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Help Please Need Your Opinion.

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 and thanks again for your help and time.

i went the the consultant on monday and talked everything though with him. i told him that emma will now not eat a thing. and is gaging and retching at the site of food. i have server problems with getting emma to eat she will starve her self to death. no exsaduration!!!!

we had made progress with her eating in the past 5mths. so the consultant said is is it the food. i said yes i am sure she does not like it.

so he stopped emidiatly the gluten free diet as the bloods were negative any way.

took her home my friend fed her normal pasta and biscuts no change or differance at all that day. she ate 4 small yogurts the following day and a tiny bit of chicken. as she is now so low in weight it was deciced on the first night to put her pump feed up from 400mls per night to 6oomls per night. no problem as with the gluten being added on the first night.

3am in the morning emma had, had 487ml though her gastrostomy tube. and sever retching (this was not sycalogical, as she was a sleep when it started)h and in the end violent sickness. my daughter has had a fundoplication. so being sick though that is extreme. she went blue at one point. continued though the day with violent diorea. ended up in the A&E yesterday afternoon. but emmas cons was not there. they thought it was her not tolerating to increased feed. no mention of the gluten.

went on dioralite last night though the gastrostomy to keep up fluids. and again this morning voilent diorea.

she looks terrable.

how long is it, if one of your childern comes into contact with wheat before they have a reaction. as emma showed no sign for about 39hrs after the first meal with wheat in can this happen??

what is you opinion is this a typical reation to an exposure to wheat. i have no idear. this is more violent than she had ever had before starting the diet.

thank you our consultant is not hear as per usual. not back till monday.

thanks for reading again.

tracey

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Nantzie Collaborator
Nantzie
Posted

I'm so sorry you and your daughter have been having such a rough time. How old is she? I don't know anything about feeding tubes or anything, but I'll help as much as I can.

I have heard that some people's reactions to gluten are delayed, so it very well may be the gluten. Some people react very badly to dairy too, so maybe the yogurt?

Since the gluten-free diet is a healthy one anyway, it certainly wouldn't hurt to take her off of it for a longer period of time (if I'm reading right, you're saying she had been gluten-free just since Monday).

For me, I didn't really start to see my own personal reactions until I went off of it for a longer period of time, and then ate gluten, either on purpose just to see what would happen, or accidentally when I didn't know it was in something.

You can also talk to your nutritional counselor about doing an elimination diet. Basically, you take her off all foods except the ones you know for sure don't make her sick. I know some people mention going down to bananas, rice and chicken. All plain. And then you slowly add one food at a time for a period of several days each, until you get the reactions again.

You mentioned that she's on a feeding tube. Do you know what's in the stuff that goes through her tube? Food allergies are an odd thing. The most common food allergies are things that people eat every day. The 5 top food allergies are wheat, dairy, eggs, soy and corn, if I remember right. For me, soy is horrible. They put soy in a lot of stuff for kids, so that may be something you want to explore too.

Nancy

Guest tracey and emma
Guest tracey and emma
Posted

hi sorry never very good a writing posts.

emma has been gluten free for about 5 weeks now. on monday the doctor said as she completely refuse to eat the new food give her back the food she will eat. Which all include gluten!

so thats what i did monday lunch time.

i went back to gluten free yesterday and this morning no diorea, gaging stopped yesterday afternoon. so i guess now i have to sit back for a few weeks and discuss with the doctors if we re-add it and see if we get the same responce then i guess we have our answer.

the milk feed emma has is Neocate, milk, soya, gluten, just about everything you can imagine free. and is already part digested so her tummy does not need to work to obsord it. god knows whats in it, but it is keeping em above water at the moment. smells like potatoe peelings as well, it is discusting good job she does not have to drink it.

thank you, knowing there can be a delay in reaction is very useful to know.

tracey

Lovinglife Rookie
Lovinglife
Posted

Tracey, just to reiterate what Nancy said, there can DEFINITELY be a delay in reaction. I was able to get gluten products for months without syptoms and, then, BAM was hit with the symptoms like never before. This is just an extreme example to show, but I have shorter lapses of time between being glutened and feeling the consequences. I will pray for you and Emma. God Bless.

Kasey'sMom Enthusiast
Kasey'sMom
Posted

Tracey,

I'm so glad that your dd is tolerating the Neocate. I remember my allergist mentioning the formula a while back.

My dd sometimes shows symptoms quickly and sometimes they're not completely visiable until they next day or so.

Nacy is right. Many people on the board, including my dd are allergic to soy, dairy and other foods. My dd improved on a gluten-free diet but it wasn't until we found her other allergies that we could tell a dramatic difference.

With my dd I did a food diary. Well it was more than a food diary....I got a notebook and listed all the food and beverages my dd had for the day. I also put what time she ate and how she reacted. I also listed things like changes in temperment, skin rashing, stools etc. For babies with reflux it's also helpful to list where the food was consumed. For example, snack in stroller/walking in the mall, or dinner at home in highchair, etc. I know it seems like a lot of work but it was really helpful when we met with her doctors. They could see how frequent her symptoms were and it helped us to find a connection. I found my dd's diet diary the other day and she was eating so many of the foods she was allergic to.

I hope Emma will continue to improve. :)

Guest tracey and emma
Guest tracey and emma
Posted
Tracey,

I'm so glad that your dd is tolerating the Neocate. I remember my allergist mentioning the formula a while back.

My dd sometimes shows symptoms quickly and sometimes they're not completely visiable until they next day or so.

Nacy is right. Many people on the board, including my dd are allergic to soy, dairy and other foods. My dd improved on a gluten-free diet but it wasn't until we found her other allergies that we could tell a dramatic difference.

With my dd I did a food diary. Well it was more than a food diary....I got a notebook and listed all the food and beverages my dd had for the day. I also put what time she ate and how she reacted. I also listed things like changes in temperment, skin rashing, stools etc. For babies with reflux it's also helpful to list where the food was consumed. For example, snack in stroller/walking in the mall, or dinner at home in highchair, etc. I know it seems like a lot of work but it was really helpful when we met with her doctors. They could see how frequent her symptoms were and it helped us to find a connection. I found my dd's diet diary the other day and she was eating so many of the foods she was allergic to.

I hope Emma will continue to improve. :)

Guest tracey and emma
Guest tracey and emma
Posted

hi thankyou all so much.

so far so good emma is still tolerating 600mls neocate formular though her feeding tube at night.

she has now been gluten free again for 6 days. and to day for the first time in months is looks like a well child. she has colour in her cheeks loads of energy, laughfing and all in all just being normal.

i think even though she was gluten free for 4 weeks she was not getting enough nutrition through the tube feeding at night, and as she refused to eat she was in her self still looking ill. even though the diorea had stopped.

so now i am trying to decide if i add gluten again and see what happens! you all probably think i am mad but...............we have been down such a long road with major operations almost living in hospital for the first 14mths of her life. even down to her being so weak she contracted MRSA and was extreamly ill. Now i need a confermed answer is it or isn´t it! can not as per usual get hold of the consultant. so going i think to give it another few days and try giving her gluten again see if she react´s.

because it could also have been a tummy bug last week, but know one else has come down with at stomach upset in the family so i think it is unlikely. And have spoken to other mums in the area and there is not a bug going round that they know of.

thank you

tracey

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