Confused About 2 Yr Old Daughter Weight Gain

[sadiesmom]

Hello -

I posted a couple of months ago about my daughter who was 22 months. She turned 2 yesterday. Her only symptom has been very slow weight gain. For that we were sent to a ped GI who did a million and one tests and a biopsy. Biopsy, stools, urine, and blood came back with no malaborption or damage (IgG was at 40 though that was the original bloodwork that sent us to the ped GI).

However, Sadie on Nov 1 weighed 19 lbs 13oz. On Jan 10 she weighed 19 lbs 15 oz. The PEd GI said she did not have celiac because of the bloodwork and the biopsy. However, after reading many of your stories - I thought about trying the gluten-free diet anyway because the lack of weight gain wa so dramatic. The nurse told me the diet was too extreme to just try out (I said REALLY? I think that knocking out a baby and sticking a tube down her throat and taking gallons of blood from her is more extreme that a diet!)Before I could try the diet, the Ped GI called to say that she does have one of the genetic markers for celiac. And then they recommended (and I am not sure if they did this because I was being a crazed ranting mother on the phone or if they really thought it would be a good idea) that we go gluten-free for 2 months and see what happens. He said that there might be a lack of damage because Sadie still breastfeeds. What do you think about that - could breastmilk be making it hard to get an accurate diagnosis?

So - Monday Febraury 12th we started the diet. The same day she and I got a stomach flu that wrecked us for 3 days. I went back to eating gluten-free after that - but she would not eat at all. After 2 days I decided she had to eat something. I asked her what she wanted and she said chicken nuggets. I felt so desperate I ran out and got Wendys nuggets and she ate them. I decided that I was going to lay off the strict gluten-free diet with her until she was over this flu. But, for the most part she still at very little if any glutened bread and pasta. So today I take her to get weighed and she is 20 lbs 6 oz.

This is my question - sorry it took so long to get here - In the month and a half since last being weighed she gained 7 ounces. That is high for her. I can't believe that the past 10 days on a not so strict gluten-free diet - while being sick and barely eating anything - have helped her to gain that weight. What do you think? Are those 7 ounces just something she must have gained since Jan 10 or has removing some of the gluten in her diet for 10 days cause this dramatic gain? I so wish I would have got her wieghed on Monda Feb 12th when we started - but that was the day she got sick and was too sick to take out.

Sorry this is so long - I am just so frustrated with teh Dr and the lack of diagnosis.

Thanks,

Amy

[Juliet]

My son gained back the four pounds he lost in less than two months from being extremely sick with Celiac Disease after 3 1/2 weeks of being gluten free (with a few mistakes in there, too - had some oat flour and Rice Krispies which has malt). So, yes, it can be from that.

BTW, you can buy Ian's frozen gluten free chicken nuggets. I'm not certain where you live, but they have them here on the west coast at Whole Foods.

[sadiesmom]

Thank you for the info on the chicken nuggets. I had bought chicken tenders and a can of some type of gluten-free corn crumbs that I knew I could make my own - but frozen are SO much easier. I will get some. I started out really well with the diet for teh first week - and we were sick - so not eating much anyway. But then I began to panic when she would not start eating again. And of course - family members are saying "if you restrict her diet she will never gain weight and may start losing!" So with all of that - I caved and let her have pretty much what she wanted for the past 4 days.

I think I will probably have to on it longer to know for sure. 4 pounds is incredible for you son!

Thank you,

Amy

[jayhawkmom]

Hiya!

I have a similar story. Though... no one ever send us for any testing due to my daughter's size. I still find that odd.

Anyhow, when my little one was sent for testing in June of last year... her blood test results were considered inconclusive. She had an IgG elevated more than 7 times the top of the reference range, and all her others were 1 point below the top of the negative reference range. Her allergist said, "totally negative." But, sent us for further evaluation.

GI did an endoscopy... found duodenal ulcers, inflammation, and mucosal lining lesions... yet, no blunting of the villi, thus... no Celiac diagnosis. We inquired about a gluten free diet as a trial....and her gi said it was a good idea, even though she was not found to have Celiac.

At the time of her endoscopy, she weighed 27 lbs. She was a month away from her 5th birthday. She had not gained more than a couple of ounces since her 2nd birthday. (Why on earth didn't they send us for testing sooner??)

By December - she was up to 35 lbs and had grown 3 inches in height!!!!

No one on this earth will ever convince me that she does not need to be gluten free.

She ended up getting very sick with strep, and lost a couple of pounds. Last week she was back down to 32 lbs. She was weighed today... and weighed 32 lbs 9 oz, so she is gaining again.

A gluten free diet can be just as healthy, if not more healthy, than a "normal" gluten filled diet. I think you've already seen how it can benefit your child.... go with your gut, regardless of what the "professionals" tell you. =)

[FeedIndy]

We started a gluten free daughter with my youngest, 10 months at the time, right after having blood work drawn. We did the research while we waited for results and came to the conclusion that we would not biposy regardless so we just started. I'm sure we weren't doing a great job because I didn't know about oats and I didn't change my own diet when I was nursing at first. She was back to the doc on day 5 of "gluten-free" to receive negative test results and discover she had gained 5 ounces. Her doc said leave the diet and finally last week after watching her steadily climb the growth chart said he no longer believes the test results.

I think weight gain can be drastic in kids who have a lot of catching up to do-even if the diet isn't entirely accurate.

[mouth]

Hello -

I posted a couple of months ago about my daughter who was 22 months. She turned 2 yesterday. Her only symptom has been very slow weight gain. For that we were sent to a ped GI who did a million and one tests and a biopsy. Biopsy, stools, urine, and blood came back with no malaborption or damage (IgG was at 40 though that was the original bloodwork that sent us to the ped GI).

However, Sadie on Nov 1 weighed 19 lbs 13oz. On Jan 10 she weighed 19 lbs 15 oz. The PEd GI said she did not have celiac because of the bloodwork and the biopsy. However, after reading many of your stories - I thought about trying the gluten-free diet anyway because the lack of weight gain wa so dramatic. The nurse told me the diet was too extreme to just try out (I said REALLY? I think that knocking out a baby and sticking a tube down her throat and taking gallons of blood from her is more extreme that a diet!)Before I could try the diet, the Ped GI called to say that she does have one of the genetic markers for celiac. And then they recommended (and I am not sure if they did this because I was being a crazed ranting mother on the phone or if they really thought it would be a good idea) that we go gluten-free for 2 months and see what happens. He said that there might be a lack of damage because Sadie still breastfeeds. What do you think about that - could breastmilk be making it hard to get an accurate diagnosis?

So - Monday Febraury 12th we started the diet. The same day she and I got a stomach flu that wrecked us for 3 days. I went back to eating gluten-free after that - but she would not eat at all. After 2 days I decided she had to eat something. I asked her what she wanted and she said chicken nuggets. I felt so desperate I ran out and got Wendys nuggets and she ate them. I decided that I was going to lay off the strict gluten-free diet with her until she was over this flu. But, for the most part she still at very little if any glutened bread and pasta. So today I take her to get weighed and she is 20 lbs 6 oz.

This is my question - sorry it took so long to get here - In the month and a half since last being weighed she gained 7 ounces. That is high for her. I can't believe that the past 10 days on a not so strict gluten-free diet - while being sick and barely eating anything - have helped her to gain that weight. What do you think? Are those 7 ounces just something she must have gained since Jan 10 or has removing some of the gluten in her diet for 10 days cause this dramatic gain? I so wish I would have got her wieghed on Monda Feb 12th when we started - but that was the day she got sick and was too sick to take out.

Sorry this is so long - I am just so frustrated with teh Dr and the lack of diagnosis.

Thanks,

Amy

Hi Amy,

I get wellshire gluten free chicken nuggets from Whole foods in NY. good luck. The tinkydaya pasta is good too.