Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Full Celiac Panel Negative But Are Figures Still Relevant

Peta

Recommended Posts

Peta Explorer
Peta
Posted

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

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


almostnrn Explorer
almostnrn
Posted

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 Enthusiast
nikki-uk
Posted
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 Explorer
Peta
Posted
  • Author
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 Apprentice
aikiducky
Posted

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 Apprentice
rez
Posted

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 Explorer
Peta
Posted
  • Author
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

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


rez Apprentice
rez
Posted

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

Archived

This topic is now archived and is closed to further replies.

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,590
    • Most Online (within 30 mins)
      7,748
    uhlissuh
    Newest Member
    uhlissuh
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Who's Online (See full list)

  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • trents
      Potential celiac need advice

      By trents · Posted

      Welcome to the forum, @Ben98! If you have been consciously or unconsciously avoiding gluten because of the discomfort it produces then it is likely that your blood antibody testing for celiac disease has been rendered invalid. Valid testing requires regular consumption of generous amounts of gluten. The other strong possibility is that you have NCGS (Non Celiac Gluten Sensitivity) which shares many of the same symptoms with celiac disease but does not have the autoimmune component and thus does not damage the small bowel lining. It is 10x mor common than celiac disease. There is currently no test for NCGS. Celiac disease must first be ruled out. Some experts in the field believe it can be a precursor to the development of celiac disease. Having one or both of the primary genes for developing celiac disease does not imply that you will develop active celiac disease. It simply establishes the potential for it. About 40% of the population has the genetic potential but only about 1% develop active celiac disease. 
    • Ben98
      Potential celiac need advice

      By Ben98 · Posted

      TTG blood test and total IGA tested on many occasions which have always remained normal, upper GI pain under my ribs since 2022. I had an endoscopy in 2023 which showed moderate gastritis. no biopsy’s were taken unfortunately. genetic test was positive for HLADQ2. extreme bloating after eating gluten, it’ll feel like I’ve got bricks in my stomach so uncomfortably full. the pain is like a dull ache under the upper left almost like a stitch feeling after a long walk. I am just wanting some advice has anyone here experienced gastritis with a gluten issue before? thank you  
    • Wheatwacked
      Unusual bright yellow but odourless discharge

      By Wheatwacked · Posted

      "Conclusions: The urinary iodine level was significantly lower in women with postmenopausal osteoporosis, and iodine replacement may be important in preventing osteoporosis"  Body iodine status in women with postmenopausal osteoporosis Low iodine can cause thyroid problems, but Iodine deficiency will not show up in thyroid tests.  Iodine is important for healing, its job is to kill off defective and aging cells (Apoptosis). Skin, brain fog, nails, muscle tone all inproved when I started taking 600 mcg (RDA 150 - 1000 mcg) of Liquid Iodine drops. Some with dermatitis herpetiformis, Iodine exacerbates the rash.  I started at 1 drop (50 mcg) and worked up to 12 drops, but I don't have dermatitis herpetiformis.
    • cristiana
      How long does it take to gain weight?

      By cristiana · Posted

      That's great news, you can do this.  Let us know how things go and don't hesitate to ask if you have any more questions. Cristiana 😊
    • petitojou
      How long does it take to gain weight?

      By petitojou · Posted

      Thank you so much for sharing your experience and I found myself giggling with happiness as I read how your body reached such spring! And I hope that your current journey is also successful!! Definitely starting the food diary! So many amazing advices. And it’s very scary. It really hits all our soft spots as well as our confidence system. Most doctors I went thought I was underage despite being in my late 20s. Right now I look like am I twelve, but is also this body that’s taking so much, so I might as well love it too! Going to make the necessary changes and stay in this path. Thank you again! 🫶
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.