mom2twoangels

Hi,

I am a few weeks ahead of you my dd scope was about three weeks ago. She also had muscle loss, refusal to eat and no energy I carried her everywhere. She is 2 and almost a half. She also was super picky after her problems which were simliar random throwing up, severe tummy pain. At first she would only eat a few of the safe things she used to. She has slowly started adding things into her diet even fruits and veggies that she used to love she is slowly picking back up on some of them. I definitely think it is a phase due to the pain, I just kept offering things - fun things new things when I could and she started picking back up with her eating.

I have cut down her dairy as well in hopes of helping her tummy heal quickly. She will now eat soy replacements for dairy so that has helped, soy cheese and milk. She can't have rice so corn is huge for us right now, they have corn pasta and breads. I have been baking with corn and potato starches - some things have turned out ok.

I have just trialed Quinoa as well which both kids ate - yeay. They have pasta and flours with Quinoa.

My daughter is doing so much better on "the" diet, she has gained part of her wieght back, her arms seem a little fuller and her Pot belly seems a bit smaller. I hope your kiddo will be feeling better very soon as well.

I just wanted to say thank you Soooo much for posting. I have been a total wreck trying to make sure food is 100% safe for my daughter. She lost too much weight before her diagnosis and I am doing my best to make sure her tummy heals quickly. We also have to avoid all nuts and Rice so to mark things off my list of what to avoid is fantasitic - thanks so much!

Hi, I had this Q posted in kids and babies section but didn't get much response hoping someone here can help.

Hi,

I am still pretty new at this for my dd who is 2. Do folks avoid carmel color and dextrose / dextrin? I have read if it is from a US company it should be safe? Or do you call to make sure the US companies are getting thier carmel color etc from US suppliers?

Thanks,

Hi,

I am still pretty new at this for my dd who is 2. Do folks avoid carmel color and dextrose / dextrin? I have read if it is from a US company it should be safe? Or do you call to make sure the US companies are getting thier carmel color etc from US suppliers?

Thanks,

as for receipes if you look in the section : Gluten-Free Recipes - Baking & Cooking Tips

On this site there is one for Gluten Free Pumpkin Chocolate chip cookies. I am only on my third week trying to cook for my kids and they both really liked this one. I think the pumpkin helps mask the fact that there are "odd" flours in there.

I had to substitute potato / corn flour for the rice as we can't do rice, I also subbed soy butter for regular and they still came out good.

Hi thanks so much that makes me feel better that it is normal for her to be thirsty. I have started giving her half juice half water (when she isn't watching me pour it) and I limit her juice before meals as much as possible.

How long does this tend to last?

Hi,

My daughter was diagnosed about 2 1/5 weeks ago, so we are into our third week of gluten free. Over all she is seeming much healthier. Eating now - yippee and saying her tummy hurts much less often. I am concerned though as she wants to drink a TON of juice. Is this normal. I am limiting her milk intake for now because it seems to increase the # of times a day she tells me her tummy hurts. When she was really ill I just let her have as much juice as she wanted as she was losing weight and I would do just about anything to get calories in her. Now she is eating much better but still wanting a ton of juice.

Just wondering if anyone else had this experience.

lol, well that makes me feel better I'll try to not stress about the cereal thing for now. Thanks,

Nichele

Thanks for all the replies,

I tried a Chebe mix and it was very chewy don't know what I did wrong. Thanks for the advice on which flours work well together - I hadn't heard of coconut before that sounds yummy. I think I will try quinoa next.

Thanks again!

Thanks for all the replies, looks like most are out for us do to some level of Rice or Nuts (we don't do any nuts at all not even processed in a facility) - ug. Believe it or not she is not into muffins she just tears them up. She is currently eating crackers (ener-g brand gluten free) and cream cheese for breakfast.

Hi,

We can't use rice and it seems to be in many many of the receipes I am seeing. What would you use to replace it? We also need to avoid all nut and bean flours.

Thanks,

Is there any? We can't do rice or nuts or oat either. I bought my dd 2 some gluten free corn flakes she didn't like them. I tasted them now I know why.

Thanks,

Thanks for sharing that Angie! It is very useful to everyone here. Play-Doh is so much fun!!!!

Hi, I have been looking for receipe for playdoh but we can't do rice - does anyone know of another alternate flour we could substitute?

In the title bar for the topic is a pull-down button labeled options. Click it, and choose standard as the display mode.

Thanks!

Hi,

I would like to expand and read all replies at once is this possible? If you could let me know that would be great thanks,

Nichele

Thanks for the replies, I will probably try the moonsand but I hear that it makes a huge mess? I can't do the edible version as my son has Ige food allergies to nuts. Perhaps I could sub sunbutter - once I challenge him on sunflower seeds...

Hi,

Do you all let your kids play with play doh? I understand it has wheat in it? Alternatives?

thanks,

Well her bowels are changing I'll just leave the description at that I wouldn't say normal yet but different.

Good luck tomorrow hopefully they help you soon!

Hi all,

My 2 yo daughter was just diagnosed. I have already tried 2 bread receipes that were complete failures. If anyone has any suggestions for a good bread roll pizza or pancake receipe I would really appreciate it!

Oh we also have to avoid all nuts, seeds, rice and bean flours

Thanks,

Hi,

She did ok. They told us they weren't going to intubate her but they ended up doing that anyway not sure why. She was pretty grouchy upset crying for about 2 hours after - they told us that is pretty normal from the meds. She is 2 1/4. She complained of her throat hurting for 2 days or so. However she also came down with a cold on Sunday so I don't know how much that effected her. Her voice still doesn't sound right today - she normally has a very pretty voice so it is very noticeable.

She was perfectly fine until 6 weeks ago and we started with vomitting, constipation, refusing to eat. Several visits to the Peds office etc.

Luckily the results came back quickly, her GI Dr. called last night and she does have celiac. So the waiting is over for me and I hope it is for you very soon!

I know how you feel on having to keep giving them wheat once you suspect a problem. That last day when I gave her a piece of bread I felt like I was giving her poison. But a strange part of me was also sad she wouldn't be able to have it again. She does miss things she asked for pizza for breakfast today.

The wonderful news is, if this is what your son has, hopefully once you get him off of it he will recover quickly. We are only going on day 5 of no gluten and even though she is still super skinny with big circles under her eyes and her tummy distention has only gone down a little - she is acting much happier and eating. She hasn't wanted to eat hardly anything for the last 2-3 weeks.

Hi,

I am new here, and still waiting on my dd diagnosis, she had her scope on Friday. If I were you I would call and beg to get an earlier appt. and ask if they do think they might want to schedule a scope if they could get you on the schedule for that now before the dr see's him. I called mine and they were able to get us in a bit earlier and I was so worried about my daughters weight loss the doctor was great enough to come in early and do her scope the next day. I hope they get you in soon and you get it figured out!

I wanted to say thanks for all your comments and encouragement. We are starting day 4 of Gluten free (she had her scope on Friday) and she does seem slightly better. Her tummy seems slightly less distended she seems to be playing a bit on her own vs. being held all the time and eating a bit more. I am still waiting on the call with the test results, but wanted to say thank you to everyone. My shopping expiditions have been quite a challenge and I will probably post a couple of questions on the product forum.

Thanks!

Hi,

My daughter has just been mostly diagnosed with celiac. Her blood work came back at 100 not sure what that means then referral to a ped GI. He did a scope on her today to confirm and he said it looks like it - but he won't be 100% sure until he gets the labs back. He was sure enough to have us start on a gluten free diet today. He made us feed her gluten the last couple of days for the testing.

I am kind of confused though as her pattern doesn't seem to follow some of the stories I see here. I have another child with Ige food allergies so I have always been very aware of what she was eating and what her reactions have been she has had food intolerances to Rice and Oat (basically she throws up if she eats them) I removed these from her diet before she was 1. She has always grown well slimmed down some from a pretty rounded baby to a regular sized toddler - ped said that was normal with more movement etc.

All of a sudden she started having very bad tummy troubles that came and went but contined to get worse over the last 5 weeks. A week prior to this my son and I had the stomach flu so I thought maybe that was the issue. But when she was still throwing up randomly a week later I took her to my ped who thought she might be constipated so we did xray / miralax for a week or so. Go back and she has quit throwing up but still more and more tummy pain and constipated off and on. Then the ped thought either one of about 7 things that she could test for by blood work or just reflux - we decided to try a reflux med for a week before doing the blood draw. She seemed better for several days after the appt so I delayed the meds. Then syptoms came back worse than ever started meds - but dr said it would take a week to work - so waited the week when it was still not helping we went for the blood draw. She was going down hill quite fast in my opinion she lost 1 1/2 pounds in just 2 weeks I though think that was a ton for a girl who only started out at 26 lbs. No energy at all, made me carry her etc. Does this seem normal or well normal for celiac to anyone?

I guess I am worried since today is our first day gluten free if this will really solve her problem she is so bony now and her tummy sticks out so much, bags under her eyes - it is hard to see in my child that was really 100% about a month ago. I am praying that this works.

Thanks for reading sorry it ended up so long