5 Things I Wish I Knew When I Was Diagnosed With Celiac Disease

Today is my five-year anniversary of being diagnosed with Celiac Disease. I look back on that day and think about how relieved I was to finally have an answer of why I was not feeling great and why I had the symptoms that I did. I left that doctor’s office and immediately started researching everything I could about Celiac Disease. However, now that I’m 5 years into my diagnosis, I’m going to write about 5 things I wish I was told when I was first diagnosed. This was a hard list to make, as there are hundreds of topics I wish I knew about, but that’s the simplest part of life, we need to take it one step at a time. All of the answers will come with experience and time. There is more to the disease than just going gluten-free. Celiac disease, for those who do not know, is an autoimmune disease of the small intestine, and gluten is its trigger.

First off, go gluten-free, right this second, if you have been diagnosed with celiac disease and DO NOT look back. I hate to tell you, but this is a life-long disease that will never go away, I’m just going to be straight with you. There is no cure for celiac disease as of yet, other than following a strict 100% gluten-free diet. I have met some people who “cheat” on their gluten-free diet even though they have been diagnosed with celiac disease. This is a hard no, just one crumb can cause an autoimmune reaction in your body and have you not feeling your best again. So just avoid the stuff as much as you physically can in your own home and out to eat.

When I was first diagnosed with celiac disease I was told by the doctor to “just follow a gluten-free diet.” And even though he was technically correct with this statement, over the years I have learned there I so much more to healing your gut from celiac disease than ‘just going gluten-free.’ Here are 5 things I wish I was also told when I was first diagnosed.

  1. Give Yourself Time To Heal

    This is my first point for you because I did not realize just how long it takes the gut to heal from something like the damages of celiac disease. Depending on how long you have had symptoms and how long it took you to get diagnosed, there is damage in your gut that needs time to heal. Your doctor may have you do a TTG test every 3 or 6 months to see where your progress is, but do not get discouraged if it’s taking a bit longer than you thought to get your TTG levels to fully drop to a normal level. Typically it takes anywhere from 6-18 months to heal, however, if you have had the symptoms longer or had a high TTG test result (such as, greater than 300), it can take up to 5 years to get your TTG levels to fully drop. For example, when I was first diagnosed my TTG blood result was greater than 300. Now 5 years later my TTG result is now 17.5, and continues to drop with a diligent lifestyle. Nothing happens over night, so try to be patient and kind with yourself as sometimes there are things in life that we have no control over.
  2. Be Wary Of Cross-Contamination

    If you have on-going symptoms, cross contamination of gluten may be the cuplrit. I had no idea this was even a possibility when I was first diagnosed. This is an important point to make because as I have mentioned, it just takes one crumb to cause you symptoms and that one crumb can be hidden in the most sneaky places. I have written a whole blog post on cross contamination and celiac disease which you can find here, however here is the quick version of it.

    It is not just the act of eating wheat, barley, rye or oats that can cause your TTG levels to rise and cause you symptoms, but you can also get small contaminations of gluten that may not rise your TTG levels but can definitely still cause your on-going symptoms. Gluten can be hidden in ingredients, products, and kitchen equipment just to name a few. Now before I continue, this is not a fear mongering point, more one just to make you aware.

    Be sure to go through your kitchen equipment and replace what could have come into contact with gluten before your diagnosis. Equipment such as chopping boards, toasters, rolling pin and wooden spoons, pasta strainers, sifter, old plastic utensils, waffle irons, teflon pans that are heavily stratched, baking sheets, loaf pans and muffin tins are all objects that can conceal gluten in them. Even looking into your condements to be sure there is no ‘double dipping’ of a utensil from a slice of gluten bread into that condiment jar as it can leave behind gluten crumbs. Finally, products like toothpaste, lipchap, mouthwash, and dental floss should also be looked into.

    Getting little micro contamnations consistently can cause your symptoms to stick around and keep your TTG levels raised. So being sure you are reading food labels correctly and replacing what you need to in your home along with asking all of the right questions when you are out to eat can help you prevent getting glutened. This actally brings me to my next point…
  3. Start Working With The Right Healthcare Providers Right Away

    I cannot emphasis this point enough! Over the years I have worked with a list of different healthcare providers and there are two of which I would suggest to see.

    A Gastroenterologist

    I wish the doctor I saw at the walk in told me to go and see a gastroenterologist right away. I was not sent to see a gastroenterologist when I was first diagnosed as I was told it would take up to 2 years for me to even get in with one (that’s here in Canada). So I was not referred to one until I was given the wrong sandwich bread at a restaurant a year after my diagnosis and my now family doctor started the referral process to get me in with a specialist. When I did get in to see her a year later, she saw my first test results and said I should have seen her at that point, and not 2 years later. I’m also suggesting to see a gastroenterologist right away as the blood test alone is not the ‘solid’ diagnosis of celiac disease; you need to get a gastroscopy and biopsy completed to know for sure if you are 100% celiac. The reason for this is the blood test that can be a false positive or vice versa, and the only way to know for sure is testing your small intestine directly. Your specialist can also take a look at your test results and decide if any further testing needs to be done.

    A Dietician

    The second professional I highly suggest working with right away is a dietician. But not just any dietician, one that specializes in celiac disease. I started working with one that specializes in celiac disease because the first dietician I worked with did not, and she taught me the basics but did not continue to work with me to help me with my on-going symptoms. I am now working with a dietician that does specialize in celiac disease and it has made a world of a difference, so much so that I wish I had started to work with her sooner. They will be able to work with you and let you know if you are eating the correct foods, meal portion sizes, meal spacing, how to eat balanced meals, teach you how to read food labels correctly, and so much more. I personally have had on-going symptoms even with following a gluten free diet for the last 5 years, but she has taught me information I’m not sure I would have figured out without her help and guidance. And I’m happy to say I have less symptoms than I did when I first started working with her.
    This is not a promotion or plug in anyway, but if you’d like to work with the same dietician I am, she can be found here. She also has celiac disease and can relate with what you are going through.
  4. Continue To Live Your Life Without Fear And Speak Up For Yourself – Some tips on how to do this

    This doesn’t seem like a big one for most, and it didn’t seem like one for myself, but it’s a important part of the healing process. When you are first diagnosed it can be daunting to know that you have to avoid gluten for your physical and mental health, but it can be hard to avoid it when it is a main ingredient in a lot of products and foods. However, if you follow a few simple lifestyle changes, it will be smooth sailing. Here are a few examples:

    – Read labels of foods before you buy them and eat them to be sure they do not contain gluten
    – Ask the right questions when you are out to eat or at a friends place. Do not be afraid to speak up for yourself, this is afterall your health and you are the one who will suffer the consequences, so please do not feel embarassed to tell people what needs to be done to keep you safe. This is personally one I’m still working on myself but with time it will become easier and more natural.
    – Prepare for road trips and always carry a snack on you. This is something I learned the hard way, I’ve hit hangry Lauren way too many times but this can all be stopped by preparing ahead and being sure you always leave your home with a snack. Having bars, fruit or veg, nut and seed mixes, etc on you can be life changning when you cannot find somewhere safe to eat. This can also decrease the anxiety placed on yourself when you are hungry.
    – Along with the last point, travel your little heart out! Do not be afraid to travel, there are so many places you can go to eat safely now, and if there is not, bring snacks and prepare for the trip. You can also travel with health cards that are typed out in the language of the country that you are going to explaining your condition and what needs to be done to keep you safe. Go see the world!

    Just know that if you are doing your best and continuing to educate yourself, you’re already way ahead. I know it can be scary with a new condition, but take it from me, it’s livable and it can become your new adventure in life!
  5. The Mind-Gut Connection

    Okay last but certainly not least, the mind-gut connection. There is more and more research coming out showing how closely the mind and gut work together. Celiac disease does not just effect the gut, it affects every system in the body due to the fact that it damages our main organ that absorbes the nutrients from the food we eat, the small intestine. Therefore, it won’t just cause symptoms physically but also mentally. When the gut is damaged, it will cause a domino-effect throughout the rest of the body. All the same, if the brain is damaged it can do the same thing.

    The following is from the book, The Mind-Gut Connection: “We know today that 95 percent of the body’s serotonin is actually contained in specialized cells in the gut, and these serotonin-containing cells are influenced by what we eat, by chemicals released from certain species of gut microbes, and by signals that the brain sends to them, informing them about our emotional state.” Essentially, if our gut is unhappy, so will our brain be and vice versa.

    The reason I am bringing this point into view is due to my own struggles in this department over the last 5 years. I did not realize until 6 months ago just how anxious I was about my gut and just how much it was affecting my over all physical and mental state. If you are anxious, nervous, fatigued, or scared, your gut will act up. But if you make this chronic, over time more and more symptoms can occur. Those symptoms are very similar to a celiac eating gluten, in whichcase you may be thinking you are eating gluten when your stomach is upset but sometimes it might be due to your menal state causing those symptoms. Breathwork and meditation has been a saving grace for me, and thankfully in this day and age there are a lot of videos, tutorials, apps, books and people out there that can help you get started.

Those are the first 5 tips that I would give anyone who has just been diagnosed with celiac disease. All in all, know that you are a rockstar and this is an amazing opportunity for a lifestyle change that will better suit you. There are many positives to being celiac which I wrote about, and now there are so many amazing communities to be a part of as well. Know that you are never alone and there is always help out there.

As I have mentioned there is so much more that I would love to share with you, as I truly believe that experience is knowledge and knowledge is power. Stay tuned for more helpful tips coming in the near future on this blog and more!

Much love coming your way,

LEW oxox

If you are interested in reading my story here are some blog posts I wrote about my journey with celiac disease:

Part 1: The beginning of a positive lifestyle change

Part 2: The first year after diagnosis

Part 3: My first accidental exposure to gluten that lead to a gastroscopy

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