There is no manual for living with celiac disease. No how-to guide to navigate your new life.
I assume when you received your diagnosis, you got pretty much the exact same instructions from your doctor that I got from mine: Don’t eat gluten.
So we walk out of the doctor’s office a bit terrified of our new life in front of us, but feeling a bit relieved that all we need to do is give up gluten and we’ll be just fine.
But damn…here I am six years later and we all know it’s just not that clear cut.
What we need is a how-to guide that covers all of the emotional, social and physical aspects of living with celiac disease. We need something so that those diagnosed with celiac disease in the future have a go-to resource on how to cope best with their new life.
Well guess what…we as a community are going to create that how-to guide (and no you won’t be getting paid).
Here’s my plan…after reading the below email I received, I’d like you to include some tidbits of information that you wish you knew when you were first diagnosed. What advice would you give to the newly diagnosed? Not necessarily what foods to avoid because anybody can look that up. But what have you YOU learned from living with celiac disease that you wish you knew when you were first diagnosed.
When it’s all said and done, I will create an eBook called “Celiac Disease: The Manual” and make it available on my website and Amazon. How cool is that???
Keep in mind…the idea of the book is not only to educate but to empower; to give those newly diagnosed the strength and knowledge they need to get busy living.
Just one request…no fear mongering please. That’s not helpful to the newly diagnosed.
Ok…to kick things off, here’s an email I received that actually gave me this idea. It has some phenomenal advice in it.
What can you add to it??
Dear Gluten Dude,
I’m not sure if this is a rant or what it is so I’m just going to let it flow!!
Its been a year and a half since my celiac diagnosis, I have just found your blog, and I am obsessed. I feel like I’ve finally found something that describes how I feel most days, an unusual and indescribable mix of empowerment (through my diagnosis and “self managed” disease), overwhelmed, frustrated, happy, healthy and sick. All at the same time.
I wanted to write to you about the things that no one tells you about having Celiacs or an unexplained gluten intolerance. Some are good. Some are bad. But there is no manual. There are very few doctors who understand. And depending on where you are in the world (I am in Australia), there is so much ignorance and misinformation. It can be difficult and frustrating and isolating navigating it alone.
Some of the things that I wish someone had prepared me for:
- From day one, your illness will be trivialized. From the doctors who diagnose you, who can make it seem that going gluten free is the easiest thing in the world, to anyone you speak to who tell you “there are so many gluten free things on menus now, there’s never been a better time to do it” (like it was a choice), to the waiters that roll their eyes at you. Rise above it.
- It is surprising and alarming how many food professionals have absolutely no idea what they are putting in to their food.
- Some symptoms will lift immediately. For me, the migraines (which I didn’t realize were related until after they stopped), the extreme bloating and pain ceased very quickly. Others will take awhile. Be gentle. Know that your body will take a while to recover and that is OK.
- A lot of people go “Gluten Free” for weight and diet reasons. You very well could gain weight. I personally have been severely underweight for a long time. I gained 7.5 kilograms (16.5 pounds) when I stopped eating gluten. Roughly 15% of my body weight. Even though I was now eating a lot less, my body had not been absorbing what I had been eating. Weight gain was a very unexpected side effect!
- There will be a break down of some or many of your relationships. This illness can be debilitating and socially ostracizing. Either you will tire of the people who tell you how they eat gluten free for “health reasons” and its SOOOO easy, or they will tire of you, because you are now a “burden” at social engagements.
- You will spend a lot of time apologizing for your illness. Over time you will stop doing this, but particularly in the beginning you will feel like a burden. Sometimes its easier not to eat than it is to “cause a fuss”. If any one makes you feel like this – it’s easier to remove them from your life than it was to remove gluten so feel free to do that.
- Research has indicated that there are significantly higher levels of depression and anxiety among those with Celiac Disease, in particular young adults. Celiac disease is 24 hours a day, with no end in sight. Most days it is OK, and you get used to it, but you cannot switch it off, you are constantly in a state of high alert, because anything that you put in your mouth can make you sick. More knowledge and awareness and comfort will lesson this, but it will never go away. Do not let it consume you.
- Check the ingredients of EVERYTHING. Gluten is a filler and hides in the most unexpected places. Some recent places that I have found it – Oral Contraceptive pill, Cold and Flu Tablets, and other medicines. Again – Ignorance from medical professionals mean that you can and will still be diagnosed with tablets that contain gluten. Always always always double check.
- You WILL start to feel better. Your eyes will become clearer, the fog that you felt in your mind will lift, the migraines will end, the pain will end, any nutritional deficiencies you had will even out.
- There is something empowering about knowing that you don’t have to take medication, and you can (to a large extent) control this illness.
- While you will lose some relationships, you will gain others. You will gain a new appreciation for people who have a basic respect and thoughtfulness for you, and the little things will become big things.
- There will be some long days, and hard weeks that turn into months, but you will discover a strength you didn’t realize you had, and instead of feeling isolated, and isolating yourself, you will search deep into your own soul and the values of those around you, and surround yourself with people who make you feel exactly how you should – that celiac can suck, but it is not your fault, you are not a burden and you are not alone.
I was wondering if you or any of your readers had any other things? The things that having this disease has taught them.. Good and bad?
Thanks again for the blog; finding it came at a time of a lot of soul searching and reflecting and it has really helped, and I’m sure it has done the same for others.
Ok future book contributors…what advice would you give to the newly diagnosed?
(Dude note: I should add that there are a number of wonderful books on the market about celiac disease. The idea is that this one, instead of coming from one voice, will come from hundreds of different voices.)