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. Jane02
      - Jane02 replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      8

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      Thank you so much @knitty kitty for this insightful information! I would have never considered fractionated coconut oil to be a potential source of GI upset. I will consider all the info you shared. Very interesting about the Thiamine deficiency. I've tracked daily averages of my intake in a nutrition software. The only nutrient I can't consistently...
    2. MichaelDG
      - MichaelDG posted a topic in Board/Forum Technical Help
      0

      celiac.com support

      How do I contact someone at celiac.com concerning the cessation of my weekly e-newsletter? I had been receiving it regularly for years. When I tried to sign-up on the website, my email was not accepted. I tried again with a new email address and that was rejected as well. Thank you in advance!
    3. knitty kitty
      - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      8

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      Hello, @Jane02, I take Naturewise D 3. It contains olive oil. Some Vitamin D supplements, like D Drops, are made with fractionated coconut oil which can cause digestive upsets. Fractionated coconut oil is not the same as coconut oil used for cooking. Fractionated coconut oil has been treated for longer shelf life, so it won't go bad in the...
    4. Scott Adams
      0

      Penobscot Bay, Maine: Nurturing Gluten-Free Wellness Retreat with expert celiac dietitian, Melinda Dennis

      until
      Hello! Join me and treat yourself to a four-day, three-night restorative gluten-free retreat in a peaceful, private coastal retreat setting near Penobscot Bay in Maine. Dates: April 10-13, 2026 Enjoy engaging classes...
    5. Scott Adams
      - Scott Adams replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      8

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      I do not know this, but since they are labelled gluten-free, and are not really a product that could easily be contaminated when making them (there would be not flour in the air of such a facility, for example), I don't really see contamination as something to be concerned about for this type of product.
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,327
    • Most Online (within 30 mins)
      7,748
    dnamutant
    Newest Member
    dnamutant
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • Jane02
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Jane02 · Posted

      Thank you so much @knitty kitty for this insightful information! I would have never considered fractionated coconut oil to be a potential source of GI upset. I will consider all the info you shared. Very interesting about the Thiamine deficiency.  I've tracked daily averages of my intake in a nutrition software. The only nutrient I can't consistently meet from my diet is vitamin D. Calcium is a hit and miss as I rely on vegetables, dark leafy greens as a major source, for my calcium intake. I'm able to meet it when I either eat or juice a bundle of kale or collard greens daily haha. My thiamine intake is roughly 120% of my needs, although I do recognize that I may not be absorbing all of these nutrients consistently with intermittent unintentional exposures to gluten.  My vitamin A intake is roughly 900% (~6400 mcg/d) of my needs as I eat a lot of sweet potato, although since it's plant-derived vitamin A (beta-carotene) apparently it's not likely to cause toxicity.  Thanks again! 
    • MichaelDG
      celiac.com support

      By MichaelDG · Posted

      How do I contact someone at celiac.com concerning the cessation of my weekly e-newsletter? I had been receiving it regularly for years. When I tried to sign-up on the website, my email was not accepted. I tried again with a new email address and that was rejected as well. Thank you in advance!
    • knitty kitty
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By knitty kitty · Posted

      Hello, @Jane02,  I take Naturewise D 3.  It contains olive oil.   Some Vitamin D supplements, like D Drops, are made with fractionated coconut oil which can cause digestive upsets.  Fractionated coconut oil is not the same as coconut oil used for cooking.  Fractionated coconut oil has been treated for longer shelf life, so it won't go bad in the jar, and thus may be irritating to the digestive system. I avoid supplements made with soy because many people with Celiac Disease also react to soy.  Mixed tocopherols, an ingredient in Thornes Vitamin D, may be sourced from soy oil.  Kirkland's has soy on its ingredient list. I avoid things that might contain or be exposed to crustaceans, like Metagenics says on its label.  I have a crustacean/shellfish/fish allergy.  I like Life Extension Bioactive Complete B Complex.  I take additional Thiamine B 1 in the form Benfotiamine which helps the intestines heal, Life Extension MegaBenfotiamine. Thiamine is needed to activate Vitamin D.   Low thiamine can make one feel like they are getting glutened after a meal containing lots of simple carbohydrates like white rice, or processed gluten free foods like cookies and pasta.   It's rare to have a single vitamin deficiency.  The water soluble B Complex vitamins should be supplemented together with additional Thiamine in the form Benfotiamine and Thiamine TTFD (tetrahydrofurfuryl disulfide) to correct subclinical deficiencies that don't show up on blood tests.  These are subclinical deficiencies within organs and tissues.  Blood is a transportation system.  The body will deplete tissues and organs in order to keep a supply of thiamine in the bloodstream going to the brain and heart.   If you're low in Vitamin D, you may well be low in other fat soluble vitamins like Vitamin A and Vitamin K. Have you seen a dietician?
    • Scott Adams
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Scott Adams · Posted

      I do not know this, but since they are labelled gluten-free, and are not really a product that could easily be contaminated when making them (there would be not flour in the air of such a facility, for example), I don't really see contamination as something to be concerned about for this type of product. 
    • trents
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By trents · Posted

      Contact them.
×
×
  • 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.