Preemie Infant Allergic To Rice?

[averyannsmom]

Hi,

I'm new here. My DD was born very early due to severe preeclampsia. She was 2.5 lbs and 15.5 inches long. Today she is 7 months old and weighs 12lbs. At 3 months she started having abdominal pain and gas, screaming everytime she ate. We switched from breastfeeding to soy formula, then to lactose free, and ended up on alimentum (hypoallergenic). She was diagnosed with GERD/acid reflux and put on medications and told to put baby rice cereal in her bottle to keep the acid down. This helped, but the formula never seemed to comletely agree with her tummy. Now at 7 months she has dropped from the 50th%tile in weight and length to the 25%tile, and for the past 4 weeks she has been having runny, watery diarrhea and mucus type stools. She was tested for absorption and they said she was absorbing fat properly, but that her stools were acidic meaning she wasn't absorbing carbs/lactose/sugars as well. Doc told us to give her lactaid with every bottle, HOWEVER, her formula contains no lactose....and it didn't work. They tested her fro simple stomach bugs and those were all negative.

This all started happening when I gave her baby OATMEAL in her bottle one day instead of rice...thinking htr oatmeal to be healthier. She screamed in agony for the day and we went right back to rice. After getting no where with doctors who just want to watch her longer, even though it's been a month, I decided to remove the rice from her bottles, by the next day her stool was normal and again the following day. Doc said that maybe we triggered some reaction with the oatmeal and she is possibly gluten intolerant or has celiac. I am supposed to find out tomorrow if they want to do a blood test or not. In the meantime though, her stools have gone back to mucus and diarrhea. I'm wondering if these are just after effects of the body trying to heal itself.

After looking over lots of research and info on the web, I'm finding that a lot of symptoms that I have of Fibromyalgia (since I was 4 years old), sound like they could be celiac instead. I am one of the overweight people....and hungry all the time, particularly when I eat carbs. I also have a hard time digesting meats and proteins. My midwife suggested I try a wheat free diet months ago when I was pregnant, but she didn't really say why, so I didn't.

Anyone with information, suggestions, or thoughts, I would apopreciate it. I guess I will have myself tested too! Do these symptoms sound familiar with what other kids have had?

Kara

[Guhlia]

Your daughter (minus the premature birth) sounds almost exactly like my daughter at that age. My daughter was always very gassy, spit up constantly, could not handle formula, and had bloody diarrhea all the time. Though she never really seemed like she was in pain, she was ALWAYS hungry, even after she just ate.

We ended up putting her on Neocate, a prescription formula, and that seemed to help for the time being. Once we started introducing solids, she always spit up much more on oatmeal, so we stuck mostly to rice cereal. I was still undiagnosed at this time, though I was also becoming very sick. She was in the 99th percentile up until about 7 months when she fell into the 20th percentile. Ugh... We strongly suspect that she has celiac, but have not had her tested. She has been gluten free for a few months now (since our househould is gluten free) and she's doing very well with it. She's 2 years old and thankfully the spitting up stopped about 8 months ago.

I don't have any real advice for you. I just wanted you to know that you're not alone. Don't let the doctors make you feel neurotic. I would continue to push for answers until you have them. Good luck! I hope you can figure out what's going on with her soon. Also, you should really get tested for Celiac because your symptoms are pretty classic.

[averyannsmom]

Thanks for the reply! It's good to hear that there might actually be a reason for all of this. I am switching pediatricians because he is highly conservative (which can be a good thing), but it takes him at least a month to get to the bottom of any problem. And he always comes across that I'm over reacting. Ijust don't think that "waiting: is an option after a month of diarrhea and mucus. She has not had any blood, but I think she would if we had her on regular formula. I would like to switch to neocate...just to see if it helps. She was eating baby food when this started (veggies & fruits) and we stopped those even and it didn't make a difference. Our daughter is nevere hungry and is eating a lot less than she should (only 15oz/day), but since cutting out the rice she is eating closer to 20oz.

As for me I always got puzzeled looks from docs when I tell them I was diagnosed with fibromyalgia when I was 20, but have had the symptoms since I was 4 years old(mostly extreme fatigue, and muscle/bone/joint pain and IBS). I'm starting to think it's not fibromyalgia, or not entirely at least. Preeclampsia is also an autoimmune problem, so I wonder if they all tie. I'm tall 5.9, but most of my family is tall. I'm gnerally 20-30lbs overweight.

Thanks again for your reply. Can you reccommend any books about gluten free diets?

Kara

Your daughter (minus the premature birth) sounds almost exactly like my daughter at that age. My daughter was always very gassy, spit up constantly, could not handle formula, and had bloody diarrhea all the time. Though she never really seemed like she was in pain, she was ALWAYS hungry, even after she just ate.

We ended up putting her on Neocate, a prescription formula, and that seemed to help for the time being. Once we started introducing solids, she always spit up much more on oatmeal, so we stuck mostly to rice cereal. I was still undiagnosed at this time, though I was also becoming very sick. She was in the 99th percentile up until about 7 months when she fell into the 20th percentile. Ugh... We strongly suspect that she has celiac, but have not had her tested. She has been gluten free for a few months now (since our househould is gluten free) and she's doing very well with it. She's 2 years old and thankfully the spitting up stopped about 8 months ago.

I don't have any real advice for you. I just wanted you to know that you're not alone. Don't let the doctors make you feel neurotic. I would continue to push for answers until you have them. Good luck! I hope you can figure out what's going on with her soon. Also, you should really get tested for Celiac because your symptoms are pretty classic.

[Guhlia]

Kara, I would say that you definitely need to get tested for Celiac. I too was diagnosed w/ Fibro and always had a very long list of odd ailments. Everyone just thought I was a hypochondriac. Now, after two years gluten free, I am finally feeling "normal". I don't need vicodin several times a week for neck pain, I went off the muscle relaxers AND the cymbalta (which was prescribed for fibro). I still get migraines, but that's about the only thing that still bothers me off all of the problems that I had pre-dx. If you have Celiac, you will feel SOOOO much better on a gluten free diet.

I would recommend getting "Living Gluten-Free for Dummies" and I would strongly recommend buying yourself a cookbook BEFORE attempting the diet. I swear by my "Incredible Edible Gluten Free Food for Kids" cookbook. I actually prefer most of the things in that book over the gluten-filled item.

If you're going to try Neocate, make sure that your pediatrician submits a request to your insurance company. Some insurance companies will cover it completely, others will co-pay, and others won't cover anything. Thankfully ours covered the costs completely.

[KayJay]

My baby wasn't pre-mature but she can't tolerate soy or milk at all. Long story short gerber rice cereal has soy in it. Just a thought.

[averyannsmom]

Thanks for the book suggestions. I am supposed to hear from the gastro nurse today about having DD tested. I will get tested to. I used to eat those muscle relaxers every night, and tried tons of medications for the fibro and nothing ever worked....maybe I know why now.

I was wondering how fast the gluten-free diet works, but I imagine it coincides with how long you've eaten gluten. So shorter for my dd and longer for me. Though I suppose you will feel some change in a matter of weeks. It does seem like a daunting challenge.

Thanks for your help!

Kara

Kara, I would say that you definitely need to get tested for Celiac. I too was diagnosed w/ Fibro and always had a very long list of odd ailments. Everyone just thought I was a hypochondriac. Now, after two years gluten free, I am finally feeling "normal". I don't need vicodin several times a week for neck pain, I went off the muscle relaxers AND the cymbalta (which was prescribed for fibro). I still get migraines, but that's about the only thing that still bothers me off all of the problems that I had pre-dx. If you have Celiac, you will feel SOOOO much better on a gluten free diet.

I would recommend getting "Living Gluten-Free for Dummies" and I would strongly recommend buying yourself a cookbook BEFORE attempting the diet. I swear by my "Incredible Edible Gluten Free Food for Kids" cookbook. I actually prefer most of the things in that book over the gluten-filled item.

If you're going to try Neocate, make sure that your pediatrician submits a request to your insurance company. Some insurance companies will cover it completely, others will co-pay, and others won't cover anything. Thankfully ours covered the costs completely.

[Becky6]

How many weeks was she? My daughter was born at 33 weeks weighing 2 lbs 12 oz and 15 3/4 inches due to severe pre-e and HELLP syndrome. She began having messy diapers right away with mucus and awful diaper rashes with blisters. She was lethargic and became anemic at 9 weeks. She cried in her sleep from leg pains even as an infant, had constant sinus infections and a runny nose and cough. She seemed to follow a nice curve so they didn't worry. But she was always at 3%. Finally we thought it was dairy. Taking out the dairy helped some but not fully. She was really getting behavioral and still was only 26 lbs at almost 4. We finally got her gluten-free and she has now gained 5 lbs in 5 months and all of her symptoms are gone. I am now gluten-free and all of my long laundry list of symptoms are gone as well. I would say it is a good chance that you both could have celiac.

[averyannsmom]

Hi Beacky,

She was a 31 weeker, with some growth restriction also due to Severe Preeclampsia. She probably should have been born at 29 weeks and we both wouldn't have been so ill. Glad to hear your daughter is doing well now.

I gave her breast milk until about 8-9 weeks and she started having terrible screaming fits. After cutting out dairy in my diet she still wasn't better so we tried her on soy...that worked fro about 3 days before we were back to the screaming fits anytime she ingested anything. So on to lactose free...still screaming. Finally we went to alimentum and that has been "just ok". They dx her with acid reflux and the meds seemed to help with the actual vommitting and spitting up, but not with the stomach pains and gas. We bought gas drops by the case! That helped only a bit. Now, 4-5 weeks ago started the nasty mucus diapers. Once I took the rice away her diapers were immediately better, but then after a few days are back and forth, but I imagine it will take a little time if the rice was doing some damage.

I'm taking her in tomorrow to the children's hospital for blood testing. They are checking for: rice, wheat, oats, eggs, peanuts and dairy. I also asked them to check for gluten and they said they would do a full celiac panel. I should have asked them to check for soy as well...if that's something they can check??? Yeesh! Anything else I should have them check for while they are drawing blood? They said it may take a week for the results to come back...I dunno if I can wait that long. I guess in the meantime I will get tested too.

Do you ever post at the Preeclampsia Foundation web board? We are on their all the time. I guess they are both autoimmune...wonder if there is a connection.

Kara

How many weeks was she? My daughter was born at 33 weeks weighing 2 lbs 12 oz and 15 3/4 inches due to severe pre-e and HELLP syndrome. She began having messy diapers right away with mucus and awful diaper rashes with blisters. She was lethargic and became anemic at 9 weeks. She cried in her sleep from leg pains even as an infant, had constant sinus infections and a runny nose and cough. She seemed to follow a nice curve so they didn't worry. But she was always at 3%. Finally we thought it was dairy. Taking out the dairy helped some but not fully. She was really getting behavioral and still was only 26 lbs at almost 4. We finally got her gluten-free and she has now gained 5 lbs in 5 months and all of her symptoms are gone. I am now gluten-free and all of my long laundry list of symptoms are gone as well. I would say it is a good chance that you both could have celiac.

[shai76]

My son also was born early and had reflux and feeding issues. He was only born a month early at 6 pounds, so he wasn't as small as your baby. I also tried the cereal in his bottles but it made his tummy worse! He was bloated and crying a lot, and he would choke more on his reflux because it was harder to get the thickened formula out of his throat. When I took him off the thickened bottles I saw a huge improvement in his symptoms. When I started feeding him solids I just did it with a spoon and I started him on vegetables instead of grains. Mashed carrots and green beans are a good start. If you noticed your little one does better off the cereal you should go by her symptoms and keep her off it for now. It just might be too much for her little tummy to handle.

Also, are you giving her Alimentum Ready to Feed or the powder? The powder has corn syrup solids in it which is more difficult to digest. The RTF is the only formula that does not have the corn in it. I know it's more expensive, but if you meet the guidelines you can get a note from your doctor and see if WIC will help pay for it. They did for me and it saved me $200 a month. Also, some prescription plans cover it sa well if it is medically necessary.

Here's a link to another site that helped me out: Open Original Shared Link

[Becky6]

I think I was on that board a while ago. I did post on the HELLP board for a while though. I should of had her weeks earlier. We both almost died that night as my body was shutting down. We had stock in those gas drops too! It was terrible! Just to let you know that the celiac panel could come back neg. It is common to get false negatives in children. So if it is neg don't rule it out. Hang in there!

[averyannsmom]

hanks! I thought it might be negative in her since she is so young...but I am going to get tested too, then we will know if it is more likely.

My body was shutting down when I went in to the hospital...kidneys especially. My liver enzymes weren't awful like in help though. My platelets were not good though. Still trying to decide if we will have another child in the future or not.

Kara

I think I was on that board a while ago. I did post on the HELLP board for a while though. I should of had her weeks earlier. We both almost died that night as my body was shutting down. We had stock in those gas drops too! It was terrible! Just to let you know that the celiac panel could come back neg. It is common to get false negatives in children. So if it is neg don't rule it out. Hang in there!

[Guhlia]

IF you have celiac, you will want to discuss with your doctor the likelihood that celiac disease was the actual cause of your maternity problems. I had a rough pregnancy and I'm pretty certain that it was due to celiac disease. I didn't have all the health problems though that you had. I believe preeclempsia is related to undiagnosed celiac disease. Don't quote me on that though. I could definitely be wrong.

[averyannsmom]

Right. My pregnancy was a bit rough. I lost 16 pounds in teh first 5 months. I couldn't stomach anything....just the thought of food made me ill. And when I did manage to eat something, it only stayed with me for about 20 minutes. My midwife prescribed a digestive enzyme which did help a bit. I ended up only gaining about 10lbs...until the severe pre-e set in...then I gained 20lbs in fluid overnight.

K

IF you have celiac, you will want to discuss with your doctor the likelihood that celiac disease was the actual cause of your maternity problems. I had a rough pregnancy and I'm pretty certain that it was due to celiac disease. I didn't have all the health problems though that you had. I believe preeclempsia is related to undiagnosed celiac disease. Don't quote me on that though. I could definitely be wrong.

[shai76]

I had preeclempsia too, with the kidneys shutting down and all that. I wonder how many other women with celiac have had the same experience?

[TCA]

I also had preeclampsia with my first, but not my second. He was born very skinny and had problems from the beginning. My second pregnancy was uneventful and my daughter was chubby. She had a heart defect that required surgery. I think the surgery set off her celiac. I have had the joint pain issues all my life with no diagnosis, but since going gluten-free for nursing my daughter my symptoms are gone.

I know it is a pain to even mention this, but I speak from experience. My daughter can't handle ANY formulas, not even Neocate. I went gluten-free and pump for her and it has made all the difference. If you are willing to pump and relactate I think you will be amazed at how much it helps. I'm also egg and dairy free for her because of allergy testing RAST results.

I do hope she feels better soon.

[averyannsmom]

I was breast feeding her when things started to go wrong at 2 months old. I cut out dairy and it did nothing. I was told to cut out: dairy, soy, protein, citrus...still nothing, even after reflux meds. It got so frustrating that every time she ate she would scream in pain for hours. I gave her the alimentum and we had relief...mostly.

Now of course we are having the chronic D, no appetite, not growing well, clingy, fussy, only wants to be held and onlt by mommy. It's been 4 months since I stopped pumping (i pumped and froze it for awhile), so relactating is not an option.

Hopefully the RTF alimentum or neocate will help her.

I also had preeclampsia with my first, but not my second. He was born very skinny and had problems from the beginning. My second pregnancy was uneventful and my daughter was chubby. She had a heart defect that required surgery. I think the surgery set off her celiac. I have had the joint pain issues all my life with no diagnosis, but since going gluten-free for nursing my daughter my symptoms are gone.

I know it is a pain to even mention this, but I speak from experience. My daughter can't handle ANY formulas, not even Neocate. I went gluten-free and pump for her and it has made all the difference. If you are willing to pump and relactate I think you will be amazed at how much it helps. I'm also egg and dairy free for her because of allergy testing RAST results.

I do hope she feels better soon.

[averyannsmom]

Thanks for telling me about the ready to feed allimentum formula. IT definitely made a huge difference in the "outcome" of DD diapers. More like normal, but still not quite right. Test results should come back on Wednesday, but they didn't test for corn...and it is the corn oil that is missinng from the rtf formula. So maybe we are on to something.

[shai76]

Thanks for telling me about the ready to feed allimentum formula. IT definitely made a huge difference in the "outcome" of DD diapers. More like normal, but still not quite right. Test results should come back on Wednesday, but they didn't test for corn...and it is the corn oil that is missinng from the rtf formula. So maybe we are on to something.

My son is allergic to corn, so that is how I knew about it. The doctor at the time thought I as nuts when I told him about it. but my husbands whole family is very corn sensitive so it came to mind. You might want to check ingredients of other things too, but I bet with time she will start to feel better. Give her time to heal. I hope they really get to the bottom of it all.