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My Sweet Baby Girl Has What!?!?!?!?

vanillazeis

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vanillazeis Rookie
vanillazeis
Posted

Hi ya'll! I'm breanna, and i have a 3 year old (almost!!! 7/23) little girl, Bayleigh. Okay just a little background... Bayleigh has always been pukey. She was diagnosed with GERD as a little bitty baby, and when she finally outgrew that around 1 she was still a pukey kid. She throws up every few months, for no apparant reason. I suspected food allergies, so we had her skin tested she came up 4+ to wheat and rice, 2+ to chicken, and 1+ to 10 other foods. They told me to avoid wheat, rice and chicken, and get a blood test to confirm, because it's more accurate for food allergies. Well they called a week later and told me all her allergy tests came back negative. So don't avoid rice and chicken anymore, However her Celiac test came back positive, so avoid all gluten. We have only had the blood test, no biopsy. Does this mean that somehow her test came back with high enough numbers or something to make a decision that she does have it without doing a biopsy? i assume they arent going to because they told me to make her gluten free, and our follow-up visit isnt for 3 weeks from when they called. She does have other symptoms of celiac, she's really skinny, with a potbelly, she's constipated alot, but the reason i took her to an allergist to begin with was that she has blood and mucous in her stools, which im not sure is a symptom of celiac or not. I guess really my only question is are they assuming celiac when they shouldn't? or do ya'll think they have enough information to base their opinion? What is going through their heads right now, because it's making me crazy waiting for my appointment in a week and a half! thanks ya'll!

-Breanna

(and sweet bayleigh jane)

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tarnalberry Community Regular
tarnalberry
Posted

based on what you've written, celiac is perfectly likely, and you're lucky it was caught so early. at this point, I'd call and verify that they're not going to want to do a biopsy, then take her gluten free. yes, there is no denying that the learning curve is a pain, and that she (and you) will have to learn to not be "just like everyone else" when it comes to food, but in the grand scheme of things, you'll both adapt, and it will get easier over time. the first few months are going to be hard, there's no doubt about that, but it's vital for her health, as blood tests are *highly* unlikely to report a false positive, and that means that gluten is damaging her intestines.

vanillazeis Rookie
vanillazeis
Posted
  • Author

I've had her off of gluten for about 2 weeks now. How long does it take to see a big improvement? I read that lactose is absorbed through the villi and you might need to go dairy free until your intestines heal, so as of yesterday, we're also dairy free, and last night was the first night this week that she hasnt complained of a belly ache. If blood tests are highly unlikely to report a false positive, than why do they usually do a biopsy to confirm? Thank you for your insight, it certainly is a big help to talk to someone who has actually dealt with this situation :)

based on what you've written, celiac is perfectly likely, and you're lucky it was caught so early. at this point, I'd call and verify that they're not going to want to do a biopsy, then take her gluten free. yes, there is no denying that the learning curve is a pain, and that she (and you) will have to learn to not be "just like everyone else" when it comes to food, but in the grand scheme of things, you'll both adapt, and it will get easier over time. the first few months are going to be hard, there's no doubt about that, but it's vital for her health, as blood tests are *highly* unlikely to report a false positive, and that means that gluten is damaging her intestines.
Guhlia Rising Star
Guhlia
Posted
I've had her off of gluten for about 2 weeks now. How long does it take to see a big improvement? I read that lactose is absorbed through the villi and you might need to go dairy free until your intestines heal, so as of yesterday, we're also dairy free, and last night was the first night this week that she hasnt complained of a belly ache. If blood tests are highly unlikely to report a false positive, than why do they usually do a biopsy to confirm? Thank you for your insight, it certainly is a big help to talk to someone who has actually dealt with this situation :)

Dairy free is an excellent idea! You are right about lactose being absorbed through the tips of the villi. If it appears to be helping her, definitely stay dairy free for a few months until you're comfortable gradually adding it back in.

Everyone is different with recovery. For me I saw improvement after just a few hours. Others it takes months, a very few even longer. I think it really depends on how much damage was done internally. If you are seeing small signs of improvement already you are likely on the right track. There's also a HUGE learning curve to being gluten free. She may still be getting some cross contamination or low level gluten from some places. Make sure she's not playing with Play-Do (it's almost impossible to keep it out of their mouths), washes her hands after playing with friends, lotions soaps shampoo etc are all gluten free, does not use a toaster that has been previously used for gluten foods, anyone who handles her food must have clean hands, etc. There are so many little ways for CC to creep in. Also, make sure that your body products and lipsticks are gluten free so that you don't have to miss out on any cuddles or smooches.

You may also want to have any other children and your daughter's father, as well as yourself, tested for Celiac as it is hereditary.

vanillazeis Rookie
vanillazeis
Posted
  • Author

We just gave 50+ containers of play-doh to my sisters babies. I think Play-doh's 50th anniversary was last july, so all she got for her birthday was play-doh last year lol. We're being very careful about cc, although i just realized today that her baby brothers lotion and soap has oatmeal. He has had very sensitive skin, and the only thing i have found for him is Aveeno baby, but it does have oatmeal... any other suggestions?! Also her baby brother is barely 6 months old. He is exclusively breastfed, I do however eat gluten... any thoughts on this? Should i go gluten free? Should i keep eating gluten, as well as introduce it to him so i can have him tested? is the gluten in my diet enough to have him tested? Do i need to wait til he's older? My husband and I also plan on being tested. Thanks for the help!

Dairy free is an excellent idea! You are right about lactose being absorbed through the tips of the villi. If it appears to be helping her, definitely stay dairy free for a few months until you're comfortable gradually adding it back in.

Everyone is different with recovery. For me I saw improvement after just a few hours. Others it takes months, a very few even longer. I think it really depends on how much damage was done internally. If you are seeing small signs of improvement already you are likely on the right track. There's also a HUGE learning curve to being gluten free. She may still be getting some cross contamination or low level gluten from some places. Make sure she's not playing with Play-Do (it's almost impossible to keep it out of their mouths), washes her hands after playing with friends, lotions soaps shampoo etc are all gluten free, does not use a toaster that has been previously used for gluten foods, anyone who handles her food must have clean hands, etc. There are so many little ways for CC to creep in. Also, make sure that your body products and lipsticks are gluten free so that you don't have to miss out on any cuddles or smooches.

You may also want to have any other children and your daughter's father, as well as yourself, tested for Celiac as it is hereditary.

Guhlia Rising Star
Guhlia
Posted

Lame Advertisement makes a wonderful baby lotion. My daughter has very sensitive skin and it did wonders for her dry scaly skin patches/rashes. We also used to use Aveeno exclusively. Perhaps you have an Lame Advertisement respresentative near you? They have a gluten free list available upon request.

Honestly, unless your son is displaying symptoms, there's probably no reason for you to go gluten free just to nurse. The gluten in your breastmilk will likely not produce a positive blood test in him. He will likely need to be consuming gluten for a good period of time before testing. However, that being said, there are also some, I believe, who have positive bloodwork who have only breastfed.

We, as a family, have decided not to give our daughter gluten. She had issues as a baby (we didn't know about Celiac back then) and then when I went gluten free, the whole family did too out of support. It makes things so much easier if everyone eats the same thing. She has been gluten free for over a year and is doing very well with it. She likes the gluten free foods. I am very nervous about her going to preschool this year as that's when we agreed we would reintroduce gluten and get her tested. Still, I feel that, for us, we've done the right thing. It's really all a personal decision. If you choose not to make him gluten free, you will want to have him tested periodically for Celiac. I believe the recommended time period is every year??? I could be very wrong about that though.

vanillazeis Rookie
vanillazeis
Posted
  • Author

thanks again for all your info!!! i have never heard of lame advertisement, but will definately try to find a rep in our area. My little boy has only one symptom, mucousy stools. I know thats a symptom of food allergies but is it a symptom of celiac? My little girl also has mucousy stools... celiac or undiagnosed food allergy??? My little girl will be starting preschool in August, also. I have never left her anywhere, so i was already nervous about school. Now i am encredibly nervous. What if her teacher goes home sick, or a mom comes in to help out and feeds my kid gluten... AHHH!!! I dont know what i should do to make sure everyone always remembers. any ideas on that?

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Guhlia Rising Star
Guhlia
Posted

Sorry, Lame Advertising should have read as A R B O N N E.

Mucousy stools can indicate Celiac as well as a horde of other things. I think it's even possible for that to be normal, but I'm not sure. Since Celiac runs through your family (proven by your little girl's positive bloodwork) I would definitely have him tested since that could be a symptom.

If you're worried about preschool, send her to school with a blank name card on her back and write gluten free (no wheat, barley, rye, oats, or Play-Doh) on it. That's what I do right now for her Gymboree drop off class and it works very well. Chances are she will get glutened a time or two, but at least you're thinking things through to avoid such situations. She'll eventually learn to turn down things with gluten as she gets older, especially if she gets really sick when glutened.

vanillazeis Rookie
vanillazeis
Posted
  • Author

Lame advertisement... lol im a nerd. i thought that was the weirdest name for a cosmetic line ever lol. I will definately see if there is a rep around here. Great idea about the name tag!!! I will definately give that a try. THANKS!!

momof2sn Apprentice
momof2sn
Posted
Lame advertisement... lol im a nerd. i thought that was the weirdest name for a cosmetic line ever lol. I will definately see if there is a rep around here. Great idea about the name tag!!! I will definately give that a try. THANKS!!

Just wanted to add that Lame Advertisement has great products, and if there is not a rep in your area they have a web site.

My daughter was 21 mo. when diagnosed and the biopsy was done first and was negative. Her blood work was positive and so was the genetic blood work. Her diarrhea was gone within 48 hrs on the diet, we are now seeing a cosiderable difference in the size of her belly.

My opinion is if they are giving you the diagnosis without the biopsy and she is improving on the diet, don't turn back. After my daughter's blood work came back positive they wanted to repeat the biopsy, I refused, and the diagnosis was given. I just felt I couldn't put her through that again, I couldn't go through it again and why, just so the doctor could see what she missed the first time, no thanks!!

I'm sure you will see an improvement very soon. You found a great place to ask for help. Everyone here is great, it is the only way I have made it these first two months.

Juliet Newbie
Juliet
Posted

And just a small bit of advice for you from a mom whose son is now a little over 3 1/2 and was diagnosed at 2, if you do go gluten free (and it sounds like you are), teach her about it now. Get her involved - teach her that she eats only "yummy" gluten free food. If she likes something that's normally not gluten free, tell her you'll find a great gluten free substitute, and help her pick it out maybe, too, if you have the time. We do have problems with our son getting gluten from cross contamination, but it's because he's a thumbsucker and doesn't wash his hands enough and not because he eats gluten food. He even turns down cupcakes at an impromptu birthday party when he doesn't have a treat for himself. On those days, he'll get a treat when he gets home. He even likes watching cooking shows with me and asks if something is gluten free. If it looks good but it's not gluten free, I tell him how we can make it that way. It may be a bit more work for me, but for him, it's actually fun.

Lisa Mentor
Lisa
Posted

To all those that are confused about Lame Advertisement - it is a glitch in the system on site. Sometimes you need to post the name of a product with spaces and it will show up with accurately. I am sure that it has cause for confusion. :blink:

It is not a reflection on the product.

vanillazeis Rookie
vanillazeis
Posted
  • Author

thank you to everyone who responded!!! just onemore quick question... what do you guys do for/instead of birthday cake???

Guhlia Rising Star
Guhlia
Posted

Open Original Shared Link

This is the best gluten free cake I've had to date. There are some pretty good mixes out there, but nothing beats the satisfaction of making your own.

kbabe1968 Enthusiast
kbabe1968
Posted

2nding Ghulia's cake recommendation! I bake this one all the time now (thanks to her :D). GREAT stuff. Even gluten eating folks will eat it without complaining.

I have to say - works best if you do cupcakes OR half recipe and do one pan. I tried baking 2 pans and it didn't turn out so well.

GOOD LUCK!!!

There's a few books out there geared towards kids - I would checkout your library (or amazon) and get look up a few. Just google "Gluten Free Kids" and a bunch show up.

vanillazeis Rookie
vanillazeis
Posted
  • Author

thanks for the recipe ya'll my little one insists shes having a birthday CAKE!!!!

Guhlia Rising Star
Guhlia
Posted

Just a suggestion on making the "cake". You may want to use smaller pans, like muffin top pans and make a bunch of mini cakes. It will be much more work, but most gluten free recipes turn out better in smaller portions. I have to admit though that I've never attempted a whole cake gluten free. Anyway, you could ice them in the middle, just like a regular cake. What a cute serving that would be. She'd get a "real" cake, just personal sized.

Karen B. Explorer
Karen B.
Posted
Just a suggestion on making the "cake". You may want to use smaller pans, like muffin top pans and make a bunch of mini cakes. It will be much more work, but most gluten free recipes turn out better in smaller portions. I have to admit though that I've never attempted a whole cake gluten free. Anyway, you could ice them in the middle, just like a regular cake. What a cute serving that would be. She'd get a "real" cake, just personal sized.

I haven't made a gluten-free cake from scratch but Namaste cakes turn out just fine in 8-1/2x11 pans and 2 round pans for a 2 layer cake. The GFP yellow cake looked okay, it was just "choke me" dry. Authentic Foods Lemon Cake is great but I've only made it in a loaf pan.

Jodele Apprentice
Jodele
Posted
thank you to everyone who responded!!! just onemore quick question... what do you guys do for/instead of birthday cake???

If you do not want to do it from scrach you can go and buy mixes that are gluten free. We like kinnikinnick brand and also pamela's products as well. We love them here. They are very easy and fast. I have 2 birthsdays in june and had to make two different ones and the 25th I used kinnikinnick chocolate cake mix and made a cherri filling in the middle of it turned out great. We did it over at a familys house and they liked it better then store bought. They could not believe it was so good. I did not have to bring home any leftovers at all. I made a white cake for my youngest also and It tasted like a angle food cake, it was very light and fluffy. That one was gone also. kinnikinnick also makes a mix for pancakes and walfles that is to die for, better then any gluten mixes. Hope this helps.

Jodele

vanillazeis Rookie
vanillazeis
Posted
  • Author

that did help, thank you!!! we love kinnikinnick!!

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