As someone who suffers from a chronic, rare illness, I’m always searching for answers to the questions surrounding the mystery of the disease. Cyclic vomiting syndrome is one that cannot be detected simply by giving a test, but instead requires health professionals to observe symptoms and make a diagnosis based on that. If there were some kind of test to detect it this would leave many of us, who have been accused of it all being in our head, some relief.
Recently my brother Joe has been interested in the origins of our family. He and Mom have researched at great lengths to find our genealogical history. Part of that effort, for my brother, was to get a genetic test done. After he shared with me the results, after finding that the only indicator for an increased risk of disease was in a susceptibility to Celiac Disease.
When looking at the symptoms and signs on Celiac Disease, there are many things that I find in common with my illness. For instance, headache, fatigue, joint pain, nausea, bloating, abdominal pain, skin rash, heartburn, and more symptoms are all related to signs of Celiac Disease. The disease is an autoimmune disorder and may have a familial or genetic component.In some people who are exposed to gluten in their diet, an enzyme called tissue transglutaminase changes the gluten into a chemical that causes an immune response, leading to inflammation of the lining of the small intestine. Gluten is a protein found in wheat, barley, and rye.
The treatment for Celiac Disease is for a person to go on an all gluten diet, eliminating the grains that contain gluten and make it difficult for their body to absorb. All the delicious foods like pizza (crust), cakes, donuts, pasta, cookies, etc. are things that would be off limits to someone on a gluten free diet. The good thing is, most restaurants offer gluten-free options, making it easier for those who suffer to have a choice.
While I don’t necessarily believe that I may have Celiac Disease, I do believe that CVS and Celiac may have some relationship in some way. The difference is that when I have an attack, I get sick over and over again for sometimes weeks on end. That is nothing something that is regularly seen in those who suffer from Celiac. However, there are times that I have felt ill after eating pasta, pizza, or other foods containing gluten or msg. It may be that the diet helps to trigger the CVS attacks.
Now, I am not a medical or health professional in ANY way. I am just merely someone trying to find answers and solutions for those of us suffering from the CVS illness. I plan to speak with my doctor about my brother’s findings and also see if there would be a way for me to be tested for Celiac, or see if I have been in the past at Mayo. If my doctor feels I should try a gluten-free diet, I will do it, regardless of how difficult it might be for me to follow. Anything to help alleviate the symptoms and outcomes of having an episode of CVS would be worth it.
Dear Courtney as I just read your blog and am crying! This is the first time I’ve heard of someone else experiencing this vomiting. I’m sixty years old, diagnosed celiac as child, eighteen months old. Was told would grow out of it. I’m in the middle of attack now going on three weeks. This time triggered by second covid shot. Thank you for sharing, nice to know I’m not alone.
Kelley, I’m so sorry to hear that you’re suffering and in the middle of an attack. You are most definitely not alone. I hope that you can find something that will work for you so you can feel better.
OMG Ms Cortney I’ve been dealing with CVS since around late 2015 and not diagnosed till early 2016. My aunt is an MD and I’ve forwarded her the records from the VA. They even stuck the camera down my throat to have a look around. Even took a biopsy. Still not able to tell me anything worth anything. They suggested that I stop smoking weed so I stop for 6 months (. 90 to completely detox 90 to see what happened)! Some of my episode were worse without it. Lasted longer and more intense. I’m SO glad I saw this. But a restricted diet though??!! Have you tried it and if so how did it work out. So Glad to meet you.
Marcus L. McCoy Sr.
Ms Kelly I TOO am First so sorry you’re also suffering, Second glad to finally hear that I AM NO LONGER ALONE. For both of you, once I get out of Facebook Jail you BOTH can feel free to look me up. I think we could use the support from folks suffering like us. My last episode started Friday and was off and on through yesterday evening was the last one. I can’t stand this crap. Some take ALL my energy. Do either of you get let or foot cramps or anything else afterwards??
Marcus L McCoy Sr
Hello Marcus,
Sorry to have to meet this way but glad you are here. Sorry, too, that you are in Fbook jail. Hope that clears up and feel free to add me when that is.
I have actually found a medicine that I’ve been taking for about 3 years and it has given me my entire life back! It worked immediately and took away the constant nausea that I had before. It’s actually a migraine medicine called Nortriptyline. If you need more details on it, please let me know and I’m happy to share.
My father also has CVS and got on the nortriptyline right after me and it works for him, too. This could be because our genes are so similar, but it’s worth a try if your doctor allows it. My doctor is amazing and would totally talk to your doctor, if needed.
Haven’t changed anything with my diet and definitely haven’t had any surgeries. I would not suggest anyone get one to try and solve it, either! Hoping this can be an answer for you!
Courtney,
Thank you for this. I was diagnosed with CVS eight years ago. When I have an episode, if I eat gluten, once able to eat again, I get sick again. I think that my CVS is caused, typically but not always, by inflammation in the intestines and colon, which starts painful cramping and then a CVS attack follows. I believe that the presence of wheat and gluten in my system does not allow the inflammation to heal. It may even cause it. After an attack and I am eating again, I use a low FODMAP diet for three weeks, and then a gluten free diet for months. I always end up going back to the gluten full foods I love, and over time, usually over six months, my GI symptoms return. I just started getting sick last night after only three months back on gluten.
I have removed all toxic people from my life, meditate, take nortriptyline, and stay away from pain meds and any NSADS. I thought I was just imagining the gluten connection. I’ve been tested for Celiac disease twice and it was negative. Yet over and over again it triggers me.
Thank you for writing about this topic. I just have to face the fact that I can’t eat gluten. It’s better than staying sick.
Good luck to you!
Thank you for sharing your thoughts, Marcy. I do agree, too that diet has a lot to do with my episodes. I try to stay away from things that bring me triggers, which is MSG and alcohol of any kind! Knowing our bodies and trusting it’s telling us what we need is a big part of what we are going through.
Wishing the absolute best in moving forward!
There is a condition where you have gluten sensitivity, but no autoimmune response. It might be worth trying a gluten- free diet and see what happens.
Sorry I know this is an old post, but I was diagnosed with CVS around the time this was posted. Eventually I saw a GI (4 month wait time!) and he agreed, but said he wanted to do tests to rule out everything else. He was certain it was CVS, but the tests came back, strong presumptive positive for Celiac! Biopsy to see what stage coming up. Good luck everyone! ♥️
My child right now is dealing with constant vomiting and belly pain.. The pediatrician ruled it abdominal migraines. I couldn’t get her in to see a pediatric gastroenterologist until April. But I notice her vomiting is often trigger two hours after eating something with gluten. I wonder if there is a correlation. Thank you for writing this blog!
Sorry to hear that you have a sick child. There do seem to be certain foods that trigger me in getting sick, so this is entirely possible. The triggers seem to be different from person to person suffering. I don’t do well with alcohol or msg. I’m taking nortriptyline and have not had a spell in over three years. It is a migraine medicine. Hope that you can find what works for her.
It’s nice to know that those suffering from cvs aren’t alone. I came across this site when trying to research if anyone had experienced a relation between cvs and gluten.
In 2019 my then 5yr old daughter had what I believe to be her first episode of CVS. At first we thought it was a tummy bug. But then when the “tummy bug” came back every 3-4wks (feb 19’ to aug 19’) almost on the dot I began to suspect something else. First we investigated the water (we use a well). Perhaps she was getting sick from a parasite. The water came back clear. Then I started to wonder if it could be something she was eating. We had a celiac test done at the end of august. The first week in September it came back negative. However her ANA was a soaring positive at 1:1280. I started researching and ended up putting her on the AIP (auto immune paleo protocol) the week we got the results. She was on the diet for a month and I did it with her. After that we introduced all foods back except gluten. From Sept 20’ to Jan 20’ she didn’t have a single episode on a gf diet. In Feb of 2020 she needed to have a diagnostic food panel done I took her off the gf diet and let her eat whatever she wanted. She was suppose to do this for 4-6wks to make sure the food proteins were in her blood for testing. Only 3 weeks in to this “eating whatever” and she had a CVS episode. We had her tested for celiac again at the same time. It came back negative. Her blood panel showed a moderate/severe reaction to rye which I believe is due to the gluten. I put her back on GF and she hasn’t had an episode since.
We are having additional testing done to work out why her Ana is high but haven’t received answers. She still complains about her tummy and head ever so often so I know there is something subtly aggravating the condition but haven’t figured out what it is
All that to say if you have cvs try aip or gf and see if it helps.
Thank you for taking the time to both read and respond. I’m sorry that your daughter has been suffering. Very interesting to hear about her situation. I have noticed that if there is food with msg, it triggers me to get sick. Can’t eat at any Tex Mex places or even some Chinese restaurants. I think certain foods, moods, and situations can trigger the cvs, but it’s not what is causing it. I’ve come to accept that it’s a chronic illness that I’m always going to have to deal with, unfortunately. For me it’s more about keeping a routine than anything. Making sure that I eat something when I get up in the morning, not drinking any alcohol or something that triggers sickness, make sure I have my medicines with me when I leave the house, etc. I hope your daughter can “grow out of it” like some do. No child should have to deal with this intense illness.
It’s nice to know that those suffering from cvs aren’t alone. I came across this site when trying to research if anyone had experienced a relation between cvs and gluten.
In 2020 my then 5yr old daughter had what I believe to be her first episode of CVS. At first we thought it was a tummy bug. But then when the “tummy bug” came back every 3-4wks (feb 20’ to aug 20’) almost on the dot I began to suspect something else. First we investigated the water (we use a well). Perhaps she was getting sick from a parasite. The water came back clear. Then I started to wonder if it could be something she was eating. We had a celiac test done at the end of august. The first week in September it came back negative. However her ANA was a soaring positive at 1:1280. I started researching and ended up putting her on the AIP (auto immune paleo protocol) the week we got the results. She was on the diet for a month and I did it with her. After that we introduced all foods back except gluten. From Sept 20’ to Jan 21’ she didn’t have a single episode on a gf diet. In Feb of 2021 she needed to have a diagnostic food panel done I took her off the gf diet and let her eat whatever she wanted. She was suppose to do this for 4-6wks to make sure the food proteins were in her blood for testing. Only 3 weeks in to this “eating whatever” and she had a CVS episode. We had her tested for celiac again at the same time. It came back negative. Her blood panel showed a moderate/severe reaction to rye which I believe is due to the gluten. I put her back on GF and she hasn’t had an episode since.
We are having additional testing done to work out why her Ana is high but haven’t received answers. She still complains about her tummy and head so I know there is something subtly aggravating the condition but haven’t figured out what it could be
Anyways, all this to say if you have cvs try aip or gf diet. It could really make a difference