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 Diagnosis Help

Mamatofour

Recommended Posts

Mamatofour Newbie
Mamatofour
Posted

Hello,

I just got the results of my four year old son's lab work. We had them done because he is constantly complaining that his tummy hurts, near constant loose stools with a sandy texture, constant itching, trouble sleeping etc.

I do not have the paperwork in hand yet, but I was told over the phone to schedule an appointment with the Gastroenterologist because his tissue transglutaminase IGA was negative but the IGG was positive. I was told his was 33.30 and it needed to be below 19.99. Could this still be celiacs or a non-celiacs gluten sensitivity?

We have plenty of family history concerning auto-immune disorders, hubby and oldest son have type 1 diabetes, oldest don also has non-celiacs gluten sensitivity as well as low thyroid.

Thanks so much for any insight! :)

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

Celiac.com Sponsor (A8-M):


nvsmom Community Regular
nvsmom
Posted

A positive tissue transglutaminase is never caused by non-celiac gluten sensitivity I'm afraid.  The tTG IgA and tTG IgG indicate that the intestines are being attacked and damaged by the immune system.  Although it is usually the tTG IgA that is positive rather than the tTG IgG, it is still a highly specific test for celiac disease - especially when it is a fairly elevated result and not just a weak positive (like a 21).

Celiac is most commonly co-occurring with T1D and hypothyroidism.  With such a strong family history, I would have little doub that the positive result was from celiac disease.  Your child with NCGS should be retested for celiac disease if they are consuming any gluten.  Celiac can test negatively early in the disease and "change" into celiac disease as the disease progresses.  With celiac disease in the family, there is a good chance that NCGS is in fact celiac disease.  Your hubby and oldest son should be tested, and retested every 2 years from now on. Celiac can develop at anytime, and their risk of developing celiac disease has now jumped up to somewhere around 1 in 10 to 1 in 22.  :(

Do not start a gluten-free diet yet.  They may want to do more testing, and a gluten-free diet will cause false negatives. 

Here's some reading on the tests: Open Original Shared Link

Good luck with the gastro.  Let us know how it goes.

Mamatofour Newbie
Mamatofour
Posted
  • Author

Thank you so much for your response! We see the gastro next week. I will update after our appointment. It is hard for me to keep giving him gluten because I just want to help him stop hurting. but I know we have to finish the testing process first.

nvsmom Community Regular
nvsmom
Posted

:(  Understandable.  Perhaps give him most of his gluten later in the day so it doesn't impact his waking hours as much.

Mamatofour Newbie
Mamatofour
Posted
  • Author

We had our appointment with the gastro yesterday. She confirmed that the positive IGg was indicative of celiacs and suggested following up with a scope and biopsy. Hoping to hear from the scheduler soon. I will update with his results.

Thanks so much for your help!

nvsmom Community Regular
nvsmom
Posted

If he isn't doing well, let the office know because sometimes they'll bump the young kids up in the schedule by a few days or weeks.

Good luck. (hug)

Archived

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

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


  • Member Statistics

    • Total Members
      131,901
    • Most Online (within 30 mins)
      7,748
    tessycork47
    Newest Member
    tessycork47
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

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



  • Celiac.com Sponsor (A21):


  • 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.