I Am So Confused

[Guest tracey and emma]

HI everone again sorry it has been a while but we have been on a bit of a roller coaster with emma.

Emma seemed to be doing really well on the gluten free diet the diohrrea has stopped and i was starting to think that per-haps even though emmas blood test was negative to celiacs that may be, we had finally got to the bottom of things

BUT and a big but at that!!

She has not really gained any weight in 4 mths!! and is still 9.5kgs at almost 3yrs old.

she is lathargic all day and just rolls around the floor doing nothing. looking pale and tired. And she is tube fed over night neocate!!

her biopsey showed last november lymphocytes in her intestine even though to look at the intestine was fine.

She had another endoscopy last week and even though being on a gluten free diet the lymphocytes are still there, abosolutly no change in almost 5 mths of being gluten free???

I think per-haps we are on the wrong road now, but how long being gluten free does it take to get a normal result from the biopsys?

And what do you all think, has anyone else ever heard of this happening?

to me it does not make any sence. how does a child that eat small amounts and is fed on top by tube. not gain any weight even when the diorhea stops.

the other result that came back was that she was low in protine in her body, and she craves milk eggs yoghurt, chicken. again makes no sence.

The other result we got back was that the fundoplication performed 18mths ago has compltely come undone and it was fully in tacked in november. so now they are questioning silent relfux as well. AGAIN! and she has had 2 apnoea episodes in the last 3mths.

i am in total dispare as now they are saying she is so low in weight her organs are going to be efected, but what do i do to get her weight up. she is slowerly sliding away from us. they are thinking she may have a very rare disored, or form of celiacs but they don´t know. They will start to introvinously feed her soon. If she does not pick up.

any advice would be great i am temped to take her off the diet and see what happens out of desperation!

thanks

tracey

[KayJay]

I am so sorry to hear all that. I have no advice but just wanted you to know that I will keep your little girl in my thoughts and prayers and hopefully you will find an answer somewhere.

[mommida]

Where has Steph the kick boxer been? Does anyone remember the site she went to and the information on EE?

Tracey and Emma,

My thoughts and prayers are with you. I am also trying to find some information about a similar sounding situation. It was about a year ago, and involved a different web site.

L.

[Guest tracey and emma]

I am so sorry to hear all that. I have no advice but just wanted you to know that I will keep your little girl in my thoughts and prayers and hopefully you will find an answer somewhere.

thankyou anything we can go on would be wonderful. as right now it is like searching for a needle in a hay stack i am spending hours on the internet everynight.

i just need her to put on weight anyone else got any idears about milk that can be tube fed, she is on neocate at the moment. are there any others and have any of your childern had problems with neocate.

thanks again

tracey

[KayJay]

thankyou anything we can go on would be wonderful. as right now it is like searching for a needle in a hay stack i am spending hours on the internet everynight.

i just need her to put on weight anyone else got any idears about milk that can be tube fed, she is on neocate at the moment. are there any others and have any of your childern had problems with neocate.

thanks again

tracey

The doctor gave Maddie Neocate too and said virtually no body has a problem with it. BUT I do remember some one on here saying their baby couldn't tolerate it either.

[Nic]

Hi, I just read an article the other day on line that said that after 2 years a Celiacs intestine is mostly repaired. There was a percentage involved that I do not remember but it was a high one. From the way I understand it, it would not be likely to repair itself in 4 months. Also, my son had a positive blood but negative biopsy because they only found lymphocytes, everything else looked normal. The doc had the biopsy reexamined by Columbia University in NY, they are one of the best, and they concluded that it was Celiac. He also had his blood test for the genes that cause Celiac to determine if it is even possible for him to have. Maybe that is something you can look into. If the gene is not there, there is no way she can have Celiac. (this test is different than the Celiac panel of tests). And, my son was diagnosed last May. By July, I saw no huge improvement so I brought him for a second opinion. This doc agreed with everything the first one said,but added that it may be too soon to see much improvement. By Sept., things began to improve.

Good luck,

Nicole

[prinsessa]

I don't really have any advice, but I just wanted to say I will be keeping your daughter in my thoughts. I hope she is doing better soon! Maybe it is just too soon and she will be improving soon.

[AllForEmily]

My baby is having a problem with the reformulation of Neocate Infant formula. The cans with the yellow label were great for her, but the new stuff in the gold cans is awful. She can't tolerate it at all. Could this also be the problem for your daughter? I am desperately hoping to find other parents with issues with the new Neocate Infant formula. I've contacted the manufacturer, and they told me since my baby is one of only a handful of babies who can't tolerate the new formulation, they will not be making it anymore period. We have not found anything else that she can tolerate, including Neocate One+, so we are truly desperate for a solution!