Positive Blood Work And Negative Endo. Biopsy

[BeckyW]

My daughter tested positive on 2 blood tests for celiac disease. They scoped her and got a negative biopsy so they will not say she has celiac disease. She has dehydration, losing weight, bloating, gas and nauseous feeling. The doctor says she does not have all the classic celiac disease signs (the low anemic, calcium levels, etc). Her blood work came back 2.5 times the normal levels! I am so frustrated and just want to get some help for my daughter! From what I have read, she has all the signs of celiac disease. We are on day 4 of the gluten-free diet and she is not feeling any better (I realize it is too soon). This was the second doctor we went to - the first said she was anorexic and then called and said she tested positive for the celiac disease on her bloodwork. The second doctor said he will do an ultrasound now and retest her blood and test for the celiac disease gene.

Does anyone have any advice? I am so frustrated!

Thank you for any help and letting me air my frustration on this message board!

Becky

[CarlaB]

It just seems logical to me that there is a stage of this disease where the intestines are not damaged yet. I don't know why doctors don't consider this. I get so frustrated. Both my bloodwork and endoscopy came back negative, but when I had Enterolab test, everything was a high positive. I had been off gluten when I had the conventional tests done, and the docs didn't take that into consideration at all.

Do you know what two tests she tested positive on?

[AmandaD]

Becky - That surprises me that she was positive on the TTG but neg on the endoscopy - just double check with the doctor that they took enough samples of the tissue...

What exactly are they ultrasound-ing? And, have they double-checked for other auto-immune-like conditions?

Don't freak out...it may take a while to get to the bottom of what she's got going on in there. You have a good doc if they're testing her for the gene...stick with him/her. I assume you also have monitored your daughter very closely to make extra double-sure she doesn't have an actual eating disorder? I know when I was that age I had a mild anorexia problem (but no celiac yet) and I had started falling asleep constantly and having some other issues...

Becky, you're doing a great job as a mom - it sounds like you are being persistent but you're really listening to your doctor. Everything will be fine, it's just going to take time - which is soooooooo frustrating, believe me, I know!!!!!!!

Amanda

[guitarplayer4God]

  CarlaB said:

It just seems logical to me that there is a stage of this disease where the intestines are not damaged yet. I don't know why doctors don't consider this. I get so frustrated. Both my bloodwork and endoscopy came back negative, but when I had Enterolab test, everything was a high positive. I had been off gluten when I had the conventional tests done, and the docs didn't take that into consideration at all.

Do you know what two tests she tested positive on?

[BeckyW]

Thanks for your responses. I know she does not have an eating disorder. I'm not sure what the Doctor wants to ultrasound, I will find out more tomorrow when they call to schedule. I was just too schocked that she tested negative.

The blood work was Tissue Transglutaminase Ab.IgA of 17.9 with above 7 a positive and Endomysial IgA screen of 16.7 and 7 and above positive.

I just don't think they can ignore the positive bloodwork because the scope can back negative.

How does the Enterolab work and does the insurance cover it?

Thank you for all your support!

Becky

[CarlaB]

  BeckyW said:

Thanks for your responses. I know she does not have an eating disorder. I'm not sure what the Doctor wants to ultrasound, I will find out more tomorrow when they call to schedule. I was just too schocked that she tested negative.

The blood work was Tissue Transglutaminase Ab.IgA of 17.9 with above 7 a positive and Endomysial IgA screen of 16.7 and 7 and above positive.

I just don't think they can ignore the positive bloodwork because the scope can back negative.

How does the Enterolab work and does the insurance cover it?

Thank you for all your support!

Becky

If her tTg came back positive, there's no need to do the Enterolab. You can read through their website and learn a lot. www.enterolab.com If she is having an autoimmune reaction to gluten, she is at the very least gluten intolerant, which means she could still have malabsorption and all the celiac symptoms that will go away off gluten. If her villi were damaged and the damage found by endoscopy, by definition it would be celiac. I have poor absorption (this was tested by Enterolab), but the endoscopy showed nothing. The endoscopy is not 100% effective and can only rule in celiac, but cannot rule it out. They could have taken a sample from a place that was not damaged, or the damage could have been so slight they didn't see it or consider that it was a problem.