Jump to content

  • 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):

Celiac Test Results...now I Have Questions

mommy2krj

Recommended Posts

mommy2krj Explorer
mommy2krj
Posted

Ok, so my youngest (6 year old) has already tested positive through blood work and we go for his endoscopy on the 19th. I don't have copies of his blood work results as they are with the docs in Madison and I didn't think to get them when we were down there last time.

 

Now. I have had everyone in the house go in for blood work. Myself, my husband, 18 year old daughter and 15 year old son. I went in today to the same lab tech that took my older kids' blood on Wednesday...2 days ago. I asked her when I could expect the results from the blood work and she told me by Wednesday for mine (granted I had a little more done than the kids as they are also running lipids and stuff for my thyroid) and that the kids' would probably be back on Monday as they had to be sent out to Marshfield.

Well...we went also for little guy's pre op appointment so I spoke with the pediatrician. At the end of the appointment he lets me know that the older two's labs came back and they are both negative. Huh. That was pretty quick considering what I had just been told and the fact that my husband's hasn't come back yet and he did his a week ago.

 

Now...here are my questions....I'll type out the results exactly as they appear on the page. It doesn't even seem like they ran the right tests....aside from the TTG...though maybe it's just that they didn't run a complete test? I don't know...I don't even know what I'm looking at...so here it is:

 

For my 15 year old son:

Tests: (1) Immunoglobulin A # (2458-8)

OBSERVATION                          VALUE                              EXPECTED

IGA                                              147 mg/dL                         66-436

 

Tests: (2) TIS.TRANSGLUTAMINASE  IGA AB (L.TGAA)

OBSERVATION                          VALUE                             EXPECTED

TTG IGA AB                               <1.2 U/mL                         0.0-3.9

 

 

 

 

For my 18 year old daughter:

Tests: (1) IMMUNOGLOBULIN A # (2458-8)

OBSERVATION                           VALUE                             EXPECTED

IGA                                               289 mg/dL                          66-436

 

Tests: (2) TIS.TRASGLUTAMINASE  IGA AB (L.TGAA)

OBSERVATION                               VALUE                        EXPECTED

TTG IGA AB                                    <1.2 U/mL                        0.0-3.9

 

 

 

Both of these labs were done at the local hospital under MEDITECHLAB if that makes any difference. I am going to bring these results with me to the GI when we go down on Wednesday to see what she says. I may need to find a new pediatrician as I think I've lost all faith in the one I have. :( *sigh* Maybe I'll just move them all over to my doctor since she's family practice. At least she understand what it means to be gluten free as she is herself.

Any thoughts on those test results would be most appreciated thank you!

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

Celiac.com Sponsor (A8-M):


nvsmom Community Regular
nvsmom
Posted

I think you are right that the only celiac test they ran was the tTG IgA. That is pretty common; my city only runs the tTG IgA and then if that is positive they run the EMA IgA.   :rolleyes: 

 

The IgA test they ran was the total serum IgA which is a control test to make sure the patient makes enough IgA for a valid  tTG IgA test - about 5% of celiacs are deficient in IgA so their tTG IgA test would not be accurate.

 

That being said, the tTG IgA test does not catch every case of celiac disease that it tests for. The tTG IgA has a sensitivity of 75-95% which means that 5-25% of undiagnosed celiacs eating a diet with gluten will test negative on those tests. They could not be celiacs but they have a 5-24% chance that they are celiacs and it was just missed somehow. With a history of celiac in the family, I think having other tests done could be helpful.

 

The full celiac panel is:

  • tTG IgA and tTG IgG
  • DGP IgA and DGP IgG (newer tests that are better at catching the disease in kids)
  • EMA IgA (very similar to the tTG tests but positive after a high level of villi damage is done)
  • AGA IgA and AGA IgG (older and less reliable tests but thought to show NCGI (gluten sensitivity) unlike the other tests which just indicate villi damage - as I understand it)

This report, on pages 11-12, discusses the various tests as well as their sensitivity and specificity (how often it indicates celiac disease when positive): Open Original Shared Link

 

Good luck with getting answers and with your other labs.  :)

momma bee Rookie
momma bee
Posted

We had the same tests run here on our family once our littlest one was diagnosed and we all came back negative as well (but hers had been negative as well)... I am wondering too if more tests need to be run to be sure! Seems odd and a bit un-nerving!

Good luck and let us know if they agree to run more tests in you all...I am thinking when finally meet the gi doc once the diagnosed one is over 6 months gluten free we can ask her about more testing so I would love to know what they recommend to you!

mommy2krj Explorer
mommy2krj
Posted
  • Author

Thanks for the replies. :) I do plan on talking to the GI about the whole family. I'm curious what she has to say. Still waiting for the results for myself and my husband. Going to have to call on Monday to see if the results are in for his....they should be!

 

I do plan on having the entire house go gluten free after the 19th. I've sat here and watched my little guy get sick and be in pain from something that is preventable....I'm not willing to even take the chance that there would be cc because someone wasn't careful enough with their food in my house. Bad enough we'll have to deal with it outside our house. Not to mention I'm not a big fan of cooking to begin with....so cooking two separate meals? Not gonna happen! Which is why I wanted everyone tested now. Regardless of whether they have Celiac's or not...if you live here you will be gluten free!

 

I will come back and post what the GI says and if my husband or I or both of us are Celiac or not. I also plan on trying to keep track of the things I notice in both my Celiac child and the older two that "aren't".

I just feel so bad having to continue to feed him like this when I know it doesn't make him feel good. :( We went the whole foods route thinking we were doing something healthy for our kids....and look where that got us! We will stay with the whole foods...it'll just be devoid of grains (or at least the ones that hurt the little guy!)

nora-n Rookie
nora-n
Posted

I would ask for the DGP IGG test as well, they are standard now together with the Ttg-IgA over here in northern europe

nvsmom Community Regular
nvsmom
Posted

I do plan on having the entire house go gluten free after the 19th. I've sat here and watched my little guy get sick and be in pain from something that is preventable....I'm not willing to even take the chance that there would be cc because someone wasn't careful enough with their food in my house. Bad enough we'll have to deal with it outside our house. Not to mention I'm not a big fan of cooking to begin with....so cooking two separate meals? Not gonna happen! Which is why I wanted everyone tested now. Regardless of whether they have Celiac's or not...if you live here you will be gluten free!

 

I will come back and post what the GI says and if my husband or I or both of us are Celiac or not. I also plan on trying to keep track of the things I notice in both my Celiac child and the older two that "aren't".

 

 

My kids all tested negative in the tTG IgA test in spite of the fact that 2/3 of them had some obvious symptoms of celiac or NCGI. Since that was the only test my GP would do, I made our household gluten-free and lo and behold the kids got better. What a "coincidence" eh?  LOL My doctor advised not making them gluten-free but it doesn't hurt them in any, and it appears to help.

 

During the teenage years, many celiacs lose some of their symptoms. I know mine became much less noticeable at that time. It's good that you are checking them. If all tests are negative, you should retest every few years because celiac can appear at any time in those with a family history... and those without.

 

Best wishes.

mommy2krj Explorer
mommy2krj
Posted
  • Author

My kids all tested negative in the tTG IgA test in spite of the fact that 2/3 of them had some obvious symptoms of celiac or NCGI. Since that was the only test my GP would do, I made our household gluten-free and lo and behold the kids got better. What a "coincidence" eh?  LOL My doctor advised not making them gluten-free but it doesn't hurt them in any, and it appears to help.

 

During the teenage years, many celiacs lose some of their symptoms. I know mine became much less noticeable at that time. It's good that you are checking them. If all tests are negative, you should retest every few years because celiac can appear at any time in those with a family history... and those without.

 

Best wishes.

Thanks for the well wishes! :)

I still don't understand why a doctor would advise against people going gluten free (unless there is an ongoing problem and they're trying to test for it). So long as the people going gluten free are doing a whole foods way of doing it and not just swapping out junk for junk. I don't think many doctors really have a clue when it comes to nutrition and such.

Anyway...I'm bringing those results with me to the GI so she can tell me they are negative. I don't trust that the pediatrician truly knows anything about it.

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

Celiac.com Sponsor (A8-M):


Archived

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

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

  • Member Statistics

    • Total Members
      134,082
    • Most Online (within 30 mins)
      10,442
    Joe B
    Newest Member
    Joe B
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.7k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • Aretaeus Cappadocia
      Edy's and Dreyer's ice cream

      By Aretaeus Cappadocia · Posted

      Sigh. I posted this yesterday based on the Safeway website. I went back again today to their website to double check. On the page where they are selling Vanilla Bean flavor, it has a distinct Certified Gluten Free label. Other flavors on the Safeway website didn't have the gluten-free statement. Today I went into the store. None of the flavors I looked at, including Vanilla Bean, have a Gluten Free statement. Is it safe? Who knows. The ingredients are either safe or nearly safe (some have "natural flavor"). There are warnings about "contains milk and soy" but not about wheat - this implies they are safe, but again, who knows. On the other hand, every flavor I checked of their Slow Churn line of ice creams has wheat as an ingredient. 100% not safe.
    • knitty kitty
      Edy's and Dreyer's ice cream

      By knitty kitty · Posted

      Do keep in mind that many of the newly diagnosed have lactose intolerance.  This is because the villi lining the intestinal tract are damaged, and can no longer make the enzyme lactAse which breaks down the milk sugar lactOse.  When the villi grow back (six months to two years), they can again produce the enzyme lactAse, and lactose intolerance is resolved.  However, some people (both those with and without Celiac Disease) are genetically programmed to stop producing lactase as they age.   Do be aware that many processed foods, including ice cream, use Microbial Transglutaminase, a food additive commonly called "meat glue," used to enhance texture and flavor.  This microbial transglutaminase has the same immunogenicity as tissue transglutaminase which the body produces in response to gluten in people with Celiac Disease.  Tissue Transglutaminase (tTg IgA) is measured to diagnose Celiac Disease in blood tests.  Microbial Transglutaminase acts the same as Tissue Transglutaminase, causing increased intestinal permeability and inflammation.   New findings show that microbial transglutaminase may be able to trigger Celiac Disease and other autoimmune and neurodegenerative diseases.   Microbial Transglutaminase is not required to be listed on ingredients labels as it's considered a processing aid, not an ingredient in the U.S.  Microbial Transglutaminase has been GRAS for many years, but that GRAS standing is being questioned more and more as the immunogenicity of microbial transglutaminase is being discovered. Interesting Reading:  Microbial Transglutaminase Is a Very Frequently Used Food Additive and Is a Potential Inducer of Autoimmune/Neurodegenerative Diseases https://pmc.ncbi.nlm.nih.gov/articles/PMC8537092/
    • Aretaeus Cappadocia
      Edy's and Dreyer's ice cream

      By Aretaeus Cappadocia · Posted

      There is a 10 year old post in this forum on Edy's and Dreyer's ice cream. The information is somewhat outdated and the thread is closed to further comment, so here is a new one. Edy's And Dreyer's Grand Vanilla Bean Ice Cream - 1.5 Quart is labeled "Gluten Free". This is a different answer than years gone by. I don't know the answer for any other flavor at this moment. On 1 May, 2026, Edy's website says: "As a general rule, the gluten in Edy's and Dreyer's® frozen dessert products is present only in the added bakery products, such as cookies, cake or brownies. We always label the eight major food allergens on our package by their common name. We recommend to always check the label for the most current information before purchasing and/or consuming a product. The exception to this rule is our Slow Churned French Silk frozen dairy dessert, which contains gluten in the natural flavors." https://www.icecream.com/us/en/brands/edys-and-dreyers/faq It seems that Edy's and Dreyer's are more celiac-friendly than they were 10 years ago. Once I found enough information to make today's buying decision, I stopped researching.
    • Aretaeus Cappadocia
      EDG 3 years ago fine, now it shows focal villous blunting,

      By Aretaeus Cappadocia · Posted

      probably not your situation @Mimiof2, but allow me to add one more to @trents list of celiac-mimics: "olmesartan-induced sprue-like enteropathy"  
    • knitty kitty
      Terrible Neurological Symptoms

      By knitty kitty · Posted

      My dad had an Abdominal Aortic Aneurysm.  Fortunately, it was discovered during an exam.  The doctor could feel my dad's heart beating in his stomach/abdomen.  The aneurysm burst when the doctor first touched it in surgery.  Since he was already hooked up to the bypass machine, my dad survived ten more years.  Close call! Triple A's can press on the nerves in the spinal cord causing leg pain.  I'm wondering if bowing the head might have increased the pressure on an aneurysm and then the nerves.   https://gulfcoastsurgeons.com/understanding-abdominal-aortic-aneurysm-symptoms-and-causes/ Abdominal Aortic Aneurysm Presenting as a Claudication https://pmc.ncbi.nlm.nih.gov/articles/PMC4040638/
×
×
  • Create New...