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Emma Update

Guest tracey and emma

By Guest tracey and emma
in Parents, Friends and Loved Ones of Celiacs

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Guest tracey and emma
Guest tracey and emma
Posted

Hi everyone i am sorry i do not seem to have a lot of time so do not come on line very oftern!

Since christmas emma has been completely Gluten free. so for about 10-11weeks now. She had no significant signs of celiac on her endoscopy that they could see to the eye, except for the biopsys that came back with limphodes being a small problem in her intestene, which lead them to belive she possibly had the beginings of celiac disease.

did a blood test to prove negetive but our consultan says that the test is 100% correct even for the beginings of celiac disease.

But ........after being on this diet for 6weeks no change at all and then a few weeks ago she starts to tolerate milk at a higher volume through the G-tube, and at an increased rate per-hour. which is amasing.

and now she is putting on weigh faster than she has ever done. and looking really good.

diohrea that she had, has stopped and except for one server episoded of retching 3 weeks ago where she blacked out, and went blue she is a differanct child.

but like i said bloods were negative. have any of you guys come across a simular thing and course of events? or is this unusual???? and does it have to be celiac disease or could she just have a wheat allergie or are they the same thing?

thanks for your help

tracey

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chrissy Collaborator
chrissy
Posted

i am assuming you mean lymphocytes? that is all that showed in one of my girls biopsies---but she had positive blood work.

christine

lovemyboy Rookie
lovemyboy
Posted
Hi everyone i am sorry i do not seem to have a lot of time so do not come on line very oftern!

Since christmas emma has been completely Gluten free. so for about 10-11weeks now. She had no significant signs of celiac on her endoscopy that they could see to the eye, except for the biopsys that came back with limphodes being a small problem in her intestene, which lead them to belive she possibly had the beginings of celiac disease.

did a blood test to prove negetive but our consultan says that the test is 100% correct even for the beginings of celiac disease.

But ........after being on this diet for 6weeks no change at all and then a few weeks ago she starts to tolerate milk at a higher volume through the G-tube, and at an increased rate per-hour. which is amasing.

and now she is putting on weigh faster than she has ever done. and looking really good.

diohrea that she had, has stopped and except for one server episoded of retching 3 weeks ago where she blacked out, and went blue she is a differanct child.

but like i said bloods were negative. have any of you guys come across a simular thing and course of events? or is this unusual???? and does it have to be celiac disease or could she just have a wheat allergie or are they the same thing?

thanks for your help

tracey

Hi

Our blood work was negative and we took our son off anyway and he has put on lots of weight and seems to be eating alot better. Not sure which type he had though. Sounds like I would keep her on the diet if she has improved that much.

key Contributor
key
Posted

Blood work is not accurate in small children. My son had negative blood work and responded massively to the diet! So if she is doing great, don't listen to what they are telling you. LIsten and look with your own eyes at how well your Emma is doing! Isn't that proof. It was with our son!

Monica

Becky6 Enthusiast
Becky6
Posted

My daughters blood work was neg but she has turned around 100% from being gluten-free since dec 1st.

Nic Collaborator
Nic
Posted

My son also had positive blood work but only showed lymphcytes in biopsy. He has been gluten free for 10 months. I just got done telling my sister on the phone that I think he is getting a bit chubby. Big turn around from last year .

taweavmo3 Enthusiast
taweavmo3
Posted

My two boys (2 and 7) both tested negative, but have responded well to the diet. My youngest was very lactose intolerant before, if he had even traces of dairy he would have diarrhea and awful diaper rashes. Now he's been gluten free for around 6 weeks, and can tolerate all the diary he can eat! I do have a daughter also, 4, who did test positive on both blood work and biopsy.....but now that I've seen the positive results in my boys who tested negative, I don't really put much stock in the current testing for now.

If Emma is thriving.......just keep her on the diet. Don't let doctors tell you to do anything different. I've heard our ped ask why I would "put my kids through that" if they weren't really sick, like it's some sort of cruel punishment. Alot of doctors don't really have a clue what it's like to live gluten-free, it's really not that bad. And there is still LOADS of gluten-free junk the kids can have, so they aren't really deprived of kid friendly food. My 7 year old actually made the choice himself to go on the diet, just based on how much better he felt. That spoke volumes to me!

Take care, and I hope Emma continues to thrive!

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Guest nini
Guest nini
Posted

the blood tests are extremely unreliable in children and for the Dr. to tell you that a negative result was 100% accurate is a load of crap.

My daughter's blood test was negative, she did not have the biopsy, but had a miraculous turn around on the gluten-free diet. I am convinced she is Celiac and so was her pediatrician. Trust your instincts that she responds very well to the gluten-free diet and that is all you need to know. Don't listen to those Dr.s that tell you she can't have Celiac because of a blood test. They are just ignorant. Sorry, but it's true. There are sooooo many stories of the blood tests being innacurate in children (and even adults) they can only be 100% IF they are positive for it. Not if they are negative. They can miss the early stages, they aren't trained to look for the early stages. They are trained that Celiac is extremely rare, they will probably NEVER see it in their practice, and they are only trained to look for the final stages of the disease where so much damage has been done to the intestines that the body is not absorbing ANY nutrients. Also, a lot of Dr.s will refuse to even consider Celiac, especially if they already have it in their minds that there is either something else wrong that requires surgery or medication OR they are convinced it's all in the patient's head (or the parent's).

Glad to hear she is doing better. Give it time, keep her 100% gluten-free, and I'm sure you will see some miracles! My daughter is now a thriving happy and healthy soon to be six year old. She does not feel deprived of any goodies or yummy food.

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