Disclaimer: the content on this site is for informational purposes only and reflects my individual experience living with multiple autoimmune diseases. It does not substitute professional medical advice nor consultation with your own healthcare professionals.

As a newly diagnosed Celiac, I’ll admit it – I didn’t think this new diagnosis was going to be a big deal. On that otherwise unremarkable day, I was more upset that I wouldn’t be able to eat fast food any longer (RIP Wendy’s Junior Cheeseburger with fries) and that I’d come across as overly difficult in restaurants. But actual health issues? Seeing as that I was mostly asymptomatic at the time of my diagnosis, I had zero fear. It turns out, I had zero fear because I was completely unaware of what was about to come. For some, a Celiac diagnosis marks the end of a difficult journey rife with mysterious, sometimes debilitating symptoms. My Celiac diagnosis, however, was just the beginning. Five years later, I’m still on that road.

My intention is not to fear monger, but instead to offer a sort of a heads up. For me, there was no warning, from doctors or anyone else, that Celiac would amount to anything other than going gluten free for the rest of my life. The fact that Celiac is a serious autoimmune disease that should require follow up monitoring and testing was never mentioned. I’ve learned that as one goes gluten free, there are a handful of things that have the potential to upend other aspects of one’s health and/or life. Here are a few items that I wish someone (ideally a doctor, but hey…) had specifically advised me to monitor as I went gluten free:

The Effects of Prescriptions

In hindsight, this is blatantly obvious. Immediately following my diagnosis, I was told that my gut would heal and I should feel better (although I wasn’t feeling terribly bad at the time?). I wasn’t given any specific examples of what “your gut will heal” actually meant.

For someone overwhelmed with a brand new a diagnosis, the incredibly obvious can fly right over the head. When it came to going gluten free, the first thing I wish I had known was that I would absorb EVERYTHING better. This meant more nutrients, hooray! There was plenty of talk about food. However, here was no mention that my heart medication might become more effective and cause my blood pressure to drop, resulting in dizzy spells and occasional orthostatic hypotension (ie: near fainting when standing up too fast). Likewise, I didn’t realize until too late that the drugs I took for my thyroid would absorb more effectively and send me into my first experience with hyperthyroidism (great for energy but not good for the old heart, FYI). It took about six months to sort out what was causing my dizzy spells, and the thyroid roller coaster I ended up on lasted for years.

Do not fear! A change in how a body absorbs medication is absolutely manageable…as long as one knows what to look for. This is not a situation where hypervigilance is at all necessary. However, keeping an eye on new (or increasing old) prescription side effects might save you a few doctor’s visits and months of mystery symptoms. Once I put two and two together and mentioned to my specialists that I’d been diagnosed with Celiac, changed my diet, and thought I might be absorbing my medication at a higher level, they were all quick to re-evaluate my dosages. In both situations, I was correct. If I had only known that this would probably happen and that I should ask about it right away, I could have saved time, money, and months of side effects. Instead, I felt confusingly “off” for an unnecessary period of time.

The Effects of Everyday Substances

In the years after my Celiac diagnosis (yes, this one was realized over literal years), I’ve become incredibly sensitive to everyday items that previously had minimal (or no) impact. Number one? Cold medication. I’ve never loved cold medication. For most of my life, cold medications have made me feel uncomfortably loopy. Before my Celiac diagnosis, I would usually get sick several times a year (almost as if my immune system was too busy attacking me, leaving nothing to fight seasonal bugs or germs – weird). A positive side of receiving my diagnosis and going gluten free was that I suddenly never got sick anymore. Instead of my typical 2-4 annual bouts of illness, the first common cold I had didn’t surface until over a year after my diagnosis. Absentmindedly, I took the same amount of cold medication I always had…and it knocked me out for days. I was dizzy, couldn’t drive my car, and shocked at how it all hit me…until I thought about my earlier experience with prescription drugs. I’ve been lucky and haven’t had a cold since, so I haven’t had the opportunity to test this theory again. However, next time a cold makes it into our house, I’ll be starting with a partial dose of medication (side note: do not ever cut down or take partial doses/pills of extended-release medication – neither prescription nor over the counter! It can be dangerous).

Other substances that have started hitting harder since going gluten free? Caffeine is a huge one, but I refuse to give it up. We all need some level of joy in our lives. My alcohol tolerance seemed to drop as well. I barely drink anymore, but when I do, I’m usually buzzed long before anyone else. Proceed with caution! Last, I live in a state where marijuana is fully legalized. I don’t personally partake, but I imagine it’s another area likely impacted by healing one’s gut. If you consume cannabis-infused food or drinks, I’d urge you to be aware of your intake as your gut heals and absorbs more efficiently. You might just find you have a much different tolerance to all sorts of things once you’ve gone gluten free.

Nutrient Levels

If there was only one thing I could share with the newly diagnosed, it would be to demand – because sometimes demanding is what it takes – that your medical providers check your vitamin and mineral levels regularly. Post-diagnosis, my most difficult struggles have had nothing to do with learning how to go gluten free. Although going gluten free IS a struggle, it wasn’t anywhere near as challenging as sorting out the unexpected effects and deficiencies it caused.

As I’ve healed and my diet has changed, the two most difficult things for me have been:

• – my thyroid swinging between hyper and hypo (as mentioned above, it took years to find an appropriate level of medication), and

• – an ongoing series of vitamin and mineral deficiencies, which have ranged from annoying to debilitating

It’s been five years since I was diagnosed with Celiac, and I’m just now coming out of an iron deficiency that had me nearly bedridden for two months. It’s frustrating to realize that even years later, I’m still learning about this disease, this diet, and how it can impact a life. Those with Celiac are likely deficient in some way when diagnosed, and they are prone to developing deficiencies as their diet changes. I’m just now learning that for my own comfort and sanity, it’s going to be imperative to proactively monitor various vitamin and mineral levels – despite the fact that a physician has never advised me to do so. With each deficiency, it took months of symptoms to discover that my levels of vitamin D, vitamin B12, folate, and ferritin were askew (note, my iron levels looked relatively normal until my ferritin was tested – keep that in mind if you have symptoms of anemia but your CBC comes back normal). All of these deficiencies are common in those with Celiac (and some, like low ferratin levels, are especially common in those that share a Celiac and Hashimoto’s diagnosis). However, deficiencies are often not evaluated until one becomes increasingly symptomatic…and then finds the time to see a doctor, and then finds the time to schedule labs, and then waits for a follow-up appointment, and so on and so on. This process can take months.

On my best days dealing with these deficiencies, I’ve been tired. On my worst, I’ve been unable to get out of bed, struggled to communicate coherent thoughts, and had limb weakness and pain along with occasional loss of dexterity. Before it was diagnosed, a simple iron deficiency had me worried that I wouldn’t be able to continue working. I’m not trying to complain, I’m actually quite fortunate – so far, most of my post-Celiac symptoms have resolved with discovering a vitamin or mineral deficiency and supplementing as needed. But that process can be long, fraught with medical dismissal, and I’ve lost months of my life each time.

It’s difficult to comprehend the possibility that I could have avoided most of that struggle, most of those months in bed, in pain, and struggling with words, if only I had known from the beginning what specifically to look for or ask for. With my most recent deficiency, it took two endocrinologists, one psychiatrist, and six months of waiting before someone decided to check my ferritin levels. Why? Because, as most chronically ill individuals (especially women, and extra especially women of color) have experienced, I was told my debilitating fatigue and pain were not physical at all – they absolutely had to be in my head (not to minimize the connection between chronic illness and depression/anxiety – which is very real and very serious – but at the time, my symptoms were entirely physical). If only I had known to ask about iron and ferritin levels: both very common deficiencies, especially in those with both Celiac and Hashimoto’s, of which I had textbook symptoms. Instead, I got lucky with a second opinion and more extensive labs. Although I’m SO grateful for the discovery, I still lost six months to fatigue, brain fog, and pain.

Although I’ve never had a physician recommend proactive testing, The Celiac Disease Foundation has post-diagnosis recommendations for treatment and follow-up, including awareness of or testing for deficiencies in: fiber, iron, calcium, magnesium, zinc, folate, niacin, riboflavin, vitamin B12, vitamin D, copper, vitamin B6, and calories and protein. More can be found on The Celiac Disease Foundation’s treatment and follow-up recommendations here. They also have an excellent post-diagnostic checklist, found here, which one can download and review with their medical team.

Ensure That You Are Eating Enough

Post-diagnosis, I cut out bread and pasta. Easy enough, right? I eventually learned about all of the “hidden” sources of gluten and did away with those as well. What did I replace them with? Not much, it turns out.

I’m exhausted by meal planning and cooking, and I didn’t know the first thing about a balanced diet. I’d eat whatever processed gluten free food I’d find at the grocery store, and I’d often end up hungry at the end of the day and binge on whatever was around. I never though much of it. As long as I was gluten free, I felt like I was on the right track.

Well…I never thought much of it until I my first visit with a dietician. She took one look at my typical diet and informed me I wasn’t eating anywhere near an appropriate amount of calories throughout the day. I removed the bread, pasta, cereal, and whatever other gluten-full items that I used to eat, without replacement. And as a result, I would end up famished at night and load up on candy, chips, processed snacks, and often a little bit of wine to wash it all down. I had no idea that I was slowing my metabolism, nor was I aware that eating more food (especially nutrient dense foods) would play such a substantial role in helping me heal and increasing my energy levels.

The world is full of dieticians – one of them, I am not. There are many ways to achieve a nutrient dense, balanced, healing diet and seeing a dietician is one of the best ways to do so. If there is one lesson from seeing my dietician that helped me above all else, it was that one should be careful when basically eliminating an entire type of food. Doing so mindlessly, or in an uninformed way (and it’s not easy to sort through all of the information out there!) can be detrimental to the healing process. Do your best to eat enough, and seek help if you need it.

“Go gluten free and you’ll heal” is often what one hears when newly diagnosed. It turns out, it might not be quite that simple for everyone – that advice certainly hasn’t done my journey justice. Going gluten free can bring immense relief, but those recently diagnosed aren’t always taught that it can also result in a few new, exciting health issues. The importance of maintaining careful, specific awareness of how one’s body reacts to all things as it goes through these changes is the one thing I wish someone, anyone, had shared with me early on in my new Celiac life.