Genetic Test Results Interpetation

[LELELUNA]

Hi there, Can anyone tell me if they have had the genetic testing done through enterolab or any lab and has had the test results, HLA-DQ3,3 Subtype 7,9. If so, are you having symptoms of gluten intolerance and/or celiac disease.

There is a histroy of celiac diesease in my family, but my blood work and biopsy have been inconclusive. I have several symptoms, including osteoporosis, psoarisis, maybe DH (not diagnosed), migraines, restless leg syndrome, intestinal issues, lactose intolerant, polycystic ovarian disease, endometriosis and other issues. I am on a gluten free diet with improvement.

My 5 year old daughter I am concerned about, she is the one with the genetic test results listed above. I was told by the lab that because she hase two copies of the gene that predisposes her to gluten intolerance that there is an even stonger predisposition to gluten sensitivity than having one gene and that the resultant immunologic gluten sensitivity may be more more severe. When I heard this I still don't know what it means really. Should she or should she not go gluten free? If I wait for really severe symptoms does that mean damage is done that can not be reversed? Like osteoporosis? She is very tiny 40 inches and 29lbs, suspected to have juvenile migraines, asthma and allergies. She also has diarrhea more times then not. The doctors think I'm nuts to have her tested (stool or serum) every year, for IGLa or immunologic disorder even though the lab suggested this would be wise if I decide not to take her off the gluten. Is there anyone out there who has had the genetic testing done with these two genes and is having issues.

thanks

[ravenwoodglass]

Hi there, Can anyone tell me if they have had the genetic testing done through enterolab or any lab and has had the test results, HLA-DQ3,3 Subtype 7,9. If so, are you having symptoms of gluten intolerance and/or celiac disease.

There is a histroy of celiac diesease in my family, but my blood work and biopsy have been inconclusive. I have several symptoms, including osteoporosis, psoarisis, maybe DH (not diagnosed), migraines, restless leg syndrome, intestinal issues, lactose intolerant, polycystic ovarian disease, endometriosis and other issues. I am on a gluten free diet with improvement.

My 5 year old daughter I am concerned about, she is the one with the genetic test results listed above. I was told by the lab that because she hase two copies of the gene that predisposes her to gluten intolerance that there is an even stonger predisposition to gluten sensitivity than having one gene and that the resultant immunologic gluten sensitivity may be more more severe. When I heard this I still don't know what it means really. Should she or should she not go gluten free? If I wait for really severe symptoms does that mean damage is done that can not be reversed? Like osteoporosis? She is very tiny 40 inches and 29lbs, suspected to have juvenile migraines, asthma and allergies. She also has diarrhea more times then not. The doctors think I'm nuts to have her tested (stool or serum) every year, for IGLa or immunologic disorder even though the lab suggested this would be wise if I decide not to take her off the gluten. Is there anyone out there who has had the genetic testing done with these two genes and is having issues.

thanks

Please don't wait to put her on the diet, please please please. She is the only one I have seen that is also a DQ9, I also do not show up on conventional blood tests even when I was close to death. Also DQ9 may be an intolerance gene here but in other countries it is a celiac gene. Her life could be destroyed long before she shows positive on any tests. I had gotten so bad before celiac was finally found by an MD guided elimination diet that my then 15 yr old DD told me the family would understand if I committed suicide. Take a good look at my signature, that will give you a pretty good idea what lies in store for your DD if you wait till she shows positive on conventional testing before you put her on the diet.

[LELELUNA]

Please don't wait to put her on the diet, please please please. She is the only one I have seen that is also a DQ9, I also do not show up on conventional blood tests even when I was close to death. Also DQ9 may be an intolerance gene here but in other countries it is a celiac gene. Her life could be destroyed long before she shows positive on any tests. I had gotten so bad before celiac was finally found by an MD guided elimination diet that my then 15 yr old DD told me the family would understand if I committed suicide. Take a good look at my signature, that will give you a pretty good idea what lies in store for your DD if you wait till she shows positive on conventional testing before you put her on the diet.

Hi there, thank you for the information. I know in my heart that I should put her on the diet. I guess I should just get pass the, What Doctor's Think syndrome. My husband is another one who is in denial, who also contributed a gene to our daughter also. He has diabetes (very slim and short stature) and is experiencing bowel issues. He is having a tuff time aknowledging she may be different. We also have a daughter that has ADD, she is next on the list to get genetically tested. Again thank you for your input and God bless you and your family.

Leleluna

[ravenwoodglass]

Hi there, thank you for the information. I know in my heart that I should put her on the diet. I guess I should just get pass the, What Doctor's Think syndrome. My husband is another one who is in denial, who also contributed a gene to our daughter also. He has diabetes (very slim and short stature) and is experiencing bowel issues. He is having a tuff time aknowledging she may be different. We also have a daughter that has ADD, she is next on the list to get genetically tested. Again thank you for your input and God bless you and your family.

Leleluna

I do hope your husband gets over his denial. With two genes she got one from you and one from her dad. In other words this disease runs on both sides of the family. Diabetes also goes hand in hand with celiac and diabetics are one of the groups that the NIH wants to have blanket tested regardless of symptoms. Celiac can be 'silent' or just periodically annoying until things like lymphomas and adenomas are found. Although it sounds like your family has lots of symptoms. Perhaps if you google your DD genes and look at some of the research and papers that are out there and show your DH that might wake him up. I would hate for the wakeup call to be a cancer diagnosis but that is not unheard of. Good luck and I hope you are able to get at least your DD gluten free, it will make a big difference in her life and in yours. Especially when those hormones really kick in and they combine with the negative brain effects to mood, life can be very dicey with a depressed celiac teen.

[woolwhippet]

I am DQ 3,7 and DQ4 and my blood work was neg but had 'd' , fatigue, mild depression, anxiety, and an odd rash on my bum. The only thing that has stopped all these symptoms is the gluten-free diet. I am now 5 weeks gluten-free and feel like the energetic positive person I was ten years ago. A truly amazing turn around for someone without the official celiac genes and neg blood work. I often think--what if I was not so head strong? How sick would I have to get before science gave me an answer? I have a five year old daughter myself and if she begins to show signs of gluten sensitivity I would certainly have her stool tested and i'd pull her off gluten for a good period of time and see what happens. It can't hurt. It's a healthy diet.

I am lucky that I am the person who makes all the meals in our home. No one even realizes that as I have gone gluten-free slowly so have they! Pancakes, muffins, cookies, all gluten-free. dinners, gluten-free. Hee hee.

[Sailing Girl]

Hi there, Can anyone tell me if they have had the genetic testing done through enterolab or any lab and has had the test results, HLA-DQ3,3 Subtype 7,9. If so, are you having symptoms of gluten intolerance and/or celiac disease.

I second ravenwoodglass, emphatically. My six-year-old daughter is DQ3,3, Subtype 7,7. DQ7 isn't considered a Celiac gene in the U.S. but is considered to be one elsewhere. My daughter didn't present as a classic Celiac in the least, but the gluten-free diet gave her her life back (and it gave me mine back too, BTW).

It sounds as if your child has two Celiac genes, even though they're not the ones accepted as such in this country. Please, get her on the diet ASAP to avoid any more damage.

[lonewolf]

My son is double DQ3, subtype 7, (DQ7) also. His celiac panel came back negative, but he was having problems at school (ADD type issues) and horrible gas all the time and we tried the gluten-free diet anyway. It made a dramatic and immediate change in him! He's almost 2 years into it now and doing well. I have read some research (posted here somewhere) about DQ7 being very similar to DQ8 and the latest researchers finding that it is related to Celiac. I don't know if my son is truly Celiac, but I do know that he's doing great on the diet and we'll never put him back on gluten. At 12, he gripes occasionally, but he feels sick and "funny" when he cheats or gets cross-contamination, so he's pretty much on board.

My 16 yo daughter and myself are also gluten-free and haven't had our genes tested, but I know I have at least one copy of DQ7, since my son has two copies. At this point, we don't care about official diagnoses, because we all feel better off gluten.

[nora-n]

Here about them finding 4 DQ7 celiacs:

"Our data do not support an earlier finding that HLA-DQ7 is a nonsusceptible molecule (2). In fact, DQ7 was present in 50% of our celiac disease patients in the absence of the heterodimer and of the DRB104 alleles. Because the DQ7 molecule is very similar to the DQ8 molecule, it could alternatively present similar gluten-derived peptides to restricted T cells (17). DQ7 has been detected in a few celiac disease cases in the absence of DQ2 but in association with the DRB104 alleles (18). "

Open Original Shared Link

If you read closely, there was one double DQ1 celiac too...

[LELELUNA]

I am DQ 3,7 and DQ4 and my blood work was neg but had 'd' , fatigue, mild depression, anxiety, and an odd rash on my bum. The only thing that has stopped all these symptoms is the gluten-free diet. I am now 5 weeks gluten-free and feel like the energetic positive person I was ten years ago. A truly amazing turn around for someone without the official celiac genes and neg blood work. I often think--what if I was not so head strong? How sick would I have to get before science gave me an answer? I have a five year old daughter myself and if she begins to show signs of gluten sensitivity I would certainly have her stool tested and i'd pull her off gluten for a good period of time and see what happens. It can't hurt. It's a healthy diet.

I am lucky that I am the person who makes all the meals in our home. No one even realizes that as I have gone gluten-free slowly so have they! Pancakes, muffins, cookies, all gluten-free. dinners, gluten-free. Hee hee.

Thanks for the reply. My five year old has an appt the 7th of Dec., with an Pediatric GI. If her test are neg I am still going to have her go on the gluten-free diet. I hope I see improvement soon. Right now she has a severe case of eczema and diarhea.

[LELELUNA]

Here about them finding 4 DQ7 celiacs:

"Our data do not support an earlier finding that HLA-DQ7 is a nonsusceptible molecule (2). In fact, DQ7 was present in 50% of our celiac disease patients in the absence of the heterodimer and of the DRB104 alleles. Because the DQ7 molecule is very similar to the DQ8 molecule, it could alternatively present similar gluten-derived peptides to restricted T cells (17). DQ7 has been detected in a few celiac disease cases in the absence of DQ2 but in association with the DRB104 alleles (18). "

Open Original Shared Link

If you read closely, there was one double DQ1 celiac too...

Thank you for the information, it is was quite interesting to read. There is a history of celiac disease on my mom's side of the family. My mom had 9 siblings, two have past and died in their 50's. Never diagnosed with celiac, but both died of intestinal cancer. Two other siblings, diagnosed with celiac. My mom has sypmtoms when she is not on the diet. She cheats allot and complains when she feels bad. I have two cousins with symptoms and two sisters with symptoms, but they will not go gluten-free or get checked out. I myself have been on gluten-free diet for two years and noticed a huge difference in my health. I am real curious to know what genes I have and the family members who have full blown celiac disease.

My daughter will be going on the gluten-free diet starting the new year whether or not the stool test are positive or not. I have to know if the gluten-free diet will help her.

Thanks again for your information

[LELELUNA]

My son is double DQ3, subtype 7, (DQ7) also. His celiac panel came back negative, but he was having problems at school (ADD type issues) and horrible gas all the time and we tried the gluten-free diet anyway. It made a dramatic and immediate change in him! He's almost 2 years into it now and doing well. I have read some research (posted here somewhere) about DQ7 being very similar to DQ8 and the latest researchers finding that it is related to Celiac. I don't know if my son is truly Celiac, but I do know that he's doing great on the diet and we'll never put him back on gluten. At 12, he gripes occasionally, but he feels sick and "funny" when he cheats or gets cross-contamination, so he's pretty much on board.

My 16 yo daughter and myself are also gluten-free and haven't had our genes tested, but I know I have at least one copy of DQ7, since my son has two copies. At this point, we don't care about official diagnoses, because we all feel better off gluten.

Thanks for the reply, I will be putting my daughter on the gluten-free diet. I hope I will see improvement. Good Luck with your son and yourself as well.

[LELELUNA]

I second ravenwoodglass, emphatically. My six-year-old daughter is DQ3,3, Subtype 7,7. DQ7 isn't considered a Celiac gene in the U.S. but is considered to be one elsewhere. My daughter didn't present as a classic Celiac in the least, but the gluten-free diet gave her her life back (and it gave me mine back too, BTW).

It sounds as if your child has two Celiac genes, even though they're not the ones accepted as such in this country. Please, get her on the diet ASAP to avoid any more damage.

Thanks for your reply, I will be putting her on the gluten-free diet. I don't want her to turn out like me.