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

Celiac Blood Testing


dkaj

Recommended Posts

dkaj Newbie

Hi All,

I am new to the forum.  I have 2 children with GI issues and I myself have had IBS type symptoms most my life.   We've had blood work celiac panels run on both of my children and told they were negative with no need for genetic testing.  My dd also had an endoscopy done at Mayo Clinic in Rochester and from all those results, I see they did not do any separate biopsies for celiac.  When I talked to the nurse about it later because dd was still having symptoms, I was told that since there was no sign of inflammation or damage, they did not need to do the biospies for celiac.   Not sure what I think about that.  My gut tells me they can not see that well to know for sure, but wanted the groups advice on all of this.     OK, so my dd's GI history is MSPI as a baby, then reflux and regurgitation of foods possibly related to histamine intolerances, and also possible fructose malabsorption. She's also has constipation issues since she was a baby.   Recently diagnosed with SIBO at age 8 but since the methane gasses were higher toward the end of the breath test, doc thought it was being caused by her constipation.    Her vitamin B-12 was over 1500.   No exact number was given, just over 1500.     DD has aversion to almost all fruits and veggies.   She'll eat strawberries, green beans, some lettuce and cooked carrots.   Sometimes some applesauce or fresh apples but we are pealing the skins to make easier to digest. .  She also has texture issues but is very smart, top of her class.   Was not growing at one time around age 2, but now is growing and gaining weight but on the lower end of the curve for her age but looks healthy.    So  here are my dd's blood test results.  She was almost 7 years at the time.   Immunoglobulin A Serum =101  ( range is 33-200);

Gliadin Peptide Antibody, IgA  = 2  (range 0-19); tTG Antibody, IgA  =4  (range 0-19).      Also, my son's Celiac results were almost identical to my daughters and the same testing panel was done on him.   Both tests were completed by ARUP labs out of Salt Lake City, UT.      

   Any advise on these test results would be appreciated.   Specific questions being do you all think ARUP's panel is complete or a good one.  Do those blood test results look questionable at all for possible celiac disease or do they looked strongly negative.   Just trying to put this to rest as FP doc keeps telling us to avoid the wheat, but don't want to take her off it, if more testing should be completed.      


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



Celiac.com Sponsor (A8-M):



GottaSki Mentor

First thought.

Have you been properly tested for celiac disease?

Other thoughts:

It is difficult sometimes kids take longer to test positive and do agree that samples should have been taken and sent to the lab during the endoscopy...sadly not many doctors want to move forward with celiac diagnosis once blood is negative.

Did either child have a DGP-IgG?

dkaj Newbie

Thanks Gottaski,  No, I have not been tested myself for Celiac.    I've never had an endoscopy.  Years ago I had a sigmoidoscopy, BE series and upper GI Barium study but that was it. I was told all was fine with these tests and  I was told I had IBS with no advice. Just avoid gassy foods.       Neither kids have had the DGP-IgG test done.   Do you know which lab runs that test in the US.   All the hospitals in our city use ARUP out of Salt Lake City.    Not sure if ARUP does that test.    It seems like the GI docs in our town don't do celiac biospies very often.  I've just heard stories of people having endoscopies and no biopsies for celiac being done.    That's why we went to Mayo with my daughter.  They are supposed to be the best and then they didn't even do the biopsies.     What are your thoughts on the results I listed??   I don't even know what the Immuglobulin A test is for?   Is that to show if a person if IGG or IGA deficient???   No one explained any of the blood test results to me.   Just that the kids were negative.   Don't get to talk to doctor about results.   The nurses always just call back and say they are negative and then they don't know the specifics about the tests.   Very frustrating....  

GottaSki Mentor

Oh goodness.

Yes, the Immuglobulin A is often referred to as "Total Serum IgA" and is a control test to see if one is IgA deficient. If deficient then some docs will order the IgG based celiac antibody tests.

Here's one problem....some, especially young kids can be positive on one of any antibody tests or all of them. I always recommend kids with obvious symptoms &/or family history of celiac disease be tested with the complete celiac antibody panel.

I'll add the complete list when I get back to my laptop....on mobile version just now.

Hang in there...keep reading.

I would suggest you get a complete antibody panel yourself. Your primary can order it.

Archived

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

  • 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. - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

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

    2. - Jane02 replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

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

    3. - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

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

    4. 0

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

    5. - Scott Adams replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

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

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,328
    • 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

    • knitty kitty
      @Jane02, I hear you about the kale and collard greens.  I don't do dairy and must eat green leafies, too, to get sufficient calcium.  I must be very careful because some calcium supplements are made from ground up crustacean shells.  When I was deficient in Vitamin D, I took high doses of Vitamin D to correct the deficiency quickly.  This is safe and nontoxic.  Vitamin D level should be above 70 nmol/L.  Lifeguards and indigenous Pacific Islanders typically have levels between 80-100 nmol/L.   Levels lower than this are based on amount needed to prevent disease like rickets and osteomalacia. We need more thiamine when we're physically ill, emotionally and mentally stressed, and if we exercise like an athlete or laborer.  We need more thiamine if we eat a diet high in simple carbohydrates.  For every 500 kcal of carbohydrates, we need 500-1000 mg more of thiamine to process the carbs into energy.  If there's insufficient thiamine the carbs get stored as fat.  Again, recommended levels set for thiamine are based on minimum amounts needed to prevent disease.  This is often not adequate for optimum health, nor sufficient for people with absorption problems such as Celiac disease.  Gluten free processed foods are not enriched with vitamins like their gluten containing counterparts.  Adding a B Complex and additional thiamine improves health for Celiacs.  Thiamine is safe and nontoxic even in high doses.  Thiamine helps the mitochondria in cells to function.  Thiamine interacts with each of the other B vitamins.  They are all water soluble and easily excreted if not needed. Interesting Reading: Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet https://pubmed.ncbi.nlm.nih.gov/19154566/ Safety and effectiveness of vitamin D mega-dose: A systematic review https://pubmed.ncbi.nlm.nih.gov/34857184/ High dose dietary vitamin D allocates surplus calories to muscle and growth instead of fat via modulation of myostatin and leptin signaling https://pubmed.ncbi.nlm.nih.gov/38766160/ Safety of High-Dose Vitamin D Supplementation: Secondary Analysis of a Randomized Controlled Trial https://pubmed.ncbi.nlm.nih.gov/31746327/ Vitamins and Celiac Disease: Beyond Vitamin D https://pmc.ncbi.nlm.nih.gov/articles/PMC11857425/ Investigating the therapeutic potential of tryptophan and vitamin A in modulating immune responses in celiac disease: an experimental study https://pubmed.ncbi.nlm.nih.gov/40178602/ Investigating the Impact of Vitamin A and Amino Acids on Immune Responses in Celiac Disease Patients https://pmc.ncbi.nlm.nih.gov/articles/PMC10814138/
    • Jane02
      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! 
    • knitty kitty
      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
      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
×
×
  • 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.