Testing

[Kj44]

Hello

I received this in a genetic lab test I requested from my provider. 
 

The patient is positive for DQA1*05, one half of the DQ2
heterodimer. The celiac disease risk from the HLA DQA/DQB
genotype is approximately 1:1842 (0.05%). This is less
than the 1% risk in the general population.
Allele interpretation for all loci based on IMGT/HLA
database version 3.55
HLA Lab CLIA ID Number 34D0954530
Greater than 95% of celiac patients are positive for either DQ2 or DQ8
(Sollid and Thorsby, (1993) Gastroenterology 105:910-922). However
these antigens may also be present in patients who do not have Celiac
disease.

 

Some background, I have been eating gluten free for about 10 years now. I have never had an official celiac diagnosis due to endoscopy and labs tested after I had already been eating gluten free for over 1 year. I was constantly sick and told you slowly remove foods and see what effects my symptoms. I have also come to realize that I have other symptoms of celiacs and recently requested the genetic testing shown above. 
 

I am looking to see if anyone has other recommendations for testing or just to clarify the results for me as I feel the official diagnosis could be helpful but I am not positive that it is even true for me. 

[Scott Adams]

Thank you for sharing your genetic test results and background. Your results indicate you carry one half of the DQ2 heterodimer (DQA1*05), which is associated with a very low celiac disease risk (0.05%). While most celiac patients have either DQ2 or DQ8, these genes are also present in people without celiac disease, so the test alone doesn’t confirm a diagnosis.

Since you’ve been gluten-free for 10 years, traditional diagnostic methods (like endoscopy or blood tests) would not be reliable now. If an official diagnosis is important to you, consider discussing a gluten challenge with your doctor, where you reintroduce gluten for a period before testing. Alternatively, you could focus on symptom management and dietary adherence, as your gluten-free diet seems to be helping. Consulting a gastroenterologist or celiac specialist could provide further clarity. 

Here is more info about how to do a gluten challenge for a celiac disease blood panel, or for an endoscopy:

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"...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;

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

 

 

[trents]

Did your symptoms improve after going on a gluten-free diet?

[Kj44]

Yes

[trents]

Have you considered the possibility that you might have NCGS (Non Celiac Gluten Sensitivity) rather than celiac disease? They share many of the same symptoms, the difference being that NCGS does not damage the lining of the small bowel. It is 10x more common than celiac disease. There is no test yet available for NCGS. Celiac disease must first be ruled out. In view of your genetic profile, I would give it consideration.

[Scott Adams]

Yes, if you had symptoms when eating gluten ruling out celiac disease won't necessarily mean you'll be able to eat gluten again, although it might mean that you may be able to be less strict with your gluten-free diet. 

[Wheatwacked]

  On 2/28/2025 at 2:00 AM, Kj44 said:

I was constantly sick and told you slowly remove foods and see what effects my symptoms. I have also come to realize that I have other symptoms of celiacs

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Once you have removed the inflammatories, it is time to focus on the deficiencies.  A lot of them not specific to Celiac, but deficiency in them elicits symptoms associated with Celiac.

According to research, celiac disease tends to be more prevalent in urban areas compared to rural areas.  Same is true with airborne viruses.  Because urban residents get less sunlight.  To top it off we use lotion and gear to block the little light there is.  This compremises the vitamin D blood level.  A virus attack further lowers vitamin D and the immune system loses control over the Celiac genes and they go into acute symptoms.

40% to 75% depending depending on country are vitamin D deficient.

50% do not eat the Adequit Intake for potassium (4700 mg a day)

90% do n ot eat the Adequit Intake for Choline.

Iodine intake since 1970 had dropped 50%. 

The western diet is typically excessive in omega 6 fatty acid compared to omega 3.  Above 14:1 by some estimates.  So they sell us expensive, processed oils to compensate. 

Anyway after 10 years gluten free myself,  here is what has helped me in just the past few years; once I realized I was at a healing plateau and just GFD would not cut it, and reallized my deficiencies.

 Most recently, I started a statin which I only took for two weeks before it started to cripple me.   Got a prescription for Nicotinic Acid to 2000 and am more flexible now Plus HDL went 29 to 44, eGFR from 55 to 79.

  Quote

from Google: No, niacinamide is not as effective as nicotinic acid for lowering cholesterol. Nicotinic acid, also known as niacin, is a B vitamin that can lower cholesterol levels. Niacinamide, another form of niacin, does not lower cholesterol. 

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I also learned if the pharmacist gets a prescription for Niacin that it is dealer's choice whether you get Nicotinic Acid or Niacinimide.  And it comes out of a regular vitamin manufacturer.  

"likely deficiencies and what I take to boost my intake (I get anorexic at the drop of a hat so I take them to keep me stable):  the ones that helped me the most noticibly Was increasing vitamin D blood level to 80 ng/ml and Iodine to 500 mcg once or twice a day, Thiamine, Choline, and Iodine.

10,000 IU vitamin D

500 mg Thiamine or more

Choline

Iodine – 600 to 1200 mcg of Liquid Iodine

Vitamin B2 helps break down proteins, fats, and carbohydrates. It plays a vital role in maintaining the body's energy supply. 

500 mg Nicotinic Acid - increase capillary blood flow, lower cholesterol. I recently started 2000 mg a day instead of a statin which I cannot tolerate. I the first month my HDL went from 29 to 44. eGFR (kidney function) jumped from 55 ti 75. It also has make my whole body less stiff. The ichy, flushing with the first few doses goes away. The non flush forms of vitamin B3 do not work. It is the relaxing of the capillaries and tendons.

500 mg Pantothenic Acid vitamin B5

Omega-3 and Omega-6 Fatty Acids in Vegetables  Eating more of the vegetables low in omega six and high omega 3 can reduce inflammation

Whole Milk Vanilla yogurt to which I add 100 grams of raspberrys, black berries and blueberries has lots of probiotics and makes my tummy and body happy.

Red Bull has sugar (not high fructose corn syrup) and the vitamins (B2,3,5,6 need to metabolize to ATP energy and Taurine as an antioxident). It is a good source of energy for me because my genetic hyperlipidemia does not process complex carbs well.

 

 

 

 

Edited March 1 by Wheatwacked
typos