Gene Test Results: Our Whole Family Is Double Dq1

[hypatia7777]

Oops! This posted before I was finished. I'm going to finish writing and then repost.

[hypatia7777]

I am in the mood for a rant here because I'm feeling frustrated and confused and I'm questioning the meaning of our EnteroLab stool test results, which we just received.

A little background: I found my way to this forum because my three-year-old daughter started having GI issues (diarrhea, white stools, constipation) in December. We got an initial casein/gluten test for her, and when that came back positive for both, I ended up getting the Complete Gene Panel test from EnteroLab done for her and our entire family. The results are the last members of the family are finally in as of this week, and I just don't know what to think. We seem to be testing positive for just about everything, even though we don't have a celiac gene.

Here are our test results:

DD (age 3)

Fecal Anti-gliadin IgA 148 Units (Normal Range <10 Units)

Fecal Anti-casein (cow

[dadoffiveboys]

Well I did the celiac blood tests for myself and gene tests for three of my kids. We all turned up negative on the TTG, IgA and some others. I was equivocal on one test so I decided to cut out gluten. One of my children (negative on those tests) had failure to thrive. So we cut out gluten anyways. All of the symptoms went away. No reflux, asthma problems, and other things. Two of my children had DQ 1,5, DQ3,8 (a celiac gene). My other child has DQ1,5, DQ4. He STILL has symptoms from gluten. I would say the DQ1,5 gene is a gluten sensitive gene and I would try a gluten-free diet to see what happens. Diet is the best test to see how you all feel.

[bear6954]

I am sorry to hear that things are more confusing than ever. I started to keep a log of my kids meals, drinks, poops, dates, times this occurred and what the poops looked like - etc to figure out what was going on. My son has issues with sugar and dairy. He can handle kraft singles, but yogurt give him diarrhea. Juices really bother him. He drinks crystal light and is gluten free. My daughter, who is neg for celiac, was having issues with real bad constipation and bad stomach cramps one day and diarrhea the next. I finally figured out that artifical sweetners cause her to have real bad stomach aches and diarrhea. I put her on koolaide instead of crystal light and she is all better! Sometimes we have to be our own detective to figure out what is going on. I hope this helps.

[Jestgar]

There is no identified "Celiac gene". Some of the DQs are more associated with Celiac diseas, but none of them are causative.

[maile]

To echo what Jetsgar said just because you don't carry one of the 2 genes that are currently identified with "Celiac" by the US and Canadian Medical establishment does not mean you don't have an autoimmune reaction to gluten. Check Ravenwoodglass' sig, you'll see she is HLA 9,9 and she found that out AFTER she was officially diagnosed with Celiac. I've read a number of her posts and she has noted that her genes are recognized as celiac in Japan, but not yet in the US. Remember that the HLA typing and identification of any genes connected to autoimmune is in it's infancy and what constitutes a celiac gene today may only be half the list in the future.

your enterolab tests indicate that both you and your kids have a pretty obvious reaction to gluten, jmho but that alone is worth it to me to cut out the gluten. I personally don't want my kids going thru what I go/have gone thru, especially if it is in my control to do something about it.

[ravenwoodglass]

To echo what Jetsgar said just because you don't carry one of the 2 genes that are currently identified with "Celiac" by the US and Canadian Medical establishment does not mean you don't have an autoimmune reaction to gluten. Check Ravenwoodglass' sig, you'll see she is HLA 9,9 and she found that out AFTER she was officially diagnosed with Celiac. I've read a number of her posts and she has noted that her genes are recognized as celiac in Japan, but not yet in the US. Remember that the HLA typing and identification of any genes connected to autoimmune is in it's infancy and what constitutes a celiac gene today may only be half the list in the future.

your enterolab tests indicate that both you and your kids have a pretty obvious reaction to gluten, jmho but that alone is worth it to me to cut out the gluten. I personally don't want my kids going thru what I go/have gone thru, especially if it is in my control to do something about it.

Hi, You can't go off of the gene tests for absolute proof that you either have celiac or you don't. The same applies to blood tests and biopsy. All are tools to aid in diagnosis but none are conclusive with the exception of positive biopsy as far as US doctors are concerned. Even with the biopsy you can find some doctors ignoring the changes that precede total villi destruction and telling folks to go ahead and eat gluten until the villi are totally destroyed and then they will diagnose. It is not IMHO wise to wait that long.

I have a double DQ9 and that in the US is considered to be associated with rheumatoid arthritis. Doctors have noted that many RA patients also have 'IBS' but they are rarely checked for celiac. It makes me wonder how many would have their RA go into remission if doctors would have them do a trial gluten-free or at least blood test. My gene is an unusual gene in the US, it is most common in non-caucasian oriental populations. How I got 2 copies from parents that are Welsh, Irish, German, Dutch and English is a total mystery. There is so much we don't know about genetics, in Turkey my gene is associated with excema, and as mentioned in Japan it is associated with a rare form of adult onset Type 1 diabetes and celiac. DQ1 from what I have seen on the board is often associated with neuro issues such as depression, anxiety and learning difficulties. It is hard sometimes for doctors to recognize and acknowledge any form of celiac that is not a textbook presentation. Folks sometimes suffer for years before the gut symptoms show up with strong enough force so that celiac is considered. My brain, skin and the bones and muscles were strongly effected for many years before gut stuff became more than an occasional annoyance. The same is true for my children. I would give anything to be able to go back in time and get the family on the diet before permanent damage was done. The impact on my childrens lives was severe, not just because they were watching me die slowly but also because of the impact it had on their own systems. If I were you with those numbers and a double dose of a DQ1 gene I would get the whole family gluten free.

[hypatia7777]

Thanks, all! I guess what I really want is some sort of clarity. While it's in the realm of possibility that my whole family has celiac disease, I think it's unlikely. I haven't heard of DQ 1, 1 celiac family. Given our genotype I think it's much more likely that we have some sort of non-celiac gluten sensitivity. But I feel confused because what exactly is non-celiac gluten sensitivity? I suspect it's not just one issue thing -- it's lots of different things, some serious, some not. Some permanent, some not. Some caused by diet, some caused by other things. But that's leaving me confused about what to DO.

I have not really noticed my daughter feeling better since we went gluten-free/CF a month and a half ago. Part of me wants to crack down on more foods -- do something along the lines of the SCD and see what happens. Another part of me wishes that when my daughter's pediatrician said, "Don't worry, it's just toddler diarrhea," that I had smiled and nodded and believed him and not worried. Maybe everything would be fine. My mother thinks my daughter is fine and I am crazy overreacting.

[ravenwoodglass]

Thanks, all! I guess what I really want is some sort of clarity. While it's in the realm of possibility that my whole family has celiac disease, I think it's unlikely. I haven't heard of DQ 1, 1 celiac family. Given our genotype I think it's much more likely that we have some sort of non-celiac gluten sensitivity. But I feel confused because what exactly is non-celiac gluten sensitivity? I suspect it's not just one issue thing -- it's lots of different things, some serious, some not. Some permanent, some not. Some caused by diet, some caused by other things. But that's leaving me confused about what to DO.

I have not really noticed my daughter feeling better since we went gluten-free/CF a month and a half ago. Part of me wants to crack down on more foods -- do something along the lines of the SCD and see what happens. Another part of me wishes that when my daughter's pediatrician said, "Don't worry, it's just toddler diarrhea," that I had smiled and nodded and believed him and not worried. Maybe everything would be fine. My mother thinks my daughter is fine and I am crazy overreacting.

One of the reasons you haven't heard of them is that it is not routine to do a gene panel on every celiac they diagnose. Although I really think they should. You do know at least one family that is DQ1, every single one of them and celiac. Even if it is only on the boards. (See my sig)

[hypatia7777]

Hi Ravenwoodglass,

You make a good point. There is another family out there. I'm feeling calmer now. Going to keep up the Gluten-free Casein-free for awhile and see what happens.

[gfb1]

[snip]

Me

Fecal Anti-gliadin IgA 166 Units (Normal Range <10 Units)

Fecal Anti-tissue Transglutaminase IgA 63 Units (Normal Range <10 Units)

Quantitative Microscopic Fecal Fat Score <300 Units (Normal Range <300 Units)

Fecal Anti-casein (cow

[RollingAlong]

Wangen's Healthier without Wheat is the best book I've seen so far on non-celiac gluten sensitivity.

[Kitty949]

Hi Ravenwoodglass,

You make a good point. There is another family out there. I'm feeling calmer now. Going to keep up the Gluten-free Casein-free for awhile and see what happens.

Hi there, I am new to this board. Well, I am one of those individuals who has been diagnosed with Celiac via positive biopsy. However, I do not have the DQ2 or DQ8 Genes. Go figure! I have been Gluten Free for 3 weeks and following the painful detox (a lot of physical pain), I feel great! I am positive that there are more than 2 Genes affiliated with Celiac Disease. There is just too much undiscovered at this point. Bless you for taking care of your family. I was horribly ill for 10+ years. There is absolutely no reason I would go back to a Gluten lifestyle by choice! I never even have cravings. The thought of having the poisonous feeling in my body again keeps me honest. I hope you find your definitive diagnosis some day.

Sincerely,

MK