Positive Genetics (HLA) DQ2 and DQ8 and histology Marsh 3b but negative serology

[Matt13]

Hi All, how many of You have Positive Genetics (HLA) DQ2 and DQ8 and histology but negative serology?

[RMJ]

On 1/3/2024 at 9:34 AM, Matt13 said:

Hi All, how many of You have Positive Genetics (HLA) DQ2 and DQ8 and histology but negative serology?

As has been answered in your other posts, unless you’ve had additional serology testing (deamidated gliadin peptide antibodies, IgA and IgG) you did not have a full celiac antibody panel. Without these additional tests it is not correct to say you have negative serology.  

[Scott Adams]

I agree, and most people do not get the genetic tests done during the diagnostic process, and all of the genetic markers for celiac disease are not yet discovered, and recent ones that are related are not necessarily included in all current genetic tests for celiac disease.

[knitty kitty]

@Matt13, hello,

Thought I would share some studies that might be of interest to you.

Clinical and genetic profile of patients with seronegative coeliac disease: the natural history and response to gluten-free diet

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5606118/

And...

Seronegative Celiac Disease - A Challenging Case

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9441776/

And...

Enteropathies with villous atrophy but negative coeliac serology in adults: current issues

https://pubmed.ncbi.nlm.nih.gov/34764141/

I'm seronegative, but have two genes for Celiac.  Diabetes, anemia and Thiamine deficiency can each affect our ability to produce antibodies, hence seronegative.

Hope this helps!

[Matt13]

Thank You all for responses! 👍Maybe IBS is also involved because of stress...

 

[knitty kitty]

How are you doing, @Matt13?

 

[Matt13]

Still struggling, doctors says it is possible IBS because of stress... i am currently on GFD for 6months but i think i have made few mistakes along the way...but my main symptoms are bloating and distension/pain... nothing else. I see that other people here on forum as well have alot of symptoms when they are on GFD...but i dont know how long does it take to heal so you dont have any symptoms...? How are u?

[knitty kitty]

@Matt13,

A lot of newbies simply change out their gluten containing foods for gluten free versions.  

Gluten free facsimile foods are not required to be enriched or fortified with vitamins and minerals like gluten containing products.  So, you need to buy your own vitamins and minerals now.  IBS, as well as Celiac Disease, can affect absorption of nutrients. 

Gluten free facsimile foods are not really nutritious.  They have a lot of saturated plant fats, carbohydrates, and lots of insoluble fiber.  Bacteria in our gut, our microbiome, loves insoluble fiber because you can't digest it, but they can, and they do, releasing gas as an end product, which leads to bloating and inflammation.  

If you change your diet, you change your microbiome.  If you cut out carbohydrates, excess fiber, those processed foods, and irritating foods like beans, dairy, nightshades, and grains, then those carbohydrate-loving, gas-producing bacteria will die off, and you will deflate.  

I followed a Paleo diet (The Autoimmune Protocol Diet) when  I was having bloating and gas.  I ate just meat and veggies, and within three weeks I deflated and felt so much better.  After three weeks, I started adding in other foods, allowing time for my microbiome to adjust.  I recommend Dr. Sarah Ballantyne's book The Paleo Approach.  Not an advertisement, it just worked for me.  I also took vitamins and minerals.  I took a B Complex with all eight essential B vitamins,  Benfotiamine Vitamin B 1 and Pyridoxine Vitamin B6 (help heal the digestive system along with magnesium), Vitamin D (helps regulate inflammation), zinc and Omega Threes (healthy fats for brain function).  

It's a big adjustment to make when one is not feeling well, but it's definitely worth the effort to feel better.  

You'll be okay.  Keep learning.  

[Matt13]

Thank You Knitty for kind words and help, i will try your advices!

[DebJ14]

On 1/12/2024 at 5:21 AM, Matt13 said:

Still struggling, doctors says it is possible IBS because of stress... i am currently on GFD for 6months but i think i have made few mistakes along the way...but my main symptoms are bloating and distension/pain... nothing else. I see that other people here on forum as well have alot of symptoms when they are on GFD...but i dont know how long does it take to heal so you dont have any symptoms...? How are u?

Our son who has Celiac had the bloating, distension and pain.  The gastro told him to take Prilosec.  When he stopped after the 14 day course, it came roaring back.  He went to a different gastro and was advised that is problem was not enough stomach acid, which the Prilosec made worse.  He takes Betaine HCL at each meal.  It took a while to calibrate the correct dose, but now he has no issues with gas, bloating, acid reflux etc.  He was also put on B1 (Thiamine) and Zinc Carnosine.  Next month he will begin weaning off the Betain HCL as hopefully, his gut has begun producing acid once again.  Those PPI's shut down acid production.

[knitty kitty]

@DebJ14, 

That's great that the second doctor took your son off the Ppi!  We need Thiamine and Niacin Vitamin B 3 to make stomach acid.  Is your son taking a B  Complex in addition?  A B Complex will contain Niacin and Pyridoxine B 6.  Pyridoxine is needed to make Diamine Oxidase, DAO, another digestive enzyme our bodies make that helps lower histamine (also available in supplements).  A magnesium supplement helps make essential enzymes with Thiamine.  

So glad your son is improving!  Keep us posted on his progress!  

[Beverage]

On 1/15/2024 at 9:53 AM, DebJ14 said:

Our son who has Celiac had the bloating, distension and pain.  The gastro told him to take Prilosec.  When he stopped after the 14 day course, it came roaring back.  He went to a different gastro and was advised that is problem was not enough stomach acid, which the Prilosec made worse.  He takes Betaine HCL at each meal.  It took a while to calibrate the correct dose, but now he has no issues with gas, bloating, acid reflux etc.  He was also put on B1 (Thiamine) and Zinc Carnosine.  Next month he will begin weaning off the Betain HCL as hopefully, his gut has begun producing acid once again.  Those PPI's shut down acid production.

Similar issue for me. I sip a little apple cider vinegar before meals with protein.