Nausea and Vomiting Are Key Symptoms of Gluten Exposure in Celiac Patients

In searching for answers to my health problems, thiamine deficiency kept coming up again and again.    

I strongly believe thiamine deficiency to be at the root of Cyclic Vomiting Syndrome and all the throwing up problems after eating gluten (refeeding syndrome) described by our guests.  

I found these articles to be most helpful.  

Cyclic Vomiting Syndrome

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And Refeeding Syndrome

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I apologize for sending you off site for this information.  

My health has greatly improved since starting high dose thiamine supplementation.  (300mg/day).

I hope this helps!

1 hour ago, Rhyo9 said:

I wish I knew what would help you. I don't have Celiac - but what has helped me with GERD is cruciferous vegetables - broccoli sprouts and cabbage juice. The fiber from cruciferous veg can be difficult to digest, but the other compounds - most likely isothiocyanates (e.g.,  sulforaphane) and indoles - seem to have helped me and there is medical research showing them promoting gut motility and suppressing H. pylori (I tested negative for H. pylori, but I figure if sulforaphane can suppress H. pylori, perhaps it helps normalize the gut microbiome generally). I'm not sure, though, if they would be hard on your stomach. My daughter can't  have raw cruciferous veg due to her Oral Allergy Syndrome.

From what I've read, cyclical vomiting can have a number of causes - sometimes it's due to problems with metabolism. I found a doctor in Atlanta - Cynthia Rudert -  I thought she might be able to help my daughter, but I did not make an appt. since traveling when she was first released from the hospital and so underweight was not an option, and then she had school,  and now there's the pandemic. 

 

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@knitty knitty

Thanks for the information. The first source cites the book on thiamine by Chandler Marrs which I have wanted to get for some time, but it is terribly expensive. I may get it for myself for X-mas anyway. I am familiar with high dose thiamine from Parkinson's Disease forums; my father had Multiple System Atrophy [PD forums are more active than MSA since MSA is diagnosed pretty late and apathy is a symptom of the disease] and even though it is not supposed to be hereditary, I started having similar symptoms and believe I am in the prodrome stage - though I seem to have managed to reverse a lot of the symptoms with some (expensive) supplements and other interventions. My daughter's adverse drug reaction was neuroleptic malignant syndrome (to Reglan) which results from a sudden drop in dopaminergic activity. People with Lewy Body Dementia are more prone to NMS; I believe it could be an indicator that she is also at risk for synucleinopathy (PD, MSA and LBD are all synucleinopathies). She and I are both carriers for medium chain acyl-CoA dehydrogenase deficiency (a fatty acid oxidation disorder) and I believe, based on family history of hypoglycemia, that my father was also a carrier. I have lethargy and hypoglycemia attacks if I eat MCTs or lots of saturated fat; my symptoms did not start until my late teens. So far my daughter has not had hypoglycemia attacks; I try to limit her consumption of MCTs since I think over time damage to mitochondria will occur (similar to eating trans fats). I think my father's bout of otherwise unexplained rhabdomyolysis during the course of his MSA may have been due to MCADD deficiency manifesting under stress conditions.

I tried high dose thiamine Hcl a while back, but unfortunately developed a rash (red and itchy). I currently take benfotiamine at 150 mg/day.  I think Chandler Marrs recommends allithiamine; I have not tried it. I like that benfotiamine is also an Nrf2 activator.

My daughter is currently taking a balanced B supplement (Pure Encapsulations). I hesitate to try anything on her for fear of adverse reactions/unexpected consequences.

Try lipothiamine (tetrahydrofurfuryl disulfide (TTFD)).  It crosses the blood brain barrier while benfotiamine does not.  I was amazed at the difference.  I've tried allithiamine (high dose made me smell like garlic), benfotiamine, lipothiamine and thiamine HCl (supplement with niacin, riboflavin, Omega 3s and Vitamin C and the rash goes away).  Lipothiamine is my favorite by far.  

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I do highly recommend the book by Dr. Chandler Marrs and Dr. Derrick Lonsdale.  It's worth every penny!  There used to be a coupon on their website if the book was ordered through the publisher.  

The doctors explain in their book how most of the things you mentioned go back to thiamine and mitochondrial dysfunction.  

So glad to have met another fan of the doctors!

7 hours ago, Rhyo9 said:

I think my father's bout of otherwise unexplained rhabdomyolysis during the course of his MSA may have been due to MCADD deficiency manifesting under stress conditions.

On 8/31/2020 at 6:16 PM, knitty kitty said:

I strongly believe thiamine deficiency to be at the root of Cyclic Vomiting Syndrome and all the throwing up problems after eating gluten (refeeding syndrome) described by our guests.  

Rhyo9 and Knitty Kitty,

Here is some research that might help both of you.

To follow on what Knitty Kitty said about Cyclic Vomiting.

A Thiamine deficiency has now been shown to be the trigger for Anorexia....

See this research entitled  "Thiamine deficiency induces anorexia by inhibiting hypothalamic AMPK"

https://pubmed.ncbi.nlm.nih.gov/24607345/

Rhy09 for your Dad some forms of MADD are Riboflavin responsive.

I hope this is helpful but it is not medical advise.

Posterboy,

@knitty kitty

Thanks so much for the coupon information; I'm looking forward to my x-mas gift.

Dr Costantini also did research on HDT and was apparently a great doctor to his PD patients - always available to answer their questions. It was so sad to hear about his passing from covid earlier this year - I hope others pick up the torch on HDT and PD.

I think I was on all the other stuff when I tried HDT - but maybe not enough fish oil. I tend to underdose as it is expensive and for some reason makes my acne worse.

@ Posterboy

My father already passed away a few years ago. He had been diagnosed with a whole slew of things before they finally gave him the MSA diagnosis, and I think that's typical. Sadly, that does not leave much time for interventions and as I mentioned patients tend to be quite resigned to their fate by that time. I saw in the news that the ALS ice bucket challenge money has brought returns in the form of promising research results. ALS is well known among the public but MSA has a similar rate in the population and many people have never heard of it; the ALS cause has definitely benefited from patient advocacy.

I take riboflavin along with ALCAR, carnitine fumarate, MitoQ (only 5 mg), ubiquinol, PQQ and other B vitamins. MitoQ/ubiquinol fixed my dizziness on standing. I have wondered if I should give my daughter ALCAR or carnitine fumarate as carnitine is depleted in uncontrolled Celiac - she's been gluten-free for a year but her antibody titre is still high.

Rhyo9,

You might also try taking some Niacin/Niacinamide.

Niacin and its metabolism has been shown to be important in Parkinson's Disease.

Here is the research.

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I researched this for a friend of mine...but the doctor's didn't believe in Vitamins and so they wouldn't let him take it.

He has now died from complications of Parkinson's disease....

I am not saying it would of saved him.....but I don't think it would of hurt anything for them to give it a try...

B1/B2/B3 has now been studied and shown to work synergistically together to down regulate inflammation in the body.

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And yet it will probably be another 10 or 15 years before mainstream medical doctor's embrace Vitamins as a prophylactic for disease....if then....

Yet, almost every time I have found an un-diagnosed vitamin deficiency.....my health got better after supplementation.

I hope this is helpful but it is not medical advise.

Posterboy,

I've been gluten free for 26 years. Also have dermatitis herpitiformis. Even though prior to the rash and feeling rotten for years. Ulcers, constant heartburn etc had endoscopy, and skin biopsy to confirm both. I've eaten gluten three times by mistake in the past two years. Within an 1-2 hours. Nausea followed by pain followed by being violently sick. Once I throw up a few times. I get back to normal within a few hours. 

On 3/3/2020 at 7:59 AM, Guest DJDonald said:

Those were always my symptoms - always about 3 hr after accidentally eating gluten (and how I found the Twizzlers have wheat). I never had diarrhea. In fact I never had symptoms until I stopped eating gluten and then accidentally ate gluten. My only signs before diagnosis (by endoscopy and antibody tests) were osteoporosis and iron deficient anemia with low hemoglobin. The anemia and low hemoglobin resolved after going gluten-free, but I still have the osteoporosis. 

I also never had any symptoms until I stoped eating gluten. I used to eat gluten daily all my life until I was diagnosed at 29. 
Now I vomit after 2-3 hours of eating gluten with 10-30 minutes interval until all the food is out. I have chills, fever, cold sweat, shallow breathing, pale skin. Feeling so tired that I can’t  move for several hours and could just lie on the floor. I have a fear it could happen to me in a public place. 
Several times anti vomiting pills helped, but I need to take it right after I suspect gluten. It will not help when I already feel nausea. 

31 minutes ago, Guest Tina said:

I also never had any symptoms until I stoped eating gluten. I used to eat gluten daily all my life until I was diagnosed at 29. 
Now I vomit after 2-3 hours of eating gluten with 10-30 minutes interval until all the food is out. I have chills, fever, cold sweat, shallow breathing, pale skin. Feeling so tired that I can’t  move for several hours and could just lie on the floor. I have a fear it could happen to me in a public place. 
Several times anti vomiting pills helped, but I need to take it right after I suspect gluten. It will not help when I already feel nausea. 

 

My symptoms exactly - I could have written this myself.  

My experience exactly after years of gluten free eating. Two to three hr. of emesis and severe abdominal cramping followed by several hours of diarrhea if I get a significant exposure to gluten now. No tolerance for it anymore.

I used to have diarrhea with flushes, chills etc, and a sore stomach for days or weeks afterwards, but now it's changed to vomiting I just can't risk eating out any more.   The shallow breathing and the feeling I might faint... that's also something that is fairly new.  I'm just hoping that that's where it stays because I'm not sure that I could cope with an even worse reaction.   

Hi everyone,

For the last 4 months my wife has been experiencing nausea every morning and it's really severe, as the day goes on the nausea is still present but does ease off a bit.

The last 10 days she also now has dihorrea in the mornings, as well as the nausea.

She needs to do a few more blood to try establish the problems, and done a stool sample. But this can take an age to get the results and next steps.

Has anyone experienced anything similar? 

On top of this she also had dizziness in the last 4 months, an MRI revealed lesions on the brain (after initial vertigo diagnosis) but the neurologists suggest the brain lesions and stomach issues are not related and 2 separate issues.

It's crazy nowadays how we have to ask for advice on here, access to doctors and specialists is near impossible in the UK recently.

Appreciate any thoughts.

Thanks for your time.