Anyone be Celiac positive after a negative gene test for HLA DQ2 and DQ8?

[Becca4130]

Hi I am wondering if anyone was tested being negative for blood and or gene tests and later tested positive for Celiac. I was tested quite a few times but was already on a gluten free or very limited gluten diet. I also did the gene test which was negative and my previous GI Dr swore I could never have Celiac, but today my new nutritionist just told me that is absolutely false that is it still possible to have it. Because I have other autoimmune, HLA-B27, gastroparesis, IBS, acne (and cystic acne), eczema, and a bunch of other issues until he knows for sure he is treating me as if I have it. Help would be appreciated. Thanks

[cyclinglady]

There is so much still unknown about celiac disease, but a vast majority have the DQ2 and DQ8 genes.  However, There are always exceptions to rules.  You can do an internal search for member Ravenwoodglass who does not carry the standard gene.  Her gene was identified:

Open Original Shared Link

I think as time goes on, more genes will be identified.  It was not that long ago that celiac disease was considered a child’s disease or that you had to be European.  

Whether or not you have celiac disease might not matter.  What matters is that your health is improving on a gluten free diet.  Have you looked into the AIP diet?  It is also gluten free and studies are showing that it may very well heal autoimmune (or help). 

[Posterboy]

Becca4130,

Cyclinglady is right.  Most have those genotypes but they have found other gene types that doesn't always fit that mold.

I haven't always known this (and I am not good at gene tests) I having only been diagnosed on blood serology alone.

This verywell article explains it well.

Open Original Shared Link

depending on your ethnicity you might not type out well depending on where your ancestors are from.

see their (verywell) paragraph about DQ8 variability by regions of the world.

Be your own advocate your nutritionist is right to be cautious.

see also this research about variations in genotyping can cause certain world/countries population to fail to show a positive gene typing depending on the region DQ2/DQ8 prevalence in the population mainly in Japan according to verywell.

But it has shown up in people of Brazilian (assumingly) Portuguese ancestors as well (different gene typing).

Open Original Shared Link

In their conclusion they noted in a subset of brazilians at least the wrong Regional gene typing test (American or European) might effect someone's test's causing a negative gene typing test.

quoting

CONCLUSIONS:

"In this study, celiac disease was associated with the genotypes DQ2 and DQ8. DQ2 predominated, but the distribution of the frequencies was different from what has been found in European populations and was closer to what has been found in the Americas. The high frequencies of the HLA genotypes DQ2 and DQ8 that were found in first-degree relatives would make it difficult to use these HLA genotypes for routine diagnosis of celiac disease in this group."

Assuming you don't have any of this mitigating factors then it is uncommon to be diagnosed as celiac disease without these gene types.

You might only be able to get the more vague NCGS diagnosis.  But do a month food allergy elimination diet then when you re-introduce you will know if gluten is the culprit.

You won't have to get  a doctor's confirmation of what your body already knows.

Here is one more research article but a little older so there is probably newer research that might replace it.

that might answer your question entitled "HLA-DQ typing in the diagnosis of celiac disease"

Open Original Shared Link

I hope this is helpful.

******This 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,

 

[Becca4130]

19 hours ago, cyclinglady said:

There is so much still unknown about celiac disease, but a vast majority have the DQ2 and DQ8 genes.  However, There are always exceptions to rules.  You can do an internal search for member Ravenwoodglass who does not carry the standard gene.  Her gene was identified:

Open Original Shared Link

I think as time goes on, more genes will be identified.  It was not that long ago that celiac disease was considered a child’s disease or that you had to be European.  

Whether or not you have celiac disease might not matter.  What matters is that your health is improving on a gluten free diet.  Have you looked into the AIP diet?  It is also gluten free and studies are showing that it may very well heal autoimmune (or help). 

Thanks yes I have been on basically a gluten free diet for a while and have looked into the AIP. I also ran my Ancestry DNA through Promesthease which was pretty cool. I am actually 100% European. I have done much better on gluten free I did an elimination diet and gluten affected me a lot I would get brain fog, headaches, very bloated for days, and extremely tired almost immediately after. 

[cyclinglady]

There you go.  The gluten-free diet has helped you.  You might not need,that official diagnosis.   After all, the bottom line is achieving good health.  

P.S.  Those Romans went everywhere!  I think now, northern  India (where they grown wheat and not rice) has an even higher rate of celiac disease than Europe.  

[Posterboy]

On 6/20/2018 at 9:38 AM, Becca4130 said:

Thanks yes I have been on basically a gluten free diet for a while and have looked into the AIP.

Becca4130,

Being gluten free for a while would cause your blood serology to test negative but many people choose not to finish a gluten challenge because of how bad they feel on gluten.

NCGS is a real thing even though most doctors don't recognize it today.

See this care2 article that explains what might be  happening in your case.

Open Original Shared Link

The rate of positive blood serology is 2x higher than biopsy confirmed Celiac disease.

see this new research about the rate of NCGS (serology postive Celiac)  in the general public without positive biopsy.  . . though for this research they considered both serology (blood tests) and biopsy confirmed celiac diagnosis as the real rate of Celiac disease in the general public.

quoting

Overall global prevalence of celiac disease was 1.4% in 275,818 individuals, based on positive blood tests for anti-tissue transglutaminase and/or anti-endomysial antibodies. The pooled global prevalence of biopsy-confirmed celiac disease was 0.7% in 138,792 individuals."

Which they say  quoting again "means that numerous people with celiac disease potentially remain undiagnosed" or I think in many causes NCGS is not being declared because they consider a blood positive test inconclusive in the absence of a confirmed biopsy.

and it sounds like what is happening in your Case especially since you have been gluten free long enough to not test positive on your blood work.

See the Care2 article which is typically 6 months and your antibodies goes down naturally when you are gluten free that long.

quoting

"Though the cause of the two conditions seems to be very different, the study confirmed that the best treatment is the same for both conditions. After six months of only consuming Open Original Shared Link, the NCGS group reported a significant improvement in their digestive and non-digestive symptoms, and the immune system markers identified earlier in the study had normalized."

****this is not medical advice but what makes sense to me after having been serology (blood) positive for antibodies that went down on a gluten free diet.

You might also see this thread that talks about some of these same issues.

I hope this is helpful and good luck on your continued journey.

I also meant to add this link

Open Original Shared Link

Or It could be you have not developed celiac yet because your gut biome has protected you so far from developing it.

quoting

"The study authors determined that while about 40 percent of the population have a genetic disposition to celiac disease, just about 1 percent develop the condition upon exposure to gluten. Mice who housed Pseudomonas aeruginosa bacteria (Psa) in their guts – transplanted from celiac patients – metabolized gluten different than mice treated with the probiotic Lactobacillus.

The researchers further observed that Psa produced gluten sequences that initiated inflammation in celiac patients. Lactobacillus was used to detoxify the gluten.

"So the type of bacteria that we have in our gut contributes to the digestion of gluten, and the way this digestion is performed could increase or decrease the chances of developing celiac disease in a person with genetic risk,” senior study author Dr. Elena Verdu explain(s)"

Again I hope this is helpful.

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,

[Itchyscratchy]

Does anyone know of the most reliable company that does direct to consumer swab test for both the HLA DQ2 and DQ8 genes?