CVS and Celiac Disease? Is there a relation?


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.

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  1. Kelley Fraser says:

    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.

    • Courtney Cole says:

      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.

  2. Marcus McCoy says:

    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.

  3. Marcus McCoy says:

    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

    • Courtney Cole says:

      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!

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