New Here And Need Some Help

[sjust]

My daughter is 5 months old and still weighs less than 12 pounds. She

has only gained 2 ounces in the past 4 weeks. Her stools are green

and mucusy with strips of what look like grass in them. She is

exclusively breast fed and the only meds she takes are Mylacon drops

for gas on occasion ( they are the name brand ones that are no staining and I was told by the company that those are gluten free). I am no longer eating gluten, milk, soy, corn (the big stuff not all of it),

eggs, citrus, or nuts. Have been free of all of these for several

months now. When I first went gluten free, the green poop disappeared

and the normal color/consistancyreturned. That lasted for about a month, then

the green yuck returned. I discovered that there were 2 foods that I

was eating that contained gluten and I stopped using them. That was

about a month ago. Still her poops are off. Does anyone have any

ideas or suggestions on what to try? The ped. G/I seems to be at a

loss and the current suggestion is discontinue breast feeding for 2

weeks and place her on Alamentem but I really don't want to do that.

Thank you in advance for any help you can give me.

Sarah

[AndreaB]

Definately don't quite breastfeeding if you don't have to.

Go through everything with a fine tooth comb. Are you cross contaminating yourself using things the others in the house that eat gluten use? Have you checked all your soaps/shampoos/toothpastes etc?

Have you gone totally gluten free? Soy free? Dairy free? Not a trace of anything from those? That is the first step I'd take.

My baby (who's now 18 months) broke out with eczema when he was a little over 2 months. After ELISA testing (IgE/IgG) found I was intolerant to gluten foods except oats and barley. I cut down to those and had cut out soy a month before that. His eczema got better but did not totally go away until I went totally gluten free.

Have you undergone ELISA testing? You could be eating something else that she's reacting to as well. My doctor told me that anything I'm intolerant to can become a problem food for the nursing child.

[sjust]

Thank you so much for the advice. Quitting breastfeeding is the last thing I want to do. I am 100% dairy free. Even the smallest amount of dairy causes severe scalding on her butt. I am totally soy free with the exception of soybean oil which I was told was ok. I am trying my hardest to be 100% gluten free but it seems every time I think I am there I find something else. I know my toothpaste is gluten free but not the rest of my care products. I guess I will have to look. Can you recommend a wash for her that is gluten free? I had no idea I should get tested but will call my dr. tomorrow about getting tested. My G/I seems to think that she is too little for a gluten allergy but I just don't know. Should I stop using the same plates, forks, cooking pans, ect. as the rest of the family? If she is that sensitive does this mean she probably wont outgrow it? Oh, what do you use for laundry detergent, she is into eating her clothes right now?

Thank you so much for any help you can give me.

Sarah

[sjust]

Thank you so much for the advice. Quitting breastfeeding is the last thing I want to do. I am 100% dairy free. Even the smallest amount of dairy causes severe scalding on her butt. I am totally soy free with the exception of soybean oil which I was told was ok. I am trying my hardest to be 100% gluten free but it seems every time I think I am there I find something else. I know my toothpaste is gluten free but not the rest of my care products. I guess I will have to look. Can you recommend a wash for her that is gluten free? I had no idea I should get tested but will call my dr. tomorrow about getting tested. My G/I seems to think that she is too little for a gluten allergy but I just don't know. Should I stop using the same plates, forks, cooking pans, ect. as the rest of the family? If she is that sensitive does this mean she probably wont outgrow it? Oh, what do you use for laundry detergent, she is into eating her clothes right now?

Thank you so much for any help you can give me.

Sarah

[mama2five]

My daughter is 5 months old and still weighs less than 12 pounds. She

has only gained 2 ounces in the past 4 weeks. Her stools are green

and mucusy with strips of what look like grass in them. She is

exclusively breast fed and the only meds she takes are Mylacon drops

for gas on occasion ( they are the name brand ones that are no staining and I was told by the company that those are gluten free). I am no longer eating gluten, milk, soy, corn (the big stuff not all of it),

eggs, citrus, or nuts. Have been free of all of these for several

months now. When I first went gluten free, the green poop disappeared

and the normal color/consistancyreturned. That lasted for about a month, then

the green yuck returned. I discovered that there were 2 foods that I

was eating that contained gluten and I stopped using them. That was

about a month ago. Still her poops are off. Does anyone have any

ideas or suggestions on what to try? The ped. G/I seems to be at a

loss and the current suggestion is discontinue breast feeding for 2

weeks and place her on Alamentem but I really don't want to do that.

Thank you in advance for any help you can give me.

Sarah

I definately would not quit nursing.

My ds has been having the green mucousy diapers for the last month or so. They are fianlly turning back to yellow now that he and I are both completely gluten free.

it sounds like you may accidentaly be getting glutened. I second checking all products even those you would never suspect. some times msg is made with wheat instead of corn. I would go through everything to check for whaet and gluten before I weaned.

[mama2five]

Thank you so much for the advice. Quitting breastfeeding is the last thing I want to do. I am 100% dairy free. Even the smallest amount of dairy causes severe scalding on her butt. I am totally soy free with the exception of soybean oil which I was told was ok. I am trying my hardest to be 100% gluten free but it seems every time I think I am there I find something else. I know my toothpaste is gluten free but not the rest of my care products. I guess I will have to look. Can you recommend a wash for her that is gluten free? I had no idea I should get tested but will call my dr. tomorrow about getting tested. My G/I seems to think that she is too little for a gluten allergy but I just don't know. Should I stop using the same plates, forks, cooking pans, ect. as the rest of the family? If she is that sensitive does this mean she probably wont outgrow it? Oh, what do you use for laundry detergent, she is into eating her clothes right now?

Thank you so much for any help you can give me.

Sarah

If she has celiacs she won't out grow it.

My second dd had symptoms from 2 weeks old but it took us until she was 2.5 to figure out that she had celiacs disease. She is now 8 and still extremely sensitive. The smallest amount can set her off.

[sjust]

My first thought is hidden gluten too. Trying to get it out completely is so overwhelming.

[AndreaB]

My G/I seems to think that she is too little for a gluten allergy but I just don't know. Should I stop using the same plates, forks, cooking pans, ect. as the rest of the family? If she is that sensitive does this mean she probably wont outgrow it? Oh, what do you use for laundry detergent, she is into eating her clothes right now?

She's not too old for celiac. It sounds like she is intolerant to gluten and needs to stay off of it for life. If you have nonstick pans, they cannot be shared. Plates, silverware should be ok, unless they are plastic that are shared.

We use HealthyTimes Baby's Herbal Garden baby shampoo and body wash. They also make a lotion and some soaps. We have used All free and clear with good success. We currently use 7th Generation for laundry detergent and dishwashing detergent. Dove products are good for you, I think suave is good. Just read the labels of what you have and see if it lists wheat, oats, barley, rye in any form. Some crest and colgate toothpastes are ok. We use Toms of Maine or Jasons.

You'll need to get used to being an avid label reader. Even when you find safe products you want to continue scanning the label in case they change ingredients.

[buffettbride]

I don't have much to offer than I hope your DD feels better soon and you can get her tummy worked out. I know it's a tad early, but maybe offer some rice cereal to help with weight--of course check with your dr. first and keep breastfeeding!

My daughter gained weight well as a baby, but she had the same problem with fiery stools and burning butt. At every diaper change I had to use A&D and the medicated powder to keep her in check. If I knew then what I know now, I would have done SO much differently in understanding her diet.

[April in KC]

Hi Sarah - I have three kids, some with food allergies (peanut and rice allergies) and all with gluten and casein problems. I breastfed all three, and am currently starting to wean my youngest. We went from bleeding eczema and bum burns to clear skin, smiles and a chubby baby, but it took a long time to get there. It turns out he is sensitivive to all grains. We also avoid soy for the time being - may challenge it later.

Your post reminds me of me six months ago - we were tearing apart the house, looking at shampoos, detergents, soaps, dust mite covers, of course all foods. My gut kept telling me it was foods, and it was. No physicians gave me any hope that I would be able to find the triggers, but we did.

I do supplement him now at 11 months and have for a couple of months, but he's the only one of my three boys I have supplemented. Neocate is the only formula that has worked for us, and we tried Nutramigen, Alimentum, etc. - if you need a formula down the road, keep this one in mind. The others still caused rashes and upset tummies. Nursing is still going very well, but I felt like I wanted to introduce a supplement early because a.) my own newly discovered Celiac condition left me doubting my nutritional status, and b.) I wanted to wean at one year, and I needed to know what milk susbstitute he was going to be able to tolerate (milk was out, soy milk was out, rice milk was out).

I would love to try to help you - not that I can offer any specific help other than moral support and a second set of eyes. I am highly gluten and casein intolerant, so I might be able to help you identify some not labeled sources of gluten. I'm also familiar with other food allergies.

What ARE you eating? That's a starting place. Please give an example of what you eat in a day. Include toppings like seasoning, spreads and oils.

Thanks! You can do it! - April

[gf at last]

Hang in there, it does seem very overwhelming! If the problem is indeed foods, it is easier to modify your diet as there are a limited number of formulas.

What worked for me (not necessarily the same situation as yours) was continuing breastfeeding. I noticed it was food related. First we eliminated the top 8. Things improved, especially after I got better at reading ingredients. Casein, whey, many other words indicate dairy-derived ingredients. I eventually went on an elimination diet. Testing, and we did a number of them, wasn't very accurate for us. I found, on the internet, some sample pages from a book published, I think, by Hall. It is the "Joneja Allergy Guide" or something like that. It has a several page guide of foods, listed from least likely to cause intolerance or allergy problems to most likely to cause problems. Cooked foods were less likely than raw foods to cause problems, also. Some of the early foods I started with were turkey, cooked apple, cooked squash, enriched rice milk , cooked potatoes. Add foods one at a time, after symptoms subside.

We had problems while we were figuring this all out. After each bm, and there were many, we bathed him in clear water. We tried to give him some airing time, when he was clean and dry, on a clean, dry, soft towel, so his skin was exposed to the air. If it was cool, he would have a receiving blanket over him. It helped his skin, but it was a lot of laundry. We applied barrier cream before diapering him. I no longer remember what worked best, we used butt paste (a mixture of things), A & D, zinc oxide, vaseline.

It's frustrating. But it will get better! You can do it!

[sjust]

Thank you all for your support. I found that my shampoo and hairspray both contained wheat so they are out. I am looking very carefully at everything I eat. It is a pretty bland diet so not that hard. For breakfast I make pancakes that consist of brown rice flour, potato starch, tapioca flour, sugar, salt, rice milk and add some cinnamon and pumpkin pie spice to give them some flavor. I usually make a smoothie around 11 and it has peaches, pears, mango and pomagranate juice. For lunch I have rice made with chicken broth and seasoned with italian seasoning and chicken seasoned with either italian seasoning or a little salt, pepper, chili powder and cumin. I have ruffles potato chips for a snack and usually chicken seasoned the same way and either rice or potatos with the same seasoning for dinner. Sometimes I make tortillas with dinner and those are a rice flour mix too. That is pretty much my diet at this point. I hope that I am on the right track with the gluten. When the gluten first came out the green poop went away and when we challenged it, it came back so that is why my focus is on it, not other foods.

Sarah

[janelyb]

Sarah,

I'm so glad you made it over here! Everyone is giving you great advise, just like I told you they would. Oh no about your personal care products, I'm glad you looked into that.

Your chicken broth, maybe it has gluten????

what about your flours are you buying in bulk (because that could be a cc issue). I would buy them all individually packaged.

I agree try replacing your pans,plates and utensils. Do you have a separate toaster or toaster oven too?

I don't agree with your GI, he's a man right??? Don't let anyone tell you you have to stop nursing if you don't want to!!!!! And I don't agree that she's too little to have celiac....it seems like both our area GI's seem to not really know much about it.

I know this might be costly but consider going outside the box and doing some stool testing through Dr Fine's lab which is www.enterolab.com

Has he at all ran bloodwork on the baby for celiac? Email or call me anytime Sarah.

Janel

[AndreaB]

I have ruffles potato chips for a snack

I'm not sure these are safe. I know I've read that Lay's Stax are or Utz but not ruffles.

[sjust]

The chicken broth I am using is Swansons Natural Goodness. Cambells told me that the Natural goodness was gluten-free but not the others. As for the chips, they are Lay's not Ruffles, sorry. The ingredients are potatoes, sunflower oil and salt. Are they not safe? As for the flour I do buy my white rice flour in bulk, guess I will have to stop that but everything else is individual and from the Korean market.

The G/I has not run any gluten bloodwork, or any bloodwork at all for the matter. I am pretty sure we see the same one or at least they are in the same office. I see Dr. McDonald. I found gluten-free hair products and am working on makeup. I dont really use the toaster so that is not an issue and the pans I have are new with no scratches so another part of this board told me they should be ok to keep using.

I hope that I am right about what is causing this but I guess the only way to be sure is to eliminate everything gluten and go from there. Thank you again for the support.

Sarah

[AndreaB]

As for the chips, they are Lay's not Ruffles, sorry. The ingredients are potatoes, sunflower oil and salt. Are they not safe? As for the flour I do buy my white rice flour in bulk, guess I will have to stop that but everything else is individual and from the Korean market.

From what I've heard only Lay's Stax is safe as far as cross contamination. I don't eat chips anymore. You may want to leave that out for a few weeks and see if that makes a difference.

If your pans aren't scratched at all I would think they would be safe.

[sjust]

Ok I will try that because I have been eating them quite a bit. How do you find out about the cross contamination issues?

[AndreaB]

Basically through trial and error. If they cause a reaction then don't eat them. They clean lines but if you get the beginning of the batch you'll more than likely react. If you get a batch from further in on production you'll probably be fine.

There are very few dedicated lines for gluten free foods.

[dionnek]

Sarah, Swansons chicken and beef broth (in the cans) are gluten free - I confirmed with them. Also, both Ruffles and Lays are gluten free, however you can have the issue of cross contamination with both - that is a personal decision. I eat Ruffles sometimes, but not often, and haven't had a problem. I eat Tostitoes quite often but never have a problem with those either. Do you have your own collander/wood cutting boards/spoons? Those (and the toaster) are the most important things to replace.

[janelyb]

The G/I has not run any gluten bloodwork, or any bloodwork at all for the matter. I am pretty sure we see the same one or at least they are in the same office. I see Dr. McDonald.

Yes we see Davies...and from what I am learning from in real life people whose kids have celiac symtoms but might not always test + is that both McDonald and Davies don't really know much when it comes to celiac. And what I heard from one mom when her son tested + for celiac on genetics and other blood tests he didn't want to write Celiac on the kids chart because he said it would cause problems in the insurence world for them.

I understand the really good docs are at Standford. In this new local celiac group I joined, hey maybe you can come to the next parent support meeting on 6/25; anyways this group many of the kids are not yet offically dx because of the doctor or they don't test 100% + to blood tests. I am learning it often takes 9-11 yrs to get the celiac dx, especially if you are not an 100% + on a blood test and even then many doctors like Dr Davies don't believe it was a real positive. She keeps saying my sons test is a false +, eventhough he took it 2x and it was positive both times.

We see Davies next week I'm curious what she is gonna say. Our last visit in April she told me to give him gluten again because that's not the problem, boy am I glad I ignored her advise.

[sjust]

I would love to go with you to the next meeting Janel. Do you know how you get into Stanford? I don't have the items that you mentioned but will definately get them. We have gone gluten free with all pasta's so I will just replace the colander and buy spoons for me. One thing I am wondering about is the waffle maker. It has been gluten free as long as I have but was used for gluten before that. Should I replace it?

Thanks

[Guhlia]

I know there is at least on Swanson chicken broth that is NOT gluten free. It clearly lists wheat starch within the ingredients. I think it might be the organic one. It made me pretty sick before I noticed. Also, are you using lotion or nipple cream? Sometimes those things contain vitamin E which can be derived from a wheat source. It would be very easy for you little one to ingest this while breastfeeding. Same with any soap you are using on your hands or body. Also, are you sharing a toaster with anyone or have you been using a toaster that was previously used for glutenous toast? That could be the problem. You may also want to get a new hairbrush now that you switched your shampoo and hair spray. Or, if you use a plastic hairbrush, give it a good washing.

Also, if you're avoiding soy, if I'm not mistaken soybean oil DOES contain soy. Perhaps this is part of the problem?

[janelyb]

One thing I am wondering about is the waffle maker. It has been gluten free as long as I have but was used for gluten before that. Should I replace it?

Thanks

Yes, I would. I'll email you privately about the meeting.

[KristenF]

Hi, there! I am very new to celiac's but old to breastfeeding While I'm sure your instincts are correct and there are food/body product issues that are causing your daughters issues, when I read about the green poop in the original post I felt I should chime in with a possible contributor to the green problem. It's very common for hindmilk imbalance to cause St-Paddy's-Day-Green poops. After 5 months of nursing (or more, if you've nursed previous children) you surely know that breastmilk is like a 3-course meal: first comes watery foremilk (soup course) regular milk (main course) then rich thick hindmilk (dessert ). The foremilk contains a lot of lactose, and the hindmilk contains an enzyme that helps their bellies digest the lactose. If they're not emptying the breast at every feeding, they're not getting the enzyme and are probably getting a belly ache from that undigested lactose. This can also turn the poop bright green. Considering she has other food snstivities, if she's getting a belly ache while feeding, chances may be that she's giving up before emptying the breast. Hindmilk imbalance may not be the root of the problem, but it could be contributing. Try feeding her from the same breast for 3-6 hours worth of feedings, that will help ensure that she's emptying the breast and help correct at least this part of the problem.

And one last consideration... I'm a huge champion of breastfeeding, and I would never ever ever tell anyone to quit. However, I am aware that it is possible for babies to be allergic to milk protien-not just lactose, but milk protien. And unfortunately, no matter how much dairy you cut out of your diet, there will always be milk protien in breastmilk. People don't think it's possible for babies to be allergic to breastmilk, "nature's perfect food," but it is possible. I am unaware if there is a test for milk protien allergy (I should know, but I don't... ) If there is a test available for that allergy I would recommend getting it: if it's milk protien that bothers her all of the sacrifices you're making aren't going to help her completely heal.

I want to commend you for going to such lengths to breastfeed and to get your daughter healthy. It's so difficult and so emotional, I know it takes its toll... you should feel very proud for being an amazing mother!

Take Care, Kristen

[April in KC]

Hi, April again. Two things to consider....Did you know at least one major brand of rice milk (Rice Dream) is processed using a barley protein? Most Celiacs do not consider it safe. I personally have not tested it to find out if I react. If that's your brand, I would switch.

Re. Frito-Lay products. I personally have had smallish reactions (headaches and mild outbreak of my gluten-related dermatitis herpetiformis - so definitely gluten and not just a coincidence) to Lays, Natural Lays, etc. I did not want to give them up, but it became clear to me that they were the culprit. To be honest, I'm still trying to find the chip brand that doesn't bother me. I have hear/read that Utz brand is good if you can find it. I'm still looking.

Good luck, mama!

April