Dr. Says Daughter Likely Has Cd.

[dmchr4]

My 8 yo daughter's doctor just told us he thinks it is very likely she has celiacs. She tested positive on the two AGA Iga (weak positive - 21) & IgG tests (IgG was really high - 161), but negative (2) on the tTG. Based on her symptoms and blood test, he says it's likely that she has it. He doesn't recommend biopsys on kids. She's now gluten-free (6 days so far). He says if you have the AGA Iga positive, there's an 83% chance you've got it, and if you have AGA IgG positive, there's a 72% chance.

She has stomachaches, headaches, lactose intolerance, hives, irritability (dr. jekyll & mr. hyde), and a bunch of other symptoms. Her cholesterol was actually high, and her iron count was fine.

So should I have pursued further testing to get a more sure diagnosis? If she doesn't have celiacs, is it gluten intolerance/allergy (is there such a thing?) as opposed to a genetic auto-immune disease? If she DOES have it, should I have the rest of the family tested? This is another reason why I'm wondering if I should have a more certain diagnosis. Should I get the others tested anyway? Should I get further testing on my 8 yo daughter (I guess you can do genetic testing and still have that be accurate?) No one else really has any specific symptoms like she has had, but my 1 yo may be suspect. My husband has had joint pain, acid reflux and eczema. He would absolutely have the hardest time adapting to a new diet and he would not like to know. The dr. said not to worry about testing anyone else if they didn't have symptoms, but I've read here that you can be asymptomatic and still have it. (Which seems like a huge bummer! )

How do they test 18 mo & 3 yos? I also have a 10 yo.

[frstr8tedmom]

I just went through this with my daughter (6 yo) and her doctor told me just the opposite. She didn't test positive for the blood sensitivity but did for the genetic markers (DQ@ & DQ8). Therefore, since she is allergic to wheat (different to celiac and gluten intolerence) he claims she couldn't have celiac because he has never seen the two together. He said you either have one or the other. I TOTALLY disagree with this physician. Deep down my instincts tell me she is celiac because of such a great improvement on the diet. She has been gluten free for 5 months prior to the test though so I didn't expect her to have that part come back positive. She is a whole new person on the gluten free diet and when he advised I put her back on it for further testing I refused. I don't want to see her so sick again just so they can tell me she has it for sure. If she gets better on the diet you will know. Some doctors only use the food challenge as a diagnosis along with the blood tests you have had. Good Luck!

Sandra

[dmchr4]

If your daughter was gluten-free when she had the blood test, she would definitely test negative. And I thought the genetic markers were 95% accurate for predicting celiac disease.

So if you disagree with the doctor, are you having the rest of the family tested anyway? Are you going to get a second opinion? Or are you just going with the gluten-free diet without the confirmation?

My main concern is that if she is merely gluten intolerant (can you be gluten intolerant w/o having celiacs?), then it may be something she outgrows like other food allergies/intolerances/sensitivities. It also wouldn't be hereditary, and thus no one else would have it w/o symptoms. If she doesn't have celiacs, I don't want to put the rest of the family through testing for it.

For her to be on a gluten-free diet won't be so bad, she's been used to trying allergy diets and if she feels better on a gluten-free diet, then it's well worth it. But no one else has symptoms like hers, and for them to have to go on a gluten-free diet would be very hard since they would have no visible advantages to it!

[MySuicidalTurtle]

You can be gluten-free and still test possitive.

There are other ways to test for celiac disease introlab (sp?) and biopsy.

I would test everyone since my brother didn't have symptoms when I was tested but had them a year after and as a child. The same with my mother. I was diagnosed through blood and my brother through blood and bipsy. . .my mothers blood came back negitive and she has had other tests but the gluten-free diet has made her much healthier.

It is a shame to not test (like my family) when there are no symptoms and wait months or years until they come. . .I think it's best to catch the disease so it can't do anymore harm.

Doctors are always tricky. . .my brothers didn't want to say he had celiacs (even with pos blood and me having it) until he did biopsy, too. . .some doctors just don't believe in it. . .or don't know enough.