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

Help With Results...


Mom2-2girls

Recommended Posts

Mom2-2girls Rookie

Hello, My daughter is 2.5 and her big sister has Celiac (the only person we know of in our family).

She has had a couple of weird things happen.

1./ rectal prolapse several times over the last 8 months.

2./ Constipation since birth despite being breastfed exclusively for 8 months, and she still nurses.

3./ She has had ear pain, and loss of balance (were she just falls over). Going to ENT next week.

We were referred to Toronto's Sick Kids Hospital. They tested her for celiac and cystic fibrosis. Her results have come back negative (see below). I just feel like something isn't right. She has a HUGE HUGE belly but is just normal everywhere else - not skinny in the limbs. She seems really gassy too in comparison to my other daughter. She often gets dark circles.

Anyways that is just a bit of background. Wondering if anyone might have some thoughts on her results, as I know they can me inaccurate for a 2 year old.

FROM THE NURSE.

"The sweat chloride is negative (<10). Her vitamin D is low (68). She should take daily supplementation consisting of 600 IU daily. Her TTG is negative; IgG 1 and IgA 0.

I hope this helps. Her hemoglogin is ok, iron slightly low, 6, but her MCV is 84, so nothing to do right now about that. Her ESR is elevated at 21 (1-10), however, it does not indicate anything specific. It is an acute phase reactant, which means if she was getting over something, coming down with something, it would be reflective."

So what do we do going forward? Test her every year? I found it really hard to get her gluten into her everyday since we now have a gluten-free house. I wish they would do the gene test so we at least know if she is a carrier.

Thanks!


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



Celiac.com Sponsor (A8-M):



shadowicewolf Proficient

Kinda hard to know without knowing the ranges for those tests (ie: 0-19 being normal, 20-29 weak positive, 30+ positive is what mine was).

She could very well be NCGI (non-celiac gluten intolerence). It mimics many of the same issues as celiac, but without the antibodies and the damage.

mushroom Proficient

How much gluten was your daughter eating, and for how long? It sounds like she may not have been exposed to a lot of gluten in her life for such extreme reactions, even if her tests were negative. Did they run a total serum IgA on her? And if so, what were the results? The low D and iron, and the elevated inflammation (ESR) are telling.

Mom2-2girls Rookie

That was my feeling Mushroom. She has been living in a gluten-free house for 5 months now, but I did give her one serving of gluten a day, plus she had gluten when we went out. I still worried it was not enough though although the GI doctor said it just had to be a serving the size of her palm.

My older daugther was originally tested by a naturopath at 2.5 so perhaps I will try that and see what those tests say (different than what they do at the hospital). I will make sure to really gluten her up for 6 weeks?!

mushroom Proficient

With the potential gluten ataxia (balance problems, falling down) it may be that the celiac is manifesting more neurologically, too, if the ENT gives her the all-clear. Has she been having gluten all along or just for a pre-testing period since you say your are a gluten-light house. Did you ask the nurse about the total serum IgA? It would be a good idea to get a copy of her test results and keep your own file (I always recommend this); that way if you have to go to different doctors you always have her records with you.

Yes, I think a good six-week glutening, while it will be tough on her, will be long enough, and it doesn't have to be every meal.

GottaSki Mentor

I agree with Mushroom completely. Total Serum IgA is very important.

Symptoms along with first degree family and low nutrients is very telling.

No need to overdo during challenge - just be consistant.

Have you and Dad been tested?

Hang in there :)

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      130,127
    • Most Online (within 30 mins)
      7,748

    sue j
    Newest Member
    sue j
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.3k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Scott Adams
      I’m so sorry you’re going through this—it sounds like your body is sending a clear signal that gluten is a major trigger for your Hashimoto’s. The dramatic spike in your anti-TPO (from 50 to 799!) and the severe symptoms you’re experiencing suggest a strong immune reaction, even if celiac testing wasn’t done earlier. While a formal diagnosis would clarify cross-contamination risks, continuing the challenge may not be worth the damage to your thyroid and quality of life, especially since you already know gluten worsens your antibodies and symptoms. If you need answers, you could discuss genetic testing (HLA-DQ2/DQ8 genes) with your doctor—this can rule out celiac predisposition without a gluten challenge. For now, prioritizing your health by quitting gluten again (strictly, given your sensitivity) and supporting gut healing (like probiotics, L-glutamine, or zinc carnosine) might be the wisest path. Your thyroid will thank you!
    • trents
      Well then, I'd say he's making excellent progress. It can take some time for antibody numbers to normalize. Even though new antibodies are no longer being produced, it takes a while for the old ones to be disposed of. Make sure you keep an eye on the alkaline phosphatase levels. It is probably true that is tied to his adolescent growth spurt but it's worth tracking. Thirteen years of elevated liver enzymes was what eventually led to my celiac disease diagnosis. But I was 50 years old by that time and it was my ALT and AST that were mildly elevated all that time, not my alk phos. I just found out last week from an ultrasound that my liver is 20% larger than normal and I'm hoping that is a legacy effect. I have more testing lined up. 
    • CeliacMom79
      Hi. Sorry, his previous levels were >250 and we do not know how high they were. So yes, "off the chart". By 'detectable' I just meant that at 234 we now actually have a number as a baseline that we can measure future labs against. All his other liver test functions have been normal.  Just the elevated ALP. Thank you.
    • NoGlutenCooties
      Hi all I'm looking for a safe place to eat in Wilmington, DE. Any ideas? Thanks Jenny
    • trents
      Welcome to the forum, @CeliacMom79! Not sure what you mean when you say you are pleased that his ttg levels are now at "detectable levels"? Earlier in your narrative you said they were originally above 250. Was 250 the upper limit of the scale that was used, such that you actually don't know how high they were originally, i.e. "off the charts"?  Were his other liver test functions (ALT, AST) originally elevated?
×
×
  • Create New...