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Hello,

I'm new and have some questions...

My daughter was diagnosed with celiac disease (in November 2011) when she was 22 months. We immediately went gluten-free and it's been almost 4 months now. Her main symptoms prior to the diagnosis were vomiting, recurrent illnesses, tiredness, irritability, weight loss, distended belly, and iron deficiency anemia. There has been some improvement of symptoms over the last few months, but most of these symptoms are still very present or at least to some degree. The most noteworthy is that she just can't seem to gain any weight.

I've read that symptoms can improve immediately and that a lot of people feel significantly better and symptoms go away within weeks. I also know that each individual responds differently and that some people take months (or years?) to heal.

My daughter receives therapy through Early Intervention because she also has Down syndrome. And her therapists are very concerned with how long it's taking her to heal. She's having a tough time tolerating therapy because she is always so tired and irritable and fussy. They think that we should be seeing quicker results since we've been gluten-free for several months and they aren't satisfied with her doctor's "give it time" approach. They are strongly encouraging us to seek a second opinion in hopes of finding someone who is more willing to investigate why her symptoms haven't gone away by now.

I like my daughter's doctor. And I trust that she is providing the best care she possibly can. But I'm concerned about my daughter's little body and I feel pressure from her therapists to be more proactive with this.

So here is my question: How long did it take for your child's symptoms to go away? Or how long for the symptoms to improve significantly? Do I need to give this more time, or should I seek a second opinion just in case?

Thanks for any help. I'm feeling very overwhelmed with all of this.

Andrea

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Hello,

I'm new and have some questions...

My daughter was diagnosed with celiac disease (in November 2011) when she was 22 months. We immediately went gluten-free and it's been almost 4 months now. Her main symptoms prior to the diagnosis were vomiting, recurrent illnesses, tiredness, irritability, weight loss, distended belly, and iron deficiency anemia. There has been some improvement of symptoms over the last few months, but most of these symptoms are still very present or at least to some degree. The most noteworthy is that she just can't seem to gain any weight.

I've read that symptoms can improve immediately and that a lot of people feel significantly better and symptoms go away within weeks. I also know that each individual responds differently and that some people take months (or years?) to heal.

My daughter receives therapy through Early Intervention because she also has Down syndrome. And her therapists are very concerned with how long it's taking her to heal. She's having a tough time tolerating therapy because she is always so tired and irritable and fussy. They think that we should be seeing quicker results since we've been gluten-free for several months and they aren't satisfied with her doctor's "give it time" approach. They are strongly encouraging us to seek a second opinion in hopes of finding someone who is more willing to investigate why her symptoms haven't gone away by now.

I like my daughter's doctor. And I trust that she is providing the best care she possibly can. But I'm concerned about my daughter's little body and I feel pressure from her therapists to be more proactive with this.

So here is my question: How long did it take for your child's symptoms to go away? Or how long for the symptoms to improve significantly? Do I need to give this more time, or should I seek a second opinion just in case?

Thanks for any help. I'm feeling very overwhelmed with all of this.

Andrea

Welcome to the forum.

We found out gluten was my daughter's problem when she was 15 months old and she is now almost 28 months, she didn't have her symptoms even start to go away until we figured out what other foods she couldn't have (a HUGE one for her is soy). She didn't vomit, but had explosive runny diapers 9-10 times a day every day and those ended when we figured out soy. Her hemoglobin was checked recently and she is finally not anemic which is what was making my daughter so tired. So basically we saw a little improvement just going gluten free, but we didn't see a whole lot until we figured out the other problems.

I also just want to say that if you feel that your doctor is on top of things, she knows what she is doing and you trust her then don't let EI make you feel like you need to do something when these things really do take time and sometimes investigating into other food causes.

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Thanks so much for reading and responding! My daughter was tested for several food allergies before we knew she had celiac disease, and everything came back normal. But I'm really questioning it again. We're meeting with her GI this week, so I'll bring it up again.

Welcome to the forum.

We found out gluten was my daughter's problem when she was 15 months old and she is now almost 28 months, she didn't have her symptoms even start to go away until we figured out what other foods she couldn't have (a HUGE one for her is soy). She didn't vomit, but had explosive runny diapers 9-10 times a day every day and those ended when we figured out soy. Her hemoglobin was checked recently and she is finally not anemic which is what was making my daughter so tired. So basically we saw a little improvement just going gluten free, but we didn't see a whole lot until we figured out the other problems.

I also just want to say that if you feel that your doctor is on top of things, she knows what she is doing and you trust her then don't let EI make you feel like you need to do something when these things really do take time and sometimes investigating into other food causes.

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Thanks so much for reading and responding! My daughter was tested for several food allergies before we knew she had celiac disease, and everything came back normal. But I'm really questioning it again. We're meeting with her GI this week, so I'll bring it up again.

Sorry to have to say, but allergy testing isn't always accurate and sometimes the only way to know is to take out the food and then to reintroduce it. My daughter ended up in the hospital for intestinal bleeding and since we didn't know what food caused it we cut out the top 8 allergens, preservatives and artificial colors and flavors. When we tried to reintroduce soy their was blood in her diaper again so that was out, eggs gave her the runs but she can now tolerate them baked in things and I never saw the point of going back to a very processed diet so she doesn't really have the artificial stuff anymore. Figuring out what foods are a problem can be completely trial and error, but milk is a big one for Celiacs until they heal since the part of the small intestine that produces lactose is the part that gets damaged and some have a problem with the protein in the milk, which is casien and soy is also a big one for many people on the board here. I really hope that you can find something, it is horrible seeing our children not well.

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The doctor did instruct us to do a low lactose diet while she heals. So we've replaced milk with Pediasure (also to serve as a supplement to her diet because she's not gaining weight) but I do still give her yogurt and cottage cheese. I am willing to try anything because you're absolutely right about it being horrible watching my little one suffer. Thanks for the tips.

Sorry to have to say, but allergy testing isn't always accurate and sometimes the only way to know is to take out the food and then to reintroduce it. My daughter ended up in the hospital for intestinal bleeding and since we didn't know what food caused it we cut out the top 8 allergens, preservatives and artificial colors and flavors. When we tried to reintroduce soy their was blood in her diaper again so that was out, eggs gave her the runs but she can now tolerate them baked in things and I never saw the point of going back to a very processed diet so she doesn't really have the artificial stuff anymore. Figuring out what foods are a problem can be completely trial and error, but milk is a big one for Celiacs until they heal since the part of the small intestine that produces lactose is the part that gets damaged and some have a problem with the protein in the milk, which is casien and soy is also a big one for many people on the board here. I really hope that you can find something, it is horrible seeing our children not well.

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The doctor did instruct us to do a low lactose diet while she heals. So we've replaced milk with Pediasure (also to serve as a supplement to her diet because she's not gaining weight) but I do still give her yogurt and cottage cheese. I am willing to try anything because you're absolutely right about it being horrible watching my little one suffer. Thanks for the tips.

Not a problem, any questions just ask. I watched my 15 month old daughter wasting away at this time last year and we honestly thought she was going to die and while it has been a long road, this past year has made a huge difference. She did have a hemoglobin level of 8.1, it is now 12.4 and she used to sleep 21-22 hours a day and at 12 months weighed 12 lbs 10 oz, at this point she sleeps maybe 11 hours and she is up to 28 lbs 4 oz.

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My daugher is 5 and also has Down Syndrome. She hasen't been diagnosed because I've never really had any reason to think she has CS or is GI. However, her behavior has always been an issue. Some days at preschool she's great easy for the various therapists to work with but most of the time she's very defiant, especially when it comes to anything fine motor. She was getting more difficult to deal with at home, not wanting to follow any directions and using the one word she's always had the easiest time with, "NO". It was so bad at school that they're going to do something called a Functional Behavior Analysis to try a figure out why she fights them at some time and not at others. I don't know if I read something looking up something for her younger brother who I also think is at least GI but not diagnosed but I decided on my own to take her off gluten and reduce the amount of milk she gets. It's been 3 to 4 weeks now and her behavior has been A LOT better at least at home for a couple of weeks now. She also sees an OT outside of schools that she's seen pretty much since she was born and the OT commented that at the last session the DD was actually fun to work with which is a first in a long time.

Anyway, that doesn't answer your questions about time to heal but I wanted to let you know you're not the only with with a child with Tri21 and dealing with GI or CS.

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