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

Need Advice For Screening 18-Month Old

valeriev

Recommended Posts

valeriev Newbie
valeriev
Posted

Hi, I'm new here, so thanks in advance for your help. My husband has celiac (manifests as dermatitis herpetiformis) and our son, who DOES eat gluten, is almost 18 months old. Unfortunately, he has been at the same weight for the last six months. As an infant he was in the 80th percentile in height at 75th in weight, but those numbers have been steadily decreasing, and based on the home weigh-in we conducted I'm sure that at his next checkup he's probably going to be below the 10th percentile in weight. However, other than his failure to gain weight, he is asymptomatic--he has no diarrhea or constipation, and he is a very active, social and happy child with a good appetite.

We are determined to have our son tested for celiac as soon as possible. I have been informing myself about the antibody and genetic tests, but the amount of information is a little overwhelming, and at the same time unhelpful! My questions boil down to these: (1) Can/Should we get these tests done through our pediatrician, who seems well-intentioned by not particularly informed about celiac, or do we need to take him to a pediatric gastroenterologist for these tests? (2) How accurate are the antibody tests on an 18-month old? (3) I have read that not all laboratories are created equal in terms of celiac testing. How do we make sure that our son's sample is sent to a lab that is most thorough?

Thanks in advance for your insights, folks!

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

Celiac.com Sponsor (A8-M):


lillysmama08 Newbie
lillysmama08
Posted

Hi, I'm new here, so thanks in advance for your help. My husband has celiac (manifests as dermatitis herpetiformis) and our son, who DOES eat gluten, is almost 18 months old. Unfortunately, he has been at the same weight for the last six months. As an infant he was in the 80th percentile in height at 75th in weight, but those numbers have been steadily decreasing, and based on the home weigh-in we conducted I'm sure that at his next checkup he's probably going to be below the 10th percentile in weight. However, other than his failure to gain weight, he is asymptomatic--he has no diarrhea or constipation, and he is a very active, social and happy child with a good appetite.

We are determined to have our son tested for celiac as soon as possible. I have been informing myself about the antibody and genetic tests, but the amount of information is a little overwhelming, and at the same time unhelpful! My questions boil down to these: (1) Can/Should we get these tests done through our pediatrician, who seems well-intentioned by not particularly informed about celiac, or do we need to take him to a pediatric gastroenterologist for these tests? (2) How accurate are the antibody tests on an 18-month old? (3) I have read that not all laboratories are created equal in terms of celiac testing. How do we make sure that our son's sample is sent to a lab that is most thorough?

Thanks in advance for your insights, folks!

My daughter has celiac disease and we had her tested at 18 months. All I know is they tested her ttg levels which was part of what they called a "celiac panal" and her levels we 33 which is high. They then did a scope which should some damage to her intestine. They said that is the only way to be 100% sure. So then everyone in our family got tested and we found that the genetic test didnt test right. Also most insurance does not cover a genetic test but it does cover the celiac panal. Our pediatrician sent us to a specialist who ran the labs for us. Since she was diagnosed one year ago her ttg levels are now 2 and she has gained 6 pounds. So I guess if you want my opinion I would go to a specialist and get the test they suggest. I would say if there is a Children's hopsital around go to them I would think they would have the best labs possible. We live in Iowa and go to a place called Boys Town Pediatrics and they have been great about it! I know its overwhelming but I been through it so if you have any questions my email is superchic_02@hotmail.com. Good Luck!!

MaryannG Rookie
MaryannG
Posted

Hi, I'm new here, so thanks in advance for your help. My husband has celiac (manifests as dermatitis herpetiformis) and our son, who DOES eat gluten, is almost 18 months old. Unfortunately, he has been at the same weight for the last six months. As an infant he was in the 80th percentile in height at 75th in weight, but those numbers have been steadily decreasing, and based on the home weigh-in we conducted I'm sure that at his next checkup he's probably going to be below the 10th percentile in weight. However, other than his failure to gain weight, he is asymptomatic--he has no diarrhea or constipation, and he is a very active, social and happy child with a good appetite.

We are determined to have our son tested for celiac as soon as possible. I have been informing myself about the antibody and genetic tests, but the amount of information is a little overwhelming, and at the same time unhelpful! My questions boil down to these: (1) Can/Should we get these tests done through our pediatrician, who seems well-intentioned by not particularly informed about celiac, or do we need to take him to a pediatric gastroenterologist for these tests? (2) How accurate are the antibody tests on an 18-month old? (3) I have read that not all laboratories are created equal in terms of celiac testing. How do we make sure that our son's sample is sent to a lab that is most thorough?

Thanks in advance for your insights, folks!

MaryannG Rookie
MaryannG
Posted

I would go to a gastro. Most peds don't know much about celiac. In fact, when my daughter was first tested her first gastro read the results wrong, we went to another one because I didn't feel like I was gettin anywhere by just giving her plenty of fruits and veggies, so the second gastro caught the mistake. So not all gastros are even perfect! Even if she shows no signs, she will need to continue to get tested every few years, because this deisease can appear at any age. My daughter was diagnosed at 20 months, and in my opinion although it is very hard to tell such a young child that she can't eat something, it is much easier in the long run because all they know is gluten-free food. My daughter now at 3 asks if something is gluten-free and will say she can't eat it if its not. She has aquired the taste and my guess is she wouldn't even like regular food anymore! She even knows if the box or bag doesn't look like her typical food, she'll tell me she can't eat it. so diagnosing early was the best thing to happen to me in the long run!

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)

    • There are no registered users currently online

  • 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.