What I’d Do If I Was Just Diagnosed with Celiac Disease
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This is Part 3 of my Conquering Celiac Disease series which outlines my personal experience with Celiac Disease. The other posts in this series include:
Part 1 – 10 (Embarrassing) Symptoms that Finally Made Sense
Part 2 – Why a Gluten-Free Diet Didn’t Fix Me
Also check out these other posts you may find helpful if you have Celiac Disease:
How to Avoid Accidental Gluten Exposure and Prevent Getting “Glutened”
Emergency Guide to Accidental Gluten Exposure (What to Do When You’ve Been “Glutened”)
Disclaimer: I am not a doctor or medical professional. This site is for informational purposes only and does not provide medical advice.
Hi! I have Celiac Disease, and I successfully manage it with no side effects. However…
I do not subscribe to the “just go gluten-free” only club.
Nope. I tried it and it didn’t work for me.
My lack of improvement led me down a path of deeper research, where I learned there was probably something that triggered my disease. But I’ll explain that more, later.
Thankfully, I now know what I need to do to avoid flares, but my understanding and approach did not develop overnight. It took me years of research, multiple doctors and a very smart wife to help me know how to handle my disease.
That being said… after living with this for over a decade, I can now tell you exactly…
What I Would do If I Just Received a Celiac Disease Diagnosis
(Remember, this is what I would do based on what I’ve learned about myself and how my body responds to certain foods, but that doesn’t mean it will work for everyone. We are all unique and it may take some experimentation to find what works for you.)
Let’s say I were just diagnosed.
I would probably type Celiac disease into a search engine, click pretty much any reputable article, and my solution-set seems straight-forward. It is also the treatment my doctor gave:
But, I just said that I don’t subscribe to that fanfare. While eating a gluten-free diet is obviously incredibly important for anyone with Celiac disease, I know now that for many (like myself), it is only a small portion of the answer. So, here’s the first step I’d add to that.
First, transition to a gluten-free HEALING diet.
You see, I used to eat the Standard American Diet. The acronym is telling: SAD.
Why is the SAD diet oh so sad?
Mainly because it lacks the balance and breadth of vital micronutrients that our bodies are screaming for. It’s loaded with highly processed sugar-filled and fried foods, inflammatory seed and vegetable oils, poor quality meat, high-sugar beverages, and low quantities of vegetables and other fresh produce.
Plus, it doesn’t have a proper balance of macronutrients to help sustain all of our body’s vital processes and peak organ function.
Basically, it does nothing to actually heal your gut or help your immune system start to function properly. It’s the exact opposite of a healing diet… it’s a diet that makes you sick.
So, instead of ranting for way too long, I’ll say that the trick to going gluten-free isn’t just doing a 1 to 1 swap of gluten-full flour to gluten-free flour (and everything that flour makes like pizza, pasta, pastries, etc.).
Instead, I would get rid of the gluten (obviously), but also start pulling out grain-based flours and all processed gluten-free foods that come in a box or bag (which are usually made from flour) as much as possible, especially if they are all fried up or cooked using vegetable or seed oils like soy oil, canola oil, corn oil, etc.
“Not the flour!“
Yes, the flour.
All that gluten-free flour is converted into sugar once in the body, and a bunch of sugar isn’t helpful at all when you’re trying to feel better!
Rather than list all the scary stuff about sugar, this short article is a great testimony to how not eating processed and added sugar can make anyone feel better, and it’s not limited to just those with an autoimmune disease like Celiac Disease.
Plus, reducing flour/sugar is especially helpful for reducing inflammation, which is sort of what an autoimmune disease is: chronic inflammation.
On average, I might consume 2 tablespoons of gluten-free flour a day, minimally processed, and organic whenever possible. This is what makes me feel the best, especially now that my body has adjusted to eating less blood-glucose affecting foods.
So, to recap:
- Remove the gluten! (no cheating and it’s really helpful to know HIDDEN sources of gluten and common ingredients in packaged/processed foods that contain gluten).
- Reduce processed sugar, especially flours, and remember gluten-free junk food is still… JUNK.
(If you’re not convinced, read Dr. Mark Hyman’s article on why a gluten-free diet doesn’t necessarily mean healthier.)
But I’ll be honest, this is just the first step. What I’m after here is a HEALING gluten-free, nutrient dense diet which, for me, means…
At first, like any good American child (or adult), vegetables seem icky and gross. But I noticed eating them consistently for only a short period of time caused my body to do something I never thought it would do…
Sometimes in an obnoxious way that made me do crazy things like drink vegetable juice.
The best part is, they fill that void I mentioned earlier. Eating more veggies gives the body way more precious micronutrients than the SAD diet.
The nutrient density in vegetables is specifically what many American’s are lacking. I try to get at least 6-8 servings a day.
But I still need to round out the other piece to this healing diet puzzle.
Protein and Fat
This category is the one that gets every American (male at least) salivating.
As you probably guessed, I made some changes here, too, in relation to the SAD standards anyway.
Instead of the ultra-processed and insanely inflammatory vegetable and seed oils used in EVERYTHING, I decided to switch to GOOD, high-quality fats. Oils like olive, avocado, and coconut are great for individual reasons. But then there are animal fats as well – pork lard, tallow, duck fat.
I started to use them in frying, roasting, sautéing, baking… pretty much everything.
And then protein. Instead of ultra-pasteurized dairy, protein powders, peanut butter, and low-quality/poorly raised meats, I switched to humanely and pasture-raised meats like grass-fed beef, wild-caught seafood (sockeye salmon, sardines, tuna), free-range eggs, and homemade bone broth. I ditched the dairy because it caused too many problems in my gut.
So, between the removal of the junk, and the addition of the vegetables, protein, and fat… I started feeling A LOT better.
But I’ll admit, diets are tricky.
Wanna know why?
Because I’m not you, and you’re not me!
We all feel a little better or little worse when we play around with the ratios of carbs-fats-proteins because we all have different gut microbiomes (bacteria composition), genetic make-up (mutations and family history), and activity levels.
But the reason I pay so much attention to my diet is because it plays a huge role in controlling inflammation levels. Which means that some (or even all!) autoimmune symptoms can disappear just by eating the right balance of healthy foods.
Plus, the body doesn’t have to work as hard to find the nutrients it needs to function optimally.
So, if I were diagnosed today, my personal diet would look like this:
- NO gluten
- Less flour and processed sugar
- Way more vegetables (6-8+ servings/day)
- Properly raised meats and seafood (amount varies based on my activity level and phase of life)
- Healthy fats
- Organic whenever possible
I did leave one thing out though, and that’s my issue with dairy, beans, and corn. I avoid these foods because I learned over the years that I have allergies/sensitivities to them. Therefore, I stay away so I do not trigger other autoimmune related issues – particularly another disease.
One way to find out what nutrient deficiencies you have, additional food allergies/sensitivities, and how to find the root cause (and possibly put your autoimmune disease into remission) is by seeing a functional medicine practitioner and experimenting with an elimination diet like the Autoimmune Protocol.
For other types of healing diets, read this post by Chris Kresser about 6 types of autoimmune diets that may be able to take your healing farther than just gluten-free.
The Second Thing I’d Do – Find a Functional Medicine Practitioner
If you aren’t clear on what a functional medicine practitioner (FMP) is, check out this post to get a better idea.
In short, they are doctors or practitioners (meaning not medical doctors, but someone who still practices medicine) that work in a holistic way to build the body back up and find the root cause of disease.
Having gone myself, I was able to uncover so many uncommon deficiencies and unearth reasons as to why a gluten free diet wasn’t the cure-all for me.
For example, after one appointment and 3 tests (stool, saliva, and blood/urine combo) I learned the following:
- I am deficient in vitamin B6, magnesium, folate, vitamin B12, CoQ10
- I have Exocrine Pancreatic Insufficiency (EPI)
- My cortisol is low in the morning (under normal conditions)
Any doctor can determine/discover these things. However, I went to my general practitioner 3 times and gastroenterologist twice just to tell me I had Celiac disease and to go gluten-free…
That just seems like a lot of appointments for a grand total of 2 hours worth of face time and only a fraction of the answer to my health issues.
Whereas, my first FMP visit was 2 hours and I already knew that I had Celiac disease. Imagine the number of appointments I would have saved going straight to the FMP, plus everything else I would’ve learned.
If you’re ready or searching for a great FMP, use our checklist to find the best one for you by filling in the form below!
The Benefit of the FMP Approach
The real beauty of a FMP is that they look at the body as a big system and for the root cause of disease.
These two concepts go together like PB&J (gluten-free of course).
Some interactions that take place in the body are uncommon or challenging to connect, but treating the body as a single system makes these interactions difficult to ignore. As a result, many FMPs look closely at a person’s gut:
How is food being digested? Is there frequent diarrhea, constipation, bloating, and other gastro-issues? What is the frequency of BMs (bowel movements) and is there discomfort?
All of these questions start in the gut, but INTERACTIONS that you might not consider are:
- Mood swings, irritability, depression
- Brain fog
- Exhaustion and drowsiness
- Skin rashes/irritation
- Dry skin
- Food and/or environmental allergies
- The list goes on!
These symptoms can be linked to poor gut health (also known as leaky gut) and autoimmune disease. A knowledgeable FMP will look closely at the gut, and typically first, to make sure that the body’s individual systems can work as a single system seamlessly!
Naturally, being diagnosed with a gut-related autoimmune disease like Celiac, I would like to see a FMP right away to get my leaky gut in order. With his or her guidance, I would learn about incorporating gut healing foods into my diet, tackling any gut-related infections, and rebuilding my gut flora with beneficial bacteria.
Once that cat is back in the bag, I can focus on things like my EPI, nutrient deficiencies, and anything else that isn’t cleaned up by fixing my leaky gut.
And what about the autoimmune roots?
Have you ever tried to remove a weed by continuously cutting it down to the ground, but it just keeps coming back?
The reason it always returns is because you are missing the root. And what’s great is that functional medicine, when practiced the right way, targets the root of disease!
Related: How to Find the Root Causes Behind Your Autoimmune Disease
Addressing the roots of a disease means it won’t come back. No “new growth” that can become other autoimmune diseases or chronic illnesses.
Not commonly discussed, leaving an autoimmune disease unchecked may not only lead to worse symptoms of your first diagnosis, but can also lead to a second or third disease. This happened to my wife, Anna who was diagnosed first with Hashimoto’s Thyroiditis and then developed something in the mixed connective tissue disease family years later.
To possibly avoid this:
- Find the root cause ASAP and address it
- Strengthen your body by reducing/eliminating the bad habits that helped trigger your disease in the first place
You can help your body to begin healing and start the recovery process by making lifestyle changes. Without knowing the root cause of your disease though, you could end up continuing to get worse.
So, by now, I would:
- Be totally gluten-free
- Change my diet to reflect the things that maximize my health and how good I feel
- Have a great partnership with a functional medicine practitioner (or team of great docs I can work with).
This should be it right?!
Not just yet.
The Final Step – Start Living the Autoimmune Life (& No Cheating!)
I know what you’re thinking… What IS the autoimmune life?
The autoimmune life is challenging but simple.
Simple. Because it is simply your new life, filled with all of the changes that you will make to accommodate your disease (diet, working with a FMP, etc.).
Although, I like to mention that changes are only changes when they are new, which is great news!
Eventually, any change becomes second-nature and requires (WAY) less brainpower to perform – basically a series of habits.
Related: Can One Tiny Change Heal Your Autoimmune Disease?
But what kind of challenges do we have to face…
Social Gluten Pressures
Not being able to eat gluten confuses people. Seriously, unless you have to know what gluten is, it becomes the greatest mystery second only to the Holy Trinity.
For instance, I have received this question before: “Oh, wow. You can’t have gluten? So… that means you can’t have rice or potatoes?”
You can’t blame them! Gluten is just a word until you explain it, and then the question changes to the following statement:
“WOW! You can’t eat ANYTHING!”
So you get some sympathy points, until you remind your “best” friend that you can no longer eat at her party tomorrow. This is where things get dicey and social pressures become clear.
The minute you tell someone that you have to bring your own food, can’t eat theirs, or ask them what the menu is in case you can’t eat… the world instantly catches fire.
Don’t get me wrong, lots of people are extremely accommodating, but some just don’t like change, so I am obligated to write this warning.
The trick in these matters is to STAY STRONG. Don’t buckle at the first sign of resistance, because gluten is the number one enemy, and just like the devil, he tries to manipulate those around you to want more (bread).
So be warned, and be ready – opposition will come your way at least once. But YOU GOT THIS!!
Unless you get SURPRISE attacked by accidental glutening...
Even if you are open and honest about gluten, it isn’t always that way with you. Why do you think they make gluten-free soy sauce? Read the back of a typical (gluten-filled) bottle, and you’ll see they don’t even mention that gluten is lurking within!
Gluten hides and goes by different names. It’s not some malicious person drumming their fingers together behind every wall waiting for you to become inflamed though…
Nope, just an industry that hasn’t caught up yet. To help, you can read our blog post about avoiding accidental gluten exposure.
One other piece of advice is to question, question, and question again that they will make your food safely. Once you get the food, inspect it, and then question if it has gluten, or use this handy gluten-testing tool.
Or… I would just do what I do now.
Make 99% of what I eat from scratch! Eventually, it becomes a VERY tasty habit (better than most restaurants and that’s no lie!).
Last, but definitely not least – wash your genes!
I mean really get in there and scrub those puppies.
The puppies I am referring to isn’t so much actual genes or DNA, somehow that would probably hurt.
No, I am talking about kids (if you have any)! I have an autoimmune disease which means my kids have the potential (about 25% chance) to receive the same gene(s) that cause my autoimmune disease.
In my case, my kids are very likely to have one since Anna (my wife) and I both have autoimmune diseases.
And it makes sense that I have one since my mom has one (rheumatoid arthritis) and my cousin too (Lupus and Crohn’s)!
So let’s talk about how I plan to wash my kid’s genes so their risk is not as great. It’s simple really, I’m going to raise my kids with my current autoimmune-friendly lifestyle!
That’s it! (told ya it was simple).
If every lifestyle change I make helps to reduce inflammation (by default chronic inflammation, i.e. autoimmune disease), then my kids become significantly less likely to develop one of these diseases.
That’s what I would do if I was diagnosed with Celiac disease today.
Initially, Celiac Disease takes some difficult changes, but once they are made, life can return to normal (mostly).
However, making one change like going gluten-free, even if it makes the symptoms go away, doesn’t mean you are healing your body.
That’s why I have made all of these amendments to my life, and would make them all over again. But faster!
I’d go gluten-free and stay that way using a healing, nutrient-dense diet. Then, I’d find a FMP and learn what I need to do to heal my body and seal the cracks. And finally, I’d learn how to maneuver the changes in relationships and lifestyle (including my kids).
THAT, is what it takes to heal from Celiac disease, and that is what I would do – today.
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Hey there! I’m Frank, co-founder of Healthy Habits Reset. My wife, Anna, and I have battled our respective autoimmune diseases for over a decade. We have fumbled through and eventually learned that REAL mental and physical healing requires you to be your own advocate, to think for yourself, and to determine what information works for YOU.
We created this blog to teach everyone how to use the resources and tools available to make the best personal decision surrounding any health, faith, and lifestyle choice.
Hi Frank. Just stumbled on your page (well hours ago I did and have scoured through it)….. It is really good to read your story as it resonates fairly closely to mine, especially the poop accidents lol. Anyway, after battling chronic imflammation this past year, its time to take the leap and just quit the gluten free flours / sugars etc.. My last step in the battle and I feel it is the hardest. Because having a gf sandwich or gf pasta is great, but bloating, sleepiness, joint swelling, constipation and irritation is definitely not fun after (and I mean less than an hour after eating its all on)….. Your great blog is what I will read and re-read to keep me on track until it becomes a habit. Thanks for putting it all out there.
You’re comment made me laugh, so thanks for that! You’re clearly listening to the signals your body is sending, and definitely seem ready to make some changes. I wish you success, and if you ever have questions or need to bounce ideas, just send us an email. Thanks for reading, Dina.
I just read every word you wrote twice actually. I was recently diagnosed with celiac disease plus I’m a diabetic. So this seemed so impossible to do retort my whole life. You gave me HOPE alight at the end of this scary tunnel. I don’t have much family support so it makes it scary and lonely. I’m gonna definitely take your advice to the fullest. Thank you again your article was an eye opener.
Deborah, I’m so glad you found the post helpful! If I can ever be of more support or provide more specific information, please reach out: email@example.com.
Just diagnosed with celiac disease after being diagnosed with crohns years ago. I’m totally overwhelmed. Don’t know where to begin. Reading what I can about it but can only take in so much.
Hi Lisa. I know what you mean about the overwhelm, but information gather takes time, so give yourself that grace. In the meantime, do what you can to eliminate gluten-containing foods from your diet, and then you can at least start letting your body adjust as you determine what else you can do to understand the disease and optimize your health. Reach out if you have questions!
So helpful thank you two so much. I appreciate you sharing.
Of course! Our entire aim is to help in whatever small way we can.