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

Help with daughters blood test results

Aliciam07

Recommended Posts

Aliciam07 Rookie
Aliciam07
Posted

My daughter, almost 7 years old, recently had a lot of blood work done, her Dr is out of the office, but another Dr in the practice said everything looked normal. I'm waiting for her Dr to come back and see what she thinks. I'm concerned because there is one abnormal result and I can't find info to tell me if just that one test being abnormal means anything. The reason for the blood work is mainly because of her poor growth, though she does have some other symptoms.

IgA 133 mg/dl

Reference range 33-200

 

CRP <2.9  same as reference range

 

Gliadin Deamidated Peptide IgA .4

Reference range <=14.9

 

Gliadin deamidated peptide IgG 33.9

Reference range <=14.9

 

TTG IgA .5

Reference range <=14.9

 

TTG IgG <.8

Reference range <=14.9

 

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

Celiac.com Sponsor (A8-M):


psawyer Proficient
psawyer
Posted

Even one positive can be diagnostic. This is one:  Gliadin deamidated peptide IgG 33.9. If unsure, a biopsy of the small intestine will provide definite confirmation.

There is a control test to validate the other ones, but I don't see it there. What is does is validate the others by checking on the overall antibody levels. But it is to detect possible false negatives. A positive is a positive.

I think your daughter has joined our club.

Aliciam07 Rookie
Aliciam07
Posted
  • Author

Thank you for your reply, though it's not necessarily what I wanted to hear, it is what I was thinking. 

cyclinglady Grand Master
cyclinglady
Posted

Peter is correct.  You do have a positive so that warrants further investigation.  Here is a link supporting our comments:

Open Original Shared Link

Open Original Shared Link

Does she have celiac disease?  You will never know for sure without an endoscopy.  Even then, there is a chance the biopsies are negative, but keep in mind that she might just be starting to develop celiac disease or that the damage was not captured (the small intestine is the size of a tennis court if spread out).  

Personally, I tested negative on all but the DGP IgA, yet I had moderate to severe intestinal damage.  The celiac blood tests are good, but they do not catch all celiacs,  some celiacs can even test negative to ALL the blood tests. Consider yourself fortunate that your doctor ordered several of the tests and not just the screening TTG IgA (very good, keeps cost down, but does not catch all).    The DGP is the preferred test in small children.  I do not know why it caught me because I am old,  but it did!  

Confusing, isn't it?  I wish there was an easier way to diagnose, but  we have to work with what we have available to us.  

ravenwoodglass Mentor
ravenwoodglass
Posted

Welcome to the board. I agree with the previous posters that you are very likely looking at celiac. Please do keep her on gluten until all celiac related testing is finsihed. After that do give the diet a good strict try even if the biopsies are negative. Also keep in mind that celiac is genetic so it would be a good idea to screen others in the family even if they don't seem to have symptoms.

Aliciam07 Rookie
Aliciam07
Posted
  • Author

Thanks everyone. I appreciate the answers. I'm waiting to hear back from her dr and then we will go from there. If the dr doesn't think the results show anything then I will get a second opinion thanks to everything that has been shared on here. I will make sure and not change her diet for now.  I am planning on getting tested myself, I have had suspicions since last summer that I could have it. I have a form of autoimmune arthritis, just unclear exactly what it is at this time. I  going to ask to be tested for celiac at my next appt though.

ironictruth Proficient
ironictruth
Posted

Run to the nearest celiac disease specialty center if you can. Especially with conflicting doc opinions. Where do you live? Honestly, I test positive to only the DGP and the newest research on its specificity is a mixed bag. My recent scope did not show "active" celiac disease but only a slight increase in IELs. 

 I am waiting for my post biopsy appointment with the Celiac specialist next month. But I've been through a couple of GI'S locally and honestly I  feel it was definitely worth going to a specialist. Especially when you have some positive blood work but a normal biopsy the doctors really go back and Forth on diagnosis and never really know for certain.  Unfortunately given the above I just said I probably still do not know for certain. Sigh. But I trust the specialist to be at the top of his game on the research  and at least I can feel confident and comfortable in what his opinion may be next month.

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

Celiac.com Sponsor (A8-M):


Aliciam07 Rookie
Aliciam07
Posted
  • Author

I'm in the Houston area so I'm assuming there are plenty of specialists around, though finding one that accepts my insurance might be hard. This might sound dumb, but do I search for a celiac specialist?? I'm so new to this and want to feel confident in what is/isn't wrong with my daughter. I'm with you on trusting the specialist to know the current research.

GFinDC Veteran
GFinDC
Posted

Open Original Shared Link

Open Original Shared Link

You can check with these groups to see if they recommend any doctors in Houston.

Aliciam07 Rookie
Aliciam07
Posted
  • Author

Thank you so much for those links, I will check into it.

Her pediatrician told me this afternoon she is wanting to repeat the bloodwork since that one test was elevated. I'm relieved that her pediatrician didn't dismiss it like the other dr in the practice did.

GFinDC Veteran
GFinDC
Posted

Open Original Shared Link

You can also find lots of information on celiac at the University of Chicago celiac site.  One test they suggest is the anti EMA antibodies.  I don't see that one listed in her results.  Probably because it is more expensive to do.  So they may have skipped it.  The other test they usually do is the total serum IGA levels, which is used to prove that the person's immune system actually makes IgA antibodies.  Some people don't make IgA antibodies, so the IgA tests are useless in them.

It looks to me like she makes IgA though, if this is the serum IgA result.

IgA 133 mg/dl Reference range 33-200

There are also gene tests they can do.  The genes indicate the possibility of developing celiac disease, not the automatic presence of celiac disease.  About 30% of people in the USA have one of the genes for celiac disease, but only about 1% develop celiac disease.

Some of the celiac genes are associated with other autoimmune conditions besides celiac disease.  So there are lists of AI associated conditions with celiac disease.  Sometimes called related conditions.

Open Original Shared Link

TexasJen Collaborator
TexasJen
Posted

Texas children's hospital in the med center has a celiac center now.

 

Open Original Shared Link

Good luck!

 

Aliciam07 Rookie
Aliciam07
Posted
  • Author

That's good to know about Texas Children's, unfortunately I don't believe they accept our insurance. Our former pediatrician joined with one of their medical groups and we had to find a new one due to insurance. I'll check out their site though.

ironictruth Proficient
ironictruth
Posted

You could possibly try calling the places in Texas and Chicago to see if they can refer you somewhere that does accept your insurance.

Oh good luck to you!

Aliciam07 Rookie
Aliciam07
Posted
  • Author

We've done bloodwork again, not everything is back yet, but so far all except for that same one are normal. 

cyclinglady Grand Master
cyclinglady
Posted

Waiting for the EMA, I bet.  Keep advocating!

this is interesting.  If celiac disease is excluded, she might still have a gluten sensitivity.  There just is not specific test for that.

Open Original Shared Link

Aliciam07 Rookie
Aliciam07
Posted
  • Author
52 minutes ago, cyclinglady said:

Waiting for the EMA, I bet.  Keep advocating!

this is interesting.  If celiac disease is excluded, she might still have a gluten sensitivity.  There just is not specific test for that.

Open Original Shared Link

Interesting!! I'm going to share that with her dr. I'll have to look into the gluten sensitivity more myself, the main reason we started testing is due to poor growth. As I learned more, I've seen several symptoms that could be explained by celiac. I like feeling informed so I'll know what to talk to the dr about or ask about.

I think those are the results we are waiting for still, I couldn't remember the name.

Archived

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

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

  • Member Statistics

    • Total Members
      133,334
    • Most Online (within 30 mins)
      7,748
    johnfreirefr
    Newest Member
    johnfreirefr
    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
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By knitty kitty · Posted

      @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
      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! 
    • 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.