Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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

Should I Get Them Tested?


Carin3

Recommended Posts

Carin3 Rookie

Hi-

A little background on me. I have hardly any of the GI symptoms of celiac but most of the non-GI symptoms of celiac. I used to poop like 4 or 5 times a day. They were normal but when I had to go I had to go(my youngest and my son seem to be that way-see below) I was diagnosed with Celiac about 2 months ago. My testing was done a little backwards. I had a endoscopy/colonoscopy done due to chronic anemia (and iron pills weren't helping). After the procedures the doc said everything looked great but when I went in for my follow up two weeks later they said the biopsy showed celiac. The GI doc wasn't convinced and did the celiac blood work and also sent my biopsy to be looked at by a doctor and Yale. Well my blood work came back negative but the doctor at Yale also said Celiac. I have three kids ages 3(girl),4(boy),6(girl). My 4 year old has had stomach problems since 15 months old-we took him to a pediatric GI for poor growth and general fussiness (I just knew something wasn't right). They did a endoscopy and found a large,nasty old stomach ulcer along with chronic esophagitis/reflux. They did do biopsies for celiac and they were negative. About a year later (he was still on ulcer and reflux meds due to complaints) he had another endoscopy that found a duodenol ulcer and duodenitis (while on meds). We continued with meds and got a second opinion. A couple months after that endoscopy they did another one which showed duodenitis. Since this summer he has been doing pretty good but over the last 2 months has started complaining of his belly (but not where you have ulcer pain), chest, and throat and the biggest problem is he is pooping in his underwear all the time (he is 4 1/2). Most of his endoscopies they did biopsy for celiac but I'm not sure about the one a year ago. Does this sound familiar to anyone? Also, my youngest seems to poop 2,3,4 times a day on the potty (she so reminds me of me preGF). How accurate are the blood test of children of this age? Is it worth getting them tested? Whats the chances of one of them having it? My poor son has been through so much all ready and I figured he didnt have it b/c I didn't think his issues were associated wit celiac but then I read some and just don't know. All this is soooo new to me and I am still learning. Any help/thoughts would be appreciated!!Thanks so much and sorry so long!


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



Celiac.com Sponsor (A8-M):



Wolicki Enthusiast

Testing for children is notoriously unreliable. Why not put the whole family on a gluten free trial to see if they have a positive dietary response? It's non invasive, mostly non traumatic (life without Goldfish crackers can be considered traumatic to some kids :P ) and may make a HUGE difference in their health. Give it a try :)

lovegrov Collaborator

Actually, I think these kids are old enough to at least do the blood test. Celiac experts recommend that ALL first-degree relatives be tested.

Trying the gluten-free diet with your kids isn't a bad idea, either, but if they don't need to be on it, I wouldn't put my child through it.

richard

nmlove Contributor

I agree with Richard. If the test is positive, great (well, not great but at least you know). If negative you can still do the diet to see if it affects them. My kids' pediatric GI doc told us blood test, then biopsy (we didn't have to biopsy my 2nd). If both were negative (they weren't), they'd do genetic testing to rule celiac out. Regardless of the genetic results, they would have had to go gluten-free anyway because something was making their blood test positive.

By the way, my oldest was a big pooper - from birth on. Prior to diagnosis, however, there was a change in the type of poop but frequency was still high - maybe a tad higher when he was sick - just like he was as a baby on breastmilk alone. So there's a chance that's normal for your daughter. Testing is a personal decision but for me it is nice having the diagnosis because my sons are small. It's easy to control everything right now but as they get older, it will be less so. If they didn't have to be gluten-free, then as a parent you wouldn't worry about them going over to a friend's house or out to eat or a trip to Grandma's. I have a hard time just with play dates sometimes! Plus, I don't know about you but I sure am not that old that I don't remember what it felt like to think that I'd never get old, get sick, etc. There's a chance you'll deal with some food rebellion (maybe, maybe not) but I think it far less likely to be an issue if there's no wishy-washiness about it. Anyway, just my two cents.

Archived

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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - Wheatwacked replied to disneyfamilyfive's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      Test result insight

    2. - disneyfamilyfive replied to disneyfamilyfive's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      Test result insight

    3. - Scott Adams replied to disneyfamilyfive's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      Test result insight

    4. - disneyfamilyfive posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      Test result insight

    5. - Sicilygirl posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      0

      fed up italian


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      126,336
    • Most Online (within 30 mins)
      7,748

    bFAD the farmer Ron
    Newest Member
    bFAD the farmer Ron
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      120.9k
    • Total Posts
      69.3k

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Wheatwacked
      Given your symptoms and family history and your low gluten consumption before the blood test, eventually you will be diagnosed, but it may take years.  Ask your doctor about nutrition deficiencies due to malabsorption.  Vitamin D deficiency is almost ubiquitous. Unless your doctor has an answer to your health issues, once you've pursued a diagnosis to your satisfaction I would suggest a trial period of gluten free.  In the meatime,  Mayo Clinic research indicates a first degree relative of a diagnosed Celiac is 42% likely to also be Celiac. Dermatitis herpetiformis causes itchy bumps and burning blisters as a result of a gluten sensitivity that makes your immune system overreact.  Are You Confused About Your Celiac Disease Lab Results?
    • disneyfamilyfive
      Thank you for the article Scott. It was very informative.  I didn’t realize I should have been eating a certain amount of gluten prior to the test.  I only eat bread maybe 1x a week, don’t eat cereal.  Pasta occasionally.  I’m sure there is gluten in nearly everything, so I’ve had gluten but no idea how much, but definitely not slices of bread. Not sure how much or how little that could affect my results.  My doctor didn’t mention anything about eating more gluten or eating bread. 
    • Scott Adams
      It sounds like you're navigating a lot right now, and it’s good that you’re being proactive about your health given your family history and symptoms. Based on the results you shared, the elevated IgA Gliadin and IgG Gliadin antibody levels could indicate an immune response to gluten, which may suggest celiac disease or gluten sensitivity. However, your tissue transglutaminase IgG (tTG-IgG) result is within the normal range, and your total IgA level is sufficient, meaning the test was likely accurate. While these results might point towards celiac disease, the diagnosis often requires further interpretation by your doctor, especially in light of your symptoms and family history. Your doctor may recommend an endoscopy with a biopsy to confirm the diagnosis, as blood tests alone are not always definitive. In the meantime, you might want to avoid making dietary changes until you discuss the results with your healthcare provider, as going gluten-free before further testing can interfere with an accurate diagnosis. This article might be helpful. It breaks down each type of test, and what a positive results means in terms of the probability that you might have celiac disease. This section covers your two positive results: DGP-IgA and DGP-IgG (Deamidated Gliadin Peptide)    
    • disneyfamilyfive
      Hello, I had celiac tests run a week ago and my doctor still has not viewed my results (I saw them on mychart 4 days ago), hoping to get a little insight.  Background: my grandma had been diagnosed celiac and my dad was recently diagnosed with a form of celiac (rash but no gi symptoms). I have been battling anemia and have some gi symptoms similar to celiac symptoms.  My test results came back as the following: TISSUE TRANSGLUTAMINASE IGG value 5 Normal <6 U/ml Iga - 287 Normal value: 70 - 400 mg/dL Iga, Gliadin - 119 Normal value: <20 Units Igg, Gliadin -75 Normal value: <20 UNITS Thank you in advance for your thoughts, experience or insight.    
    • Sicilygirl
      I am looking for words of encouragement because I have just had enough with this celiac diagnosis. I recently got diagnosed in October this year and its been hell let me tell you. Fist of all my doctor did not want to do the test saying that I was not Celiac because I did not have blood in my stool. Really??? I thankfully insisted that he do the blood work test just to make sure., since I was sick while in italy after eating both pasta and pizza and I knew something was wrong. I exhibited all the signs of gluten sensitivity, bloating and bad stomach pain which I never had ever after eating gluten.  After a week of waiting patiently for the test result it showed positive. I was both happy and floored at the same time. It has been an emotional roller coaster. Having to now work hard  to read labels constantly making sure they don't add gluten EVERYWHERE!! buying some comfort expensive gluten free foods to somehow make me feel like I am a normal person again. Hiring a dietician to put me on a diet to get my nutrients needed and to fix my villi that is destroyed. I feel sad, angry, depressed and why me?? is it an italian thing? I do not know. Anyways any feedback would be helpful. I am still extremely tired and have bowel symptoms and brain fog when do these go away?
×
×
  • Create New...