Confused - Genetic Codes

[MicheleBrand]

Hi,

My name is Michele.  I have been gluten-free for about 3 years now.  Pretty much - self diagnosed as my current doctors really don't help.  I am currently seeing a naturopathy doctor and took a genetic saliva test through EnteroLabs.  Here are my results:

HLA-DQB1 Molecular Analysis, Allele 1* 03:01

HLA-DQB1 Molecular Analysis, Allele 2* 03:03

Serological Equivalent HLA-DQ 3,3 (Subtype 7,9)

Nonceliac gluten sensitivity - 2 copies

Can nonceliac gluten sensitivity lead to celiac disease and other autoimmune diseases?  When I become glutened, I am sick for two to three weeks--physically and mentally.  I had a endoscope completed a few years ago---however, I was not eating gluten at the time---so it was negative for celiac sprue.  I get so confused with these codes.  I am not looking for the worse case diagnosis-celiac; however, I feel like whatever I have is pretty severe and life altering.  What weights my mind the most is my ten year old son that is positive for gluten antibodies; however, the pediatrician says he's negative for celiac through blood testing - and make no diet changes---just because he was below the positive range.  His IgA  Plus I know I have a double copy (of something), so he for sure has a bad gene.

 

I find articles linking DQB1*0303 to DQB1*8---but what does this all mean?  I feel like I've been navigating the past 3 years with trial and error.  and have made a lot of errors on the way.  

Thanks,

Michele

 

 

 

 

[trents]

Welcome to the forum, Michele!

The two genes that have been identified (so far) with risk of developing celiac disease are HLA-DQ2 and HLA-DQ8: https://nationalceliac.org/celiac-disease-questions/celiac-genes/

Researchers suspect there may be more genes involved and are actively researching this.

As far as I known, there have been no genes identified with NCGS. But I could be wrong. 

Some celiac disease experts believe NCGS may be a precursor to developing celiac disease, at least in some people. We know less about NCGS than we do celiac disease. 

Concerning your son, we get reports not infrequently on this forum where children have negative antibodies but have all the signs and symptoms of celiac disease. Do you know exactly what blood tests the pediatrician ran on your son? Can you post them along with reference ranges? Children's immune systems are still under development and so they often don't respond in the same way to testing as adults do. For children, it is important to run a full celiac panel and not just the tTG-IGA, the most common test run. Here is a primer for blood tests that can be run for celiac disease: https://celiac.org/about-celiac-disease/screening-and-diagnosis/screening/

[Scott Adams]

I trust Enterolab, which is run by Dr. Kenneth Fine, and if you believe in his approach he's way ahead of everyone, especially with regard to NCGS. This is an older article about him:
 

 

[trents]

50 minutes ago, Scott Adams said:

I trust Enterolab, which is run by Dr. Kenneth Fine, and if you believe in his approach he's way ahead of everyone, especially with regard to NCGS. This is an older article about him:
 

 

From his interview: "Which is going to mean, if you have two celiac genes or two gluten-sensitive genes, or a celiac gene and a gluten-sensitive gene that every child you have will have at least one of them."

He mentions "gluten-sensitive genes" but does not state which ones they may be. At least I don't discern that from the article. Is the making a distinction between celiac genes and NCGS genes or is he saying there isn't a sharp distinction between the two?

[Wheatwacked]

11 hours ago, MicheleBrand said:

What weights my mind the most is my ten year old son that is positive for gluten antibodies; however, the pediatrician says he's negative for celiac through blood testing - and make no diet changes

If your son feels better without gluten, why force him to eat it? Other than carbohydrate calories the nutrition in wheat flour is synthetic added back after milling.   Potatoes for B vitamins beans for folate. meat for iron eggs for choline.

"In our study, obesity prevalence has been positively associated with wheat availability, but inversely with both rice and maize availability. ...   https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5690357/"

Quote

The process of enriching flour restores its nutritive value by replacing nutrients lost during milling in amounts similar to those lost. Almost 95 percent of the white flour in the United States is enriched with iron and four of the B vitamins: thiamin, niacin, riboflavin and folic acid. By contrast, fortified flour may contain folic acid in amounts that exceed those present in whole-wheat flour. Calcium, a nutrient that is not naturally present in wheat kernels or whole-wheat flour, is another nutrient that may be present in fortified flour.   https://healthyeating.sfgate.com/best-elliptical-machines-13771768.html

 

[Scott Adams]

20 hours ago, trents said:

From his interview: "Which is going to mean, if you have two celiac genes or two gluten-sensitive genes, or a celiac gene and a gluten-sensitive gene that every child you have will have at least one of them."

He mentions "gluten-sensitive genes" but does not state which ones they may be. At least I don't discern that from the article. Is the making a distinction between celiac genes and NCGS genes or is he saying there isn't a sharp distinction between the two?

I have sent this question to Dr. Fine, and will share any answer I receive.

[trents]

14 minutes ago, Scott Adams said:

I have sent this question to Dr. Fine, and will share any answer I receive.

Thanks, Scott.

The general impression I got from the article is that there are a lot more shades of gray with regard to gluten disorders than we are accustomed to thinking about. He seems to be saying the actual research doesn't quite fit our neatly defined little categories for these things such that individual cases have quite a bit of variation genetically and etiologically speaking.

Edited June 17, 2022 by trents

[T burd]

1 hour ago, Scott Adams said:

I have sent this question to Dr. Fine, and will share any answer I receive.

I think gluten sensitivity and celiac are in the same genes.

How do I order all his lab tests? I got my daughters’ Celiac genetic tests and then I started looking into it and realized that they’re only testing DQ2 and DQ8 at quest labs… and there are other genes that could allow celiac. My 1 daughter who reacts with PMLE when eating gluten and has other symptoms, but not gliadin antibodies has 1 celiac gene they tested for, but not another. 
I have the 2 typical genes and my other daughter has 2 as well. 
I never saw anybody say that there are that many more genes I knew that DQ7 Paired with DQ2 can also give celiac… and this is saying DQ9 also, and then DQ1 is gluten sensitivity gene? 
 

 

[Scott Adams]

Here is his site...looks the same since the 2000's 🙂

https://enterolab.com/ 

He also pioneered the concept that the very first place that anti-gliadin antibodies will show up is in the stool, then later the blood, and finally some will get flattened villi. He now does both blood and stool tests so that he can help those in the very first stage, which is non-celiac gluten sensitivity.

[Scott Adams]

He believes that anyone in any of these 3 stages should go gluten-free.

[trents]

5 minutes ago, Scott Adams said:

Here is his site...looks the same since the 2000's 🙂

https://enterolab.com/ 

He also pioneered the concept that the very first place that anti-gliadin antibodies will show up is in the stool, then later the blood, and finally some will get flattened villi. He now does both blood and stool tests so that he can help those in the very first stage, which is non-celiac gluten sensitivity.

So, Dr. Fine believes that gluten sensitivity (NCGS) is or can be preliminary to celiac disease, that it is not a distinct condition. Correct?

[T burd]

2 hours ago, Scott Adams said:

Here is his site...looks the same since the 2000's 🙂

https://enterolab.com/ 

He also pioneered the concept that the very first place that anti-gliadin antibodies will show up is in the stool, then later the blood, and finally some will get flattened villi. He now does both blood and stool tests so that he can help those in the very first stage, which is non-celiac gluten sensitivity.

Is he still researching? So if we want to order a stool test, do we need to find a doctor that sends to his lab? 

[knitty kitty]

On 6/17/2022 at 3:58 PM, T burd said:

I think gluten sensitivity and celiac are in the same genes.

How do I order all his lab tests? I got my daughters’ Celiac genetic tests and then I started looking into it and realized that they’re only testing DQ2 and DQ8 at quest labs… and there are other genes that could allow celiac. My 1 daughter who reacts with PMLE when eating gluten and has other symptoms, but not gliadin antibodies has 1 celiac gene they tested for, but not another. 
I have the 2 typical genes and my other daughter has 2 as well. 
I never saw anybody say that there are that many more genes I knew that DQ7 Paired with DQ2 can also give celiac… and this is saying DQ9 also, and then DQ1 is gluten sensitivity gene? 
 

 

A person only needs one of the Celiac genes.  It doesn't have to be paired with another.

Could your daughter's PMLE actually be Dermatitis Herpetiformis?  Or Vitamin B3 Niacin deficiency (pellagra) which causes similar photo sensitive skin eruptions? 

Curious,

knitty kitty

[T burd]

4 hours ago, knitty kitty said:

A person only needs one of the Celiac genes.  It doesn't have to be paired with another.

Could your daughter's PMLE actually be Dermatitis Herpetiformis?  Or Vitamin B3 Niacin deficiency (pellagra) which causes similar photo sensitive skin eruptions? 

Curious,

knitty kitty

If dermatitis herpetiformis is activated by the sun. Someone on a post I made said it could be B2 deficiency. I saw some other thinking vit D deficiency. But it only happens now when she eats gluten and get sun now. We are still trying to figure it out. 

[knitty kitty]

3 hours ago, T burd said:

If dermatitis herpetiformis is activated by the sun. Someone on a post I made said it could be B2 deficiency. I saw some other thinking vit D deficiency. But it only happens now when she eats gluten and get sun now. We are still trying to figure it out. 

Yes, DH can be made worse with exposure to the sun.  Mine is.

"Certain DH triggers, such as UVB exposure and trauma, have the ability to induce IL-8 production, and thus induce the appearance of cutaneous lesions."

Dermatitis herpetiformis: pathophysiology, clinical presentation, diagnosis and treatment

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4230654/

 

And... an old thread here on the forum...

 

[knitty kitty]

It was probably Niacin Vitamin B3.

Niacin deficiency exacerbates Dermatitis Herpetiformis and Niacin deficiency is also photosensitive causing skin lesions and  permanent hyperpigmentation.

Read more on this link to the article...

Nicotinic acid therapy of dermatitis herpetiformis

https://pubmed.ncbi.nlm.nih.gov/15412276/

 

Edited June 19, 2022 by knitty kitty
Typo correction

[T burd]

15 hours ago, knitty kitty said:

It was probably Niacin Vitamin B3.

Niacin deficiency exacerbates Dermatitis Herpetiformis and Niacin deficiency is also photosensitive causing skin lesions and  permanent hyperpigmentation.

Read more on this link to the article...

Nicotinic acid therapy of dermatitis herpetiformis

https://pubmed.ncbi.nlm.nih.gov/15412276/

 

Ok it IS B3 but this other form! nicotinamide. Now it is seeming more connected. 
https://pubmed.ncbi.nlm.nih.gov/2942169/

[ravenwoodglass]

On 6/18/2022 at 5:59 PM, T burd said:

Is he still researching? So if we want to order a stool test, do we need to find a doctor that sends to his lab? 

Limited time so my reply will need to be brief. The company will send all you need to do the test at home and you will have a return package included for the testing to be done by them.

As you can see in my signature I am a double DQ9 and am a confirmed celiac who was very ill prediagnosis. We still have much to learn about the genetics for celiac or what is being called NCGS.

I hope you can get some answers soon but IMHO if gluten causes illness you have your answer.

[Scott Adams]

On 6/18/2022 at 12:50 PM, trents said:

So, Dr. Fine believes that gluten sensitivity (NCGS) is or can be preliminary to celiac disease, that it is not a distinct condition. Correct?

I would need to ask him about this to be sure, and hopefully I don't get this wrong, but going from memory of past conversations we had years ago I believe that Dr. Fine believes that nearly everyone with the celiac genetic markers should be gluten-free, and his stool tests in those with the genetic markers who eat gluten are usually positive for anti-gliadin antibodies. I believe he said that over 20% of people he tests are positive for gluten antibodies in their stool, but this percentage drops off a lot when it comes to the antibodies showing up in their blood. He has always called people in the stool-positive group "gluten sensitive," and feels that they should all not eat gluten, and that if they continue to eat gluten other environmental factors will lead some in this group to develop full blown celiac disease. If those with a positive stool test go gluten-free they will avoid celiac disease, and will also avoid a lifetime of strange unexplained symptoms and issues caused by their sensitivity to gluten.

On 6/18/2022 at 2:59 PM, T burd said:

Is he still researching? So if we want to order a stool test, do we need to find a doctor that sends to his lab? 

His lab is still open and he still runs it. He's older now and focused on his music--he's a country western singer songwriter from Texas, and records and performs all over the place. 

[Yvonne (Vonnie) Mostat, RN]

May I suggest using the old fashioned remedy for canker sores that has been around for years and years,  Use ALUM Powder. Dampen a Q-Tip with a small amount of water and dip into it some Alum powder and put it on the canker sore. It may need repeating but not as much as you think. If you use Alum, be aware that it is a little bitter, but does it clean up canker sores in the mouth, and so quickly too, They can be darn painful and leave a little scar for a while, but I still use Alum powder since I was a small child in England.  It is the same as Tincture of iodine in a small bowl filled with hot water and covering your mouth with a towel and inhaling the tincture of iodine. Your headache from the sinus pain goes away after a few hours and your nose may drip like a tap for a day or so, but I sweat by it for sinus pain. My Mom in England had some great old fashioned remedies. THe only one that I hated, and did not do any good, was the old sock around my

ck with goose grease on it. Amazing what they had to do in the 50's hey!

[Posterboy]

On 6/17/2022 at 3:58 PM, T burd said:

My 1 daughter who reacts with PMLE

 

On 6/19/2022 at 2:58 PM, knitty kitty said:

It was probably Niacin Vitamin B3.

Niacin deficiency exacerbates Dermatitis Herpetiformis and Niacin deficiency is also photosensitive causing skin lesions and  permanent hyperpigmentation.

Read more on this link to the article...

Nicotinic acid therapy of dermatitis herpetiformis

https://pubmed.ncbi.nlm.nih.gov/15412276/

 

T-Burd,

I think Knitty Kitty has given you good advice.

I don't have much time tonight but I was curious about Niacin connection (if there was one in PMLE and sure enough it has been studied before.

See this study about it....

Entitled "Treatment of polymorphous light eruption with nicotinamide: a pilot study" aka NIacinamide.

https://pubmed.ncbi.nlm.nih.gov/2942169/

quoting the whole Abstract because it is  short.....

Abstract

"In a pilot study, 42 patients suffering from polymorphous light eruption (PLE) were treated with oral nicotinamide, 3 g daily, for 2 weeks. Twenty-five patients remained free from lesions despite extensive sun exposure. We suggest that an abnormality in tryptophan metabolism is important in the aetiology of PLE, and that nicotinamide administration partially corrects this."

Which means over half of the PMLE patients went into remission in as little as 2 weeks on Niacinamide....

Who knows how many might of been helped if they continued the Niacinamide for 6+ weeks or more.....perhaps all of them might of been helped!

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

Good luck on your continued journey!

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

Posterboy by the grace of God,

[T burd]

9 hours ago, Posterboy said:

 

T-Burd,

I think Knitty Kitty has given you good advice.

I don't have much time tonight but I was curious about Niacin connection (if there was one in PMLE and sure enough it has been studied before.

See this study about it....

Entitled "Treatment of polymorphous light eruption with nicotinamide: a pilot study" aka NIacinamide.

https://pubmed.ncbi.nlm.nih.gov/2942169/

quoting the whole Abstract because it is  short.....

Abstract

"In a pilot study, 42 patients suffering from polymorphous light eruption (PLE) were treated with oral nicotinamide, 3 g daily, for 2 weeks. Twenty-five patients remained free from lesions despite extensive sun exposure. We suggest that an abnormality in tryptophan metabolism is important in the aetiology of PLE, and that nicotinamide administration partially corrects this."

Which means over half of the PMLE patients went into remission in as little as 2 weeks on Niacinamide....

Who knows how many might of been helped if they continued the Niacinamide for 6+ weeks or more.....perhaps all of them might of been helped!

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

Good luck on your continued journey!

2 Tim 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 see the reply I tried to post yesterday. I am figuring things out. Niacin/ niconic Acid is a different form of B3. I did not realize Niacinamide and nicotinamide were the same thing and the 2 firms of B3 do not do the same things for us. Why don’t they just call them less confusing terms?  
 

https://en.m.wikipedia.org/wiki/Nicotinamide

sge is already doing better and out rolling in ocean waves with barely and reaction. Her cheeks were just looking rosy and a couple slight bumps. I don’t know if it us the gluten-free or the D or B3 I gave her this week. 

On 6/22/2022 at 1:54 PM, Yvonne (Vonnie) Mostat, RN said:

May I suggest using the old fashioned remedy for canker sores that has been around for years and years,  Use ALUM Powder. Dampen a Q-Tip with a small amount of water and dip into it some Alum powder and put it on the canker sore. It may need repeating but not as much as you think. If you use Alum, be aware that it is a little bitter, but does it clean up canker sores in the mouth, and so quickly too, They can be darn painful and leave a little scar for a while, but I still use Alum powder since I was a small child in England.  It is the same as Tincture of iodine in a small bowl filled with hot water and covering your mouth with a towel and inhaling the tincture of iodine. Your headache from the sinus pain goes away after a few hours and your nose may drip like a tap for a day or so, but I sweat by it for sinus pain. My Mom in England had some great old fashioned remedies. THe only one that I hated, and did not do any good, was the old sock around my

ck with goose grease on it. Amazing what they had to do in the 50's hey!

I had canker sores a long time ago. I didn’t know I had celiac at the time. A doctor had told me she saw that lysine helped. I took it religiously for 6+ months daily and haven’t gotten a sore since. That was 18 years ago. 

[Posterboy]

14 minutes ago, T burd said:

I don’t see the reply I tried to post yesterday. I am figuring things out. Niacin/ niconic Acid is a different form of B3. I did not realize Niacinamide and nicotinamide were the same thing and the 2 firms of B3 do not do the same things for us. Why don’t they just call them less confusing terms?  
 

https://en.m.wikipedia.org/wiki/Nicotinamide

sge is already doing better and out rolling in ocean waves with barely and reaction. Her cheeks were just looking rosy and a couple slight bumps. I don’t know if it us the gluten-free or the D or B3 I gave her this week. 

T-Burd,

Good to hear!  Thanks for the Positive Update!

With it being so quickly I would put the money on the Vitamin.  Your antibodies to gluten don't go down that quick.

I wrote a blog post that might also help you.

Here is a nice article from the Dermatology Advisor that explains how PMLE and Pellagra can be confused for one another.......but sadly Pellagra can be easily and quickly treated and is rarely diagnosed in America today unless your an Alcoholic.

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

I would suggest you give her another couple months on the Niacinamide or Niacin which form you have started her on......and then start a B-Complex (just so you know which B-Vitamin helped you).

Once you have become low enough in Niacinamide to trigger a Skin reaction you have first or already become low Thiamine and Riboflavin as well!

So you should definitely follow up with a B-Complex in another month or so.

See this article about Pellagra in America (in Unusual) Manifestations.  It is considered unusual because they usually don't or rarely recognized it today!

https://casereports.bmj.com/content/12/9/e230972

I will quote from the abstract because it is helpful information to know....

"Vitamin testing revealed normal B12 and folate levels but undetectable levels of thiamine, riboflavin and niacin. Her symptoms and signs resolved entirely with appropriate vitamin supplementation. Niacin (vitamin B3) is essential for multiple metabolic pathways, and severe deficiency may cause clinical syndrome of pellagra which is most commonly associated with diarrhoea (GI Diseases etc), delirium and dermatitis." I like to say Dermatitis(es).....IE many Skin diseases because Pellagra has many faces.

Note they didn't say the patient had Beri Beri (which would of been true) or Pellagra Sine Pellagra (Low or NO Riboflavin aka Vitamin B2) etc......but Pellagra the "Capstone Disease" though the patient HAD all of these too!

But taking the Niacinamide quickly helped to heal the Skin Eruptions of Pellagra IMO going misdiagnosed as PMLE today which happens a lot.....this  happens in Lupus too!

This Posterboy blog post is kinda of long but explains in great(er) detail (without me having to retype, everything, every time) why/how B-Vitamins help regulate our immune system and triggers sickness when we our low in them.

I am doing my happy dance as Knitty Kitty says Celebrating your victory you are having with your daughter!

Now just don't stop it (Niacinamide) for at least 3 months.....because it will take at least that long to reset her system.  At about 6 weeks people usually start to notice a sustained improvement!  And from that it takes another 6 weeks to fill up the Liver's reserve against future stress(es).

It is always good to know you making a difference......no matter  how small the difference might be!

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

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,

 

[T burd]

1 hour ago, Posterboy said:

T-Burd,

Good to hear!  Thanks for the Positive Update!

With it being so quickly I would put the money on the Vitamin.  Your antibodies to gluten don't go down that quick.

I wrote a blog post that might also help you.

Here is a nice article from the Dermatology Advisor that explains how PMLE and Pellagra can be confused for one another.......but sadly Pellagra can be easily and quickly treated and is rarely diagnosed in America today unless your an Alcoholic.

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

I would suggest you give her another couple months on the Niacinamide or Niacin which form you have started her on......and then start a B-Complex (just so you know which B-Vitamin helped you).

Once you have become low enough in Niacinamide to trigger a Skin reaction you have first or already become low Thiamine and Riboflavin as well!

So you should definitely follow up with a B-Complex in another month or so.

See this article about Pellagra in America (in Unusual) Manifestations.  It is considered unusual because they usually don't or rarely recognized it today!

https://casereports.bmj.com/content/12/9/e230972

I will quote from the abstract because it is helpful information to know....

"Vitamin testing revealed normal B12 and folate levels but undetectable levels of thiamine, riboflavin and niacin. Her symptoms and signs resolved entirely with appropriate vitamin supplementation. Niacin (vitamin B3) is essential for multiple metabolic pathways, and severe deficiency may cause clinical syndrome of pellagra which is most commonly associated with diarrhoea (GI Diseases etc), delirium and dermatitis." I like to say Dermatitis(es).....IE many Skin diseases because Pellagra has many faces.

Note they didn't say the patient had Beri Beri (which would of been true) or Pellagra Sine Pellagra (Low or NO Riboflavin aka Vitamin B2) etc......but Pellagra the "Capstone Disease" though the patient HAD all of these too!

But taking the Niacinamide quickly helped to heal the Skin Eruptions of Pellagra IMO going misdiagnosed as PMLE today which happens a lot.....this  happens in Lupus too!

This Posterboy blog post is kinda of long but explains in great(er) detail (without me having to retype, everything, every time) why/how B-Vitamins help regulate our immune system and triggers sickness when we our low in them.

I am doing my happy dance as Knitty Kitty says Celebrating your victory you are having with your daughter!

Now just don't stop it (Niacinamide) for at least 3 months.....because it will take at least that long to reset her system.  At about 6 weeks people usually start to notice a sustained improvement!  And from that it takes another 6 weeks to fill up the Liver's reserve against future stress(es).

It is always good to know you making a difference......no matter  how small the difference might be!

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

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,

 

Ok thank you! She has actually been mostly gluten free, until March, when she had the extreme outbreak, and has only eaten gluten 2 times since then. So it could be that more than anything. I will bring this info up to her pediatrician next month at her annual. I just want to get gluten free on her 504 she already has for the PMLE. 

[Wheatwacked]

Some of the confusion with B3 is that Niacin used to be called Nicotinic Acid. Years ago when the war on smoking began, someone decided to change the name to further distance from nicotine. It was announced that there is no connection. In fact Nicotine can be oxidized to Nicotinic Acid. 

"Niacin was originally called nicotinic acid because it can be created by the oxidation of nicotine with nitric acid. However, people knew nicotine as the addictive chemical in tobacco, so the name niacin was used instead. Niacin comes from the words NIcotinic ACid vitamIN." What is Niacin? A Summary of Nicotinic Acid We take a look at the common dietary supplement niacin.

I classify it as Orwellian History.