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    Do you have questions about celiac disease or the gluten-free diet?

Lyndsie

Another Newbie Needing Advice

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Hi--

My son is 17 months old and is being tested for gluten intolerance. I'll give you a quick background. He was a very "easy" and happy baby until we started solids around 5 months. At that point he developed eczema, excessive night waking, fussiness, and odd stooling patterns. Our doctor thought it might be a milk allergy so I took him off all dairy and myself off too since I was breastfeeding. He definately seemed better, but some of the symptoms continued and his growth started to taper off. He is now in the 3rd percentile and started out in the 95th at birth. He was sent to an allergist he tested negative for any allergies but thought he could have lactose intolerance. So, my doctor has now decided to test him for gluten intolerance. We are awaiting the results right now, but based on everything that I have read so far I have a strong feeling this may be the problem.

I am completely freaked out right now. Not so much because I am afraid that he might have celiac but because I was told to keep feeding him gluten so that the endoscopy would be positive if the screening comes back positive. I feel like I am poisoning him by doing this. So, basically I don't know what to feed him while I wait for the results to come back. He has never been a good eater anyway and is so underweight, so it is difficult on a good day! Also, should I continue breastfeeding? I feel like this has been a lifeline for him. Does that mean I need to go gluten free too?

Sorry for all the questions! Thank you!

Lyndsie

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Why shouldn't you continue to breastfeed? If you are eating gluten, then it is going into him anyway, and if you give him the bare minimum of gluten - like just his breakfast cereal and everything else is gluten free, then his biopsy will still come out as though he is eating gluten. Yes, gluten might seem like it is a poison (some people might answer you and say it is :) ) but if you want to know the answers, then it is easier to keep him on gluten than doing a challenge later. If they go off gluten they get very sensitive to it. Good luck with it all - i was where you are this time last year, waiting for results and a biopsy and was going crazy... Now she put on so much weight i can hardly carry her :D

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I just want you to be aware that the testing on children that age is not very reliable. If he tests positive, it is definitely valid. But if he tests negative on either of the tests (or both) that may not mean a thing.

Either way, I urge you to just put him on the gluten-free diet after testing is done, as that is the most valid test, especially for young children.

When is his biopsy? If you have to wait for months, you would do better to just try the diet after the blood test and cancel the biopsy. On the other hand, if it is very soon, I'd say, go for it.

But yes, once you want to feed him gluten-free and you are still breastfeeding, you need to go gluten-free yourself as well.

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Continue breastfeeding! There's enough info out there that shows that breastfeeding is beneficial for kids who have Celiac or who are at risk for it. If your son's results are positive, you will most likely stop eating gluten anyway (it is so hard to keep a child gluten-free if the household is full of gluten).

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