Daughter's Tests Negative

[Lynne Billington]

Well, the doctor informed me today that my 13 yr olds blood tests were normal. Yet we seem to be able to control her fatigue like syndrome with food. Why are the tests so inconclusive so often?

Lynne

[KaitiUSA]

Which tests did they test for? Did they test for EMA and tTG? Those are very specific for celiac. Also sometimes tests come back negative so if you think it may still be celiac don't rule it out yet and you may want to go to a doctor who is knowledgable with celiac.

You may want to have her thyroid checked. Having your thyroid off can cause all sorts of problems including fatigue and thyroid problems are common with celiac.Good luck

[MySuicidalTurtle]

Sometimes blood tests can be wrong when they come out negitive.

[gf4life]

Yet we seem to be able to control her fatigue like syndrome with food.

Had you already tried her on the gluten-free diet before the blood tests?? If you did then that could have messed with the results. One book I read says that when you are gluten-free before the blood tests that it can take anywhere from 3 months to more than a year back on gluten for the damage to be done in the intestines enough to produce positive blood test results. Most doctors still recommend about 2 weeks to a month! That is not enough time for most people to produce positive levels of antibodies in their blood, unless they are so highly sensitive that they would most likely end up hospitalized after one day back on gluten!

I would consider either Enterolab(my first choice), or retesting after a longer time on gluten (with your daughter knowing the effects it will cause on her health and it being her choice).

God bless,

Mariann

[KaitiUSA]

Yes if you think it may be celiac then I would say Mariann is definitely on the right track with the Enterolab suggestion. That does not require you get back on gluten if you are off of it.

Open Original Shared Link

Here is their website if you are interested

[Lynne Billington]

No, she wasn't gluten free before the tests. Had tests done on the same day we started trying gluten-free. Her dad is gluten-free. Thought it couldn't hurt to try it.

And the results were very interesting. If she was gluten-free all day, she was fine. If she ate gluten, the next day she couldn't get out of bed. So, then another gluten-free day, and she was better the next day -- not perfect but much better. Could attend school at least. Then the second day, she was fine. Ate gluten, back to bed.

Lynne

[CarolynM]

Her dad is gluten-free - celiac? gluten sensitive? I guess my daughter would be labeled gluten sensitive although we have no doctor diagnosis. She is SOOOO much better gluten-free. I think in her case, we found it too soon for intestinal damage or it was not where the samples were taken from. Maybe you are piecing this together before it is showing up in her blood. If her father has reason to be gluten-free, then the odds are good so does she. Don't dispel what you observe as a mother! I wish I had followed my instincts and gone gluten-free after the bloodwork and my observations after she ate pasta.

Good luck.

[Lynne Billington]

Kaiti - I can't tell you what the tests were. They were the 4 or 5 recommended by CSA in their pamphlet. I showed it to the pediatrician and he kept the pamphlet so I can't name them. I know one was Igg -- as far as I know, they're the top ones that I keep reading about. Wish I could answer your question better.

Lynne

[KaitiUSA]

IgG is NOT the best one for celiac. IgA is one that is pretty good,EMA and tTG are very specific for celiac. If she is feeling better gluten-free then she could be gluten intolerant and not celiac....and some blood tests can come back negative so she may in fact be celiac. What is her dad? a celiac?? I would recommend an Enterolab(tests for celiac through a stool sample and detects malabsorption, etc. They also can do a gene test and on their website it tells what they test for) or York labs allergy or intolerance testing.

If she feels better on the gluten-free diet though listen to the body it's better then any test or answer that a doctor can give you.

Good luck

[Meadow]

Hi Lynne,

I've been lurking the board for a few weeks, and I am by no means an expert on celiac issues, but I do have a 13 year old son in the same boat as your daughter. Two years ago, his endocrinologist (he has type 1 diabetes) picked up elevated tTG IgA and antigliadin IGG antibodies -- 28 and 30, respectively -- through a routine screen. His only symptom at the time was consitipation. Based on his lack of symptoms and equivcol lab results, the pediatric GI doc that we were referred to did not recommend an endoscopy. He did repeat the antibody screen 2 more times, and his tTG IGA dropped to "negative" while his antigliaden IgG rose to 40.

Flash forward, two years later, here we are with significant belly pain, nausea and headaches, and we have just learned that he has something called selective IGA deficiency. IGA antibodies protect our mucosal organs, including the GI tract, and low or negative levels render traditional celiac antibody tests useless. His NEW pediatric GI has scheduled an endoscopy a week from Monday, which should provide us with answers.

So, the question is, did your daughter's doctors check her total serum IGA? I'm kind of stunned that ours didn't until just now, and our original GI doc has an outstanding rep.

Good luck,

Meadow