Full Celiac Panel Negative But Are Figures Still Relevant

[Peta]

Just curious.

My 10yr old son had the Celiac Panel done (5 tests).

The normal range stated <20...... my sons results on these test was <20 but did not give the actual figures.

Are the figures relevant if they are considered in normal range... how would I know if he was IgA deficient (or would this have shown up in the other parts of the test).

I am surprised the doctor has referred him for a biopsy considering the results? It must be due to his symptoms, dq2 and dq8 genes, and irregular levels in his complete blood count?? or maybe his doctor just doesn't understand Celiac (which she doesn't)??

Any info?

Peta

[almostnrn]

Oh I can only imagine how frustrated you must be. I hope that some day this disease is really understood. I wish I had more information for you but all I can offer up is support here. Good luck to you and your family!

[nikki-uk]

  Peta said:

Just curious.

My 10yr old son had the Celiac Panel done (5 tests).

The normal range stated <20...... my sons results on these test was <20 but did not give the actual figures.

Are the figures relevant if they are considered in normal range... how would I know if he was IgA deficient (or would this have shown up in the other parts of the test).

I am surprised the doctor has referred him for a biopsy considering the results? It must be due to his symptoms, dq2 and dq8 genes, and irregular levels in his complete blood count?? or maybe his doctor just doesn't understand Celiac (which she doesn't)??

Any info?

Peta

Hmmm, it would be unusual for a doc to refer for biopsy without having good reason.

Did your son have a Total Serum IgA?? (that would show up IgA deficiency)

Maybe your son's levels were borderline? (i.e 19) just below the reference range or he is anaemic which would show on the complete blood count.

Does your son have 'classic' symptoms??

[Peta]

  nikki-uk said:

Hmmm, it would be unusual for a doc to refer for biopsy without having good reason.

Did your son have a Total Serum IgA?? (that would show up IgA deficiency)

Maybe your son's levels were borderline? (i.e 19) just below the reference range or he is anaemic which would show on the complete blood count.

Does your son have 'classic' symptoms??

I don't think even the doctor knows if they are borderline because other than '<20' there were no other figures printed, so we only know they were under 20 (which is normal)

His blood test shows low white cell count, low lymphocytes and a low ferritin level.

The doctor may have taken these into consideration but from what she said I think she is sending him for biopsy on the strength of his positive gene test. She is very uniformed when it comes to Celiac and she thinks the gene test means he has it!! (although I know differently)

The doctor we are referred to now is VERY informed on Celiac so I will follow it through and listen to what he has to say. I have an appointment Friday and he may deem the biopsy unecessary, although I would still like him biopsied as he has many classic symptoms that need explaining.

I guess, like everyone else, I am searching for answers.

Thanks,

Peta

[aikiducky]

I think with a positive gene and symptoms your doctor is actually being prudent to consider a biopsy. It's entirely possible to have negative blood work and a positive biopsy!

Pauliina

[rez]

Did your son have a tTG test? We have gotten two opinions from very good doctors that would not biopsy unless there is a positive tTG. Of course if the patient is IGA deficient that's another story. My son's tTG is postive, but daughter's is not. She has Hypothyroid, joint pain, allergies, etc. but BOTH docs we consulted said it is not wise to biopsy w/ out a postivie tTG as tTG titer portrays the amount of damage to the small intestine. Good luck. Check to see if your doc did a total IGA and tTG. Good luck! I'm remembering now. Wasn't your son right on the line for the tTG? Maybe that's why they're biopsying.

[Peta]

  rez said:

Did your son have a tTG test? We have gotten two opinions from very good doctors that would not biopsy unless there is a positive tTG. Of course if the patient is IGA deficient that's another story. My son's tTG is postive, but daughter's is not. She has Hypothyroid, joint pain, allergies, etc. but BOTH docs we consulted said it is not wise to biopsy w/ out a postivie tTG as tTG titer portrays the amount of damage to the small intestine. Good luck. Check to see if your doc did a total IGA and tTG. Good luck! I'm remembering now. Wasn't your son right on the line for the tTG? Maybe that's why they're biopsying.

My son's tTg (which I presume is Tissue Transglutaminase IgG and IgA) was <20. The normal range was <20 so he appears normal there too! Yet she still said he needs a biopsy.

Our local doctor pointed to the gene results on the screen and said "it looks like he is celiac" so in other words, not really sure she knows what she is looking for.

I am seeing a specialist tomorrow to arrange his biopsy but she may also be able to give a clearer idea of what she thinks. Perhaps a biopsy is ordered on the strength of classic symptoms and irregular bloodwork (wcc, lympho, ferritin, etc). There is definitely something not right going on in his system.

Tomorrow I should have a clearer idea? Hopefully!

Peta

[rez]

Good luck. The specialist will be able to shed some light on things.