Genes questions for both HLA and lactase

[eekunique]

I carry the gene for both HLA-DQ2.5 and HLA-DQ8. 

I have had stomach aches every day for all of my life, constipation, diarrhea, v.low unexplained ferritin

I've had two blood tests for coeliac in the past (last one was 3 years ago) and both have come back completely negative. 

I cut out diary and my stomach aches went so I thought I must be lactose intolerant. But I have found out I have the gene for lactase persistence. So when I search up why I might not tolerate lactose even though I have the lactase gene it comes back as possible coeliac! 

My niece has coeliac. My mum feels that she is gluten intolerant but no diagnosis. My children all have unexplained low iron and vitamin d with no explanation. They also have gut issues like me. 

What would you do if you were me? If I convince the Dr do do another blood test and it comes back negative again - they're not going to offer a biopsy.

I also think I perhaps wasn't eating enough gluten on the run up to the blood tests. 

[eekunique]

Sorry I'm British and realized I spelt celiac the British way. And mum. I do know how to spell lol. 

[trents]

Don't worry about "coeliac" and "mum". We're used to it. A very high percentage of our forum participants are from the UK.

In the UK, the doctors commonly only run one antibody test for celiac disease when doing the initial screen and that is the tTG-IGA. The fact is, there are several other antibody tests that could be run for a more complete panel. Some celiacs react atypically so other antibody tests will sometimes catch what the tTG-IGA will miss. The NIH can be pretty inflexible, however. If you were eating a low gluten diet prior to testing that can also create a false negative in the antibody tests. 

You will find different recommendations for how to do a proper gluten challenge before testing but the Mayo Clinic recommends the daily consumption of two slices of wheat bread (or the gluten equivalent) for 6-8 weeks leading up to antibody testing or for two weeks leading up to an endoscopy/biopsy.

You could also have NCGS (Non Celiac Gluten Sensitivity) which does not damage the small bowel lining and therefor does not throw antibodies.

[knitty kitty]

Welcome to the forum, @eekunique!

According to recent research, updates to the gluten challenge are being implemented.

Recommended intake of gluten should be increased to 10 grams of gluten per day for at least two weeks. Or longer.

While three grams of gluten will begin the immune response, ten grams of gluten is needed to get antibody levels up to where they can be measured in antibody tests and changes can be seen in the small intestine.  

Keep in mind that there are different amounts of gluten in different kinds of bread and gluten containing foods.  Pizza crust and breads that are thick and chewy contain more gluten than things like cake and cookies.  

References:

https://www.beyondceliac.org/celiac-disease/the-gluten-challenge/

And...

Evaluating Responses to Gluten Challenge: A Randomized, Double-Blind, 2-Dose Gluten Challenge Trial

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7878429/?report=reader

 "In our study, limited changes in Vh:celiac disease (villi height vs crypt depth - aka damage to the small intestine)  following 14-day challenge with 3 g of gluten were observed, in accordance with Sarna et al.  While the 3 g dose was sufficient to initiate an immune response, as detected by several biomarkers such as IL-2, the 10 g dose was required for enteropathy within the study time frame. Based on our data, we would suggest that gluten challenge should be conducted over longer durations and/or using doses of gluten of ≥ 3 g/day to ensure sufficient histological change can be induced."
 

Lactase is produced in the tips of the villi lining the small intestine.  These villi get damaged by attacks from antibodies in CeD and can no longer produce lactase.  Even with the gene, lactase cannot be produced if there's villi damage.

Definitely get the kids tested as well.  Low Vitamin D, anemia and and gastrointestinal symptoms signals they may have inherited Celiac, too.

Edited November 13, 2023 by knitty kitty
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[Wheatwacked]

14 hours ago, eekunique said:

My children all have unexplained low iron and vitamin d with

Increasing vitamin D may help with B12 and that will help with iron.Eating fermented pickles, not quick pickles made with vinegar will help populate your gut with benefial lactobacillus which will enhance your lactose persistance.   Naturally Fermented Pickles [The Complete Guide]

The UK was the country that forced an almost worldwide ban on vitamin D food fortification back in the 50's due to an epidemic of infant deaths caused by a manufacturing error in infant formula.  

Quote

Many prospective case–control studies have shown that adults in the highest quantile of 25OHD levels have a decreased risk of colon and breast cancers compared with those in the lowest quantile. Furthermore, the risk of non-Hodgkin lymphoma is reduced by 30% to 40% in adults with high vitamin D intakes or high levels of sun exposure  Finally, retrospective studies suggest an association between low serum 25OHD level and death from cancer VITamin D supplementation in renAL transplant recipients

Vitamin D Is Not as Toxic as Was Once Thought

[Scott Adams]

Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS.

Here is more info on a gluten challenge in case you want more testing for celiac disease:

Quote

"...in order to properly diagnose celiac disease based on serology and duodenal histology, doctors need patients to be on gluten-containing diets, even if they are causing symptoms, and this is called a "gluten challenge."

• Eat gluten prior to celiac disease blood tests: The amount and length of time can vary, but is somewhere between 2 slices of wheat bread daily for 6-8 weeks and 1/2 slice of wheat bread or 1 wheat cracker for 12 weeks 12 weeks;
• Eat gluten prior to the endoscopic biopsy procedure: 2 slices of wheat bread daily for at least 2 weeks;

and this recent study recommends 4-6 slices of wheat bread per day:

 

 

[eekunique]

19 minutes ago, Scott Adams said:

If your symptoms go away on a gluten-free diet it would likely signal NCGS.

Thanks,  This is what I've thought the past 35 years but it wouldn't explain the lactose intolerance - nor the fact I have both genes which significantly increases my chances of having celiac disease.

I've tried eating 4 slices of bread today... Hard going. 

[eekunique]

14 hours ago, knitty kitty said:

Keep in mind that there are different amounts of gluten in different kinds of bread and gluten containing foods.  Pizza crust and breads that are thick and chewy contain more gluten than things like cake and cookies.

I didn't know this. Thank you. Looking it all up there's no way I ate enough gluten for the first tests. I'm obviously hoping for a negative test if the Dr allows me to have another blood test but it has to be accurate. 

[knitty kitty]

Do be aware that a small percentage of us are seronegative.  We don't have antibodies in our blood due to anemia, or diabetes, or we've been sick so long our bodies have just quit cranking out antibodies due to a Thiamine Vitamin B 1 deficiency.  (Yes, we need Thiamine and magnesium to make antibodies.)

I'm seronegative, but I have two genes like yours, too.  Some doctors, like mine, will make a Celiac diagnosis based on having Celiac Genes and showing improvement on a gluten free diet.  

I hope you can get satisfactory answers!

Keep us posted!  

 

Nomenclature and diagnosis of seronegative coeliac disease and chronic non-coeliac enteropathies in adults: the Paris consensus

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9554081/

Edited November 14, 2023 by knitty kitty
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