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CVS (Cyclic vomiting syndrome)


Marky0320

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Marky0320 Newbie

Is CVS a common symptom of Celiac Disease?


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trents Grand Master

Welcome to the forum, @Marky0320!

Simple nausea and emesis is common with celiac disease when gluten is ingested but I have not heard of a connection between CVS and celiac disease per se. Are you asking this question as one who has already been officially diagnosed with celiac disease or as someone who is investigating the possibility of having celiac disease?

Marky0320 Newbie

I'm investigating the possibility of having celiac disease. My kid has Coffins Lowery syndrome, a rare form of Austism, and constantly has these CVS episodes. We suspect it could be related to Gluten sensitivity or celiac. We just started the diet last week, and we'll keep an eye on any improvements.

trents Grand Master
(edited)

Be aware that putting your child on a gluten free diet ahead of an official celiac diagnosis will invalidate any attempt to arrive at an official diagnosis. If at some point in time after commencing a gluten free diet you wish to have your child tested for celiac disease, he/she would need to go back to eating normal amounts of gluten for weeks/months leading up to the testing date. And it is often the case that once gluten has been withdrawn for a significant amount of time, the reactions are much stronger when going back on it.

Edited by trents
Scott Adams Grand Master

Cyclic Vomiting Syndrome (CVS) is not a common symptom of celiac disease, but there can be occasional overlap—particularly in children. Celiac disease typically presents with symptoms like chronic diarrhea, abdominal pain, fatigue, and nutrient deficiencies, while CVS is marked by repeated, intense vomiting episodes separated by periods of normal health. In rare cases, undiagnosed celiac disease can cause recurrent vomiting that mimics CVS, and symptoms may resolve on a gluten-free diet. Because of this, celiac disease should be ruled out in anyone diagnosed with CVS, especially if there are other gastrointestinal or nutritional concerns. However, vomiting alone is more often related to other conditions such as migraines or autonomic dysfunction.

  • 2 weeks later...
knitty kitty Grand Master
(edited)

Cyclic Vomiting Syndrome may be related to Thiamine Vitamin B1  deficiency.    

Hyperemesis is a symptom of thiamine deficiency.  Thiamine deficiency symptoms can wax and wane mysteriously depending on how much thiamine is absorbed from the diet.  A twenty percent increase in dietary thiamine results in an eighty percent increase in brain function and decrease of symptoms.  Eating a diet high in carbohydrates can result in thiamine deficiency.  

Many children on the Autism spectrum benefit from supplementing Thiamine.  See the research done by Dr. Derrick Lonsdale and Dr. Chandler Marrs' at the website hormonesmatter.com, or published on NIH pubmed.

Edited by knitty kitty
Typo correction
Marky0320 Newbie

Thanks you for this info! I will definitely do more research on it!


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knitty kitty Grand Master
Marky0320 Newbie

Thank you! This is very useful info!

 

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    • trents
      TTG would refer to a blood antibody test. Not valid if you are already eating gluten free or mostly so. DQH would refer to a genetic test to see if you possess either or both of the two genes that have been connected most strongly to developing active celiac disease. The genetic test is more of a rule out measure than a diagnostic test as about 40% of the general population have one or both of those genes but only about 1% of the general population develops active celiac disease. If you don't have the genes but gluten causes you issues then the conclusion is NCGS (Non Celiac Gluten Sensitivity) as opposed to celiac disease. So, the genetic testing helps with a differential diagnosis. I don't know about the 2P. 2 Pairs of genes?
    • Scott Adams
      Tell him to get me a case...just kidding! I wonder why they are not labelled gluten-free here in the USA? They don't have gluten ingredients.
    • Pamela Kay
      Glad this helped. There are lots of alternative breads out there, so someone has likely made some sort of paleo bread with no grain. And if you bake, experiment with some of the alternative flours to see what you can come up with. If you commit to the gluten-free diet 100%, you may want to do a bit of research on some of the tricker aspects of getting gluten out of your diet, such as cross contamination in the home kitchen (pots and pans, cutting boards, toaster, airborne flour). Don't feel you have to do everything at once, or let this overwhelm you. I've always said that going gluten free is a process, not a moment. The reason I mention this is that, if you think you are gluten-free, but still having symptoms, you may realize that even minute amounts of gluten cause a reaction for a while. Let me know if you have any questions.  Pam
    • Scott Adams
      The doctor was correct--if you are gluten-free the blood panel for celiac disease will not work, you would need to go on gluten challenge in order to be tested. Here is more info about how to do a gluten challenge for a celiac disease blood panel, or for an endoscopy: and this recent study recommends 4-6 slices of wheat bread per day:   This article might be helpful. It breaks down each type of test, and what a positive results means in terms of the probability that you might have celiac disease. One test that always needs to be done is the IgA Levels/Deficiency Test (often called "Total IGA") because some people are naturally IGA deficient, and if this is the case, then certain blood tests for celiac disease might be false-negative, and other types of tests need to be done to make an accurate diagnosis. The article includes the "Mayo Clinic Protocol," which is the best overall protocol for results to be ~98% accurate.    
    • Scott Adams
      It could, but it could also mean that gluten still not being fully eliminated. It's important to get a celiac disease blood panel to help figure this out. For people with celiac disease hidden gluten in their diets is the main cause of elevated Tissue Transglutaminase IgA Antibodies (tTG-IgA), but there are other conditions that can cause damaged villi:    
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