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

New Celiac Diagnosis

lolabelle

Recommended Posts

lolabelle Newbie
lolabelle
Posted

Hi! I am new on here, and was looking for opinions on test results. My daughter is 4 and just had a whole panel of blood work done after having blood in stools, constipation and being anemic.  They checked for celiac along with a few other things. Thanks for the help as we wait to hear from the doctor :)

TTG IGA   0 - 19 CU   3710   ENDOMYSIAL AB  <1:10  1:640            IGA   25.0-152.0    123

 

 

   

 

 

 

 

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

Celiac.com Sponsor (A8-M):


nvsmom Community Regular
nvsmom
Posted

Welcome to the board. :)

I'm afraid that your daughter's tests look quite positive for celiac disease. :(

The tTG IgA is the tissue transglutaminase immunoglobulin A test. It's the most common cs test.  The normal range is 0-19, and it appears her result was 3710.  Very high!

The ENDOMYSIAL AB (antibodies) is the EMA IgA test. It tends to detect more advanced damage. It is rare to have a positive EMA IgA without already having a pretty high tTG IgA (they are very similar tests).  The EMA IgA is done as a titre. The sample keeps being diluted until the EMA IgA is no longer detected. 1:10 is normal in your lab, sometimes 1:20 is normal. 1:40 or 1:80 is the start of positive, 1:160 is not unusual. A few people get a 1:320.  I'm afraid a 1:640 is very very high and I only see that a few times per year.

The EMA IgA is highly specific to celiac disease. Your chances of having a positive test and not having celiac disease is less than 2%. The ttG IgA is a very good test too with a false positive rate of about 5%. I'm afraid there is little doubt, even without doing an endoscopic biopsy, that she has celiac disease.  I was positive in those two tests too, although not as high as your daughter, and we skipped the biopsy because we were so sure that it was celiac disease.

IgA is just a control test to measure immunoglobulin A - a control test.  About 5% of celiacs are deficient in IgA which would cause false negative test results in the actual celiac tests (tTG IgA and EMA IgA). She is within normal range and her celiac disease test results were accurate.

This report by the World Gastroenterology Organisation has more information on the tests: Open Original Shared Link

When you see the doctor he'll probably want to do an endoscopic biopsy on her to confirm the diagnosis. If so, she'll need to eat gluten in the 2-4 weeks prior to the test so you may not want to start the gluten-free diet yet. If you choose to have it done, make sure at LEAST 6 samples are taken as damage can be patchy.

You may want to have her nutrients checked too.  Celiacs are often low in B12, A, D, Mg, Ca, K, Fe ferritin, Zn, and Cu. Celiacs are more likely to develop type 1 diabetes and hashimoto's so you'll want to keep an eye out for that in future years.

And my final bad new, the rest of the family will need to be tested for celiac disease, and retested every 2 years if they continue to eat any gluten.  First deghree family members have somewhere between a 1 in 10 to 1 in 22 chance of developing celiac disease.

Hang in there mom. It's great that you caught this at such a young age.  You've saved her many complications and years of discomfort. It's not great to have, but now you know and can make her well. :) 

lolabelle Newbie
lolabelle
Posted
  • Author

Thank you so much for the response and the great info! I thought by the numbers and my research it looked as though she did too. They did mention doing an endoscopy, which we haven't decided on yet. She has a twin brother so we will definitely get him checked and ourselves. She is low in Ferritin 2.0 and iron deficient. They ran a metabolic panel, but didn't check nutrients so I will ask to have that done.  Very glad we caught it and can make the needed changes! Thanks  so much :)

nvsmom Community Regular
nvsmom
Posted

Good luck with your son.  I hope he is in perfect health.

Let us know how it all goes too.  :)

Archived

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

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


  • Member Statistics

    • Total Members
      131,899
    • Most Online (within 30 mins)
      7,748
    dcarter1682
    Newest Member
    dcarter1682
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • trents
      New (possible) celiac diagnosis

      By trents · Posted

      Welcome to the forum, @Judy M! Yes, he definitely needs to continue eating gluten until the day of the endoscopy. Not sure why the GI doc advised otherwise but it was a bum steer.  Celiac disease has a genetic component but also an "epigenetic" component. Let me explain. There are two main genes that have been identified as providing the "potential" to develop "active" celiac disease. We know them as HLA-DQ 2.5 (aka, HLA-DQ 2) and HLA-DQ8. Without one or both of these genes it is highly unlikely that a person will develop celiac disease at some point in their life. About 40% of the general population carry one or both of these two genes but only about 1% of the population develops active celiac disease. Thus, possessing the genetic potential for celiac disease is far less than deterministic. Most who have the potential never develop the disease. In order for the potential to develop celiac disease to turn into active celiac disease, some triggering stress event or events must "turn on" the latent genes. This triggering stress event can be a viral infection, some other medical event, or even prolonged psychological/emotional trauma. This part of the equation is difficult to quantify but this is the epigenetic dimension of the disease. Epigenetics has to do with the influence that environmental factors and things not coded into the DNA itself have to do in "turning on" susceptible genes. And this is why celiac disease can develop at any stage of life. Celiac disease is an autoimmune condition (not a food allergy) that causes inflammation in the lining of the small bowel. The ingestion of gluten causes the body to attack the cells of this lining which, over time, damages and destroys them, impairing the body's ability to absorb nutrients since this is the part of the intestinal track responsible for nutrient absorption and also causing numerous other food sensitivities such as dairy/lactose intolerance. There is another gluten-related disorder known as NCGS (Non Celiac Gluten Sensitivity or just, "gluten sensitivity") that is not autoimmune in nature and which does not damage the small bowel lining. However, NCGS shares many of the same symptoms with celiac disease such as gas, bloating, and diarrhea. It is also much more common than celiac disease. There is no test for NCGS so, because they share common symptoms, celiac disease must first be ruled out through formal testing for celiac disease. This is where your husband is right now. It should also be said that some experts believe NCGS can transition into celiac disease. I hope this helps.
    • Judy M
      New (possible) celiac diagnosis

      By Judy M · Posted

      My husband has had lactose intolerance for his entire life (he's 68 yo).  So, he's used to gastro issues. But for the past year he's been experiencing bouts of diarrhea that last for hours.  He finally went to his gastroenterologist ... several blood tests ruled out other maladies, but his celiac results are suspect.  He is scheduled for an endoscopy and colonoscopy in 2 weeks.  He was told to eat "gluten free" until the tests!!!  I, and he know nothing about this "diet" much less how to navigate his in daily life!! The more I read, the more my head is spinning.  So I guess I have 2 questions.  First, I read on this website that prior to testing, eat gluten so as not to compromise the testing!  Is that true? His primary care doctor told him to eat gluten free prior to testing!  I'm so confused.  Second, I read that celiac disease is genetic or caused by other ways such as surgery.  No family history but Gall bladder removal 7 years ago, maybe?  But how in God's name does something like this crop up and now is so awful he can't go a day without worrying.  He still works in Manhattan and considers himself lucky if he gets there without incident!  Advice from those who know would be appreciated!!!!!!!!!!!!
    • Scott Adams
      Patiently Waiting to See Results

      By Scott Adams · Posted

      You've done an excellent job of meticulously tracking the rash's unpredictable behavior, from its symmetrical spread and stubborn scabbing to the potential triggers you've identified, like the asthma medication and dietary changes. It's particularly telling that the rash seems to flare with wheat consumption, even though your initial blood test was negative—as you've noted, being off wheat before a test can sometimes lead to a false negative, and your description of the other symptoms—joint pain, brain fog, stomach issues—is very compelling. The symmetry of the rash is a crucial detail that often points toward an internal cause, such as an autoimmune response or a systemic reaction, rather than just an external irritant like a plant or mites. I hope your doctor tomorrow takes the time to listen carefully to all of this evidence you've gathered and works with you to find some real answers and effective relief. Don't be discouraged if the rash fluctuates; your detailed history is the most valuable tool you have for getting an accurate diagnosis.
    • Scott Adams
      Gluten free beer ?

      By Scott Adams · Posted

      In this case the beer is excellent, but for those who are super sensitive it is likely better to go the full gluten-free beer route. Lakefront Brewery (another sponsor!) has good gluten-free beer made without any gluten ingredients.
    • trents
      Patiently Waiting to See Results

      By trents · Posted

      Welcome to the forum, @catsrlife! Celiac disease can be diagnosed without committing to a full-blown "gluten challenge" if you get a skin biopsy done during an active outbreak of dermatitis herpetiformis, assuming that is what is causing the rash. There is no other known cause for dermatitis herpetiformis so it is definitive for celiac disease. You would need to find a dermatologist who is familiar with doing the biopsy correctly, however. The samples need to be taken next to the pustules, not on them . . . a mistake many dermatologists make when biopsying for dermatitis herpetiformis. 
×
×
  • 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.