Small child, celiac, no growth, advice\chizuk needed

amother

Cyan

Thu, Jun 04 2015, 12:24 pm

I'm posting this for my sister-in-law who doesn't have internet access. She asked me if I can post this online to look for advice.

She has a 4 year old son. He is 20 1/2 lb and 32 1/2" tall.
His weight is considered worse then his height.

He was diagnosed with celiac exactly one year ago.
But they aren't seeing tremendous growth event though they are meticulous with what he eats, and comes into contact with. (No oats, gluten free household products, separate baking equipment, etc).
They are revisiting their GI and nutritionist soon. He will most likely send them back to their endocrinologist.
His growth hormones are very good.

He is eating a decent amount for his weight he is just not gaining. She said its great that the nutritionist say to feed him an avocado, but for a picky 4 year old it isn't realistic.

My sister-in-law asked if I could ask if anyone had any advice for her or if someone has been there and has some sort of chizuk.

amother

Violet

Thu, Jun 04 2015, 12:31 pm

I have a child that was ftt .if your not gaining weight your not going to grow. The gi gave us an appitaite stimulate medacation. she was 2 weeks on 2 weeks off it really did help and she started putting on weight, also feeding therapy helped a lot. but at the end we were also dealing with growth hormone deficiency too so for her hight we have to so ght.

mummiedearest

Thu, Jun 04 2015, 12:44 pm

I don't have experience with celiac itself, but I am on a medical diet that a lot of people with celiac use. some people with celiac have to go beyond gluten free. the diet is called the Specific Carbohydrate Diet, and here is a link to the book: http://www.amazon.com/Breaking.....cycle

the book is based on a diet created by Dr. Sydney Haas, who was known as an authority on celiac disease in children in his day.

if your sil is interested in trying this out, she should read the book carefully. it's a lot of work, and she should know how to do it properly. there are plenty of people on this diet, and there are lots of internet support groups for it. I'm always happy to answer questions via pm.

amother

Powderblue

Thu, Jun 04 2015, 12:46 pm

dont know if this is very helpful but I was just told this week by my childrens GI that it could take anywhere from 6 months and on for symptoms to normalize after the bloodwork returns to normal..even longer if the numbers are very high. so a year is not that long to see his symptoms resolving if the numbers were very high.

amother

Cyan

Thu, Jun 04 2015, 12:59 pm

I'm going to pass all this along.

[She couldn't believe that there were Jewish women online who would be able to give her information. She will be amazed with just this]

MamaBear

Thu, Jun 04 2015, 1:35 pm

Smoothies with cream or even avocado and cocoa missed in are good.

https://minimalistbaker.com/tr.....hake/

There are a lot of ideas you an find online for kids:

http://www.livestrong.com/arti.....kids/

He's only been no the diet for one year - it can take a lot longer for the body to fully recover from his pre gluten free diet.

Bruria

Thu, Jun 04 2015, 7:21 pm

An easy way to help a child gain weight is to add butter and cheese whenever possible,use always whole milk, this pdf from UC Davis is great, of course not everything they advise is possible because of kashrus, but check out some of their fortified recipies and advice:
http://www.ucdmc.ucdavis.edu/c.....t.pdf
Also peanut butter is good for helping gain weight.

amother

Cyan

Thu, Jun 04 2015, 7:45 pm

I just shared these with her. He has an appetite fitting his size.
He does eat fattening foods.
he has a bowl of ice cream every day after school.
Eggs for breakfast with lots of butter and oil.
Only drinks full fat milk

She said she will try that avacoda shake idea. Between the cocoa and chocolate syrup and banana it may work. Thank you.

Knowing that it is normal to take more time does give her more hope that things will pick up. She was hoping that after all they put into it things would move faster.

amother

Jetblack

Fri, Jun 05 2015, 4:41 am

Could it be cross contamination?

My friend had to make her home totally gluten free in order for her child to heal. The smallest bits were getting in his food and clearing the gluten out of the house really helped.

It was very hard to do that. It meant inside the house everyone was gluten free.