Can Someone Please Help Me With These Enterolab Gene Test Results?

[ARK]

Here are the results of my son's test (FINALLY!)

Does this mean he does NOT have Celiac Disease?

Gluten Sensitivity Gene Test

HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0502

Serologic equivalent: HLA-DQ 3,1 (Subtype 9,5)

Interpretation Of HLA-DQ Testing: Although you do not possess the main genes predisposing to celiac sprue (HLA-DQ2 or HLA-DQ8), HLA gene analysis reveals that you have two copies of a gene that predisposes to gluten sensitivity (DQ1 or DQ3 not subtype 8). Having two copies of a gluten sensitive gene, means that each of your parents, and all of your children (if you have them) will possess at least one copy of the gene. Two copies also means there is an even stronger predisposition to gluten sensitivity than having one gene and the resultant immunologic gluten sensitivity may be more severe.

Thanks for any help interpretting this - I wont be able to talk to my doctor until Monday.

ARK

[Ursa Major]

I am not sure talking to your doctor would be helpful, as the medical community mostly doesn't recognize gluten sensitivity as valid. He'd likely say that it's fine for your son to eat gluten.

He has the genes that will make him just as sick, but in different ways, as celiac disease. With two of them, he could be even sicker, even though his villi are probably fine.

Most people with those genes will eventually develop severe neurological problems (not always gastrointestinal ones), due to not being able to tolerate gluten.

Your son absolutely needs to eliminate all gluten for life, and be just as diligent about it as if he had celiac disease. And as was stated, you and your husband must have at least one of those genes as well, as will all of your other kids (if you have others).

[ARK]

I am not sure talking to your doctor would be helpful, as the medical community mostly doesn't recognize gluten sensitivity as valid. He'd likely say that it's fine for your son to eat gluten.

He has the genes that will make him just as sick, but in different ways, as celiac disease. With two of them, he could be even sicker, even though his villi are probably fine.

Most people with those genes will eventually develop severe neurological problems (not always gastrointestinal ones), due to not being able to tolerate gluten.

Your son absolutely needs to eliminate all gluten for life, and be just as diligent about it as if he had celiac disease. And as was stated, you and your husband must have at least one of those genes as well, as will all of your other kids (if you have others).

Thank you Ursula!

So does this mean he is gluten sensitive or gluten intolerant? I guess the name really doesnt matter but I would just like to know.

He does not have celiac but could eventually get it if he eats gluten?

What I DO know is that he has improved GREATLY by going gluten free and he is so much happier, so I will NOT give up on the gluten-free diet.

What do you mean by "just as sick in different ways"?

He does not have any D or C, but his stomach hurts an awful lot of the time, or it did before going gluten free.

His depression was SO bad and it was the first thing that caught my attention.

That, and irritability, FATIGUE. He was also CONSTANTLY eating, but he had done that his whole life so I didnt realize it was a problem.

I am sorry for all the questions - I just have this burning desire to know and HELP MY SON GET WELL and cant wait until Monday. LOL

[AndreaB]

He doesn't have the known celiac genes but he could still have an active gluten intolerance. I assume you were looking into this because of problems with gluten.

Otherwise, as Ursula said he could develop other problems down the line if he continues to consume gluten and has had a problem with it.

[Ursa Major]

Ark, apparently, the other problems I was talking about had already shown up, as in neurological symptoms, like irritability, fatigue, tantrums, eventually he'd likely suffer from severe depression, or even schizophrenia. Also, neuropathy is a common problem, with losing feeling and/or functioning of first hands and feet, and eventually not being able to walk etc. Those can happen with celiac disease, but are more likely with gluten sensitivity/gluten intolerance (which really is the same). I believe that many people diagnosed with MS really have gluten intolerance, that have caused MS-like symptoms.

And ask CarlaB, who has the same genes, how she is affected. She does get the awful D I believe, but her biopsy was negative.

[ARK]

He doesn't have the known celiac genes but he could still have an active gluten intolerance. I assume you were looking into this because of problems with gluten.

Otherwise, as Ursula said he could develop other problems down the line if he continues to consume gluten and has had a problem with it.

Thanks Andrea.

Yes, we went gluten free while waiting on test results and the changes have been absolutely incredibly wonderful.

[AndreaB]

ARK,

I missed your second post. Ursula pretty much answered again.

If his problems don't totally resolve gluten free you would need to look into other things. If he has had such a turn around already, then you have your answer. Gluten free is easy once you get the hang of it and can still be very healthy.

I'm so glad his tummy doesn't hurt anymore. My family has tummy troubles with various intolerances.

[daffadilly]

We have DQ1 in our family & yes you definitely want to keep him gluten-free. I have two DQ1's one of the same ones as your son 0303, I passed it to my son, who passed it to his son & his daughter, the lst kid has not been tested yet, my sister also has that gene. My sister & I & my granddaughter also cannot do dairy. We have a lot of food allergies, hives, sinus infections, asthma, ear infections, bladder infections, tonsils out, appendics out, rheumatoid arthritis, my mother died of colon cancer-she was also addicted to food & cigarettes, addictions are a symptom of DQ1, constipation, irritability, depression (very common), IBS, gall bladder problems, my son has liver damage at 36 but refuses to go on the diet,... on & on

If your family is like mine we are all sick all the time with a lot of stuff, I am the healthiest person in the family now & I used to be the sickest!!!! If you see a family that everyone is always sick, I would bet they have DQ1.

I am sure the DQ2 & DQ8 people suffer, but do not think that DQ1 is "just" gluten intolerant, IMO it is worse than celiac.

[SoMuchPaint]

Here are the results of my son's test (FINALLY!)

Does this mean he does NOT have Celiac Disease?

Gluten Sensitivity Gene Test

HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0502

Serologic equivalent: HLA-DQ 3,1 (Subtype 9,5)

Interpretation Of HLA-DQ Testing: Although you do not possess the main genes predisposing to celiac sprue (HLA-DQ2 or HLA-DQ8), HLA gene analysis reveals that you have two copies of a gene that predisposes to gluten sensitivity (DQ1 or DQ3 not subtype 8). Having two copies of a gluten sensitive gene, means that each of your parents, and all of your children (if you have them) will possess at least one copy of the gene. Two copies also means there is an even stronger predisposition to gluten sensitivity than having one gene and the resultant immunologic gluten sensitivity may be more severe.

Thanks for any help interpretting this - I wont be able to talk to my doctor until Monday.

ARK

I know this is an older post, but these are almost the exact same gene results (by serologic equivalent; my daughter is 501) I just received for my daughter from Enterolab. Are you still doing the gluten free diet with your son? Has it been a positive experience? I am meeting some resistance among my family at my wanting to "control" her diet. They wonder if the occasional slice of delivery pizza or treat at a birthday party would be no big deal, and don't want me "excluding her" from food-related activities "unnecessarily."