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):

Child - 1st Blood Test

LisanJulia

Recommended Posts

LisanJulia Newbie
LisanJulia
Posted

New to the site! My daughter had on-going belly upsets and poops a lot, so I brought it up to her Dr. and asked if they would test her for gluten. She is 10 years old.

Here are her results:

Endomysial IGS                             positive

Endomysial IGA AB Titer              1:80  (ref -1:5)

Gliadin AB, IGG                             28 (ref -20)   

Gliadin AB, IGA                              100 (ref -20)

Transglutaminase IGA                  46 (ref -4)

Of course, they wanted to do a biopsy, but I am not sure that I want to put her through this procedure, despite the low-risk.

She ruptured her appendix in June (2015) and spent weeks in the hospital, as they treated the infection/inflammation. They delayed surgery until September (apparently the new way to treat a rupture in some cases). She was treated at Children's Hospital in Boston for the appendix and is being seen there for celiac.

The Dr. said she would prefer to do the biopsy, but considering her blood test, would feel comfortable dx her as Non-biopsied Celiac Disease.     The Dr. also mentioned that in European standards that considering her blood test results, they wouldn't even do a biopsy and would automatically dx her with celiac (if that matters).

Am I doing the right thing by not allowing a biopsy?? Dr. said we would redo blood test in 3 months, then 6 months, etc to make sure her blood test is declining. We just scheduled her 1st Celiac 101 class with the nutritionist.

My daughter went through so much with her appendix and I feel like she is just starting to be herself again, so prefer not to put her through anymore procedures, esp since the surgeon said that she has scar tissue and some inflammation will linger on for a bit.

We don't have any confirmed cases of Celiac in our family - that we know of.  I, however, suspect that my mom may have it, she was dx with Diverticulitis, but never tested for celiac. We do have some other food allergies (nephew: milk, soy, eggs), asthma (2-nephews), skin issues, not sure if they come into play.

Thanks for any insight.

Lisa

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

Celiac.com Sponsor (A8-M):


Irene Joanne Explorer
Irene Joanne
Posted

It depends how soon you could get her in for a biopsy. I know someone recently with a six year old that had positive blood work for celiac- this girl had levels in the 200 range and after two blood tests with the same resullts, the doctor said there was no need for the biopsy and she just went gluten free. 

Personally I would get it done if I could get in really soon- in Canada, it's free to go for a biopsy, but often kids have to wait for six months to get in for it. No way I would put a really sick child through eating gluten for another six months.... But then you have to be determined you will have her stick 100% to the diet for LIFE

mamapjama Newbie
mamapjama
Posted

The endoscopy is fairly easy and causes no pain before or after. My daughter said the worst part was the IV she in and out in 10 minutes and was out of recovery in 20 minutes. She had negative initial blood work but biopsy due to ongoing stomach pain and nausea for  6 months. Dr did not suspect celiac until biopsy confirmed it. He is now doing 4 more very specific tests (including gene testing) and we were told put her on a gluten free diet asap. I would do the procedure it will not be like her previous surgery at all and she should be fine.

southpaw13 Newbie
southpaw13
Posted

I was apprehensive about the EGD for our kid at first. Turns out, it was very easy for her, minimal recovery and no discomfort. For me, after the fact, it is 'good' to know the level of damage she had to her small bowel, as she was fairly asymptomatic when she was diagnosed-- just knowing what her insides looked like really drives home how important the gluten-free diet is for her. The biopsy def made things more real for us, and for those skeptics in the family.

An EGD is nothing like an appendectomy, for sure!

StephanieL Enthusiast
StephanieL
Posted

Do the biopsy ASAP and keep her ON gluten till it's done. You will always have lingering thoughts if you don't. Also if you are in Boston, one of the leading Celiac experts is there. He'll recommend the biopsy I'm 99% sure!

 

Archived

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

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

  • Member Statistics

    • Total Members
      134,077
    • Most Online (within 30 mins)
      10,442
    terrificterry
    Newest Member
    terrificterry
    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...