Vomiting & Nausea Symptoms “Not Real”
Not Real? Really?
Vomiting and nausea that Celiacs experience after being exposed to high amounts of gluten are “not real?” Those have been researchers’ words since Celiac was discovered 100 years ago. They did not believe that Celiacs exposed to gluten could react within hours with vomiting and nausea due to the length of time that it’s supposed to take for t-cells to react to the exposure. They were focused on bloating and diarrhea, symptoms that occur much later in the reaction process when a Celiac is exposed to gluten. According to an article on the Celiac Foundation website, researchers have been saying for many years that the vomiting and nausea from gluten exposure was all in a Celiac sufferer's head. What?? Seriously? How in the world is vomiting “all in your head?”
The same article on the Celiac Foundation website sites a study from 2019 confirming that symptoms of gluten exposure for Celiacs are nausea and vomiting within hours of the exposure! Still, it baffles me that researchers are just figuring this out now. My daughter and I could have told you that 15 years ago. I would actually time her reactions and the frequency of her vomiting. It was definitely not in her head! Sadly, researchers have been hearing about these symptoms for 100 years and still it took them this long to confirm through research what Celiacs already knew.
Our Not-So-Gentle Reminder of These Traumatic Symptoms
My daughter hasn’t been exposed to high amounts of gluten in over 10 years. She and everyone around her have, thankfully, learned how to monitor her food intake both at home and away. We’ve gotten to the point where she has only had minor gluten contamination issues, usually when we are traveling. Unfortunately, when traveling Celiacs know that these situations cannot always be avoided - now matter how hard you try.
Unfortunately, that all changed last week when my daughter was exposed to a very high amount of gluten while at school. She’s a high school junior and we had just set up special meal accommodations for her at school based on her medical condition of having Celiac Disease. Since she was in preschool, we always sent food from home and highly scrutinized any food her schools served - we reviewed every label or called manufacturers as well as closely monitored and reviewed all serving processes.
But now she’s in high school. I can’t do all of what I used to do. I did speak to the person in charge of the meal accommodation program. She assured me that she bought only gluten free products, that they had special prep systems set up to avoid cross contamination and that in the two years they have been running the program they have never had a gluten contamination.
Unfortunately, as we all know, no system is 100% safe. My daughter went to the cafeteria and requested to speak to the lead chef to request her gluten free snack. He handed her a bagel, wrapped in foil that was marked “GF.” My daughter said that when she bit into it, it tasted sour, like how she thought sourdough is supposed to taste but it was also tough and chewy, like gluten free breads can be, so she assumed it was safe to eat.
Two hours later, while sitting at a coffee shop studying and working on homework, she started to feel nauseous. She started to feel her mouth fill with saliva and her stomach surge. She ran outside and puked in the bushes. She sat down on a step outside the cafe and continued to vomit about every 15 minutes until her dad arrived.
Good Intentions but No Relief
Her dad was in the military and is very big on self-reliance, which I fully support – until our daughter is vomiting her guts out from gluten exposure. In those moments, I think support, patience and nurturing approaches are called for rather than tough love or demands to “push through.”
But each parent has their own style and even the tough love approach is based in love. Fortunately, he got her back to his house quickly where she continued vomiting for over two hours. Having been the one to care for her in the past when gluten exposure like this occurred, again it hadn’t happened in over 10 years, I knew that she would lying on the bathroom floor, just needing comfort, support and maybe a cold towel on her neck while her body expelled what it thought was poison from her body. I ached to be there with her.
I heard later that someone had gone to the local drug store to try and get things that might help ease my daughter’s nausea and vomiting. Things like like Gluten X, Pedialyte and an OTC anti–nausea medication. My daughter knew from experience that none of this would work while she was still vomiting every few minutes. However, when well meaning people go out of their way to find remedies that they think might help and are urging you to “help yourself feel better” even teenagers can feel compelled to take the help being offered. Without fail, within minutes she threw it all back up and she went back to her known process of just letting her body rid itself of the gluten it considered poison.
Where are we now? Where do we go from here?
So, I find the research written about vomiting and nausea on the Celiac Foundation website both frustrating and reassuring. Frustrating because, having watched my daughter go through hours and hours of vomiting within two hours of being exposed to gluten (at high levels), how could anyone possibly say that was in her head. How could researchers hear this from hundreds, if not thousands, of Celiacs for over 100 years and still just dismiss this information. Where’s the scientific curiosity? Where’s the crafting of a new hypothesis to try and test what they were hearing versus relying on knowledge that was over a century old? That right there disappointments me and it's why I am always a strong patient advocate.
On the reassuring side, the article gives the impression that the 2019 research will help advance a cure. The article notes that researchers are now focusing on this particular protein (a t-cell) that gets activated by the immune system when celiacs are exposed to higher amounts of gluten. It's also helpful for Celiacs to have data-backed research that supports what they already knew - that when they get exposed to gluten, it's an autoimmune response. The vomiting and nausea are just symptoms of their body attacking the gluten and treating it like a poison (e.g. activating this t-cell in the body). It provides scientific data that can give Celiacs confidence to answer anyone who says these symptoms are only in their head, that somehow they can control what's happening, or that they can stop the vomiting if they “just try and help themselves”. They can say to these deniers - with confidence - you are, in fact, wrong.
The other part in the article that could be helpful is learnings related to the FODMAP diet (https://celiac.org/fodmaps-and-celiac-disease/) and how this diet could help Celiac’s manage bloating, cramping and stomach pain even when they are on a gluten free diet. I know that my daughter has suffered from these types of symptoms off and on for years after being on a gluten free diet. Having data that helps guide what someone needs at each step of the Celiac journey, is helpful for Celiacs to self advocate and be well-informed partners with their GI specialists.
Going back to my daughter’s recent exposure to the glutenous bagel, it was infuriating and heart breaking to watch her body attack itself and the impact it has had on her. Although I’m upset, I have focused my energy on how to 1) work with the school to improve their processes for managing gluten free food prep in the kitchen; and 2) help my daughter heal her gut and get back on track at school and in her life.
For my daughter, we have discovered a few things that are starting to help which have been recommended or approved by her GI specialist. If you’re Celiac and have been exposed to gluten, please work with your doctor to create the plan that’s right for you. For us, what’s working right now is a bland diet, trying the FODMAPs diet for two weeks, avoiding dairy and caffeine, getting lots of rest, staying hydrated and reducing stress.
According to my daughter’s doctor, it could take 1-2 weeks or up to 6 weeks for her to completely heal from this exposure. This is really impacting her school performance and no teenager wants to be missing time with friends. We are grateful to the school for the support they are providing. We have a medical support plan on file with the school which outlines the support teachers provide and the actions my daughter can take to get caught up with the school work she missed, as well as allowing work to be handed in late or tests to be postponed without penalty. Luckily, my daughter is also diligent about her school work and she takes the accommodations seriously using them to help her get back on track. The cafeteria manager also revisited every step of their gluten free food management, looked for ways to improve and created new processes to safeguard against another gluten exposure. We know that no process is full-proof, but we appreciate the due diligence.
One of the best outcomes is that my daughter does not see herself as a victim, nor is she expending energy to be mad at the school. She’s asked to be part of the solution, to tour the cafeteria with the head chef, learn their new processes and offer new ideas based on her own knowledge of what it takes to create safe kitchens for Celiacs and help Celiacs feel more confident in the food they are being served from shared kitchens. I’m extremely proud of her. She’s strong, capable, knowledgeable and taking action to create a safer environment for herself and other Celiacs - a lovely silver lining to a very stressful and frustrating situation.