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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!

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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.

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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.

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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?!

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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.

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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 :)

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    • Thanks Stephanie & Gemini for the info. that the 4 of 5 doesn't apply to children. I wasn't aware of that until now. 
    • I think the posters above have given you very good information and I will throw in my 2 cents worth.  I am surprised that they did not test her DGP IgA also.  I am sure that would have been positive.  They switched off with antibody classes and usually they do both tests for both antibodies.  IgA is more specific to Celiac but the IgG is also useful.  The testing shows your daughter is producing antibodies to the gluten in her diet. (DGP IGG). THe tTg shows positive for some damage or inflammation. You know........your daughter is only 4.  She hasn't been on the planet or eating gluten that long. It can take years for enough damage to occur for it to be able to be found on biopsy.  I would say it is highly likely that this is Celiac, especially with her symptoms. But because the damage hasn't graduated to bad enough yet, they won't diagnose her. I think you need to do what others have said and get all copies of testing and find someone else who will take a look and give a diagnosis, especially if they have you do a dietary trial and her symptoms go away.  That might be the only recourse if you want faster proof. I know I would want faster.  I would not really be happy if I thought I had to keep feeding her something that was making her sick.  If you keep her on gluten long enough, the diarrhea will probably show up. BTW.........the criteria mentioned regarding diagnosis does not apply to kids.  I know it's silly and stupid but most leading Celiac specialists do not go by this criteria for kids.......adults only.  Keep that in mind because it might come up.  You could recognize it but they might not. Have you considered gene testing, to help bolster a diagnosis? As far as false positives go, it's the other way around. False negatives happen more frequently than many people think.  It's a recurring theme here.  With her symptoms, which is what I had, a bloated belly and tummy aches are telling.  Have they tested her for lactose intolerance?  That can cause similar symptoms, although it sure won't raise those 2 blood tests.  Keep looking for Celiac because there are many red flags here.
    • This 4 out of 5 criteria does not apply to children. I was never given a reason why, but it isn't.     That said, you may try to get a second opinion from another GI who may be willing to give her a firm dx.  We were in your boat 6 years ago and while I'm sure I'll get slammed for it, I wish we had kept gluten in our kiddos diet till he scoped positive for a variety of reasons.  Again, even family is different and you have to find what is best for you!
    • Mnoosh, I had swollen lymph nodes prior to celiac dx and for a while after going gluten free. My neck as well as groin. The groin ones were the worst. Guess what? All gone! It's hard to recall a time line & consider that everyone is different but I think mine completely resolved within a year.  You've been given great information. Just breathe and then again, breathe. You're going to be fine. 
    • It is the only thing you have eaten, so it can't be anything else?  I eat it with no issues so I am not sure how you can be certain that is the problem.  All I am saying is that its sort of "your word against mine and the company's word".  
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