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Gluten Challenge On Toddler!

mmcc54

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mmcc54 Contributor
mmcc54
Posted

Hi everyone! Went and saw the GI today LO had a pos IgG test and neg biopsy a few months ago shes been gluten free since and feeling great still really slow at gaining weight though but feeling much better and happier! The GI suggested keeping her gluten-free for another month and doing bi weekly weight checks then doing a gluten challenge to see if she gets sick in order to confirm a celiac diagnoses...seems harsh and im so afraid to do that!!!! Is this normal? I cant imagine feeding my baby something that may potentially harm her on purpose just to sit back and watch her get sick!

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nvsmom Community Regular
nvsmom
Posted

Seems kind of... dumb to me too. Why doesn't he keep her gluten-free and then, if he is doubting the celiac disease disgnosis - which it appears he is, start looking into other possible causes rather than kicking the same horse over and over.

 

Good luck. If she does the challenge, I hope it isn't too hard on her.

w8in4dave Community Regular
w8in4dave
Posted

Wow!! Poor baby!! Why not do blood work? Or have they? Hmm seems crazy! to me but I am not a DR. 

mmcc54 Contributor
mmcc54
Posted
  • Author

We had the first blood test done when she lost weight around 12 months her IGG was pos sending us to the GI...what sucks is he is the only pedi GI around us so I cant go local for another opinion! I didn't know if this whole gluten challend was a normal part of the diagnosing process or not! Just seems weird to me exp since shes gaining weight now finally and doing well! Shes still so tiny at 16 months wearing 6 month clothes still I just cant imagine giving her something that could start this whole process of her getting sick over again!

mmcc54 Contributor
mmcc54
Posted
  • Author

Hi everyone my 16 month old had a pos blood test 6 months ago followed by a neg biopsy shes been gluten free for 5 months...she was doing well gaining weight happy ect. Her GI said it would be "interesting" to put her back on a gluten diet but eliminated fructose?! Yesterday I let her have a taste of her sisters apple cider donut last night she had diareah...a rash broke out along her lower back and was up ALL night long crying...idk what to do!!! Calling the dr again when they open but does this sound gluten related to you guys??

kareng Grand Master
kareng
Posted

I think your doctor is trying a version of the FODMAP diet on her.  There have been recent studies that people who do not test positive for Celiac but have good results on a gluten-free diet were  doing better because they are responding to the low FODMAP foods.  I think the fructose comment is a reference to FODMAP foods.  However, your baby did have a positive blood test which is unusual in small kids. 

 

 

The problem is, unless you do a really good job on the low FODMAP diet, it might be hard to know if that is the issue.  Also, because wheat is one of the highest FODMAP foods, adding it back to her diet .... well, then it is really hard to be low FODMAP.

 

Here's what I think I would do:

 

I would get copies of every lab test, pathology report,  procedure reports then contact The Univ of Chicago Celiac Center.  They will want you to fax or scan the entire report.  They may ask for a donation later, but only donate if or when you can afford it. 

 

 

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w8in4dave Community Regular
w8in4dave
Posted

really it would happen right away. I don't think you'd have to do it very long to prove his point. But I am with you on this. If she is feeling better and gaining weight then why do it? I think he just wants to eliminate another option. Good luck! I hate to see baby's and children suffer. Bless her lil heart!! 

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kareng Grand Master
kareng
Posted

I just merged the two topics together because we are talking about the same thing here and on the new topic.

mmcc54 Contributor
mmcc54
Posted
  • Author

Thank you guys! I just gave her some more gluten this morning the rash came right back!!!!! Waiting on a phone call from the drs now :(

w8in4dave Community Regular
w8in4dave
Posted

Awweee poor baby!! Well I guess you know your answer!! 

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