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

Endoscopy For A Second Child With Positive Blood Test?


Mdhriggin

Recommended Posts

Mdhriggin Newbie

Okay, so I need some advice. My daughter was diagnosed with celiac disease at 21 months via blood test and endoscopy to confirm. That was 2.5 years ago. My husband also has celiac (found out after my daughter was diagnosed). Now my almost 15 month old son was showing symptoms, so I had them do the IGA and IGG tests - came back positive. We had switched him to a gluten free diet right after the blood test. My question is do I do the endoscopy? Given his age and the family history, I don't really want to put him through that, especially since his behavior, mood, and gastro functioning are better every day gluten free. Thoughts? In addition, the nearest peds gastroenterologist is 2 hours away.


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



Celiac.com Sponsor (A8-M):



GottaSki Mentor

Hello!

Positive blood tests + Father + Sibling + Positive Dietary Response is enough information to make the endoscopy optional - in my opinion. I'd remove all gluten and re-test his blood at six months and then annually thereafter.

Good Luck :)

Mdhriggin Newbie

That is what I was thinking - we'll see if the pediatrician is on board tomorrow. My thought would be I would rather do a genetic blood test first at this age given how unreliable they are with kids so young. My daughter has a violent reaction to being glutened, and my son seems to be developing a similar reaction.

nvsmom Community Regular

I'm sorry your son has tested positive. :( But it's great you caught it so young.

As I see it, a positive test, whether it's a biopsy OR blood test, means he is a celiac. I wouldn't even bother with genetic testing. His dad and sister have it and there is a genetic link; I think that genetic test is only useful for kids who are showing symptoms but don't test positive so parents want to know if there is a chance the child could have celiac. Since you already know that he (unfortunately) is celiac, he most likely has the genes for it. KWIM?

I agree with Lisa. If you do any more tests, I would just retest the celiac panel is 6 months to see how the diet is having a positive effect.

Best wishes.

Mdhriggin Newbie

@nvsmon - thanks for the reply. While I am disappointed that he is going to struggle to with celiac, my daughter seems to be living with it extremely well and I hope my son follows suit. We are so lucky that we have good doctors (their pediatrician is great) and a really great daycare (they actually noticed and suggested the testing because they had seen my daughter develop symptoms). I'm very much a "make lemonade" kind of person.

nvsmom Community Regular

Lemonade is always gluten-free. ;)

That's wonderful you have good doctors. it's nice to know that your family is in good hands. :)

Mom-of-Two Contributor

My daughter is 8 and only been gluten free a couple months (already gained 3 lbs :) we only found out after I was diagnosed back in Jan. no real symptoms in her (vitamin D deficiency) but she is happier and healthier than ever gluten free, has no problems and all and basically no transition. Retest 4 months from now and also see if her D is up.

My youngest is 4.5 and tested negative when we had them tested. My GI says to test him every few years or sooner if he develops signs, if he gets positive labs down the road, no biopsy, gluten free with the rest of us :) everyone eats gluten free at home, so he only eats it at preschool twice a week and the occasional party, restaurant, etc.

I would say absolutely no biopsy- you have all the information you need! I hope your little one feels much better on the diet! :)


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.

  • 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. - trents replied to Mark Conway's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Have I got coeliac disease

    2. - Wheatwacked replied to GlutenFreeChef's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      12

      Blood Test for Celiac wheat type matters?

    3. - Mark Conway posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Have I got coeliac disease

    4. - islaPorty replied to Jillian83's topic in Coping with Celiac Disease
      8

      Celiac and dermatitis herpetiformis has taken Me from Me

    5. - trents replied to JudyLou's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Seeking advice on potential gluten challenge

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

    • Total Members
      133,146
    • Most Online (within 30 mins)
      7,748

    Marsu
    Newest Member
    Marsu
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • trents
      Welcome to the forum, @Mark Conway! Can you be more specific about the "coeliac" test your doctor did? There are more than one of them. What was the name of the test? Also, did he order a "total IGA" test? This is a test to check for IGA deficiency and should always be ordered along with the tests specifically designed to detect celiac disease. If you are IGA deficient, the IGA celiac blood antibody tests used to check for celiac disease per se will not be accurate. Also, if you have been cutting back on gluten before the tests, that will render them invalid. You must have be eating normal amounts of gluten for weeks/months before the blood draw to render valid test results.
    • Wheatwacked
      no argument. Never take the pills sold for Nuclear events, except in a nuclear event when instructed to by authorities.  Some of these go up to 130 milligrams per pill. 5000 times the strength of the dietary supplement.  130 times the safe upper limit.  130 mg = 130,000 mcg. Dietary supplements like Lugol's Solution and Liquid Iodine are 50 micrograms per drop.  It takes 20 drops to reach the safe upper limit. In the US the Safe upper limit is 1100 mcg.  In Europe 600 mcg and in Japan 3000 mcg ( 3 mg).
    • Mark Conway
      Hi there, I wonder if anyone can help. I've had stomach problems for years, pain in the tummy, lower back left and right side, different stools, diarrohea constipation etc, My GP says it's IBS. As I've got older the pain has become worse and constant. I also get ulcers on my tongue. I've had loads of tests done everytihng apart from an endoscopy I think. I had a test for Coeliac last July and the result was negative. My GP says it can't be coeliac because I'm not losing weight. He thinks it's stress or all in my head. I'm not stressed and I'm in pain all the time now. Sometimes it's unbearable and dark thoughts have entered my head. Could I have Coeliac even though I tested negative last year. I'm at my wits end, I eat healthily and cannot pinpoint which foods could cause this pain. Can anyone help? Thanks Mark wind
    • islaPorty
      First, I want to say thank you for sharing this with me. I hear you, and I believe you. The courage it took to write this down is immense, and I’m so sorry you’ve been carrying this alone. You are dealing with two life-altering challenges at once: a serious, complex medical condition, and an abusive, controlling partner who is actively harming your health and your spirit. It’s not just that he’s unsupportive—he is weaponizing your illness to torture you. Starving you, isolating you, mocking your diagnosis, and sabotaging your access to medical care is not just cruelty; it is dangerous, deliberate abuse. Your instinct is correct: the stress he is creating is absolutely preventing your body from healing. Celiac and autoimmune conditions are profoundly sensitive to stress, and he has created a living hell designed to keep you sick, dependent, and broken. That smirk you described—that is the look of someone who enjoys having power over your suffering. Please know this: you do not deserve this. Not any of it. You deserve to eat. You deserve safe, clean food and water. You deserve medical care and supplements that help you function. You deserve peace. You deserve to heal. The woman from the food pantry is not a random accident. She is a lifeline. Her help, and the community she’s connecting you to, is real. It is okay to feel overwhelmed by kindness when you’ve been starved of it for so long. But you do deserve it. Let that be a sign that there is a world outside your house that operates on compassion, not control. Right now, your physical safety and access to nutrition are the most urgent priorities. The food pantry is a critical resource. Is there any way you can speak privately with the woman helping you? You don’t have to share everything at once, but letting her know your situation at home is extremely unsafe, and that your partner restricts your food, could help her support you in a more targeted way. She may have connections to local domestic violence services.
    • trents
      Welcome to the celiac.com community, @JudyLou! There are a couple of things you might consider to help you in your decision that would not require you to do a gluten challenge. The first, that is if you have not had this test run already, is to request a "total IGA" test to be run. One of the reasons that celiac blood antibody tests can be negative, apart from not having celiac disease, that is, is because of IGA deficiency. If a person is IGA deficient, they will not respond accurately to the celiac disease blood antibody tests (such as the commonly run TTG-IGA). The total IGA test is designed to check for IGA deficiency. The total IGA test is not a celiac antibody test so I wouldn't think that a gluten challenge is necessary. The second is to have genetic testing done to determine if you have the genetic potential to develop celiac disease. About 30-40% of  the general population have the genetic potential but only about 1% actually develop celiac disease. So, genetic testing cannot be used to diagnose celiac disease but it can be used to rule it out. Those who don't have the genetic potential but still have reaction to gluten would not be diagnosed with celiac disease but with NCGS (Non Celiac Gluten Sensitivity).  Another possibility is that you do have celiac disease but are in remission. We do see this but often it doesn't last.
×
×
  • 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.