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Test Are In

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confused Community Regular
confused
Posted

i also had the celiac panel done when i sent in for the enterolab test. I wanted to be sure on all counts. Well I just spoke to my doctor and i am positive for celiac. I guess I am one of the few that didnt need to have the DQ2 or DQ8 gene.

paula

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lonewolf Collaborator
lonewolf
Posted

So what are your genes? I don't have DQ 2 or 8, but I swear I have Celiac (just not willing to do a gluten challenge to prove it). I have at least one copy of DQ3 subtype 7 (my son has two copies of it, so one had to come from me).

confused Community Regular
confused
Posted
  • Author
So what are your genes? I don't have DQ 2 or 8, but I swear I have Celiac (just not willing to do a gluten challenge to prove it). I have at least one copy of DQ3 subtype 7 (my son has two copies of it, so one had to come from me).

I am

Serologic equivalent: HLA-DQ 3,1 (Subtype 7,6)

paula

lonewolf Collaborator
lonewolf
Posted

Thanks. That's very interesting. I've read that DQ3, sub. 7 is almost exactly like DQ8 - I wonder if that's the key. My double DQ3-7 son is very gluten intolerant and it affects his digestive system and his behavior. His tests came out negative, but I think there wasn't enough damage done to show positive, since he's been gluten lite for most of his life.

JerryK Community Regular
JerryK
Posted
i also had the celiac panel done when i sent in for the enterolab test. I wanted to be sure on all counts. Well I just spoke to my doctor and i am positive for celiac. I guess I am one of the few that didnt need to have the DQ2 or DQ8 gene.

paula

Interesting. I took it as fact when I didn't have DQ2 or DQ8, that I didn't have the Celiac gene.

I don't want to know bad enough to go back on Gluten and get a biopsy...but I am certainly interested, being another DQ 3,1 Subtype 7....

Just goes to show you how much we don't know...j

CMCM Rising Star
CMCM
Posted

Well, doctors have really just skimmed the surface of knowledge about celiac disease. While most identified celiacs have DQ2 or 8, not all do. There are other unknown factors at work. With identical twins, who would have the same DNA, there are cases where one twin has celiac disease and the other doesn't. So there are definitely other factors involved. And there have been documented, endoscopy proved celiacs who have neither of the genes. Given the fact that relatively few Americans have been diagnosed thus far (those diagnosed tend to be those with the worst symptoms...thus they seek help and thus they get a diagnosis). But remember the analogy of the iceberg....the diagnosed cases are the tip, and the undiagnosed are the mass under water. So the data on celiac disease is incomplete at this point.

Just remember: those without the celiac gene can be just as sick as those with the gene, and a gluten free diet can help all who react to gluten. If you do not have the officially recognized celiac genes, that does not mean being gluten-free won't help you.

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    • knitty kitty
      Accuracy of testing concerns

      By knitty kitty · Posted

      Welcome to the forum, @McKinleyWY, For a genetic test, you don't have to eat gluten, but this will only show if you have the genes necessary for the development of Celiac disease.  It will not show if you have active Celiac disease.   Eating gluten stimulates the production of antibodies against gluten which mistakenly attack our own bodies.  The antibodies are produced in the small intestines.  Three grams of gluten are enough to make you feel sick and ramp up anti-gluten antibody production and inflammation for two years afterwards.  However, TEN grams of gluten or more per day for two weeks is required to stimulate anti-gluten antibodies' production enough so that the anti-gluten antibodies move out of the intestines and into the bloodstream where they can be measured in blood tests.  This level of anti-gluten antibodies also causes measurable damage to the lining of the intestines as seen on biopsy samples taken during an endoscopy (the "gold standard" of Celiac diagnosis).   Since you have been experimenting with whole wheat bread in the past year or so, possibly getting cross contaminated in a mixed household, and your immune system is still so sensitized to gluten consumption, you may want to go ahead with the gluten challenge.   It can take two years absolutely gluten free for the immune system to quit reacting to gluten exposure.   Avoiding gluten most if the time, but then experimenting with whole wheat bread is a great way to keep your body in a state of inflammation and illness.  A diagnosis would help you stop playing Russian roulette with your and your children's health.      
    • trents
      Accuracy of testing concerns

      By trents · Posted

      Welcome to the celiac.com community, @McKinleyWY! There currently is no testing for celiac disease that does not require you to have been consuming generous amounts of gluten (at least 10g daily, about the amount in 4-6 slices of wheat bread) for at least two weeks and, to be certain of accurate testing, longer than that. This applies to both phases of testing, the blood antibody tests and the endoscopy with biopsy.  There is the option of genetic testing to see if you have one or both of the two genes known to provide the potential to develop celiac disease. It is not really a diagnostic measure, however, as 30-40% of the general population has one or both of these genes whereas only about 1% of the general population actually develops celiac disease. But genetic testing is valuable as a rule out measure. If you don't have either of the genes, it is highly unlikely that you can have celiac disease. Having said all that, even if you don't have celiac disease you can have NCGS (Non Celiac Gluten Sensitivity) which shares many of the same symptoms as celiac disease but does not involve and autoimmune reaction that damages the lining of the small bowel as does celiac disease. Both conditions call for the complete elimination of gluten from the diet. I hope this brings some clarity to your questions.
    • McKinleyWY
      Accuracy of testing concerns

      By McKinleyWY · Posted

      Hello all, I was diagnosed at the age of 2 as being allergic to yeast.  All my life I have avoided bread and most products containing enriched flour as they  contain yeast (when making the man made vitamins to add back in to the flour).  Within the last year or so, we discovered that even whole wheat products bother me but strangely enough I can eat gluten free bread with yeast and have no reactions.  Obviously, we have come to believe the issue is gluten not yeast.  Times continues to reinforce this as we are transitioning to a gluten free home and family.  I become quite ill when I consume even the smallest amount of gluten. How will my not having consumed breads/yeast/gluten for the better part of decades impact a biopsy or blood work?  I would love to know if it is a gluten intolerance or a genetic issue for family members but unsure of the results given my history of limited gluten intake.   I appreciate the input from those who have gone before me in experience and knowledge. Thank you all!
    • trents
      A little about me and my celiac disease

      By trents · Posted

      I know what you mean. When I get glutened I have severe gut cramps and throw up for 2-3 hr. and then have diarrhea for another several hours. Avoid eating out if at all possible. It is the number one source of gluten contamination for us celiacs. When you are forced to eat out at a new restaurant that you are not sure is safe, try to order things that you can be sure will not get cross contaminated like a boiled egg, baked potatos, steamed vegies, fresh fruit. Yes, I know that doesn't sound as appetizing as pizza or a burger and fries but your health is at stake. I also realize that as a 14 year old you don't have a lot of control over where you eat out because you are tagging along with others or adults are paying for it. Do you have support from your parents concerning your need to eat gluten free? Do you believe they have a good understanding of the many places gluten can show up in the food supply?
    • Peace lily
      Gluten Free Coffee

      By Peace lily · Posted

      Okay went online to check green mountain k cups .It was said that the regular coffees are fine but they couldn’t guarantee cross contamination.with the flavors. im trying to figure out since I eliminated the suyrup so far so good. I’m hoping. thanks it feels good to listen to other people there views.
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