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Momof2cuties

New Here...waiting For Results And ?

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Hi all...I'm new here! My name is Stephanie and I have two little ones. My daughter, Ali, is 17 months and my son, John, is just 6 weeks.

The reason I'm here is my little girl...we're expecting blood test results back sometime this afternoon to see whether she has Celiac. My sister and niece were both diagnosed almost 10 years ago, so we won't be at all surprised if Ali tests positive.

Ali has had multiple loose stools everyday (8-10 a day) for about six months now. Since March she's had a rash on her face and diaper area that we were told was just a yeast infection, but we suspect it my actually be DH. She's seriously under weight (just 19 lbs) yet still has a very poochy tummy. We've been through a number of pediatricians at our local military hospital (my husband is active duty Air Force) and have been told many different things. It's beginning to get my really angry dealing with all of this! My poor baby has had so many different medications and none of them do anything. It makes me cry when we're walking to her room to change her diaper and she starts to cry because she's anticipating the pain. Does this sound like Celiac??

Our next step for Ali is to see a dermitoglist since we were given the referral. I'm not sure where that will take us, but at least it's a civilian doc and not from the base clinic.

My others questions: Should I be tested? I don't have symptoms really, but I'm assuming she got it from me. Also, at what age can my son be tested? He's exclusively breastfed and I hope to keep it that way for as long as possible. Should I go on gluten-free diet while I'm nursing? He doesn't seem to show any sensitivity at all, but I don't want to make him sick.

Thanks in advance for my listening to me ramble on and on in frustration!


Allison - 21 months, Celiac

John - 5 months, too early to tell...but, he's a tank!

Me (Stephanie) - Blood test was negative, but VERY positive response to a diet change! Hurray!

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Hi and welcome. Wow you have a lot going on.

1. do you want a diaper wipe recipe that will help your daughter? This recipe is great. Let me know if it doesn't make sense. Anothe rperk is it is cheaper than buying wipes!! Mix 2 cups water, 1 T baby soap (liquid), 2T baby oil. Cut a paper towel roll in half (so you have two short rolls.) I used to use a hack saw(clean new blade), kitchen scissors can be a real pain some times. Find a Tuperware type container that one of the paper towel rolls will fit in. Remove the cardboard center from the paper towel short roll. Put the paper towel short roll in the container so it stands on an end. Pour the mixure over the paper towels. Close the lid and let it soak. Now when you need a wipe, open the container and pull out from the center of the roll break off as needed. (The wipes should be aboutthe consistency of normal wipes, so adjust the water as needed.)

I found Bounty multi-sheets worked best. You need a heavier type of papertowel for these wipes.

Your daughter will not scream because there is no irritants in it.

My daughter had blistered diaper rash for close to a year and these wipes really helped. Just take a zip lock full when you leave the house for diaper changign on the go.

2. IMO I would not have you go gluten-free until you are done nursing, or until our son shows signs of a reaction or possible problem. When you go gluten-free and get glutened, your son will most likely have the same awful reaction that you are having. (Think you and baby both sick with awful flu like cold. Bad enough you, but then no patience for dealing with him miserable too..) As I said, just my opinion. Once he is eating cereal, you might see a change in him that would require you both to go get tested. Who knows.

3. By the way, thank you for your husbands service.

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Hi, I'm about in the same spot - allergy test was neg for my 17 month old son, but waiting for blood tests. My naturopath said that you can stil lhave wheat and/or gluten intolerance that causes the symtpoms you are mentioning, even when blood tests ar enegative, the best way to know is to go lguten free and see if she gets better - we did and he is dramatically better, (and gets everythign back when we miss something). I am still nursing him, and have now gone off gluten as well as the Sam ND told me it can go through breast milk and I should try to avoid it .

hope that helps!

Daniela

Hi all...I'm new here! My name is Stephanie and I have two little ones. My daughter, Ali, is 17 months and my son, John, is just 6 weeks.

The reason I'm here is my little girl...we're expecting blood test results back sometime this afternoon to see whether she has Celiac. My sister and niece were both diagnosed almost 10 years ago, so we won't be at all surprised if Ali tests positive.

Ali has had multiple loose stools everyday (8-10 a day) for about six months now. Since March she's had a rash on her face and diaper area that we were told was just a yeast infection, but we suspect it my actually be DH. She's seriously under weight (just 19 lbs) yet still has a very poochy tummy. We've been through a number of pediatricians at our local military hospital (my husband is active duty Air Force) and have been told many different things. It's beginning to get my really angry dealing with all of this! My poor baby has had so many different medications and none of them do anything. It makes me cry when we're walking to her room to change her diaper and she starts to cry because she's anticipating the pain. Does this sound like Celiac??

Our next step for Ali is to see a dermitoglist since we were given the referral. I'm not sure where that will take us, but at least it's a civilian doc and not from the base clinic.

My others questions: Should I be tested? I don't have symptoms really, but I'm assuming she got it from me. Also, at what age can my son be tested? He's exclusively breastfed and I hope to keep it that way for as long as possible. Should I go on gluten-free diet while I'm nursing? He doesn't seem to show any sensitivity at all, but I don't want to make him sick.

Thanks in advance for my listening to me ramble on and on in frustration!

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2. IMO I would not have you go gluten-free until you are done nursing, or until our son shows signs of a reaction or possible problem. When you go gluten-free and get glutened, your son will most likely have the same awful reaction that you are having. (Think you and baby both sick with awful flu like cold. Bad enough you, but then no patience for dealing with him miserable too..) As I said, just my opinion. Once he is eating cereal, you might see a change in him that would require you both to go get tested. Who knows.

I am responding to what you said above, as my doctor did advise me to go gluten free because I was nursing (But my baby WAS showing symptoms) - anyway, my question is, is there a danger in going free (besides giving up yummy food?) Do you get more sick if you have gluten after not having had it for a while??

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My little one also gets a rash when glutened (or diaryed). We use Aquaphor on it. You can get it at Wal-mart. It is gluten free and works wonders. She will be three in August. Ever since she could talk if she feels the beginning of a rash she asks for it by name so you know it must be good. Good luck,

Gloria

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Daniebella..there is no danger in going gluten free while breastfeeding. I have four kids who are gluten/casein free (and two who are soy free as well), and my youngest has been on the diet since birth! I won't give her gluten or dairy until at least her first birthday, after her immune system is developed, but I'll probably wait much longer than that. I think it can be a much healthier way of eating, honestly. It's a very personal decision, but that is my 2 cents! Your Naturopath sounds very informed and on the ball regarding Celiac, I would hang on to that one!!!!

Stephanie, I really feel for ya! I've been there, but it's been a few years now. I still remember how bad those diaper changed could be. We use Butt paste, but I know a few others on here will have some more ideas for those blistering rashes. I hope you get some answers soon, it definately sounds like your daughter could have Celiac, especially with the family history. It's sad, but most of us have been in your shoes and it can be very frustrating gettting a diagnosis. If all else fails, you could give the diet a go and see if she gets better. After my dd's diagnosis, we all went gluten free. It made life easier for me.....but it's not right for everyone. Good luck to you!


Tamara, mom to 4 gluten & casein free kiddos!

Age 11 - Psoriasis

Age 8- dx'd Celiac March 2005

Age 6- gluten-free/cf, allergy related seizures

Age 4 - reflux, resolved with gluten-free/cf

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Thanks for all of the support and great suggestions! We saw the dermitologist today and she was fabulous!! Her daughter doesn't have Celiac, but has several food intollerances and was very helpful. She also said that she has some friends (a whole family) that all have Celiac. She said she would personally contact our pediatrician on the base to have a referral made to the local pedi GI at University of Nebraska Med Center. He's supposed to be one of the best in the country. Hopefully we're on the right track!

Ali's rash and poos were just about normal and then today were REALLY bad again!! I took her out for lunch after her appt and thought I was being so careful! She must have gotten glutened from something!! Grrr...


Allison - 21 months, Celiac

John - 5 months, too early to tell...but, he's a tank!

Me (Stephanie) - Blood test was negative, but VERY positive response to a diet change! Hurray!

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