go to her profile ( by clicking on the pink T) you should be able to find some of her posts....maybe all

 

I did exactly that, and read them all.

[tspiggy]

3 hours ago, Victoria1234 said:

I did exactly that, and read them all.

I did the same and didn't find my very first one, either.  Perhaps the site doesn't save posts older than 3 - 4 years.

[Victoria1234]

1 hour ago, tspiggy said:

I did the same and didn't find my very first one, either.  Perhaps the site doesn't save posts older than 3 - 4 years.

Oh they do! I've read back over10 years and more.