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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. Scott Adams
      0

      Going Low-Gluten May Harm Good Gut Bacteria, Researchers Warn

    2. cristiana
      - cristiana replied to Mell2's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      14

      Rectal pain

      When I have had what I think are episodes of this (I've never had a formal diagnosis for PF) it seems to be triggered by bloating caused by something I've eaten - a friend had an episode of this after eating too many apples, for me corn and rice cakes seemed to give me IBS and trigger this. I am not a medical person but it seemed like the extra pressure...
    3. Rogol72
      - Rogol72 replied to Butch68's topic in Gluten-Free Foods, Products, Shopping & Medications
      6

      Guinness, can you drink it?

      At a family wedding in Italy last year I was drinking gluten free Peroni which was fine for me. From the Daura Damn website ... " Our guarantee less than 3ppm: each batch is analyzed and certified by the CSIC using the R5 Competitive ELISA test before hitting the market. This way, we ensure that its gluten content is always below 3ppm "
    4. Mari
      - Mari replied to Jmartes71's topic in Coping with Celiac Disease
      6

      Related issues

      Hi jmartes, I brought up doTerra's website and see that they do have many supplements, offer support and help. And using their organic products has been helpful. and yet you are not able to work enough to support yourself when, if you were healtht, you could work for another 20 years. It does not seem that they offer a program to follow and instead...
    5. Colleen H
      - Colleen H posted a topic in Coping with Celiac Disease
      0

      Brain fog

      How bad can this get ?? Does it go away?? How long ? Thank you
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,276
    • Most Online (within 30 mins)
      7,748
    Sandra Hawn
    Newest Member
    Sandra Hawn
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • cristiana
      Rectal pain

      By cristiana · Posted

      When I have had what I think are episodes of this (I've never had a formal diagnosis for PF) it seems to be triggered by bloating caused by something I've eaten - a friend had an episode of this after eating too many apples, for me corn and rice cakes seemed to give me IBS and trigger this.  I am not a medical person but it seemed like the extra pressure down there perhaps added pressure to already sensitised pelvic and rectal muscles. Coeliacs can suffer from bloating when they are first diagnosed due to the inability to digest food properly.  Lactose for me caused a lot of bloating and when I came off it temporarily after diagnosis it helped reduce bloating.  Iron supplements and the timing of taking them also caused discomfort and I had to experiment a bit with type and timing before my gut felt comfortable.   Maybe something to think about?   Some coeliacs suffer from constipation - again, just a thought, but perhaps if you had issues with that it might be a contributor.
    • Rogol72
      Guinness, can you drink it?

      By Rogol72 · Posted

      At a family wedding in Italy last year I was drinking gluten free Peroni which was fine for me. From the Daura Damn website ... " Our guarantee less than 3ppm: each batch is analyzed and certified by the CSIC using the R5 Competitive ELISA test before hitting the market. This way, we ensure that its gluten content is always below 3ppm "
    • Mari
      Related issues

      By Mari · Posted

      Hi jmartes, I brought up doTerra's website and see that they do have many supplements, offer  support and help. And using their organic products has been helpful. and yet you are not able to work enough to support yourself when, if you were healtht, you could work for another 20 years. It does not seem that they offer a program to follow and instead are offering supplements for your symptoms. This has helped you but you are not able to work very much.  The Programs I have seen  online usually have 3 parts. The first is a Parasite cleanse. The 2nd is the Kidney cleanse and the  3rd is a Liver cleanse and gallbladder cleanse. You need to doall these cleanses to have your whole body functioning well. I can only reccommend the program I gave you because that is the one I used and still do. (drclark.net)  When I see a newprovider and tell I have Celiacs and they look skeptical I tell them that when I am gluttoned the reaction happens 8 or more hours later with intestinal painful cramping followed by diarrhea. Providers are willing to accept tha I probably have Celiacs and are more likely order tests such as vitamin levels. Is this what happens if you eat only a small amount of Gluten? You mentioned going to Mayors. 20 years ago many Dr.s wanted to include a celiac screening as a standard test so that more people eould diagnosed and not become disabled. It did not happen but the Federal levgislature did pass a law so that Celiacs could claim deductions for the gluten free food they bought. What were you going to ask the Mayors to do?
    • Colleen H
      Brain fog

      By Colleen H · Posted

      How bad can this get ?? Does it go away??  How long ? Thank you 
    • Clear2me
      Gluten free nuts

      By Clear2me · Posted

      Thank you for all the excellent information. I moved from Wyoming to California. May be its where I am located but So far none of the Costco Kirkland brand I have looked at is labeled gluten free. Same with the Sam's Members Mark. The Kirkland nuts you mention all say they are processed in a plant that processes wheat.  I am going to keep checking. Thank you. The Azure Market looks promising 😁 Take care S
×
×
  • 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.