Please help me interpret dd's celiac results

[nurturebaby]

The doctor has left the office for the weekend, so I was only able to get the results from the receptionist - the celiac testing came back DQ2 positive and DQ8 negative.
So does she have it or not?

[Theloose]

Looks like she's got one copy of a gene that predisposes to celiac disease (DQ2). Chances are, the other gene is a 'gluten sensitivity' gene, though less linked to full celiac.
https://www.enterolab.com/StaticPage...rpretation.htm

I think the results don't tell you much about a celiac diagnosis or not - does she respond to a gluten free diet? Because the treatment for celiac vs the treatment for gluten sensitivity is the same - avoid all traces of gluten.

[nurturebaby]

Thanks - we haven't yet had success incorporating a gluten free diet We have a new baby and I'm totally overwhelmed and can't even imagine trying to go gluten free with her as a 'test' to see if there is any difference. Perhaps I just need to suck it up though...

[Theloose]

If you're still eating lots of gluten (roughly 2 slices bread/day, I think) then you can do the tissue transglutenimase and anti-gliaden IgA tests and they'll be a much better diagnostic than the gene test. I'm not actually sure I have the names of those tests right, celiac.com or someone else here can probably verify. That test will only test for celiac, though, not 'just' gluten intolerance. So a positive tells you a lot, but a negative is somewhat worthless.

[Satori]

I can tell you what my labs said point blank with no room for argument. Testing positive for either gene + symptoms = automatic dx, no need for blood work or biopsy. Thats how I ended up getting my dx since I couldn't stay on gluten long enough to get a + blood test. (I went GF for my nursling and only found out a year later after I was in much better health then I had ever been that gluten was the source of my life long misery when I tried going back on a regular diet)

[crunchy_mama]

Originally Posted by Satori

I can tell you what my labs said point blank with no room for argument. Testing positive for either gene + symptoms = automatic dx, no need for blood work or biopsy. Thats how I ended up getting my dx since I couldn't stay on gluten long enough to get a + blood test. (I went GF for my nursling and only found out a year later after I was in much better health then I had ever been that gluten was the source of my life long misery when I tried going back on a regular diet)

I would agree if you have genes and symptoms she needs to be off of it!!!!! The only way you are going to get a more clear diagnosis to their standards is to do a biopsy. You can do a blood test, but that is so inaccurate especially at these ages it is worthless in telling you much. A positive means a positive, but a negative means nothing.

[nurturebaby]

Thanks again everyone.

I'm really looking forward to speaking with the doctor today - all weekend I've pretty much been preparing myself to start a gf diet - probably not only for her, but pretty much my whole family, as I think I may have an issue as well. I'm actually going in to the doctor's today because I now have a nasty bumpy rash all over me, so I can ask about everything then.

I am actually hoping that they just give a diagnosis of celiac simply because I think it will help motivate me to do the diet. It's much easier when you have a concrete reason to do something so drastic, rather than doing to just 'see' if it helps. And then with school snacks, family functions, etc. it's just so much easier to say it's celiac instead of saying you're just avoiding gluten because you have a hunch, kwim?

I'm very scared to start the diet though. Like really scared. All my kids eat are grains and dairy (which I'm finding out is a big clue that they are sensitive to those very foods in which they crave!), so we'll have some adjusting to do...

[Wugmama]

You can do it, you really can. Go into the resource thread at the top of this forum and look at the recipe/meal ideas thread. Go to www.kathysrecipebox.com. There are many, many off the shelf items now that are gluten free (although expensive). Get yourself a nice rice maker and some wonderful basmati rice, just go for it!

~Tracy

[dannic]

My dd tested positive for 2 genes for intolerance to gluten and reacts VERY strongly to it. Tho she is not celiac--technically--the conclusion is the same: gluten free for life.

It can seem overwhelming, but it is really doable--especially these days, as there is so much more awareness (not enough, but more) and so many more products geared towards GF.

Just like any change, it takes time to get used to it, but we've been GF for two yrs now and the only times it's a bit stressful is when I'm trying to eat out or be organized enough for things like spontaneous parties/celebrations (but |I am getting better at that, too.)

DD went from having so many problems, both behaviorally and health-wise to being a normal little girl. It was/is SO worth it!

[Satori]

Originally Posted by Wugmama

You can do it, you really can. Go into the resource thread at the top of this forum and look at the recipe/meal ideas thread. Go to www.kathysrecipebox.com. There are many, many off the shelf items now that are gluten free (although expensive). Get yourself a nice rice maker and some wonderful basmati rice, just go for it!

~Tracy

Rice? Why would they need a rice maker? Seriously though, we haven't used rice anything in about 6 years except for the occasional rice I throw into soup or something. It was just recently we started using anything with rice flour again and thats just because of using the Betty Crocker GF mixes Having celiac does not = stuck with a rice diet for life

[dollyanna]

A few years ago I had a celiac disease antibody panel, and everything was negative.

GLIADIN IGG, EIA
GLIADIN IGA, EIA
TISSUE TRANSGLUTAMINASE IGA
RETICULIN IGA

So, this means I don't have celiac, right? But could I still be sensitive to it?