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

Suspecting Celiac In My Older Two As Well


FeedIndy

Recommended Posts

FeedIndy Contributor

We have had a lot of behavioral issues over the years that I never would have connected to a dietary issue, other than noticing it is worse when they have a lot of sugar. Recently, my two older DDs have been complaining off and on about stomach aches. They also seem to have a lot of gas. DD4 eats constantly and is at the top of her growth chart so I wouldn't have made the connection if it weren't for this forum. DD9 eats quite often too (we're big fans of grazing around here), but is fairly normal in weight and only slightly above board for height.

The behavior problems seem to be worse the last few months. Today it just hit me-two months ago I went gluten free while nursing DD1 so the whole house was gluten-lite. I cooked all our evening meals completely gluten free so it wouldn't be an issue. Is it possible that being gluten light could cause the gluten they are getting to show more obvious symptoms?

Then do I try the diet on them or have them tested? DDs official test was negative, but she's only 1. If I have the older girls tested they would be more likely to have positive results (if they are celiac) since they are older (4 & 9), right? Then we could definitively say that DD is celiac and skip the challenge my doc wants to do when she's 4.

Just thinking aloud here, mostly, but any thoughts or suggestions are appreciated!


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



Celiac.com Sponsor (A8-M):



celiacgirls Apprentice

I think I would test them just in case the test was positive but try the strict diet with them after the testing either way. The test could be negative even if gluten is the problem especially since they have been gluten lite. My 8 year old daughter's tests were always negative (except for Enterolab) but gluten is definitely a problem for her. I tested my older daughter and myself with Enterolab and after positive results, we went gluten free. My older daughter's behaviour was always an issue and that has completely gone away unless she accidently gets glutened or caseined. I didn't do the blood testing for her at the time because I wanted to try the diet to see if it improved her behaviour. My husband was disbelieving and I was afraid if her testing was negative, he would give me even more trouble about trying it. In hindsight, if her test had been positive, we would know for sure we are dealing with celiac and not just gluten intolerance. But then it would be on her insurance records and that might cause her some problems one day.

I do think going gluten lite might cause them to react more to gluten if they have a problem with it.

chrissy Collaborator

this is just my personal opinion---but i wouldn't put my kids gluten free without a positive diagnosis of celiac----unless there were very definite problems and i was desperate to try anything. i know that other's on here would be more willing to go ahead and try gluten free.

ACottrell Rookie

I really don't see the harm in trying it for a month or so and seeing if there is any difference. We've been on it for less than a week and my FTT baby has apparantly already put on weight! It just depends on how invasive you feel the tests are for that age. We're total softies and the bloodwork was all we could allow them to do to our son, lol. Granted, I'm all new to this, but what harm could a trial be?

  • 2 weeks later...
MomandDadtoOGS Newbie

I would personally have the testing done. I'd rather know for sure. The blood test really isn't that invasive and although endoscopy with biopsy is no picnic, if it can help prove one way or the other if your children have celiac, I'd do it. I didn't hesitate having it done when our ped. GI ordered it for my child's GERD. I'm so glad I did know b/c her GERD has resolved but we were able to 100% confirm celiac. If I didn't do it, our child would still be eating "regular" foods and not growing. As hard as this has been on us, it's also been a blessing to discover this now when she's 3 and not at 23 like my husband did. Heck, my FIL is 59 and just had a positive antibody test 2 weeks ago. Maybe my perspective is different b/c I'm going to be a nurse. I just like knowing things for sure and with medical tests to prove it.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,207
    • Most Online (within 30 mins)
      7,748

    WAB19
    Newest Member
    WAB19
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • 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
      NCGS does not cause damage to the small bowel villi so, if indeed you were not skimping on gluten when you had the antibody blood testing done, it is likely you have celiac disease.
    • Scott Adams
      I will assume you did the gluten challenge properly and were eating a lot of gluten daily for 6-8 weeks before your test, but if not, that could be the issue. You can still have celiac disease with negative blood test results, although it's not as common:  Clinical and genetic profile of patients with seronegative coeliac disease: the natural history and response to gluten-free diet: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5606118/  Seronegative Celiac Disease - A Challenging Case: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9441776/  Enteropathies with villous atrophy but negative coeliac serology in adults: current issues: https://pubmed.ncbi.nlm.nih.gov/34764141/  Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS.
    • Xravith
      I'm very confused... My blood test came out negative, I checked all antibodies. I suppose my Total IgA levels are normal (132 mg/dl), so the test should be reliable. Still, I'm not relieved as I can't tolerate even a single biscuit. I need to talk to my doctor about whether a duodenal biopsy is necessary. But it is really possible to have intestinal damage despite having a seronegative results? I have really strong symptoms, and I don't want to keep skipping university lectures or being bedridden at home.
    • Scott Adams
      They may want to also eliminate other possible causes for your symptoms/issues and are doing additional tests.  Here is info about blood tests for celiac disease--if positive an endoscopy where biopsies of your intestinal villi are taken to confirm is the typical follow up.    
    • Scott Adams
      In the Europe the new protocol for making a celiac disease diagnosis in children is if their tTg-IgA (tissue transglutaminase IgA) levels are 10 times or above the positive level for celiac disease--and you are above that level. According to the latest research, if the blood test results are at certain high levels that range between 5-10 times the reference range for a positive celiac disease diagnosis, it may not be necessary to confirm the results using an endoscopy/biopsy: Blood Test Alone Can Diagnose Celiac Disease in Most Children and Adults TGA-IgA at or Above Five Times Normal Limit in Kids Indicates Celiac Disease in Nearly All Cases No More Biopsies to Diagnose Celiac Disease in Children! May I ask why you've had so many past tTg-IgA tests done, and many of them seem to have been done 3 times during short time intervals?    
×
×
  • 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.