Histamine Intolerance after Gluten Challenge

[BushbabyLou]

Hi everyone,

I recently did the gluten challenge for six weeks but had a negative blood result. Since going gluten free again I have been feeling rubbish still and have managed to deduce that I have histamine intolerance. As it has occurred after the gluten challenge, could this be a sign I have celiac or just coincidence? 
 

I have the alpha subunit for DQ8, a lot of celiac symptoms and have Hashimoto’s and Sjögren’s syndrome. 
 

I have been referred to a gastroenterologist but don’t know when so have stopped eating gluten until I see them and then will start again before biopsy. 

[trents]

BushbabyLou, can you share with us exactly which serum antibody tests were run, their scores and their negative-positive reference ranges? Many doctors don't run a full celiac panel but only order the tTG-IGA. Some people with celiac disease will show negative in this test but positives in other blood tests that can be run for celiac disease.

Histamine intolerance is not necessarily tied to celiac disease. It is caused by under production of DOA which is likely a genetic issue. DOA breaks down histamines in the body.

Edited June 9, 2022 by trents

[BushbabyLou]

11 minutes ago, trents said:

BushbabyLou, can you share with us exactly which serum antibody tests were run, their scores and their negative-positive reference ranges? Many doctors don't run a full celiac panel but only order the tTG-IGA. Some people with celiac disease will show negative in this test but positives in other blood tests that can be run for celiac disease.

Histamine intolerance is not necessarily tied to celiac disease. It is caused by under production of DOA which is likely a genetic issue. DOA breaks down histamines in the body.

I had

TTG 0.2 (range 0-10) 

IgA 0.99 (range 0.8-2.8)

My histamine reaction was after the gluten challenge so thought they might be related. 

 

[trents]

It is as I feared. Your doctor ran only the tTG-IGA and the total serum IGA tests instead of a more complete celiac diagnostic panel. I wish he/she had also run the Deamidated gliadin peptide (DGP IgA and IgG) and maybe even the IgA Endomysial antibody (EMA). Some celiacs have atypical immune system responses and are missed by the tTG-IGA.

https://celiac.org/about-celiac-disease/screening-and-diagnosis/screening/

Edited June 9, 2022 by trents

[BushbabyLou]

2 hours ago, trents said:

It is as I feared. Your doctor ran only the tTG-IGA and the total serum IGA tests instead of a more complete celiac diagnostic panel. I wish he/she had also run the Deamidated gliadin peptide (DGP IgA and IgG) and maybe even the IgA Endomysial antibody (EMA). Some celiacs have atypical immune system responses and are missed by the tTG-IGA.

https://celiac.org/about-celiac-disease/screening-and-diagnosis/screening/

Thank you for the info. Fingers crossed I get some answers.

[Kate333]

12 hours ago, trents said:

BushbabyLou, can you share with us exactly which serum antibody tests were run, their scores and their negative-positive reference ranges? Many doctors don't run a full celiac panel but only order the tTG-IGA. Some people with celiac disease will show negative in this test but positives in other blood tests that can be run for celiac disease.

Histamine intolerance is not necessarily tied to celiac disease. It is caused by under production of DOA which is likely a genetic issue. DOA breaks down histamines in the body.

Trents, friendly correction.  I think you meant to say "DAO" (diamine oxidase enzyme), not "DOA"?  (DOA is an acronym for dead on arrival...😉)

Also, decline in DAO/histamine intolerance--esp. later in life--can be triggered by many things, including severe stress, advanced aging of the GI tract and, of course, activated celiac disease, which often leads to many food intolerances besides gluten, so perhaps characterizing histamine intolerance as purely a genetic flaw/issue is a bit too limiting?  

[trents]

Yep, I meant DAO. Thanks for catching that. Such an easy mistake, I think, given that we've all probably heard DOA much more often than DAO.

[Posterboy]

On 6/9/2022 at 5:18 AM, BushbabyLou said:

I have the alpha subunit for DQ8, a lot of celiac symptoms and have Hashimoto’s and Sjögren’s syndrome. 

BushbabyLou,

Niacin is a histamine regulator in the body......once you become too low in your body....it goes "Haywire" to quote a technical term.

If you begin taking some Niacinamide it should help your Sjorgen's Syndrome symptom's......

But you are not only low in Niacin but Riboflavin and Thiamine as well......so taking Niacinamide with a good B-Complex will be helpful!

Pellagra today (with it's many faces) get incorporated into several different diseases types......two of those types Pellagra often shows up in are GI diseases.....and especially Skin related diseases.

Here is a nice article about it from the Dermatology Advisor.

https://www.dermatologyadvisor.com/home/decision-support-in-medicine/dermatology/pellagra/

It will show in RA as well sometimes too!  Here is an article about it.

https://www.researchgate.net/publication/314234899_Cutaneous_manifestations_of_Pellagra_in_a_patient_with_rheumatoid_arthritis

Here is the research that links your Sjorgen's disease to Pellagra as well.

https://www.academia.edu/24915500/Pellagra_in_a_patient_with_primary_Sjogrens_syndrome

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

Good luck on your continued journey!

2 Timothy 2: 7 “Consider what I say; and the Lord give thee understanding in all things” this included.

Posterboy by the grace of God,

[BushbabyLou]

33 minutes ago, Posterboy said:

BushbabyLou,

Niacin is a histamine regulator in the body......once you become too low in your body....it goes "Haywire" to quote a technical term.

If you begin taking some Niacinamide it should help your Sjorgen's Syndrome symptom's......

But you are not only low in Niacin but Riboflavin and Thiamine as well......so taking Niacinamide with a good B-Complex will be helpful!

Pellagra today (with it's many faces) get incorporated into several different diseases types......two of those types Pellagra often shows up in are GI diseases.....and especially Skin related diseases.

Here is a nice article about it from the Dermatology Advisor.

https://www.dermatologyadvisor.com/home/decision-support-in-medicine/dermatology/pellagra/

It will show in RA as well sometimes too!  Here is an article about it.

https://www.researchgate.net/publication/314234899_Cutaneous_manifestations_of_Pellagra_in_a_patient_with_rheumatoid_arthritis

Here is the research that links your Sjorgen's disease to Pellagra as well.

https://www.academia.edu/24915500/Pellagra_in_a_patient_with_primary_Sjogrens_syndrome

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

Good luck on your continued journey!

2 Timothy 2: 7 “Consider what I say; and the Lord give thee understanding in all things” this included.

Posterboy by the grace of God,

I don’t have any of those symptoms. I don’t think it’s pellagra. Thank you for the info though.

[Posterboy]

On 6/9/2022 at 5:18 AM, BushbabyLou said:

and have Hashimoto’s and Sjögren’s syndrome. 

BushBabyLou,

What do you mean you don't have any of those symptom's.......isn't this a quote by you saying you have Sjogrens Syndrome?  Or did I misunderstand what you wrote?

It is called Co-Morbidity......Both can (and do) occur in the same person.....

What I quoted is where both were occuring the same person and one will mimic the other.....leaving the one undiagnosed. or misdiagnosed as the other disease with no real improvement in symptoms?

quoting from another blog post I wrote....

"Imitation is the sincerest form of flattery -- unless it is medicine then it is the unkindest cut. . .":

Pellagra mimic the symptom's you are describing or vice versa.

Maybe it will help if I say it this way....I had Celiac disease and developed Pellagra......

Here is the blog post that goes into more detail......if you care to read it....

Good luck on your continue Journey(s)!

I have learned I can only help those who want help!

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

Posterboy by the grace of God,

 

[BushbabyLou]

On 6/25/2022 at 12:56 PM, Posterboy said:

BushBabyLou,

What do you mean you don't have any of those symptom's.......isn't this a quote by you saying you have Sjogrens Syndrome?  Or did I misunderstand what you wrote?

It is called Co-Morbidity......Both can (and do) occur in the same person.....

What I quoted is where both were occuring the same person and one will mimic the other.....leaving the one undiagnosed. or misdiagnosed as the other disease with no real improvement in symptoms?

quoting from another blog post I wrote....

"Imitation is the sincerest form of flattery -- unless it is medicine then it is the unkindest cut. . .":

Pellagra mimic the symptom's you are describing or vice versa.

Maybe it will help if I say it this way....I had Celiac disease and developed Pellagra......

Here is the blog post that goes into more detail......if you care to read it....

Good luck on your continue Journey(s)!

I have learned I can only help those who want help!

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

Posterboy by the grace of God,

 

I have Sjögren’s syndrome but I don’t have any of the symptoms of pellagra. I have histamine intolerance or possible MCAS but not pellagra. 

[knitty kitty]

There's a genetic overlap between Celiac and Sjögren's syndrome...

Read more here about the association....

Celiac disease and Sjögren’s syndrome: A case report and review of literature

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7520766/

[knitty kitty]

These articles explain what  @trents was talking about, DAO and histamine intolerance...

Histamine Intolerance—The More We Know the Less We Know. A Review

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8308327/

And...

Histamine Intolerance Originates in the Gut

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8069563/

 

[Posterboy]

On 6/27/2022 at 4:53 PM, BushbabyLou said:

I have Sjögren’s syndrome but I don’t have any of the symptoms of pellagra. I have histamine intolerance or possible MCAS but not pellagra. 

Bushbaby Lou,

It would be more correct to say you have Pellagra Sine Pellagra......which is essentially Pellagra without extensive Skin involvement.

Metabolically speaking your Kyneurine Pathway is impaired leading to your Sjorgen's Syndrome and/or Lupus diagnosis.

They have similar symptom's and very similar metabolic origins.

I wrote a Posterboy blog post that might help you to read it.

Your Metabolic fire breaks to the service and causes skin issues when the Kynurenine Pathway completely breaks down .......it is only partially broke now and why you have only develop Pellagra Sine Pellagra instead.

Here is some research on it.....maybe it will help you to read it.

Entitled "Kynurenine pathway is altered in patients with SLE and associated with severe fatigue"

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5976103/

quoting from their conclusion....

"IDO inhibitors or niacin or (Niacinamide) (B3) supplementation, which suppresses IDO activity, merit further investigation as treatments in SLE."

It is is this IDO activity that is leading to your Histamine INtolerance and taking  Niacinamide (flush free form) or Niacin (flushing) will release the built up Histamines......opening the flood gates.....again releasing the built up Histamines........relieving your Histamine INtolerance.

I could go own but this will get you stared in the right direction....

See also this thread where T-Burd's daughter was helped with PMLE ( a photo eruptive skin condition) by Niacin or Niacinamide supplementation (they didn't know which form of the Vitamin they used)....

Go back and read the Dermatology Advisor article I think it will help you.

I have been YOU!

You can't win a two front war! If one or more Vitamin deficiencies is triggering your Sjogren's Syndrome then you have nothing to loose but if I am right you could begin to feel better in the meantime! The road to health is ahead which path will you choose to supplement or to not supplement?

Here is where I explain how I found peace with Vitamin Supplementation.

Good luck on your continued journey!

2 Timothy 2: 7 “Consider what I say; and the Lord give thee understanding in all things” this included.

Posterboy by the grace of God,

[Rogol72]

On 6/29/2022 at 11:50 PM, Posterboy said:

Bushbaby Lou,

It would be more correct to say you have Pellagra Sine Pellagra......which is essentially Pellagra without extensive Skin involvement.

Metabolically speaking your Kyneurine Pathway is impaired leading to your Sjorgen's Syndrome and/or Lupus diagnosis.

They have similar symptom's and very similar metabolic origins.

I wrote a Posterboy blog post that might help you to read it.

Your Metabolic fire breaks to the service and causes skin issues when the Kynurenine Pathway completely breaks down .......it is only partially broke now and why you have only develop Pellagra Sine Pellagra instead.

Here is some research on it.....maybe it will help you to read it.

Entitled "Kynurenine pathway is altered in patients with SLE and associated with severe fatigue"

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5976103/

quoting from their conclusion....

"IDO inhibitors or niacin or (Niacinamide) (B3) supplementation, which suppresses IDO activity, merit further investigation as treatments in SLE."

It is is this IDO activity that is leading to your Histamine INtolerance and taking  Niacinamide (flush free form) or Niacin (flushing) will release the built up Histamines......opening the flood gates.....again releasing the built up Histamines........relieving your Histamine INtolerance.

I could go own but this will get you stared in the right direction....

See also this thread where T-Burd's daughter was helped with PMLE ( a photo eruptive skin condition) by Niacin or Niacinamide supplementation (they didn't know which form of the Vitamin they used)....

Go back and read the Dermatology Advisor article I think it will help you.

I have been YOU!

You can't win a two front war! If one or more Vitamin deficiencies is triggering your Sjogren's Syndrome then you have nothing to loose but if I am right you could begin to feel better in the meantime! The road to health is ahead which path will you choose to supplement or to not supplement?

Here is where I explain how I found peace with Vitamin Supplementation.

Good luck on your continued journey!

2 Timothy 2: 7 “Consider what I say; and the Lord give thee understanding in all things” this included.

Posterboy by the grace of God,

I'm a little confused because I've read in some sources that Niacin causes the release of histamine, so does it trigger the release of new histamine or just that it flushes (in the case of Niacin) out the existing histamine built up in the body?

 

[knitty kitty]

10 hours ago, Rogol72 said:

I'm a little confused because I've read in some sources that Niacin causes the release of histamine, so does it trigger the release of new histamine or just that it flushes (in the case of Niacin) out the existing histamine built up in the body?

 

Niacin in the form of nicotinic acid will cause vasodilation.  Vasodilation is when your blood vessels expand allowing for more blood flow.  Histamine is released as part of the vasodilation process.  It's a normal body process to release histamine as a signal for certain things to happen.  Our bodies make and break down histamine constantly. 

We can run into problems if we can't break down histamine as fast as it's produced.  

We need methyl donors to break down histamine.  Methyl donors are Vitamin B12 (methylcobalamine), Vitamin B9 Folate (methylfolate, methyltetrahydrofolate), and Vitamin C ascorbic acid.  Vitamin B6 Pyridoxine and Vitamin B2 Riboflavin are needed to make enzymes that also break down histamine.  Choline makes the enzyme betaine which helps break down histamine, too.

There are Celiacs with the MTHFR genetic mutation that are better at utilizing the methylated forms of certain vitamins like methylcobalamine and methylfolate.  

Niacinamide is another form of Niacin that our bodies can easily convert to niacin.  Niacinamide does NOT cause flushing.  Tryptophan is another form of Niacin that our bodies can convert to niacin.  Tryptophan does not cause flushing.  

I take my Niacin with Vitamin C and methylcobalamine and my B Complex, and my flushing is gone in about twenty minutes.  

Edited July 8, 2022 by knitty kitty
Typo correction

[Blue-Sky]

I am not sure if niacin triggers histamine production or just release. 

I think tryptophan and niacin does have benefits which can be achieved at below drug levels but Niacin can also cause major health problems at high drug type dosages. According to the link below the quick release niacin is safer than the slow release. 

https://ods.od.nih.gov/factsheets/Niacin-HealthProfessional/#en12

[Rogol72]

3 hours ago, knitty kitty said:

Niacin in the form of nicotinic acid will cause vasodilation.  Vasodilation is when your blood vessels expand allowing for more blood flow.  Histamine is released as part of the vasodilation process.  It's a normal body process to release histamine as a signal for certain things to happen.  Our bodies make and break down histamine constantly. 

We can run into problems if we can't break down histamine as fast as it's produced.  

We need methyl donors to break down histamine.  Methyl donors are Vitamin B12 (methylcobalamine), Vitamin B9 Folate (methylfolate, methyltetrahydrofolate), and Vitamin C ascorbic acid.  Vitamin B6 Pyridoxine and Vitamin B2 Riboflavin are needed to make enzymes that also break down histamine.  Choline makes the enzyme betaine which helps break down histamine, too.

There are Celiacs with the MTHFR genetic mutation that are better at utilizing the methylated forms of certain vitamins like methylcobalamine and methylfolate.  

Niacinamide is another form of Niacin that our bodies can easily convert to niacin.  Niacinamide does NOT cause flushing.  Tryptophan is another form of Niacin that our bodies can convert to niacin.  Tryptophan does not cause flushing.  

I take my Niacin with Vitamin C and methylcobalamine and my B Complex, and my flushing is gone in about twenty minutes.  

Getting to grips with reducing/controlling histamine is the final piece of my puzzle! I'm emptying my histamine bucket! The brain fog and agitation it causes is no fun at all. I took Niacin 50mg a few months ago for a few days but the flushing was too much. Since then, I've been concentrating on getting polyphenols into the body so as to build up levels of Akkermansia muciniphila and  Faecalibacterium prausnitzii on the advice of my naturopath and it's working. Loads of greens, Kale and Berry smoothies for breakfast, and Green Cabbage with dinner. Bananas, Strawberries and ground beef open the histamine floodgates for me!! I started taking Niacin again two days ago 50mg and the flushing is barely noticeable. I take a Methyl B complex and it appears to work for me, I suspect I may be a MTHFRer!!

Are there Coeliacs that also have MCAS or that can develop MCAS?

This is interesting ... https://mthfrsupport.com.au/2016/09/dao-deficiency-and-histamine-the-unlikely-connection/

 

[Posterboy]

13 hours ago, Rogol72 said:

or just that it flushes (in the case of Niacin) out the existing histamine built up in the body?

13 hours ago, Rogol72 said:

I'm a little confused because I've read in some sources that Niacin causes the release of histamine, so does it trigger the release of new histamine or just that it flushes (in the case of Niacin) out the existing histamine built up in the body?

 

Rogol72,

I think you said it well.......Blue Sky and Knitty Kitty have also given you good advice.

The Niacin form will trigger the release of Histamine stored in your skin.....usually about 3 days worth.

If you have skin issues......the Niacin form will take care of the "itchy and scratchy" sensations you are having....

See this article about how to use the "Niacin Flush" to your advantage to treat Seasonal Allergies.

http://getwellstaywellathome.com/blog/2015/06/seasonal-allergies-and-the-niacin-flush/

The Niacin flushing is a natural and healthy response......but if it bothers you -- you can always use the Niacinamide from instead....which is  naturally Flush Free because it doesn't work through the Kidneys the was Niacin aka Nicotinic Acid but be cautioned it is harder to find in brick and motor stores...

The best way to use Niacin is to titrate it up in 50mg doses......with food as to avoid intense flushing.

But the flushing only lasts about 30 minutes (especially on an empty stomach).......but can be mitigated by taking an aspirin with it.

But I find I can of like the flush.......I will test myself ever so often.....to see if I still flush......as a self test to see if I need some more niacin as an example....

I only use it now.....when I having seasonal allergies (though it is only occasionally now that I need to do that) as an example.

See this article that explains why the "Niacin Flush" is healthy except in Pharmacological doses say over 1 Gram for over  a year or more....I call it the "Short Answer"

https://medicalxpress.com/news/2012-04-cautions-drugs-block-niacin-flush.html

As Blue Sky noted.....the Niacin form is very safe and the flush is a healthy response as Knitty Kitty noted.

If you want to read the "Long Answer"......I read it (or scanned it once a few years ago) but be warned it is TL:DR for most people.......but you will learn everything you would ever want to know about Niacin....

https://life-enhancement.com/pages/why-the-niacin-flush-may-be-surprisingly-beneficial-to-your-health

(Responding when I saw your comment)

Then (if the Niacin flush bothers you) the Niacinamide form is the one you should be taking.....I wrote a blog post about this called "The Niacinamide Challenge" you can google for it....I think it will help you to read it...

Or read this Posterboy blog post where I explain why Niacinamide is the easier form of Niacin to take and why you would want too! that explains a lot of the same issues with what form of Niacin is best to take and why you would want too in the first place!

Good luck on your continued journey!

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

2 Timothy 2: 7 “Consider what I say; and the Lord give thee understanding in all things” this included.

Posterboy by the grace of God,

[knitty kitty]

@Rogol72,

Yes!  Mast Cell Activation Syndrome is found in Celiac Disease!

Coeliac Disease and Mast Cells

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6678566/

And...

Mast cells are associated with the onset and progression of celiac disease

https://pubmed.ncbi.nlm.nih.gov/27619824/

And...

Thiamine has been scientifically shown to modulate mast cell degranulation.

 

Increased mast cell degranulation within thalamus in early pre-lesion stages of an experimental model of Wernicke's encephalopathy

https://pubmed.ncbi.nlm.nih.gov/10411347/

"These data suggest that mast cell degranulation is a very early response induced by TD (Thiamine Deficiency)..."

And...

Regional changes in brain histamine levels following dietary-induced thiamine deficiency in rats

https://pubmed.ncbi.nlm.nih.gov/3221531/

"These data present a new finding that thiamine deficiency affects the central histaminergic neuron system as well as other monoaminergic systems."

 

And...

Effects of thiamine administration on hypothermia and hypothalamic histamine levels in dietary-induced thiamine deficient rats

https://pubmed.ncbi.nlm.nih.gov/2090843/

"...the increased histamine levels in the hypothalamus, especially those in its anterior region, are closely related to the hypothermia in thiamine-deficient rats."

Edited July 8, 2022 by knitty kitty
Add more information

[Blue-Sky]

1 hour ago, Rogol72 said:

I've been concentrating on getting polyphenols into the body so as to build up levels of Akkermansia muciniphila and  Faecalibacterium prausnitzii on the advice of my naturopath and it's working. Loads of greens, Kale and Berry smoothies for breakfast, and Green Cabbage with dinner. Bananas, Strawberries and ground beef open the histamine floodgates for me!!

Oh my.  Party time for those bacteria. 

The first bacteria is an interesting choice to try to get. I guess less is more?

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6223323/

1 hour ago, Rogol72 said:

Faecalibacterium prausnitzii 

Music to my ears.

[Blue-Sky]

The second bacteria makes the short chain fatty acid butyrate. Butyrate can be beneficial.  I don't know that it is especially good or anything beyond that about the microbe.

[Rogol72]

7 hours ago, Posterboy said:

Rogol72,

I think you said it well.......Blue Sky and Knitty Kitty have also given you good advice.

The Niacin form will trigger the release of Histamine stored in your skin.....usually about 3 days worth.

If you have skin issues......the Niacin form will take care of the "itchy and scratchy" sensations you are having....

See this article about how to use the "Niacin Flush" to your advantage to treat Seasonal Allergies.

http://getwellstaywellathome.com/blog/2015/06/seasonal-allergies-and-the-niacin-flush/

The Niacin flushing is a natural and healthy response......but if it bothers you -- you can always use the Niacinamide from instead....which is  naturally Flush Free because it doesn't work through the Kidneys the was Niacin aka Nicotinic Acid but be cautioned it is harder to find in brick and motor stores...

 

@Posterboy,

I have DH and am on Dapsone as needed to control it. I've made several unsuccessful attempts to get off it. I have normal blood sugar but a HA1C in the low 20s, a side effect of Dapsone.

I think it's time for Benfotiamine!

[Rogol72]

On 7/9/2022 at 6:57 AM, Rogol72 said:

@Posterboy,

I have DH and am on Dapsone as needed to control it. I've made several unsuccessful attempts to get off it. I have normal blood sugar but a HA1C in the low 20s, a side effect of Dapsone.

I think it's time for Benfotiamine!

Is there any brand of Benfotiamine that is preferable? Or are they all more or less equal? 

[Rogol72]

On 7/9/2022 at 6:57 AM, Rogol72 said:

@Posterboy,

I have DH and am on Dapsone as needed to control it. I've made several unsuccessful attempts to get off it. I have normal blood sugar but a HA1C in the low 20s, a side effect of Dapsone.

I think it's time for Benfotiamine!

Update: After taking 4 x 100mg Solgar Thiamine HCL for 4 days now I can definitely feel a big improvement. Clearly the 300mg to 400mg level is the therapeutic threshold to see benefits. Thanks for the suggestions folks. Much appreciated!!