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    Do you have questions about celiac disease or the gluten-free diet?

KayJay

Ever Had A Baby That Couldn't Tolerate

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I had the same problem as Diane with my first: blood in stool, dairy free diet for myself, nursing until I was pregnant again and he was almost 20 mos. Our 2nd child was bvornm with a congenital heart defect and had open heart surgery at 9 days old. She's now 9 mos. and will have another surgery in april. The nutritionist kept pushing formula even though I was pumping and giving her BM through a feeding tube. They wanted to provide her with more calories and they almost killed her. After 4 months of unbelievable GI issues, a nissen procedure to stop reflux that came undone in a month, and no weight gain, I went against all the doctors wishes and took her off of all supplements and gave her only BM. This helped, but she still had issues, like blood backing up into her feeding tube from her stomach. I tried to get the doctors to listen when I suspected Celiac, just as we did in our son and everyone wanted to blame her issues on her heart. Again, I ignored their advice and went on a gluten free diet myself and gave her exclusively BM. She gained 17 ounces in the first 2 weeks. It was amazing at the difference in her personality and health. She was extremely anemic and had to have many transfusions and no one really had an answer as to why. Her last blood work showed her hematacrit and hemaglobin levels to be through the roof and the only thing we can attribute it to was the gluten free diet and only BM. My advice - follow your gut and treat your child. I too was having trouble with production and rented a Medela Symphony. It has increased my procduction by 50%. I highly recommend it. Also - drink LOTS of fluids. It makes all the difference. We recently started my son on a gluten free diet, even after a negative biopsy and he is not having diarrea for the first time in his life. Some of his enzymes were elevated, but the biopsy was negative, but I just know he has it. The gluten-free diet is proving it now.

Good luck!

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Oh TCA that sounds so horrible! I am glad that you got things figured out. It must have been so scary.

Well Maddie went to the Ped. GI doctor today. He was very informative. ) It looks like she has an intolerance to protein found in soy and milk. It a long drawn out deal but basically we are going to slowly introduce this new formula to her to see how she tolerates it. And after 6 weeks or so we might move on to some food. Again it's a very slow process. I am going to continue to breastfeed too. He said it was too early to tell if she was allergic to soy but since she was shaking and all it would be good to stay away from it right now and introduce it later on down the road.

The good news is she is growing and thriving and a happy baby so I am glad that we caught this early and have time to work on it before any long term damage was done.

He said that babies have leaky guts and in the first year it is important to protect them from damaging their intestines. He said no wheat for at least a year.

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I just wanted to let you know that niether of my kids could tolerate ANY of thr formulas, enen the hydrolysed protein ones like Pegestimil, Nutramigen, etc. Projectile vomiting and listlessness were the primary responses.

FYI - I had started cutting back on my fat intake to try to lose some weight and my milk production dropped a lot. Wanted to pass along that you might want to take in moe calories. No dieting for now and this baby fat is loving my hips......

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I just wanted to let you know that niether of my kids could tolerate ANY of thr formulas, enen the hydrolysed protein ones like Pegestimil, Nutramigen, etc. Projectile vomiting and listlessness were the primary responses.

FYI - I had started cutting back on my fat intake to try to lose some weight and my milk production dropped a lot. Wanted to pass along that you might want to take in moe calories. No dieting for now and this baby fat is loving my hips......

Thanks I haven't tried the formula yet but I may have to. The doctor told me to wait a little bit but today we were back at her regular ped. office. She has been screaming and crying for 3 days straight. I thought maybe her ears were the problem but they look fine. They think it is her tummy. She lost half a pound in less than a week. It's not a big deal but still she should be gaining weight.

Thanks for the info. about dieting. I haven't been but I will try to add some more calories to my diet. It's hard to remember to eat when the baby is crying non-stop :(

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I know you already have tons of great advice form the other posters, but I have alittle more to add. My child is now 10 mths old. From birth I nursed and gave one bottle of formula a day to give me a break from the constant nursing. I stopped nursing 3 mths ago and what a disaster that has been.

First the baby always showed signs of milk problems/allergy so we have used Soy formula. Once I stopped nursing she got a ear infection and burst ear drum with in the first mth of formula only. The second month of formula only she got a TERRIBLE diapper rash that responds to nothing. Now three months into the formula only thing I wish I was still nursing. It looks like we have a food allergy but I can't figure out to what. The diaper rash will go away once in a while and then the next day her butt is practically bleeding and it takes forever to heal. She has been pulled off all table foods and she was eating like a champ before.

My advice is to contact the LaLechee League to get advice about how to produce more breast milk. (I hated pumping) They can help increase the amount of milk you produce. Rent a good pump if you decide you need one. Personally I would fight hard to increase your milk flow and keep the baby off all formula until things settle down. Also avoid any and all suspected allergens in your diet while nursing. I know it is really hard but good luck.

Another thought is to go to an Herbalist /Kinesiologist (sp?) and see if they can help. We were really happy with the relief from colic using herbs. Some are great for babies in that they cannot OD on the product. Other herbs you need to be careful with. The Kinesiologist will test the baby (non-invasive and immedite results) with each herb.

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I know you already have tons of great advice form the other posters, but I have alittle more to add. My child is now 10 mths old. From birth I nursed and gave one bottle of formula a day to give me a break from the constant nursing. I stopped nursing 3 mths ago and what a disaster that has been.

First the baby always showed signs of milk problems/allergy so we have used Soy formula. Once I stopped nursing she got a ear infection and burst ear drum with in the first mth of formula only. The second month of formula only she got a TERRIBLE diapper rash that responds to nothing. Now three months into the formula only thing I wish I was still nursing. It looks like we have a food allergy but I can't figure out to what. The diaper rash will go away once in a while and then the next day her butt is practically bleeding and it takes forever to heal. She has been pulled off all table foods and she was eating like a champ before.

My advice is to contact the LaLechee League to get advice about how to produce more breast milk. (I hated pumping) They can help increase the amount of milk you produce. Rent a good pump if you decide you need one. Personally I would fight hard to increase your milk flow and keep the baby off all formula until things settle down. Also avoid any and all suspected allergens in your diet while nursing. I know it is really hard but good luck.

Another thought is to go to an Herbalist /Kinesiologist (sp?) and see if they can help. We were really happy with the relief from colic using herbs. Some are great for babies in that they cannot OD on the product. Other herbs you need to be careful with. The Kinesiologist will test the baby (non-invasive and immedite results) with each herb.

Just wanted to let you know that you can relactate with a pump. Not fun, I know, but sometimes it may be the only option. I'm writing this as I pump, so trust me, I know

! :blink:

I know this may sound crazy, but I have a TON of breast milk in the freezer that I just can't bear to throw out... all those hours of pumping!!! We found out my daughter had Celiac and I can't give that to her because I was ingesting gluten at the time. If KayJay or you can use it, let me know. I'd love to help you out if I could. I promise that I am fanatic about cleanliness. I was also dairy free while pumping because at first we thought it was a casien intolerance. I wasn't on any drugs at the time either. Sorry if this is too hair-brained, but I can't stand the thoughts of your babies being so sick. PM me if you're interested.

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When my son was an infant, be used to projectile vomit everytime he had formula whether it be soy or milk based. They ended up putting him in Nutramigen formula. I forget which company makes it. I believe, bare with me it has been 5 years, that it does not have milk protein in it. I can't remember for sure. But he was on it until he was a year old. Very expensive though. Good luck.

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hapi2bgf- Oh wow that sounds horrible. Just curious how did she tolerate one bottle a day of formula? Could you tell me what symptoms she had etc. with that approach? Right now I only give Maddie 2 oz tops of formula.

TCA thank you for the offer but Maddie has to stay off Gluten and soy as well. I know they have some donor banks though. They can give your EBM to premie babies that are real sick. If no one else can use it look in to that. It is great you have so much stocked up!

I have been working hard on my supply the last couple of weeks. The other day I could pump enough for one feeding only after 3 hours of not nursing. That was a first! :D

Maddie has good and bad days she is currently trying out the Nutramigen formula. She does okay on that but her eczema is starting to come back and her tummy gets puffy after she eats it. Of course she has reflux so this week the doc. wants us to try the formula and zantac because some of her symptoms sound like reflux. I guess it is just hard to tell. I am weary about giving her the formula. I can't explain it but deep down inside I have a feeling she isn't tolerating it so well. I have learned to listen to those thoughts. She goes to the doc. next week for her 6 month check. Her ped. called Monday to see how she was doing. I thought that was real nice. She talked to me for awhile too. :) They may do a stool sample and check for blood soon. We are talking about that more next time.

Maddie hasn't had in formula in over 24 hours. I think her tummy looks like it usually does. Is it crazy for me to measure it and then measure again after she takes some formula? Sometimes I feel like I am a paranoid parent. But I guess we have to do what we have to do right?

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I have celiac and a milk allergy. I can tolerate some milk products but for the most part I stick with soy. My dh is allergic to peanuts and he can't tolerate soy milk at all. Although soy in products does not seem to bother him.

I breastfeed our 5 month old but my supply seems to be dropping lately so I have been supplementing with formula. Only about 2 a day. She gets 3-4 oz total a day. Well, we tried the milk based kind and she would scream so much because it hurt her tummy so we went to soy. Now about a month later she tolerates the formula great tummy wise but I have noticed that she gets trimmers after eating the soy milk. I think they are getting worse. Last night it really started to scare me and I put two and two together and realized that it was the formula causeing her to do that. THen my dh says that is what happens to him when he drinks soy. So this morning I call the doctor and they said to go back to the milk based and see what happens. It is a different brand so it may make a difference but what if she can't have either one? What else is there?

Your post was written a few weeks ago but if you would like help on increasing your supply I am a lactation consultant and could give you some ideas. I know that maintaining a milk supply can be difficult for some people and some situations. There is research that shows the HUGE impact breastfeeding has on preventing celiac so please don't give up. Let me know if I can help you at all.

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