Can't Figure Out What's Wrong With Our Baby

[TalyQ]

Hello, I am a new member. I dont' know what category to post this, since we do not have a definite diagnosis of any kind. It's mainly about my 12 week daughter. But first let me give a very brief background.

We live in Serbia (Europe) and have 6 children. We lived twice in the US.

1st daughter (15) - breastfed 1,5 years - a little small weight gain as a baby, but no other health problems ever

2nd daughter (12) - breastfed 8 months - had often colds when little, but no other health problems

3rd daughter (10) - breastfed 7 months - no problems as a baby, now problems with frequent diarheas, not growing like her older sisters, often sick, feels like throwing up and has stomach pains - in the process of being tested for various allergies

4th daughter (8) - had serious problems as a baby (we were in the US at that time) At two months she vomited for a week and was admitted to the hospital for dehydration; then she started having diarrhea - frequent stools that were clear and green in color; they only pushed liquids through IV, I continued nursing her, it didn't improve; then they tried anti-diarrhea formula - no change; finally transfered us to Hershey Medical Center, there gastroenterologist put her on Nutramigen and she finally improved; I was told to start avoiding dairy and soy and pump milk; a few weeks later we tried going back to breastfeeding, but never made it completely back; as soon she got more my milk, stools would get worse, she would be worse; so I continued pumping and mixing a bit of my milk into the formula until 6 months; then I got tired of it and instead gave her three full bottles of Nutramigen a day and nursed the rest of the time; she started solids (but no dairy) at that time; she got better and better - I continued nursing her till about 15 months and she started dairy about that time - no problems ever again

son (5) - breastfed 16 months - had some problems with green stools when little, but it went away on it's own, was a little smaller for a while, but nothing that would concern us or the doctors

5th daughter (12 weeks) - fine till 3 weeks, gaining nicely, then started having green mucous watery stools, lots of tummy ache; I went of dairy immediately, but nothing improved; took her to the doctor, was sent to the hospital to an allergy specialist; she told me to stay off dairy and eggs, admitted us to the hospital; they did lots of test, which all came back negative (she is not allergic to dairy), stools improved after a few days, we were sent home to continue breastfeeding; but she stopped gaining weight, so she was put on Allernova formula (same as Nutramigen - hydrolized), but refused to take the bottle; so I started to mix with expressed milk, she took it better, but never drank as much as the doctor says she needs to take; after two weeks we were allowed to go back to breastfeeding, her stools are pretty OK, but she is still not gaining much (like 2 oz. in two weeks). She seems healthy otherwise, but is now really behind in her weight. She still has stomach cramps although not as often. A friend on an email list suggested that I have a Leaky Gut and therefore am passing gluten to her and that's what's causing her problems. I suggested this to the doctor and she insisted that there is no way gluten can be in breastmilk and since Allernova has no gluten either that a celiac disease is out of question for now. Still I wanted to make sure that I am doing all I can for her, so I went on a no-gluten diet about 3 weeks ago. I dont' really see any improvement in her. I am nursing her and give about 2 bottles with the formula and keep pumping. She still doesn't take in even close of what she should (we have to measure her intake by weighing her before and after nursing) and gains only tiny bit. I am out of ideas what I can eat and wonder whether it's making any difference. The doctors don't want to test of anything else at the moment, but she is not well yet. I really dont' know what to do, so I was wondering whether anybody here has a suggestion for me.

I personally don't have any symptoms of gluten intolerance, except maybe a bit of low immunity. WOuld it make sense for me to get tested? Can a baby be tested? Would it help at all? Does anybody maybe have more advice about the leaky gut? I can't find my information on it with connection to breastfeeding on the internet. Most of what I read suggests that breastfeeding is the best prevention of all problems. Yet it seems that my milk is making my babies sick =(. And going on the hydrolized formula permanently is just way too expensive and she doesn't want to drink it anyway. And if it's the gluten and not the dairy, she probably doesn't even have to be on it. Would a regular gluten-free dairy formula be OK for her? But I really want to nurse her is at all possible.

We are seeing the allergy specialist in a week again and I want to be armed with new information and suggestions. I will be thankful for any advice. Sorry for such a long post, I just thought it would be best to give complete information. Thank you.

Natalija from Serbia

[gfgypsyqueen]

Wow...you have a lot going on! You have been through the early years of babies enough to know if something is not right with your child. If you feel it is not right, pursue testing as much as you can. Test to eliminate diseases and other things before just assuming Celiacs.

First, if you want to nurse, then aim for that goal. Nursing is good for the babies, but it is not able to cure or prevent everything. I think more gets passed in the breast milk than we think, but that is another issue. I would say check one item at a time. So, since the diet can't hurt you, research milk allergies (www.foodallergy.org) and you both avoid all milk products, even trace amounts and possible contamination. Milk/dairy can be really hard on Celiacs and the rest of the population. Keep a log for what she ate or how long she nursed and any changes in her behavior and stool. Also track her height and weight.

If the avoidance of milk/casein makes no changes in her, then start looking at the other food allergens. Talk to the allergist about getting her allergy tested for foods. Request a broad test of everything.

Request/demand that you daughter is tested (blood and biopsy) for Celiacs. She must be consuming gluten to show a positive reaction in the tests. But you can get her gene tested. Also, look into EnteroLabs for testign. No Drs are required. I don't know about you insurance, but in the US the deductibles for the biopsy and gene testing can be more expensive than paying out of pocket for Entero labs.

After you have pursued all testing and had the Drs rule out the other possible diseases, then you can remove the gluten from her diet (and yours if nursing) and track the changes.

So same thing goes for the other kids who are small, slow to grow, stomach compliants, etc. Try to get them tested for Celiacs. If not, remove a food from their diet and track the changes.

As for getting sick all the time, go to a health food store and buy some good vitmains for the kids and yourself. I used to be constantly sick. I got every illness that came into the state and I got it worse than most. After going gluten-free that got a little better. But after I started buying the vitamins from the healthfood store, I stopped getting sick so much. Now I might get a little head cold, but nothing major. I got liquid vitmains for th ekids from the health food store. Same result. They rarely get colds. They have bad ears (both have ear tubes), but otherwise healthy. So I am all about good vitamins.

I fought for years with Drs to get my youngest tested for Celiacs. I was told she CANNOT have it and every other possible way of saying NO. She is now gluten-free/CF and finally growing.

You asked about Leaky Gut. I amnot so sure of this one. I think instead of your intestines being tight, compact, healthy Vili the intestines with LeakyGut have big crators where things get caught in the intestines instead of being flushed out of the system quickly. That tends to make you sick and it increases the areas where nutrients are not absorbed.

Hope some of that helped.

[Fiddle-Faddle]

I disagree with the above poster only because tests for children under the age of 3 years are VERY unreliable. False negatives abound, and then what? Do you assume that baby is not gluten-intolerant or celiac if the test is negative when false negatives are so prevalent?

Going off gluten (both you and baby, and kids too, why not?) is FREE, you do NOT need a doctor's permission, and if celiac/gluten intolerance is actually the problem, then trying the diet is the fastest and most accurate test you can do.

HOWEVER--if something else is the problem, then you are back to square one, and you might be looking at things that are more serious.

I do agree that nursing is THE best option to feed the baby, and that whatever you eat passes through your milk. This has nothing to do with leaky gut--there is at least one study proving that gluten does pass into your breast milk. You might also do a search on this board for a thread called "Megan's gagging isn't getting better," which was posted by a mom of a baby with many major food intolerances. She was an engineer, and kept meticulous records of EVERYTHING she ate, and every reaction the baby had, and proved that the baby was consistently reacting to gluten in the breastmilk.

Is there any way you can avoid formula altogether? That can be confusing the matter further, as baby might be reacting to whatever the protein is in the formula (dairy or soy).

Another great resource here on this board is a member called Ursa Major, who is originally from Germany. She has had to deal with multiple food intolerances, both her own and her babies', and she knows more than any doctor I've ever met. I don't think she'd mind if you pm-ed her.

Allergy to dairy is tricky. Your child might not be technically allergic to dairy--but if gluten is a problem, it will destroy the villi in the lower intestines--and the villi produce lactase, which is what digests the lactose in milk. Or your child might have an autoimmune reaction to casein, which is different from a histamine allergy response (it's the same with celiac/gluten intolerance--most of us here are NOT allergic to gluten, but it has a deadly effect on our immune system, which is just as serious as an allergy).

I have a friend who lives in Serbia, and she says that she gets gluten-free bread at the corner bakery--don't know if that helps you!

Good luck, and good for you for nursing! Sounds like you have had a lot of tough times--I hope things get easier for you.

[AliB]

Of course gluten can get into the milk - maybe not the whole thing, but certainly components of it. Many on this forum have told how their babies got better when they themselves removed gluten and dairy from their diets. There may also be other things that you are consuming or drinking that are affecting the baby.

If you have low immunity that would suggest that you do have malabsorption issues and your gut is compromised with low-level damage even though you may not have any obvious symptoms.

It is becoming more and more apparent that it is not just gluten and dairy, but carbohydrates in general. We are consuming so much of it that we are not only over-feeding ourselves, but also the bad bacteria in the gut. If you ever suffer with Thrush, it is an external sign that you have systemic bacterial overgrowth - although people can have it without any external symptoms at all.

The bacterial overgrowth sets up problems within the body that can impact anywhere - they can even manufacture toxins that could be affecting your baby through the milk.

One way of defining it would be to completely avoid all complex carbohydrates, dairy and processed foods for a while to see if it makes any difference to your baby's toleration of your breast milk. Stick to a very basic diet of fish, fowl and meat, fresh fruits and nuts and most vegetables (not potatoes or other root vegetables except carrots), honey for sweetening (no sugar) and well-fermented (24hr) yogurt (the lactose and casein is broken right down and high cultures of good bacteria are created). No grains or starches of any kind.

It is quite limiting but it is limiting carbohydrates that our bodies cannot cope with properly. Because of your own malabsorption levels, it is possible that the problems your other children have had is due to you not having the level of nutrients that their bodies needed for growth during and after gestation, then being compounded by their own malabsorption issues when they started to eat solid food full of carbohydrates. It seems perhaps that your nutrient levels have continued to diminish with each successive pregnancy.

Hopefully by doing this for a while you would see not only a restoration of your own immunity and nutrient levels but also of your baby's feeding and nourishment levels. We don't see the levels dropping until we get to the point where our body responds to the lack by developing an illness or disease of some kind.

I do hope you manage to get this sorted one way or another. It is bad enough when we are sick, but when it is our children we feel so helpless at times.

[Nancym]

Gluten DOES pass through breast milk, we saw a study here awhile back that proved it. Try going gluten free and see if that helps.

[TalyQ]

Thanks you for all the responses. I am really puzzled at this whole thing. I have been dairy and egg-free for let's see about 8 weeks now. I also avoid all processed food because of additives and preservatives. I went completely gluten-free over 3 weeks ago and must say that I do not see any positive changes. True her stools are not frequent, green and mucous anymore, but that started improving before I went off gluten. I don't know about going completely carb free. I tried that a year ago before being pregnant for weight loss reasons and felt pretty horrible. Besides in this season, there are so few fresh things available that I don't know what I would eat. I live on rice and potatoes at the moment.

My immunity has also gone down drastically since I am on this diet although I eat enough. And my little girl has had more cramps in the last few days, is very cranky and is still hardly gaining anything. If dairy and gluten would be a problem, woudln't she be better by now? She doesn't consume enough milk (or not as much as I am told she is supposed to). The formula I do give her in addition to breast milk is hydrolized so it does not contain milk protein, lactose or gluten. So it should actually help her. And it's the only one they are going to allow her if she doesn't breastfeed at all.

As far as testing, I will look into it. But since I have been off-gluten for a while now, I guess it would not help for the two of us. Maybe just for my 10y. daughter who is eating everything. I really dont' know whether I am going in the right direction with this or if it's something totally different. The only thing that gives me hope is my completely healthy 8 year old who went through worse and grew out of it, although we never figured out what bothered her.

Thank you.

[Fiddle-Faddle]

Many here are intolerant to soy--could that be a problem? Is your formula hydrolyzed soy protein? Hydrolyzed protein can still cause a reaction if it is from a source your baby is sensitive to--otherwise, they would just hydrolyze gluten and we could all eat it!

There are also some who are sensitive to rice and potatoes, too. Potatoes are in the nightshade family, which more people seem to have a problem with. Ursa Major is one of those--try PM-ing her, as she has done quite a lot of research on it, in addition to having had unfortunate personal experience.

One other thought occurred to me. My first baby had some green, frothy, mucousy stools and gassiness and cramping when he was around 3-4 months old.. It turned out that there were two problems going on, both related to breastfeeding, but both easily correctable.

One is that I had what is called a "hyperactive let-down." The let-down of the milk would be stronger than what he could handle, and he would choke and sputter at first

The other problem was that he was getting too much foremilk (partly because of the hyper-active letdown, partly because this business about nursing on both sides at each feeding is not necessarily correct).

The fix for both was to nurse him only on one side at a time per feeding. That way, he emptied the breast completely, and got more of the richer, fattier hindmilk. The foremilk is higher in sugar, I think, and that would ferment in his tummy, and that's what caused the green stools.

I ended up feeding him about twice as often, but I didn't care. It was easier for him to nurse, and he was far less gassy and fussy. Happier baby=happier mama.

This was something that the lactation consultant had not seen before, but luckily, she remembered reading about it, found the reference, sent it to me, and explained it all. (Otherwise, I would have had no idea about hindmilk, foremilk, and the whole shebang.)

In my case, it seemed to be because I had been pumping extra milk whenever I could because the doctor (mistakenly) said that I didn't have enough milk. What all that pumping did was make my breasts produce more milk--which meant that the flow and volume was more appropriate for a much older and hungrier baby.

Once I switched to nursing on only one side every hour or so, his stools went back to the mustard-colored toothpaste type, and smelled a whole lot better, he was more comfortable, and he grew better.

I hope it ends up being something relatively simple like that for your little one, too!

[AliB]

Sometimes their little digestive systems just aren't mature enough to cope with all the food we have.

You say that you are living on rice and potatoes at the moment. Could you try substituting those for some different carbohydrates to see if it makes any difference?

Can you get hold of things like carrots and other root vegetables - turnips, parsnips etc. and try having those instead of the rice and potatoes?

It seems that because her stools improved after you changed to dairy-free she may have a problem with di-saccharides which would include dairy (lactose) and sugar. Could you try limiting your sugar intake too for a week or two to test that out and have honey instead? That might link in with the previous post too, that the sugar in your diet could be causing the baby a lot of gas and discomfort through the milk. If the hydrolised formula also contains sugar, that too could be the problem with that.

Mono-saccharides like honey, fruit, most vegetables other than root veg (although well-cooked carrots are fine), and well-fermented yoghurt (over 24 hours to ensure the lactose and casein is broken down) should be better tolerated than the di and poly-saccharides.

This is a difficult one - it must be very frustrating and worrying for you, especially when she is not gaining weight very well.

[Ursa Major]

Hi Natalija. It must be so upsetting and frustrating to having to deal with these problems, poor little baby!

My second daughter had the problems Fiddle Faddle described as well. Her milk let down way too forcefully, and her baby would get very upset and scream in frustration and didn't want to nurse.

She is always only letting the baby nurse on one side at a time now. She is saying that the lactation consultant told her that they want ALL mothers to do that nowadays, so that the baby gets the hindmilk, which is extremely important.

Also, this baby (her second) had terrible colic. I explained to her that there is no such thing, that it signals intolerances, and paid for testing.

This little one is intolerant to corn, yeast and all dairy! Her older daughter is intolerant to all gluten grains and all dairy.

When my daughter stopped eating dairy, corn, and bread baked with yeast, the baby's colic completely stopped, and she started sleeping much better (not through the night yet, but close, she is seven months old).

Her older baby (22 months) used to have terrible, blow-out diarrhea several times a day, plus terrible temper tantrums. Since she is on a gluten-free, dairy free diet, her temper tantrums have stopped, and so has the diarrhea.

I cannot tolerate potatoes or rice, in addition to gluten and many other foods. Potatoes will give me foul smelling diarrhea and gas, as well as stomach cramps. Rice will make me somnolent (extremely sleepy and dopy, not being able to concentrate), plus it causes diarrhea and joint pain.

My oldest daughter has twins who have inherited my nightshade intolerance (potatoes, tomatoes, pepper, eggplant), as well as the gluten, dairy and soy intolerance. She herself is intolerant to gluten, soy and corn.

Intolerances to nightshades, soy, dairy, gluten and corn are very common. And don't assume that rice is always well tolerated, either.

You might want to try and change your diet completely. Because yes, EVERYTHING you eat will end up in the baby. My oldest daughter had to stop eating nightshade vegetables when nursing the twins, or they would get terrible eczema and raw bums (right, not just diaper rash, but the top layer of their skin would peel right off, not pretty, and very painful).

Unfortunately, allergists specialize in allergies. Intolerances are NOT allergies, and since they don't understand that, they tell you that (for instance) dairy is not a problem, because their allergy test for it was negative.

It may be true that your baby is not allergic to dairy. But she may well be intolerant to it, which is every bit as bad!

It would be useless to test a 12 week old baby for celiac disease, even if you would eat gluten. Because it takes more time than twelve weeks for the villi to be destroyed and for antibodies to build up in the body to show up in the tests. In babies the best test is an elimination diet. And yes, you do the eliminating in your own diet to find out what the baby can't have. It is definitely a big pain, but worth it if you can help your precious baby to get better.

If the baby hates the formula, that suggests to me that it isn't good for her. Babies will often refuse things they can't handle and which make them feel bad.

My youngest daughter was offered cheese from the time she started solids (I wasn't as smart then as I am now). I thought ALL babies like cheese, and had never heard of anybody being intolerant to it at the time.

Susie absolutely refused to eat it. If you would put it into her mouth, she would spit it out. Over the years many people had tried to give her cheese, but she always vehemently refused to eat it.

When she started going to school (I homeschooled her until grade seven), she wanted to fit in. Her teacher would give the kids pizza for rewards (a terrible idea) and she didn't want to say that she didn't like cheese. So she ate it.

Whenever she did, she'd end up vomiting several times a night, and would end up being sick the next day, missing school.

I had her tested (not by an allergist, but a naturopath) for intolerances. Sure enough, she is intolerant to all dairy (I also never gave her milk, as I felt it affected her negatively), and cheese is the worst kind of dairy for her! Strangely, she is not intolerant to lactose.

So, here are my suggestions:

Eliminate all gluten, dairy, soy, corn, yeast, potatoes and rice from your diet for a week. If your baby starts feeling better, you know that the culprit(s) for her illness are part of that group. If she isn't showing any improvements, you'll have to keep eliminating other foods you are eating (like eggs and beans, or even onions).

If she shows improvement, start introducing one of the foods you eliminated, and eat it for a few days. If she reacts, you know not to eat that food, if she doesn't, keep eating it and move onto the next one.

You need to really give it a week of eating just one new food at a time, because there may be a delayed reaction. A reaction to any given food could take up to four days to show up. For instance, sometimes gluten will cause an immediate reaction in me, but other times the diarrhea will not start until the third day after exposure. I NEVER have an immediate reaction from potatoes, it usually starts the next day, and sometimes not until the second day after eating them.

Rice will give me a stomach ache the same day, but the sleepiness and diarrhea will hit the next.

Don't assume that because the baby doesn't have the EXPECTED reaction that there isn't a reaction at all. Dairy for instance could cause diarrhea, constipation, mood changes, or eczema, which may not show up for over a week (and all those could be caused by gluten as well).

Your older children could all have celiac disease, or dairy or soy intolerance, or all of those, or some other intolerance (like nightshades). Personally, I would first try the blood test for celiac disease with them, and if that comes back negative try the elimination diet for them as well.

I sincerely hope you get it all figured out, because if your baby is ill and miserable, you will be, too.

[aprilh]

Hello, I am a new member. I dont' know what category to post this, since we do not have a definite diagnosis of any kind. It's mainly about my 12 week daughter. But first let me give a very brief background.

We live in Serbia (Europe) and have 6 children. We lived twice in the US.

1st daughter (15) - breastfed 1,5 years - a little small weight gain as a baby, but no other health problems ever

2nd daughter (12) - breastfed 8 months - had often colds when little, but no other health problems

3rd daughter (10) - breastfed 7 months - no problems as a baby, now problems with frequent diarheas, not growing like her older sisters, often sick, feels like throwing up and has stomach pains - in the process of being tested for various allergies

4th daughter (8) - had serious problems as a baby (we were in the US at that time) At two months she vomited for a week and was admitted to the hospital for dehydration; then she started having diarrhea - frequent stools that were clear and green in color; they only pushed liquids through IV, I continued nursing her, it didn't improve; then they tried anti-diarrhea formula - no change; finally transfered us to Hershey Medical Center, there gastroenterologist put her on Nutramigen and she finally improved; I was told to start avoiding dairy and soy and pump milk; a few weeks later we tried going back to breastfeeding, but never made it completely back; as soon she got more my milk, stools would get worse, she would be worse; so I continued pumping and mixing a bit of my milk into the formula until 6 months; then I got tired of it and instead gave her three full bottles of Nutramigen a day and nursed the rest of the time; she started solids (but no dairy) at that time; she got better and better - I continued nursing her till about 15 months and she started dairy about that time - no problems ever again

son (5) - breastfed 16 months - had some problems with green stools when little, but it went away on it's own, was a little smaller for a while, but nothing that would concern us or the doctors

5th daughter (12 weeks) - fine till 3 weeks, gaining nicely, then started having green mucous watery stools, lots of tummy ache; I went of dairy immediately, but nothing improved; took her to the doctor, was sent to the hospital to an allergy specialist; she told me to stay off dairy and eggs, admitted us to the hospital; they did lots of test, which all came back negative (she is not allergic to dairy), stools improved after a few days, we were sent home to continue breastfeeding; but she stopped gaining weight, so she was put on Allernova formula (same as Nutramigen - hydrolized), but refused to take the bottle; so I started to mix with expressed milk, she took it better, but never drank as much as the doctor says she needs to take; after two weeks we were allowed to go back to breastfeeding, her stools are pretty OK, but she is still not gaining much (like 2 oz. in two weeks). She seems healthy otherwise, but is now really behind in her weight. She still has stomach cramps although not as often. A friend on an email list suggested that I have a Leaky Gut and therefore am passing gluten to her and that's what's causing her problems. I suggested this to the doctor and she insisted that there is no way gluten can be in breastmilk and since Allernova has no gluten either that a celiac disease is out of question for now. Still I wanted to make sure that I am doing all I can for her, so I went on a no-gluten diet about 3 weeks ago. I dont' really see any improvement in her. I am nursing her and give about 2 bottles with the formula and keep pumping. She still doesn't take in even close of what she should (we have to measure her intake by weighing her before and after nursing) and gains only tiny bit. I am out of ideas what I can eat and wonder whether it's making any difference. The doctors don't want to test of anything else at the moment, but she is not well yet. I really dont' know what to do, so I was wondering whether anybody here has a suggestion for me.

I personally don't have any symptoms of gluten intolerance, except maybe a bit of low immunity. WOuld it make sense for me to get tested? Can a baby be tested? Would it help at all? Does anybody maybe have more advice about the leaky gut? I can't find my information on it with connection to breastfeeding on the internet. Most of what I read suggests that breastfeeding is the best prevention of all problems. Yet it seems that my milk is making my babies sick =(. And going on the hydrolized formula permanently is just way too expensive and she doesn't want to drink it anyway. And if it's the gluten and not the dairy, she probably doesn't even have to be on it. Would a regular gluten-free dairy formula be OK for her? But I really want to nurse her is at all possible.

We are seeing the allergy specialist in a week again and I want to be armed with new information and suggestions. I will be thankful for any advice. Sorry for such a long post, I just thought it would be best to give complete information. Thank you.

Natalija from Serbia

Natalija,

I didn't have time to read everyone's responses so this may have been covered. I wanted to say that gluten you are eating as well as dairy can definately affect the baby through your breastmilk. I had this very thing happen to me. I wished I would have known about it sooner to save my poor baby from all the pain, gas, diarreah, ear infections that he went through. Doctors don't always agree with this but proof is in the pudding, so to speak.

If I could go back in time, I would do things differently. I would be gluten free, dairy free, and soy free. Also, I would have cleaned up my gut from the candida overgrowth I had and was passing to him.

I learned a lot from those experiences. If you could get a good quality human strain probiotic meant for babies, that will probably help his gut inflammation and gassy diarreah type response. Natren has one specifically for babies. They have a website....I think its www.natren.com

Hope your baby gets better soon!

April

[Guhlia]

My first daughter was fussy, crampy, wasn't gaining weight, and had bloody stools. We discovered that it was my breast milk causing this because I had untreated Celiac and she wasn't getting enough nutrients through my breastmilk. When I finally got sick from Celiac I was admitted to the hospital and we switched Tori to formula (Neocate) and she had no more problems. Perhaps you're malnourished from Celiac and not making good milk??? My daughter also didn't want to nurse and didn't nurse for nearly long enough.

My second daughter was seemingly much healthier and we nursed successfully for 3 months. After that we continued to nurse for another 3 months, but then switched to formula due to multiple food allergies. She is allergic to milk, soy, garlic, onions, and possibly nuts. There may be other food allergies too, we're not sure. Anyway, I had to go on a complete elimination diet (only fresh meat, veggies, and fruits) to determine what her allergies were. It was grueling and horrible, but at least now we know what her allergies are. We switched her to Alimentum (still has soy in it and we're considering doing Neocate) when we realized how many food issues we were dealing with because she would have such horrible flare ups if I screwed up. It was really weighing on me emotionally.

Perhaps one of my stories will help lead you to your answer? I definitely recommend going on the complete elimination diet to determine what sensitivities your child may have. Its hard, but you can do it. Then, once her symptoms clear up add one single ingredient food item per week or two weeks, whatever you're comfortable with until she flares up.

Good luck! I know how hard it can be to go through this with a little one. Just remember that while breastmilk may be best, but its NOT best if you're miserable. Your baby needs you to be stable emotionally more than she needs your breastmilk.

[TalyQ]

Many here are intolerant to soy--could that be a problem? Is your formula hydrolyzed soy protein? Hydrolyzed protein can still cause a reaction if it is from a source your baby is sensitive to--otherwise, they would just hydrolyze gluten and we could all eat it!

No, it's hydrolized cow's milk. It's like Nutramigen or similar formula, where there is no cow's protein nor soy protein. It's for children who are allergic to cow's milk protein. (which she tested negative for - both skin and blood tests)

The fix for both was to nurse him only on one side at a time per feeding. That way, he emptied the breast completely, and got more of the richer, fattier hindmilk. The foremilk is higher in sugar, I think, and that would ferment in his tummy, and that's what caused the green stools.

I know this from my previous babies, so that can't be it. I fed this baby on one side from the start and this time do not have a overactive letdown at all. But thank you for the suggestion.

[TalyQ]

My first daughter was fussy, crampy, wasn't gaining weight, and had bloody stools. We discovered that it was my breast milk causing this because I had untreated Celiac and she wasn't getting enough nutrients through my breastmilk. When I finally got sick from Celiac I was admitted to the hospital and we switched Tori to formula (Neocate) and she had no more problems. Perhaps you're malnourished from Celiac and not making good milk??? My daughter also didn't want to nurse and didn't nurse for nearly long enough.

The formula we tried (Allernova) is basically the same thing as Neocate (just a french brand we can get here). She was for a while exclusively on it, but she didn't gain either, because she hates it and keeps refusing it because of the taste and never drank even close as much as she should, so we were pouring lots of it down the drain (and it's sooo expensive). I am still giving her some, but mixed with my milk. She seems much better now even with nursing. Though not gaining (only very slowly). Now she seems to have gone in the other direction with her stools. Instead of diarrhea, she has a BM only every second day and now she went 2 days without. I am not sure what can be causing it. She was happier yesteday, much less crying. I do hope that my diet is helping this. Allthough now I have found out that even if I would find a places to be tested for celiac, I can't since I am already gluten-free for weeks, right? And so should be she. Well, thank you for your experience. I am still trying to sort this our.

[TalyQ]

So, here are my suggestions:

Eliminate all gluten, dairy, soy, corn, yeast, potatoes and rice from your diet for a week. If your baby starts feeling better, you know that the culprit(s) for her illness are part of that group. If she isn't showing any improvements, you'll have to keep eliminating other foods you are eating (like eggs and beans, or even onions).

Dear Ursa, thank you for taking the time to write. My question is: What can I eat then???? I don't have any special foods available here. Especially in the winter, we mainly live on what you said to eliminate. I am sitting here hungry for breakfast, but can't figure out anything I could have in this home, except for apples (who by the way taste like basement at the end of winter =(. Any suggestions?

[Guhlia]

When I was on the elimination diet I ate mostly leftovers from dinner.

How about a fresh made fruit salad?

Eggs and bacon?

Ham omelet? (no cheese)

There are a lot of things you can eat if you don't eliminate eggs. I unfortunately had to eliminate eggs as well. Hopefully you won't need to. I would also eliminate all spices except salt and pepper in addition to the things Ursa mentioned. The only reason I say this is because my daughter ended up being allergic to garlic. I was so glad we chose to eliminate spices otherwise I don't think we would have ever figured out the garlic thing.

If you go to allrecipes.com you can do searches by ingredient. This was a HUGE help to me on the elimination diet because you can search for an item that does NOT include certain ingredients (like milk, butter, etc).

[TalyQ]

When I was on the elimination diet I ate mostly leftovers from dinner.

How about a fresh made fruit salad?

Eggs and bacon?

Ham omelet? (no cheese)

Unfortunately I am on a egg-free diet as well. But not because we know that it's causing her problem, but because they now routinely put you on a milk and egg free diet, when suspecting allergies.

[Guhlia]

I feel for you. I was egg free as well on the elimination diet. It was tough, but so worth it to figure out her allergies. I generally ate leftovers for breakfast, it was just easier that way. I'm not exactly sure of the ingredients (may contain rice and corn), but I know Ener-G makes a soy/gluten/casein/egg free bread. Its not extremely good, but if you spread a nut butter (I used sunflower seed butter) on it, it makes a filling breakfast along with some fruit.

Perhaps try the elimination diet while keeping corn and rice in and see if your baby gets any better. Corn and rice were the two hardest things for me to avoid and I added them back in almost immediately.

[TalyQ]

Thank you for the suggestion. But see I live in Serbia and dont' have access to any of those things. I am trying to get my hands on gluten-free flour now so I can bake my own bread. I have not seen any nut butters anywhere. I am wondering whether I could make my own somehow?

I feel for you. I was egg free as well on the elimination diet. It was tough, but so worth it to figure out her allergies. I generally ate leftovers for breakfast, it was just easier that way. I'm not exactly sure of the ingredients (may contain rice and corn), but I know Ener-G makes a soy/gluten/casein/egg free bread. Its not extremely good, but if you spread a nut butter (I used sunflower seed butter) on it, it makes a filling breakfast along with some fruit.

Perhaps try the elimination diet while keeping corn and rice in and see if your baby gets any better. Corn and rice were the two hardest things for me to avoid and I added them back in almost immediately.

[Fiddle-Faddle]

Do you have a blender or a food processor? Nut butters are simple to make in one of those--just put nuts in, whirl, check to see if it might need a little extra oil, and whirl some more. Nuts are kind of high on the potential allergen list, though, as are strawberries and citrus.

Lots and lots of fresh fruit, fresh or steamed veggies, salads, and plain broiled fish, chicken, and meat for every meal is boring, but effective. If and when you can add rice and potatoes back in, it's SO much easier.

You might be able to save those basement-tasting apples by making applesauce: peel and cut them (do you have 8 of them?) into big chunks, and put into a pot with a little sugar and maybe a quarter cup of water. Cook and stir over medium heat. You don't have to stir constantly, just every few minutes. Let them simmer for half an hour or so. Normally, I add cinnamon, but I don't know where that one ranks on the allergen list--does anyone here know? A squeeze of lemon helps, too.

You can also do this with pears and even peaches (canned work fine, and you only cook them for a few minutes when they are canned).

I know that in Europe, they often put tiny bits of dry pasta in the salt shakers to absorb moisture and keep the salt flowing--you might want to be careful about that.

We'll all keep racking our brains here--someone's bound to come up with SOMETHING for you!!! I'm so sorry you are going through this; it must be absolutely dreadful for you.