Despite our best efforts, we all get glutened on occasion. We can ask the right questions, make phone calls to companies, visit only celiac-safe restaurants, but the opportunities to get glutened present in new and different ways and we fall trap to their disguises.
This post includes an account of my most recent glutening, how to recover from being glutened, and when to seek medical help for your symptoms. We also include a printable checklist to help you build your own 'Glutened' Healing Kit with additional tips and recommended supplements.
How I was glutened
The photo below shows a really delicious tray of fish and chips. This restaurant has a dedicated fryer, dedicated kitchen space, and a gluten free menu. They are well aware of celiac disease and had a 100% celiac success rate on the FindMeGlutenFree App. I’d eaten there once before and had no problem at all. With limited gluten-free options on the Oregon Coast, I was ecstatic to come across this quaint ‘celiac-friendly’ restaurant again.
Little did I know, only two hours later I’d be married to the bathroom for several hours, I’d experience joint pain the following day, and I’m writing this 4 days afterward while still bloated. Since I get the ‘celiac rash’ (dermatitis herpetiformis), I developed the itchy bumpy rash a few days later as well.
This was a cross contact reaction for me. Thankfully, it wasn’t anything more and my symptoms will mostly clear up within the week.
Since I ate safely at this restaurant once before, I can’t help but wonder what was different this time? While I don’t know for sure, I can make a few speculations…
- I visited the restaurant at the end of the day, just before closing. If the kitchen was dirty, the chance of cross contact with gluten would be higher. The many crumbs covering the dining tables when we arrived suggests this possibility.
- I ate the tartar sauce. Last time, I didn’t dare. I was more cautious a few years ago and would never eat a sauce unless I specifically inquired. Since I ate my meal as take-out and felt overall comfortable with the restaurant, I took the chance.
It’s also very possible that this was a rogue event and by an unfortunate chance a speck of gluten made it onto my meal… either way, the result was the same and I was stuck with the big D plus other nasty symptoms. Which brings us to the topic of recovery!
Relieving Symptoms of getting Glutened
Symptoms can vary a lot between celiacs and gluten sensitive people, but many us have these in common. Here are some common symptoms with remedies I use as needed:
This is a super common symptom for celiacs, though some experience constipation or no symptoms at all. When the ‘runs’ come with getting glutened, I try to make sure I’m at home for the duration. For me, acute symptoms begin several hours after I eat gluten but can vary depending on the amount. Diarrhea can last 2 - 6 hours for me.
In general, diarrhea is our body’s way of expelling irritants. If I’m able, I let the runs take its course and supplement with lots of extra fluids.
My favorite ways to replenish electrolytes are:
- coconut water
- Nuun electrolyte tabs (all flavors are gluten free)
- still or sparkling water with a splash of fruit juice
Pedialyte is another option for replenishing electrolytes, especially if you have prolonged or more intense diarrhea than normal.
If you experience symptoms of dehydration, please use good judgement and get yourself to your primary physician, urgent care center, or the emergency room. Severe dehydration can be life threatening but is easily fixed with proper medical care.
Oy, this is the one that gets me good. When really nauseous, I stick to small sips of lemon and ginger tea to soothe my stomach and keep me hydrated. Sometimes I can't drink anything at all and need to wait it out.
Once the worst of the nausea subsides, however, I find it worsens when my stomach is empty.
My favorite easy-to-digest snacks include:
- plain rice cakes and rice crackers
- baked potatoes without skins
- easy-to-digest fruits (bananas, melons, applesauce, etc)
- easy-to-digest steamed vegetables (zucchini, broccoli, cauliflower, etc)
Symptom: Acid Reflux
Since gluten causes your stomach to empty more slowly (while your intestines speed up), acid reflux is a common symptom.
For me, especially early on, it can be severe! While I tried a number of different remedies, I find a strong antacid like Zantac 150 before bed helps a lot.
Helpful hint: Adding an extra pillow to your bed at night keeps your head more elevated and reduces acid reflux.
Symptom: Joint Pain
Personally, I avoid painkillers because I don't want to overuse and potentially damage painful joints. If I can feel the pain, I am more likely to choose rest. When I really need relief, I use Tylenol (acetaminophen). I feel joint pain in my ankles, wrists, and knees when glutened.
Helpful hint: Be wary of anti-inflammatories like ibuprofen and naproxen because they can cause further damage to your healing intestines! My doctor recommends avoiding all non-steroidal anti-inflammatory drugs for anyone with celiac or inflammatory bowel disease.
Symptom: Feeling exhausted & Brain Fog when glutened
If someone has a magic remedy to these, please keep me in the loop! The only way I alleviate exhaustion and brain fog is with gentle self-care and time.
My favorite self-care practices after getting glutened include:
- Scheduling extra sleep - I need a good 10 hour night of sleep before I start to feel better
- Taking a day off of work (if I can)
- Light exercise - stretching, gentle yoga, or walking
- Allowing myself time to 'space out' and have a cup of tea, watch Netflix, or casually work through a feel-good read
Severe Symptoms when Glutened & when to seek Medical Help
The earlier story described only my reaction to cross-contact with gluten. My food likely contained a crumb or a dusting of flour. If you’re reading this from a celiac support role, please know how debilitating a tiny speck of gluten can be.
If I were more severely glutened, my reaction would be more frightening. I get neurological symptoms like migraines, and even more concerning, peripheral neuropathies which resemble severe pins and needles tingling in my arms and legs. Brain fog can be extreme and last days and I may vomit on and off for a few days as well. This is all in addition to more severe cross-contact symptoms. Overall, I am completely unable to function normally. I am very, very careful to avoid this type of reaction and have not had one in several years.
Some of you reached out to share that you have trouble speaking, you need to visit the ER for IV fluids, or your mental health is totally rocked by eating gluten. For many of us, a heavy dose of gluten can have scary and uncomfortable consequences.
While many of the milder symptoms are treatable at home, it’s a good idea to keep your physician in the loop about your typical symptoms when glutened. They may have suggestions for how to alleviate them or provide helpful insight.
The following symptoms are ones you should share with your doctor:
- Neurological Symptoms
- Diarrhea or vomiting with signs of dehydration
- Any symptoms that are severe or out of the ordinary for you
- Other Autoimmune symptoms that are aggravated by eating gluten and a celiac flare
- Any symptoms that are ongoing or chronic without obvious gluten (doctors can check your antibody levels or search for related conditions or causes)
Getting glutened is no fun but a reality of living with celiac disease. Always remember that it happens to even the most diligent gluten-free eaters and try to stay positive - learn from your mistakes, know that it will pass, and seek support from friends, family, and the gluten-free online community.
In need of gluten-free support?
With love and gratitude,