Received Lab Results - Completely Confused

[Lawspike]

How in the world did my initial lab work come back negative????

I just picked up a copy of my lab results, still waiting on one result, but here is the lab results so far and biopsy results:

IgA: 58 (ref range: 19 units or less - neg

20-30 units: week positive

30 units or greater:: positive

IgG: 44 (ref range: 19 units or less - neg

20-30 units: week positive

30 units or greater:: positive

Biopsy: Moderate to severe villous blunting with intraepithelial lymphocytosis and mononuclear cell expansion of the lamina propria, most consistent with gluten sensitive enteropathy (sprue).

I CLEARLY have Celiac. So, my question is... what is the point of the initial lab work - especially if it is giving a MAJOR false negative!??

My initial la work is as follows:

Tissue Transglutaminase Antibody, IgA : 12 (ref range 0-19)

It goes on to state:

If Tissue Transglutaminase Ab, IgA is negative, the Endomysial Ab, IgA Titer by IFA is not performed.

IgA antibody against human tTG, if detected at a level greater than 19 units, may suggest the possibility of certain gluten sensitive enteropathies such as celiac disease and dermatitis herpetiformis.

I also had high TP, high ALB, high RBC, low MCV and low FER on initial labwork.. all classic *signs*

I CLEARLY HAVE celiac (as per the biopsy and follow up lab work and I HAVE DH (on head, arms and back).... ) How could I get a false negative when my numbers above are soooo high?!?

[ravenwoodglass]

Thats why I always tell folks to try the diet no matter what the test results. I don't know why false negatives occur but they do and they delayed my diagnosis for a very, very long time as the doctors relied on those false negative tests.

On the good side, now you know and can start healing.

[ang1e0251]

I am no expert on blood work but so-o-o many people comment here how there initial tests are negative that I just have to think that there must high numbers of false negatives. I just really think a better diagnostic test would be much more valuable. How many persons continue to eat gluten damaging their bodies because of these tests?

[Lynayah]

My first test was negative, too. I didn't know I had to eat gluten for 8 weeks before being tested - doc at the time didn't tell me. I have another test coming up in August. As I wait, I am actually afraid the next test will come back neg., too -- possibly because the doc hasn't asked me to eat enough gluten each day in prep. I know I have either gluten-intolorance or celiac disease -- no doubt. I just thank goodness for this forum where I know I am not alone.

I remember reading somewhere that when you have DH - the skin disorder -- they can biopsy the skin to test for celiac disease. Forgive if I missed it in your post (I'm not the best at reading medical "stuff"), but did you have the skin biopsy done?

In the meantime, please know you are not alone. Many of us have been told "negative," only to continue with life thinking we're fine . . . and yet have symptoms, problems, confusion. There is still so much that medical science still needs to learn, perfect or discover. It is up to us to help direct them. Everything happens for a reason, so they say.

Hang in there. Keep using this forum for support.

Sending a big hug,

Lyn

[gfb1]

How in the world did my initial lab work come back negative????

[snip]

I CLEARLY HAVE celiac (as per the biopsy and follow up lab work and I HAVE DH (on head, arms and back).... ) How could I get a false negative when my numbers above are soooo high?!?

as others have said, your case is (sadly) not unusual.

being a diedinthewoolwordparsingacademic, imho, i do disagree that you had a 'false negative'.

blood tests just measure stuff in the blood, and there is a lower limit of detection.

your body, health and wellbeing are much more sensitive to changes in 'state' than any blood test. however, it is exceedingly difficult to trust yourself to know you are, indeed, sick; when you get a printout saying that you are 'negative' or 'normal' (whatever that is...).

in fact, most people feel lousy BEFORE blood tests actually become 'positive'. this is why you feel sick, THEN go to the doctor -- not blood test yourself every month to see if you are BECOMING sick....