Consultants Are Thinking About Giving Up On Gluten Free

[Guest tracey and emma]

I am really worried as emma as you may know is only 9.5kgs at almost 3 years old.

they have found lymphnodes (SP) twice now but bloods negative.

i have had a mail form our consultant and as they are now deperate to get weight on they are considering giving up the gluten free diet. to see if she will gain weight better off it.

as she has not gained any weight.

but her diorhrea has stopped, over a slow period....... but still stopped.

i am anixous about starting it again because if the gluten-free diet that has stopped the diorhrea then could it set us back weeks, anyone got any idears about this? Has anyone else ever tried to introduce gluten and how did you go about it ?

if the diorhrea starts again and her weight falls even more then i am looking at IV feeding emma. I am so needle phobic, that thought is just unthinkable, but it is going to be discussed......... i know on monday. I know they want to go down the IV road now or try her on a 20hr tube feed, but she won

[Guest nini]

first of all are you 100% sure she is 100% gluten-free? Also, is she getting enough calories? With my skinny minny little girl who was very tiny at three, we had to give her supplement milkshakes (like Pediasure) and I just fed her whatever she would eat that was gluten-free and let her have as much as she wanted. I didn't worry about trying to get a balanced diet at first, just kept her gluten-free, gave her a good multi vitamin, and let her have gluten-free cookies and lots of rice pasta, potatos, things like that... She's still thin at six, she weighs 40 lbs (I don't know what that is in kg) but she's tall for her age and looks really healthy. Just skinny.

[TCA]

If I remember correctly, you're pretty new to the diet. It takes time for the gut to heal and for things to get better. If her D is stopped, I would refuse to take her off the diet. Just make sure you are giving her the highest calorie/fat choices you can. Try something called MCT (medium chain triglyceride oil) You have to have a prescrition to get it here, but it has 7 cal/g instead of 4 cal/g of regular oils. Bake her favorites and use this. Feed her whole fat cheese, bacon, milk, creme, ice cream, peanut butter, whatever she will eat. Another option might be something called Polycose. It looks a lot like Splenda, but it is a form of corn starch that is tasteless. You can add it to pudding, applesauce, drinks, just about anything for extra calories. It also requires a prescription. I just hate to think of her doing better and them messing it up. Follow your instinct for Emma. She needs you as an advocate.

My daughter has a feeding tube directly into her stomach and it is not bad at all. It's called a G-tube. For a while she had an N-G tube, which went down her nose. That was awful, but the G-tube is great. Why would they go directly to IV feeds without doing a feeding tube first?

[Guest tracey and emma]

Hi and thanks i am going in tomorrow to talk this out.

I am as sure as i can be that she is 100% gluten-free but can you be if she goes to friends and stays to play and they have had playdough out on a table e.c.t an she touches it even if it it has been cleared away. I don

[Fiddle-Faddle]

Everyone probably thinks I'm nuts, as I suggest this a lot, but do you know any nursing moms who might be able to donate some breast-milk? It's high in calories, long-chain fatty acids (DHA and RHA), secretory IgA, is easily digestible, and goes directly to brain and bone growth before fat cell growth. And I've read that nobody is ever allergic to it, though I suspect a child with severe celiac COULD react to breast milk from a mom with a diet high in gluten.

It's just a thought....

[TCA]

Tracey, sounds like our kids have a lot in common. My daughter is 1 and has been tube fed all but 11 days of her life. She has terrible wretching and gagging constantly. She can't yet tolerate anything more than a bottle orally. She has a Mic-Key button. The ONLY thing she has been able to tolerate in her feeds is a mixture of breast milk, pureed avocado, Gerber Chicken, Gerber prunes. I mix this myself since none of the prescrition formulas have worked. They make her projectile vomit. I chose each of those foods for their high caloric and fat content. She also has a constipation problem, so the prunes help with that. She is at 60 cc per hour, making about 600 a night. During the day she gets a few 45 cc bottles, but any more than that and she vomits. She also had a fundo and it came undone after only 6 weeks. It was a horrible experience. I went on a gluten-free diet since I am pumping for her and it made all the difference in the world.

I started adding the foods to the diet one day while I was cutting up an avocado for a salad for myself. It occured to me that they are packed with calories and fat and very creamy. I started pureeing them using 1 avocado, 1 tsp. lemon juice, and 60-90 ml. water. I add 60 ml. of the mixture to 60-120 ml. of the breast milk and it gives her a lot more calories than just the breast milk. 1 avocado has 29 g. fat and over 320 calories. I think the mixture is around 4.5 g fat and 45 calories, by my calculations. I highly recomend it. The avocados have to be very ripe, though.

Let me know if this works for you too. Her doctors thought I was nuts at first, but she's gaining better than she ever has, so they don't argue now. Good luck! PM me if you ever need anything!

[skoki-mom]

Everyone probably thinks I'm nuts, as I suggest this a lot, but do you know any nursing moms who might be able to donate some breast-milk? It's high in calories, long-chain fatty acids (DHA and RHA), secretory IgA, is easily digestible, and goes directly to brain and bone growth before fat cell growth. And I've read that nobody is ever allergic to it, though I suspect a child with severe celiac COULD react to breast milk from a mom with a diet high in gluten.

It's just a thought....

I don't think you're nuts that human milk is the best nutrition for an infant. However, breast milk is a body fluid and it must be screened, or you may find you have bigger problems than you do now. Human milk banks are rare, but they exist. The Le Leche League could probably help find a suitable bank, or help set up the appropriate channels to find a donor. You wouldn't give your child a blood transfusion without the donor being screened, you need to think of breast milk the same way. I don't mean to sound preachy, but a lot of people don't think of breast milk as a body fluid in the same way they do blood etc, but it can most definitely carry communicable diseases including HIV.

[tarnalberry]

additionally, gluten does pass through breastmilk (there's a post on here that lists some of the studies that show this, or you can find the studies yourself on pubmed), so that is also a consideration if the mother supplying the milk is on a wheat including diet.

[TCA]

Gluten DEFINATELY can be in breastmilk. My daughter was sooooo sick until I went gluten-free and it made all the difference in the world. She stopped bleeding from her stomach through the g-tube, she started gaining weight, she stopped vomitting, and she wasn't lethargic. It was amazing...

[Guest tracey and emma]

Everyone probably thinks I'm nuts, as I suggest this a lot, but do you know any nursing moms who might be able to donate some breast-milk? It's high in calories, long-chain fatty acids (DHA and RHA), secretory IgA, is easily digestible, and goes directly to brain and bone growth before fat cell growth. And I've read that nobody is ever allergic to it, though I suspect a child with severe celiac COULD react to breast milk from a mom with a diet high in gluten.

It's just a thought....Open Original Shared Link

hi and thank you for your advice.

it does sound as if we are in the same boat. can i ask did you put the avercardos e.c.t in through the micky button? and if you do you mind me asking what french size it is? Emmas has a 14 french, i think it is a bit like a hose pipe but i know there is bigger just wondering because even though i don't know anyone with breast milk, i could try it in with the neocate, what do you think? just worried about it going through the peg!

Also how do you get on with the micky button? Emma has a frecka button, but it broke the other week the center came out and her entire stomach contence was leaking every were. The acid burn her stomach and as she had only had it in for 2 weeks, i have not yet changed one for myself so had to go into switzerland from germany to get it changed, by which time she was screaming! I was told the micky leaked is that true? I was going to ask for the AMT mini. Here is the link for it, as i was told it was one if the best.

Open Original Shared Link

but my friend told me she had the same problem at the weekend as well with the AMT, begining to wish she had stayed with the frecka peg.

We have had some news they think it is a very rare form of celiac's and it is going to take about 12months for a full diagnosis, the other possiblity is that, as she had MRSA in the past

[TCA]

Megan's is also a 14 French. We haven't had any issues withthe Mic-key button. I'm not familiar iwth the others you mentioned. I have changed the Mic-Key and haven't had any problems with it. The pureed avocado goes in great. I just mix it with the breast milk ahead of time and put it in with her feeds at night. We have a Ross pump and haven't had any problems with it going through. The Gerber chicken will stop up sometimes, but as long as the avocado is really ripe and soft, it goes through nicely. If she's eating things willingly, you might also get her to eat some. It's great in guacamole with chips. Let me know if you need a recipe.

What is Emma able to eat by mouth? Do you have avocados available where you live? I'm not familiar with MRSA. What is that? Sorry for all the questions.

The nutritionist is wanting Megan to go on Neocate because it has more calories that breastmilk. I'm willing to try it, but I still plan to pump and give her some breastmilk at least through aug. when her next heart surgery is scheduled.

I hope you're able to enjoy your Sunday. You just have to take it one day at a time. Please keep us posted on how little Emma is doing. My daughter has had the TPN feeds before, but not for long. She's also had a central line for antibiotics and it was not too terrible to manage. She had a portable IV pump that fit into a bag about the size of a fanny pack, so it was portable. I was so afraid that I would snag it on something, but I never did, thank God!!!

[Guest tracey and emma]

Megan's is also a 14 French. We haven't had any issues withthe Mic-key button. I'm not familiar iwth the others you mentioned. I have changed the Mic-Key and haven't had any problems with it. The pureed avocado goes in great. I just mix it with the breast milk ahead of time and put it in with her feeds at night. We have a Ross pump and haven't had any problems with it going through. The Gerber chicken will stop up sometimes, but as long as the avocado is really ripe and soft, it goes through nicely. If she's eating things willingly, you might also get her to eat some. It's great in guacamole with chips. Let me know if you need a recipe.

What is Emma able to eat by mouth? Do you have avocados available where you live? I'm not familiar with MRSA. What is that? Sorry for all the questions.

The nutritionist is wanting Megan to go on Neocate because it has more calories that breastmilk. I'm willing to try it, but I still plan to pump and give her some breastmilk at least through aug. when her next heart surgery is scheduled.

I hope you're able to enjoy your Sunday. You just have to take it one day at a time. Please keep us posted on how little Emma is doing. My daughter has had the TPN feeds before, but not for long. She's also had a central line for antibiotics and it was not too terrible to manage. She had a portable IV pump that fit into a bag about the size of a fanny pack, so it was portable. I was so afraid that I would snag it on something, but I never did, thank God!!!

I am so sorry i have not got back to you i did read your post but have had a week and a half.

We are increasing emmas neocate strenth from 15% to 17% was the desision made on monday but she has never tolerated this before so i am not sure she will this time!......... time will tell.

If this fails then i am going to put in avercardos i have bought some ready! thanks!

For the time being we are going to try this route and avoid IV feeding but if she does not start to improve in 2mths there will be no choice. so fingers crossed.

Emma can eat normally the problem is the more she eats the more dihroea she gets, the more weight she loses catch 22!!!! The neocate is good as it is part digested already and is easly obsorbed. Emma still has a few problems with it but she is the only child i know of that has, and she does not lose weight on it but does not gain eather..... but better than losing.

MRSA is caught mainly in hospitals, it is very contagous amongst people that are already sick if you are a normal well person you will never be efected 25% of peolpe carry it in there noses all the time with no effect. you or i probably carry it but it should not cause any harm.

It if you contract it for instance around emmas peg tube area, it looks like an infection but continues to get worse and they told me the hole would never heal up, in fact our nurse in the UK said "i have kids and adults with holes in them every were" the problem is that it can be antiboitic insensetive. so in some cases there is no cure and it can be fatal. They do not have it in the swiss hospitals but it is all over the UK hospitals they call it the supper bug! In emmas case it was antibiotic sensitve but next time if ever contracted again it would not be!

The stupid thing about it is, all it takes to prevent it is washing your hands properly! and having a clean hosptital. and anyone with it being put into isolation whilst in hospital. So it comes down to hospital staff cleaners and being on the ball yourself, if it is in the hospital!

Can megan eat normally?

thanks for your help

Tracey

[TCA]

I'm so glad that Emma can try to get a bit better before trying the IV fluids. I know you must be relieved. Did they leave her on the gluten-free diet? How long has she been gluten-free now? It took my son about 3 weeks for the D to stop. I do hope she will feel better soon.

The avocado is a bit constipating to Megan, but that may be a good thing for Emma. I just add Gerber baby food prunes to the mix to help with that and it works great. Remember that the avocados need to be very ripe and soft or they will clog up the tube.

All of the experts here say they have never seen a child like Megan, but it sounds like she and Emma have a lot in common. Was she breast fed as a baby? When did her issues begin? I'm just curious, I hope you don't mind my asking.

I'm so sorry aboutt he MRSA infection. I know that must be terrible. I have had to ask nurses to wash their hands before when coming into Megan's room. Some are great, but I wish all would be more proactive with hand washing. It oftentimes is the most critical part of a patient's care.

Megan has severe choking and gagging issues that the drs haven't been able to diagnose yet. She has a sliding hiatul hernia and an extremely sensitive gag reflex which contribute, but we're not sure why it happens all the time. Because of this, she is not able to handle any foods, even baby foods. That is why is mix the avocado with the breast milk to get it down her. She does take a few bottles a day with about 45 ml. I mix in a little rice cereal too for extra calories and that seems to be going well.

Please keep me posted on Emma's progress. I've been praying for you both and hoping that something will work for you soon.

[Smunkeemom]

shortly after my daughter was diagnosed she was on TPN tube feeding, she tolerated it well, if i remember correctly she was on it like 20 hours a day. She only had to do it for 2 weeks, then she was healthy enough to eat. We did a lot of pediasure at the begining. It did take a full 6 months for her to regain her weight though.

[AllForEmily]

Your daughter is not the only one having issues with Neocate! I've been searching the internet for other parents of children who cannot tolerate the new version (the gold can), and we are out there!

My baby vomits and has diarrhea if she does not have the old formulation of Neocate Infant (the yellow can). Try to get the old formulation and see if that helps your daughter tolerate it. It is very limited, so you will have to call the manufacturer directly to get it.

I am also trying to get together a letter-writing campaign to SHS (the manufacturer) to bring back the old Neocate Infant. Once I get that together, I will post the address.

Fran