A Few Questions...

[Bridy]

Sorry, this may be long. My baby, who isn't even two yet (she will be 2 on the 14th) is being tested for Celiac's Disease.

She is 23lbs and 32 inch tall. No extremely small for her age, but she has steadily fallen from the 50th% to 5% and below.

A short background. She has been constipated basically from day one and has always had major issues with going. I thought, as any person would that once we introduced fruits and veggies, and cereal, she would finally have a normal BM. But in actual fact things just ended up getting worse.

We had a pediatrician that blamed it on the formula she was on, so I tried switching formulas to see if things would get better. Things were good for a week or two but then she would go back to being consitpated and not going very often (usually every 3-4 days).

We decided at 18 months to take her off formula hoping things would finaly clear up, but they didn't. In the spring we switched her to our GP who, on the first visit set her up an appointment with the endocrinologist.

We saw her last week, and everything went well, but she told me she was testing my daughter for celiac's disease.

I had no idea! after 2 years of trying to figure out what was wrong with my baby, celiac's just never came to my mind. I always thought people only had diarrhea with Celiac's.

So of course when I got home I had to look it up, and sure enough my daughter has numerous signs of it.

I almost feel sick to my stomach thinking that she has this and I am still feeding her wheat.

But I still don't know the results and the Endocrinologist has set us up with an appointment with a pediatric surgeon to have a biopsy. From my reading on Celiac's I assume it would not be wise to put her on a diet until the biopsy is done.

If the test comes back positive should we all get tested? I have a 4 year old son who seem quite healthy(now) after having some health issues of his own concerning sleep apnea, which I am concerned stemmed from allergies of some sort. But he has his adenoids and tonsils out in April and has been thriving ever since.

I had also taken my daughter to a natural pathic Dr. at the beginning of July in hopes that she would have some natural alternatives for her constipation. She suggested flax seed oil, and it has worked greatly.

We also had some allergy tests done that had to be sent to the US, so we are still waiting on those, 4 weeks later!

If she has Celiac's will the allergy test show a wheat intolerance?

And do all babies with Celiac's have an overly large belly?

I was viewing some of the pictures that have been shared and I can't say for sure if my daughter has an extremely large belly. Her belly is not flat like a "normal" skinny person. She does have it sticking out but it isn't rock hard.

I should take some pictures.

The waiting is killing me. I just never even would have thought Celiac's disease, but the more I read about it the more it is my daughter.

If she doesn't have Celiac's on paper what else could she have?

They are also testing her for Thyroid disease, and something else. I was alone at the appointment with my daughter acting up and I can't remember what the Dr. said.

We are seeing the surgeon on the 14th for a consultation, but I should hear something about the tests before that.

Thank you for reading my ramblings. I really have no where else to go. All my friends think I am some nurotic mother, but how in the heck can I stay off the computer when I hear the words Celiac disease at the Dr's office?

Wouldn't everyone go home and look it up?

Bridy

[dandelionmom]

  Quote

If she has Celiac's will the allergy test show a wheat intolerance?

And do all babies with Celiac's have an overly large belly?

My daughter has celiac disease (positive blood work) but the allergy tests came back saying that she isn't allergic to anything.

My daughter was thin with a round belly. It wasn't overly large but compared to how thin the rest of her was, it was large. And it wasn't noticeable until she'd been exhibiting symptoms for quite a while.

And if she does have celiac disease, all first degree relatives should be tested.

I hope you get the answers you need soon! Best wishes to you!

You don't sound neurotic at all to me! Just a concerned mom looking for answers.

[ShayFL]

If ALL of the tests for Celiac come back negative, she could still have it. I know this stinks, but in children under 6 the tests are extremely unreliable.

If it were me, I would keep her on gluten and get the biopsy. If things come back positive, well there is no question what you must do.

But if they all come up negative, I would do a 3 month trial of gluten free diet to see what happens. THE PROOF IS ALWAYS IN THE DIET!! Not the lab tests.

And yes, I would get everyone tested (including genetic tests).

If she has endocrinolgical issues they often resolve on a gluten free diet (if that is her problem).

[MarsupialMama]

I totally agree with everything ShayFL said.

If you want to get the biopsy done, do it as quickly as possible, then start her on gluten-free for at least 3 months, regardless of the testing. The saying of "Proof is in the diet, not the tests" is VERY TRUE.

We have been on gluten free for almost one month. My daughter is around 17 pounds, and is 22 months old! While she hasn't gained any weight back yet, we have seen improvements in her appetite (INCREDIBLE difference!), sleeping better, and attitude change. She has had constipation since the day she was born, and so did her sister (now 3). We keep her on prune juice and a children's bowel formula that I bought online (which is basically a prune/figs concentrate with a few herbs - she takes a teaspoon everyday). This keeps her having 1-3 bowel movements a day until her bowels strengthen and heal.

She is a scrawny child with little ribs poking out, except for the bigger belly, which is all there is to her.

We did not have the biopsy done before we started gluten free, and because we had already seen improvements, I didn't want to put her back on gluten to do more damage. So we don't have an official diagnosis, which, is good and bad. Good because I hate the thought of a biopsy, bad because it makes us look like we are just grasping at straws as far as the medical profession is concerned.

You don't sound neurotic. If ANYONE could be neurotic about this, it would be me, and I have become a crazy lady trying to figure out what is wrong. SMy daugheter had to go to the hospital for major dehydration due to a stomach virus, and while we were there they called CPS on us and threatened to take our children away for "medical neglect" because she was so little. While they closed the case in the next few days, I am hoping EVERY SINGLE DAY that my baby gains weight because I have no "official diagnosis" to keep CPS off my case if something else were to happen. Right now we are just at the "wait and see" stage and hoping, hoping hoping for more improvement (WEIGHT GAIN). I have no doubt it is celiac, due to her symptoms and looks, but try telling doctors and social workers who know nothing about celiac that!

I have the symptoms, so I have gone gluten free as well, and so has my daughter, who has no symptoms other than the constipation (which she outgrew), and the big belly (which we always think is from eating too much...??) My husband still eats wheat and gluten, but we are very careful to have no cross-contamination issues. I have had weight problems and digestive problems all my life, but never pin-pointed it down to gluten (I'm now almost 25). Can't say I've noticed a big difference in me yet, but I'm pregnant now, so everything is different and changing all the time!

[MarsupialMama]

One more thing. If she is still on a formula, you might check the iron content. Usually iron supplements (in formula, or otherwise) cause constipation because they are not in a very useable form to be assimilated by the body. Also many celiac people have problems digesting dairy, so if it is dairy based, that could cause the constipation too.

My children were neither on soy nor dairy and they still had constipation though, so ... figure that one! Weak bowels are in the genetics with us, unfortunately.

[Bridy]

Thank you for the replies!

I have been going back and forth with the thought of taking gluten out of her diet, but for some reason I really want it to say on paper that she has celiac's, or at least have the chance of it saying that. But with that said she hardly ever eats food with glutens even when I offer them to her. A few things she will eat is pasta, cereal and mini croissants, which I am sure caused her to have an unexplained rash on the inside of her leg.

She has also had unexplained blisters on her vagina. I did take her to the Dr's about them but by the time we went the blisters had started healing so no biopsy was done on them.

She has also been wearing the same cloths for fever! My DH and I always joked around how she was cheap to cloth cause she just never grew out of anything.

She is an extremely picky eater, hardly ever eats a thing and would live on fruit if we let her.

She has always been fussy and cried a lot for reasons we could never figure out. She is clingy and would rather just sit on the couch all day then play with her toys. She has never been a good sleeper and was waking up because she was hungry every night until she was about 18 months old when I just couldn't take the sleep deprivation any longer. We were never big fans of the cry it out method but I was at my wits end and extremely tired that we just had to let her fuss. Thank goodness it didn't last long and she started eating more before bed and first thing in the morning.

But at 2 years old she still has the sleeping patterns of an 11 month old who is trying to get out of 2 naps. And teething makes things even worse. She also only has 12 teeth and just now cutting a couple more.

I had to almost force her to take foods at 7.5 months, she really had no interest in them at all, but she seemed hungry all the time and hardly drank any formula either. Because she was constipated I didn't give her any rice cereal and started her on fruit hopeing that would get her BM working, but no changes at all. Then I added wheat and barley cereals, no changes either. We held off meats till she was old enough to feed it to her self at about 10 months. She was never crazy about meat but she has always loved eggs and dairy.

She was a vomitter as well, and would just vomit for no reason.

We even had to call 911 when she was 4 weeks old because she was choking on her vomit, it was very scary.

Things really took a turn for the worst at about 12 months with bleeding and a lot of crying on her part. It was extremely hard for me to hear my baby tell me "poopy mommy, help me, poopy" and she would say ouchy and there were many times she would be sitting on the toilet trying to poop and I would just hold her as we both cried.

She has been off formula since she was 18 months, she will be 2 on the 14th.

We put her on whole milk and had no improvements, so in late June I put her on 2% milk and she started going almost every day! I noticed a big improvement from switching to 2%, but her BM are still hard and extremely large. We have also cut back her amount of milk to about 4-6oz a day and never noticed any changes in the consistency of her BM.

I could go on an on with the reasons why I feel she has Celiac's, but I am really hoping we will get some answers on paper soon.

We see the surgeon on her birthday, the 14th and I am sure we will get a sugary date for her biopsy at that time. They have been very quick about things which is nice, but it still makes the waiting hard.

I would love to know more about what you are giving your daughter to help with her constipation. The Flax seed oil isn't working as well as the endocrinologist wants it to. She told me she wants her BM really loose and they aren't nearly close to that yet. She has been on 2tsp a day for a month now.

I was told if the flax doesn't work she will have to go on medication and I so don't want her to be on laxatives. I don't want her body to get use to something like that at such a young age.

I am sorry to hear CPS is on your case, that's horrible! Just the fact that you are taking her to Dr's would show that you are concerned for her health. Give her some flax seed oil, it has a lot of fat in which would help her gain some weight.

[CeliacAlli]

  Bridy said:

Sorry, this may be long. My baby, who isn't even two yet (she will be 2 on the 14th) is being tested for Celiac's Disease.

She is 23lbs and 32 inch tall. No extremely small for her age, but she has steadily fallen from the 50th% to 5% and below.

A short background. She has been constipated basically from day one and has always had major issues with going. I thought, as any person would that once we introduced fruits and veggies, and cereal, she would finally have a normal BM. But in actual fact things just ended up getting worse.

We had a pediatrician that blamed it on the formula she was on, so I tried switching formulas to see if things would get better. Things were good for a week or two but then she would go back to being consitpated and not going very often (usually every 3-4 days).

We decided at 18 months to take her off formula hoping things would finaly clear up, but they didn't. In the spring we switched her to our GP who, on the first visit set her up an appointment with the endocrinologist.

We saw her last week, and everything went well, but she told me she was testing my daughter for celiac's disease.

I had no idea! after 2 years of trying to figure out what was wrong with my baby, celiac's just never came to my mind. I always thought people only had diarrhea with Celiac's.

So of course when I got home I had to look it up, and sure enough my daughter has numerous signs of it.

I almost feel sick to my stomach thinking that she has this and I am still feeding her wheat.

But I still don't know the results and the Endocrinologist has set us up with an appointment with a pediatric surgeon to have a biopsy. From my reading on Celiac's I assume it would not be wise to put her on a diet until the biopsy is done.

If the test comes back positive should we all get tested? I have a 4 year old son who seem quite healthy(now) after having some health issues of his own concerning sleep apnea, which I am concerned stemmed from allergies of some sort. But he has his adenoids and tonsils out in April and has been thriving ever since.

I had also taken my daughter to a natural pathic Dr. at the beginning of July in hopes that she would have some natural alternatives for her constipation. She suggested flax seed oil, and it has worked greatly.

We also had some allergy tests done that had to be sent to the US, so we are still waiting on those, 4 weeks later!

If she has Celiac's will the allergy test show a wheat intolerance?

And do all babies with Celiac's have an overly large belly?

I was viewing some of the pictures that have been shared and I can't say for sure if my daughter has an extremely large belly. Her belly is not flat like a "normal" skinny person. She does have it sticking out but it isn't rock hard.

I should take some pictures.

The waiting is killing me. I just never even would have thought Celiac's disease, but the more I read about it the more it is my daughter.

If she doesn't have Celiac's on paper what else could she have?

They are also testing her for Thyroid disease, and something else. I was alone at the appointment with my daughter acting up and I can't remember what the Dr. said.

We are seeing the surgeon on the 14th for a consultation, but I should hear something about the tests before that.

Thank you for reading my ramblings. I really have no where else to go. All my friends think I am some nurotic mother, but how in the heck can I stay off the computer when I hear the words Celiac disease at the Dr's office?

Wouldn't everyone go home and look it up?

Bridy

I don't know what else she could have but it is very normal to have a preggo looking belly!

as for her weight in celiac we usually grow fine, if you are not gluten free you prolly have weak bones, it is just your weight. When I was 12 months old I was a normal height(actually taller than normal) 90th percentile and weighed 12 lbs..

I was constipated one day and had diarrhea the next so it really depends on the person and if your daughter is diagnosed her GI will regulate that.

Yes, most GOOD parents would look it up, my parents traveled an hour to go to a support group for other parents like them because it was new to them. You are absolutely not neurotic!

I don't understand what you mean about the allergy test but to really know you NEED to have a biopsy done!!! Blood tests can be negative negative negative and the only thing that really matters is the biopsy.

If you are healthy you shouldn't have to be tested but it should be up to your doc..

I hope this helps you!!! DON'T GIVE UP, STICK IN THERE FOR HER!!!

[CeliacAlli]

  Bridy said:

Thank you for the replies!

I have been going back and forth with the thought of taking gluten out of her diet, but for some reason I really want it to say on paper that she has celiac's, or at least have the chance of it saying that. But with that said she hardly ever eats food with glutens even when I offer them to her. A few things she will eat is pasta, cereal and mini croissants, which I am sure caused her to have an unexplained rash on the inside of her leg.

She has also had unexplained blisters on her vagina. I did take her to the Dr's about them but by the time we went the blisters had started healing so no biopsy was done on them.

She has also been wearing the same cloths for fever! My DH and I always joked around how she was cheap to cloth cause she just never grew out of anything.

She is an extremely picky eater, hardly ever eats a thing and would live on fruit if we let her.

She has always been fussy and cried a lot for reasons we could never figure out. She is clingy and would rather just sit on the couch all day then play with her toys. She has never been a good sleeper and was waking up because she was hungry every night until she was about 18 months old when I just couldn't take the sleep deprivation any longer. We were never big fans of the cry it out method but I was at my wits end and extremely tired that we just had to let her fuss. Thank goodness it didn't last long and she started eating more before bed and first thing in the morning.

But at 2 years old she still has the sleeping patterns of an 11 month old who is trying to get out of 2 naps. And teething makes things even worse. She also only has 12 teeth and just now cutting a couple more.

I had to almost force her to take foods at 7.5 months, she really had no interest in them at all, but she seemed hungry all the time and hardly drank any formula either. Because she was constipated I didn't give her any rice cereal and started her on fruit hopeing that would get her BM working, but no changes at all. Then I added wheat and barley cereals, no changes either. We held off meats till she was old enough to feed it to her self at about 10 months. She was never crazy about meat but she has always loved eggs and dairy.

She was a vomitter as well, and would just vomit for no reason.

We even had to call 911 when she was 4 weeks old because she was choking on her vomit, it was very scary.

Things really took a turn for the worst at about 12 months with bleeding and a lot of crying on her part. It was extremely hard for me to hear my baby tell me "poopy mommy, help me, poopy" and she would say ouchy and there were many times she would be sitting on the toilet trying to poop and I would just hold her as we both cried.

She has been off formula since she was 18 months, she will be 2 on the 14th.

We put her on whole milk and had no improvements, so in late June I put her on 2% milk and she started going almost every day! I noticed a big improvement from switching to 2%, but her BM are still hard and extremely large. We have also cut back her amount of milk to about 4-6oz a day and never noticed any changes in the consistency of her BM.

I could go on an on with the reasons why I feel she has Celiac's, but I am really hoping we will get some answers on paper soon.

We see the surgeon on her birthday, the 14th and I am sure we will get a sugary date for her biopsy at that time. They have been very quick about things which is nice, but it still makes the waiting hard.

I would love to know more about what you are giving your daughter to help with her constipation. The Flax seed oil isn't working as well as the endocrinologist wants it to. She told me she wants her BM really loose and they aren't nearly close to that yet. She has been on 2tsp a day for a month now.

I was told if the flax doesn't work she will have to go on medication and I so don't want her to be on laxatives. I don't want her body to get use to something like that at such a young age.

I am sorry to hear CPS is on your case, that's horrible! Just the fact that you are taking her to Dr's would show that you are concerned for her health. Give her some flax seed oil, it has a lot of fat in which would help her gain some weight.

I was put on miralax which is now over the counter, but when I was a baby it was prescription. I would definitely give it a try!!!

[MarsupialMama]

Your whole situation sounds EXACTLY like my daughter - especially the constipation thing and the appetite thing. And the "cranky-doesn't-want-to-do-anything" attitude.

If you can get her to drink any substantial amount of liquid (for a baby) prune juice can't be beat for helping those little bowels move along. It might take a day or two to bust through, but after that it is no problem. We only give my daughter about 3 ounces of the stuff and it works okay. There is a Children's Colon Cleanse - an herbal product - that I give her instead of prune juice sometimes and I get it from ModernManna.org. It is a 4 ounce bottle and I give my baby about 5 dropperfuls which is less than a teaspoon. There is a suggested amount based on weight on the side of the bottle. This has always worked great for us, and I felt comfortable giving it to her when she was just one year old. It is very gentle, causes no cramping or upsets (she has never fussed because of it), but it does work. I know my herbs pretty well and there is nothing in it that I would have a problem giving to a little child. I take the stuff myself when I feel the need. I feel much more confident giving her this than any drug medication or chemical laxative. I just don't feel right giving those things to a baby, but everyone has their own comfort level.

  Bridy said:

Thank you for the replies!

I have been going back and forth with the thought of taking gluten out of her diet, but for some reason I really want it to say on paper that she has celiac's, or at least have the chance of it saying that. But with that said she hardly ever eats food with glutens even when I offer them to her. A few things she will eat is pasta, cereal and mini croissants, which I am sure caused her to have an unexplained rash on the inside of her leg.

She has also had unexplained blisters on her vagina. I did take her to the Dr's about them but by the time we went the blisters had started healing so no biopsy was done on them.

She has also been wearing the same cloths for fever! My DH and I always joked around how she was cheap to cloth cause she just never grew out of anything.

She is an extremely picky eater, hardly ever eats a thing and would live on fruit if we let her.

She has always been fussy and cried a lot for reasons we could never figure out. She is clingy and would rather just sit on the couch all day then play with her toys. She has never been a good sleeper and was waking up because she was hungry every night until she was about 18 months old when I just couldn't take the sleep deprivation any longer. We were never big fans of the cry it out method but I was at my wits end and extremely tired that we just had to let her fuss. Thank goodness it didn't last long and she started eating more before bed and first thing in the morning.

But at 2 years old she still has the sleeping patterns of an 11 month old who is trying to get out of 2 naps. And teething makes things even worse. She also only has 12 teeth and just now cutting a couple more.

I had to almost force her to take foods at 7.5 months, she really had no interest in them at all, but she seemed hungry all the time and hardly drank any formula either. Because she was constipated I didn't give her any rice cereal and started her on fruit hopeing that would get her BM working, but no changes at all. Then I added wheat and barley cereals, no changes either. We held off meats till she was old enough to feed it to her self at about 10 months. She was never crazy about meat but she has always loved eggs and dairy.

She was a vomitter as well, and would just vomit for no reason.

We even had to call 911 when she was 4 weeks old because she was choking on her vomit, it was very scary.

Things really took a turn for the worst at about 12 months with bleeding and a lot of crying on her part. It was extremely hard for me to hear my baby tell me "poopy mommy, help me, poopy" and she would say ouchy and there were many times she would be sitting on the toilet trying to poop and I would just hold her as we both cried.

She has been off formula since she was 18 months, she will be 2 on the 14th.

We put her on whole milk and had no improvements, so in late June I put her on 2% milk and she started going almost every day! I noticed a big improvement from switching to 2%, but her BM are still hard and extremely large. We have also cut back her amount of milk to about 4-6oz a day and never noticed any changes in the consistency of her BM.

I could go on an on with the reasons why I feel she has Celiac's, but I am really hoping we will get some answers on paper soon.

We see the surgeon on her birthday, the 14th and I am sure we will get a sugary date for her biopsy at that time. They have been very quick about things which is nice, but it still makes the waiting hard.

I would love to know more about what you are giving your daughter to help with her constipation. The Flax seed oil isn't working as well as the endocrinologist wants it to. She told me she wants her BM really loose and they aren't nearly close to that yet. She has been on 2tsp a day for a month now.

I was told if the flax doesn't work she will have to go on medication and I so don't want her to be on laxatives. I don't want her body to get use to something like that at such a young age.

I am sorry to hear CPS is on your case, that's horrible! Just the fact that you are taking her to Dr's would show that you are concerned for her health. Give her some flax seed oil, it has a lot of fat in which would help her gain some weight.