RE: Celiac signs in infancy

[Guest guest]

Great idea ....I think a lot of us

have had the same experiences.

My Son had these symptoms in infancy:

Cradle cap

Extreme colic (At times I considered

putting him out on the sidewalk with a “FREE” sign around his neck!

LOL!)

He never had trouble nursing....I stopped

because the only place I could pump at work, was a dirty bathroom. When I

stopped nursing (at 4 months) and tried traditional formula, the projectile

vomiting started. When I switched him to soy formula, the projectile vomiting

stopped and within a few days, he became a totally different, happy baby.

Poor growth

Diaper rash accompanying diarrhea episodes

My Daughter has not been formally diagnosed

with CD, but gets genes from both parents and has diarrhea every time she eats

it, so we treat her as if she does.

She had the same extreme colic as my son.

I nursed her for nearly six months, trying to cut out every gas producing food

item possible, before finally coming to the conclusion that there must have

been something wrong with my milk. I put her on lactose free formula and, just

like my son, within a few days she was a totally different, happy baby.....as

long as I was holding her. She was extremely clingy until 18 months.

[Guest guest]

I have one more thing to add to my

previous email. My son was sick all the time. We’d be lucky to have a

full week, when he wasn’t sick with something. Ear infections, RSV,

Roseola....you name it, he caught it. When other kids would catch the sniffles,

my son would be vomiting with 105.4 fever....EVERY time.

[Guest guest]

I have one more thing to add to my

previous email. My son was sick all the time. We’d be lucky to have a

full week, when he wasn’t sick with something. Ear infections, RSV,

Roseola....you name it, he caught it. When other kids would catch the sniffles,

my son would be vomiting with 105.4 fever....EVERY time.

[Guest guest]

I have one more thing to add to my

previous email. My son was sick all the time. We’d be lucky to have a

full week, when he wasn’t sick with something. Ear infections, RSV,

Roseola....you name it, he caught it. When other kids would catch the sniffles,

my son would be vomiting with 105.4 fever....EVERY time.

[Guest guest]

Arlene....I find it interesting that you

have been through the same experience. Thank goodness those stressful days are

over! J

I would love to hear from any other silly

yaks, who have been through this too.

None of my friends (non-celiac) have ever

been through these ‘extremely high fever’ episodes with their

children, so I have always suspected it was a direct result of undiagnosed CD

and its effect on the immune system.

[Guest guest]

I am a breastfeeding non-celiac gluten eating mom. I was

breastfeeding my second child and knew that his stools should

unformed, mustard colored, seedy etc. However, his stools were

frothy, green, sometimes browny yellow, the stink was not of sweet bf

poos, sometimes with white chunks (now I realize probably milk fat),

mucousy like egg whites. Sometimes he had rashes that looked like a

burn and I knew it was acid from his stomach running through him to

burn his butt. I used cloth diapers, I knew this was not right. It

looked like his intestinal lining was being ripped from his body at

every bowel movement and when the lining was gone, the burn rash would

come from the acid.

In the beginning we thought dairy, so I went off all dairy, every bit

of it. And he got somewhat better, but not normal still. By age 3

months he has settled down a bit.

I took him to the pediatrician and he reluctantly agreed to run a

stool test for Garadia, a bacteria. Of course that was negative he

was only 4 or 5 mo old at the time.

He nursed a lot, never could go 2 hours without nursing even at 6 mo

old. He cried all the time, literally from day 1. In the hospital he

slept sitting upright in my husband's arms, when my dh would dose off

and move him he would scream. It was horrible. He slept in a true

carseat in semi-recline for the first 3 mo of his life, sleeping only

20 min at a time. We was slow to gain weight, but no one seemed

concerned, they told me to nurse more!!!

I classified him as a Dr. Sears classic high needs infant/ child. He

seemed to be in pain and we were lead to believe it's probably colic

and not to worry. His legs had to be up into his stomach to sleep, he

loved being carried in a baby sling with his legs tucked up.

When we started to introduce solids, oh, boy the rashes started to

come more. Bananas - anal rash, sweet potatos - anal rash, peaches -

anal rash. Oatmeal was killer, came out the way it went in and rice

cereal wasn't much better. I tried millet made at home but I wasn't

very good about having to do all the extra prep work. White grape

juice and turkey were the only two foods he could eat. As he got a

bit older the rashes were not so pronounced, and I though well maybe

the breastfeeding is keeping him from having solid stools. My other

son was constipated all the time, still is (CD dx will come soon I

believe).

He also would push away bread, biscuts, cake, donuts, and cookies. He

sometimes would take one bite and sometimes not. I took a distict

notice to this at Christmas when he was 8 months old, he did not eat

the bread with the dinner. He ate the turkey, no gravy, and some

veggies. He simply didn't seem to like them so I took them off his

menu. He prefered strawberries, nix the bananas. He also liked

salads. He eats his brocolli before touching his meat!!! So, as a

mom I think well this is okay, he likes healthy food all the better

for him.

WHen he was starting to walk, I can remember some very distinct

moments. One day I heard this horrible explosion from his butt, I

looked at him and said are you okay. I won't go into detail of what

it contained but it was classic CD of unprocessed foods, froth,

mucous, etc. This happened quite a few times. It stained the diaper

covers permanently.

Around the time he turned 2, I gave birth to our daughter. In the

months prior to her birth we discovered that certain foods were more

likely to cause diarrhea than others. My mother was staying with us

and I told her that he couldn't eat crackers, yogurt 1X per 3 days,

b/c they gave him diarrhea and rashes. She did not question it and

did not feed him crackers or yogurt. His diarrhea episodes decreased,

which is good b/c my mother isn't the kind who deals well with messes.

My mother being a diabetic an knowing I watch the amount of carbs I

eat was fixing dinners that were basically meat, veggies and salad. I

don't recall what she fed my children for lunch, probably mac and

cheese, sandwiches, soup, all gluten containing. Once my mother left

and my MIL was back in the picture of watching him on occassion in the

evening or weekend, she obviously did not listen to me when I said he

can't eat these things. But this was typical, at first we thought he

was milk intolerant and I would tell her not to feed him milk and she

did and I knew it b/c the diarrhea was worse.

So we're going about our business limiting cracker products and he is

still having diarrhea but not as often. The cracker products that

were on the off list were specifically from Nabisco. I asked the

doctor why he couldn't eat certain foods without diarrhea, no answer.

Almost 3, early 05, he had diarrhea with the mucous on a Sat and it

had been a long time since that had happened this badly. I phone up

the person who brought the snack for the Friday event we attend and

she said it was Sociable crackers!!! Well that explained the

diarrhea, but I still had no idea why those foods did this too him.

He had a skin reaction to touching Rye at church around this time and

I decided to take him to an allergist finally, this is now April 05.

I take my list of offending foods, I call ahead to make sure they can

test for Rye. It's 55 miles from my house. We get there, he has no

answers, test him for everything but RYE!!! And we leave with " well,

just keep doing what you're doing " . Thanks...

In August 05 I have both my boys with me at an appt for my dd for her

upcoming tear duct probing. I mention to the doctor that he has some

food issues. She tells me that there are some new test on the market

for environmental and chemical allergies and ask if I would bring him

back. Well, okay, I'll bring him back. I haven't taken him to a

doctor in a long time for a check-up since no doctor seemed able to

tell me what was wrong with him. He was 3 still wearing size 24 mo

and 2T and his sister was catching up to him in weight.

Over the summer he had started to tell me his stomach hurt. Well, as

an infant he lived on homeopathic Tummy medication, so I pulled that

out and gave it to him. I figured it would either work or give a

placebo effect. Eitherway, I blew off him telling me his tummy hurt.

I think I was so frustrated by lack of answers that I let that over

shadow what I should have taken seriously. He also would hurt so bad

he could not walk and I thought he was playing a game, you know 3 year

olds.

He also had stopped eating except for pure necessity. He would eat

the veggies and fruits and leave the rest, occassionally taking 2 or 3

bites of meat. We were watching our little boy waste away and could

not force him to eat more. I looked into Pediasure, but knowing his

diary issue, that was out.

On Sept 8, 2005 we had our answer. I took him back to this young

pediatrican and she reviewed his medical records, his growth charts,

she's looking at his sibling, noting the height of me and my husband,

and I share with her my list of offending foods and she said it is

either Celiac Disease or Cystic Fibrosis, but she clarified and said

she really didn't think it was CF. She ordered the TTG and some

allergy test. And I went home to read up on it, stopping at McD for

lunch. Where he ate his last chicken nuggets and had stomach pain and

couldn't walk and it all clicked...

Of course the TTG came back negative b/c he was on a nearly gluten

free diet. I had asked her to run the rest of the Celiac Disease

panel b/c I didn't want to go through 2 blood draws and I knew the TTG

would come back negative. Those other test didn't happen and I was

unaware they didn't happen until he had been complete GF for a couple

of weeks and we had started teaching him about gluten and that is why

his tummy hurt.

So nearly 60 days into GF, we see a Pedi GI who orders the entire

Panel including the gene markers. We get those back, IGG positive and

DQ2. My dh and I have the CD panel done, Pedi GI order it for us.

I'm negative, my dh had the gene and we are waiting still on the rest

of his results to reach our hands.

In the mean time, 54 days into GF our little boy gained 1 1/2 pounds

an about 3/4 " in height.

No biopsy, that would require making him eat gluten and we've worked

to hard teaching him not to eat gluten and he ask before he eats

anything 'it's gots wheats?' We are not going to lie and sneak gluten

into him, he would know. We're working on trying to increase his

appetite. He still will not eat much.

We are going to see Dr. Fasano Tues and I'm not sure why... I want to

see his nutritionist, we have some issues that need to be worked on.

And maybe some good insight to the whole not wanting to eat issue will

be helpful in getting him past it.

I know he can not tell the difference between hunger and pain. He has

a very high pain threshold. I hope that someday he will be able to

distinguish hunger pain from just the pain he has lived with up until

September.

I believe with every bone in my body that gluten passes into

breastmilk. The pediatric GI we have seen also believe this to be

true dispite the publications from the Celiac Disease Foundation that

state otherwise.

The most symptomatic time period for him was between 9 mo old and 13

mo old when solids were being eaten in addition to breastfeeding.

That was the time to biopsy him, but no one had ever even mentioned

Celiac Disease and I had only hear the words 1X before long before he

was born.

My daughter who is still bfing has only had the frothy poop 2X or 3X

and when it happened I said 'oh, no not her too, what is this from.'

I have to wonder if she has CD too, she does not like bread or

crackers, of course they haven't been around her much b/c I didn't

have them around her brother. I would like to see if she has diarrhea

from crackers etc, but she won't eat them. Makes me wonder... She

didn't react to my breastmilk like her brother, but then again there

are a lot of factors that go into breastmilk -- if I had a leaky gut

with my CD child and it was healed by the time I had her???

I wish I had kept a journal of his life as a baby. It was horrific

and I cried for days after reading about Celiac Disease knowing I

could have spared him if I had known. I would have gone GF, I was

already DF for him. And the saddest part, I mentioned his dx to the

La Leche League leaders who had been with me through his infancy and

one said well that makes sense, she knew what CD was and had never

mentioned it to me. The other also seemed to have a vague

understanding of CD and she was the one I was with on the phone

discussing his food reactions and not knowing where to turn.

If you have read this far, bless you. Sorry it is so long. I just

really believe there are a lot of infants out there who are suffering

'colic' etc and pediatricians are not giving the parents the benefit

of even questioning them about family history etc. No child should

suffer from drinking the best food for human babies -- human milk and

yet my little boy did suffer and has lasting effects from his painful

infancy.

Rejoyce

Winchester,VA

[Guest guest]

I am a breastfeeding non-celiac gluten eating mom. I was

breastfeeding my second child and knew that his stools should

unformed, mustard colored, seedy etc. However, his stools were

frothy, green, sometimes browny yellow, the stink was not of sweet bf

poos, sometimes with white chunks (now I realize probably milk fat),

mucousy like egg whites. Sometimes he had rashes that looked like a

burn and I knew it was acid from his stomach running through him to

burn his butt. I used cloth diapers, I knew this was not right. It

looked like his intestinal lining was being ripped from his body at

every bowel movement and when the lining was gone, the burn rash would

come from the acid.

In the beginning we thought dairy, so I went off all dairy, every bit

of it. And he got somewhat better, but not normal still. By age 3

months he has settled down a bit.

I took him to the pediatrician and he reluctantly agreed to run a

stool test for Garadia, a bacteria. Of course that was negative he

was only 4 or 5 mo old at the time.

He nursed a lot, never could go 2 hours without nursing even at 6 mo

old. He cried all the time, literally from day 1. In the hospital he

slept sitting upright in my husband's arms, when my dh would dose off

and move him he would scream. It was horrible. He slept in a true

carseat in semi-recline for the first 3 mo of his life, sleeping only

20 min at a time. We was slow to gain weight, but no one seemed

concerned, they told me to nurse more!!!

I classified him as a Dr. Sears classic high needs infant/ child. He

seemed to be in pain and we were lead to believe it's probably colic

and not to worry. His legs had to be up into his stomach to sleep, he

loved being carried in a baby sling with his legs tucked up.

When we started to introduce solids, oh, boy the rashes started to

come more. Bananas - anal rash, sweet potatos - anal rash, peaches -

anal rash. Oatmeal was killer, came out the way it went in and rice

cereal wasn't much better. I tried millet made at home but I wasn't

very good about having to do all the extra prep work. White grape

juice and turkey were the only two foods he could eat. As he got a

bit older the rashes were not so pronounced, and I though well maybe

the breastfeeding is keeping him from having solid stools. My other

son was constipated all the time, still is (CD dx will come soon I

believe).

He also would push away bread, biscuts, cake, donuts, and cookies. He

sometimes would take one bite and sometimes not. I took a distict

notice to this at Christmas when he was 8 months old, he did not eat

the bread with the dinner. He ate the turkey, no gravy, and some

veggies. He simply didn't seem to like them so I took them off his

menu. He prefered strawberries, nix the bananas. He also liked

salads. He eats his brocolli before touching his meat!!! So, as a

mom I think well this is okay, he likes healthy food all the better

for him.

WHen he was starting to walk, I can remember some very distinct

moments. One day I heard this horrible explosion from his butt, I

looked at him and said are you okay. I won't go into detail of what

it contained but it was classic CD of unprocessed foods, froth,

mucous, etc. This happened quite a few times. It stained the diaper

covers permanently.

Around the time he turned 2, I gave birth to our daughter. In the

months prior to her birth we discovered that certain foods were more

likely to cause diarrhea than others. My mother was staying with us

and I told her that he couldn't eat crackers, yogurt 1X per 3 days,

b/c they gave him diarrhea and rashes. She did not question it and

did not feed him crackers or yogurt. His diarrhea episodes decreased,

which is good b/c my mother isn't the kind who deals well with messes.

My mother being a diabetic an knowing I watch the amount of carbs I

eat was fixing dinners that were basically meat, veggies and salad. I

don't recall what she fed my children for lunch, probably mac and

cheese, sandwiches, soup, all gluten containing. Once my mother left

and my MIL was back in the picture of watching him on occassion in the

evening or weekend, she obviously did not listen to me when I said he

can't eat these things. But this was typical, at first we thought he

was milk intolerant and I would tell her not to feed him milk and she

did and I knew it b/c the diarrhea was worse.

So we're going about our business limiting cracker products and he is

still having diarrhea but not as often. The cracker products that

were on the off list were specifically from Nabisco. I asked the

doctor why he couldn't eat certain foods without diarrhea, no answer.

Almost 3, early 05, he had diarrhea with the mucous on a Sat and it

had been a long time since that had happened this badly. I phone up

the person who brought the snack for the Friday event we attend and

she said it was Sociable crackers!!! Well that explained the

diarrhea, but I still had no idea why those foods did this too him.

He had a skin reaction to touching Rye at church around this time and

I decided to take him to an allergist finally, this is now April 05.

I take my list of offending foods, I call ahead to make sure they can

test for Rye. It's 55 miles from my house. We get there, he has no

answers, test him for everything but RYE!!! And we leave with " well,

just keep doing what you're doing " . Thanks...

In August 05 I have both my boys with me at an appt for my dd for her

upcoming tear duct probing. I mention to the doctor that he has some

food issues. She tells me that there are some new test on the market

for environmental and chemical allergies and ask if I would bring him

back. Well, okay, I'll bring him back. I haven't taken him to a

doctor in a long time for a check-up since no doctor seemed able to

tell me what was wrong with him. He was 3 still wearing size 24 mo

and 2T and his sister was catching up to him in weight.

Over the summer he had started to tell me his stomach hurt. Well, as

an infant he lived on homeopathic Tummy medication, so I pulled that

out and gave it to him. I figured it would either work or give a

placebo effect. Eitherway, I blew off him telling me his tummy hurt.

I think I was so frustrated by lack of answers that I let that over

shadow what I should have taken seriously. He also would hurt so bad

he could not walk and I thought he was playing a game, you know 3 year

olds.

He also had stopped eating except for pure necessity. He would eat

the veggies and fruits and leave the rest, occassionally taking 2 or 3

bites of meat. We were watching our little boy waste away and could

not force him to eat more. I looked into Pediasure, but knowing his

diary issue, that was out.

On Sept 8, 2005 we had our answer. I took him back to this young

pediatrican and she reviewed his medical records, his growth charts,

she's looking at his sibling, noting the height of me and my husband,

and I share with her my list of offending foods and she said it is

either Celiac Disease or Cystic Fibrosis, but she clarified and said

she really didn't think it was CF. She ordered the TTG and some

allergy test. And I went home to read up on it, stopping at McD for

lunch. Where he ate his last chicken nuggets and had stomach pain and

couldn't walk and it all clicked...

Of course the TTG came back negative b/c he was on a nearly gluten

free diet. I had asked her to run the rest of the Celiac Disease

panel b/c I didn't want to go through 2 blood draws and I knew the TTG

would come back negative. Those other test didn't happen and I was

unaware they didn't happen until he had been complete GF for a couple

of weeks and we had started teaching him about gluten and that is why

his tummy hurt.

So nearly 60 days into GF, we see a Pedi GI who orders the entire

Panel including the gene markers. We get those back, IGG positive and

DQ2. My dh and I have the CD panel done, Pedi GI order it for us.

I'm negative, my dh had the gene and we are waiting still on the rest

of his results to reach our hands.

In the mean time, 54 days into GF our little boy gained 1 1/2 pounds

an about 3/4 " in height.

No biopsy, that would require making him eat gluten and we've worked

to hard teaching him not to eat gluten and he ask before he eats

anything 'it's gots wheats?' We are not going to lie and sneak gluten

into him, he would know. We're working on trying to increase his

appetite. He still will not eat much.

We are going to see Dr. Fasano Tues and I'm not sure why... I want to

see his nutritionist, we have some issues that need to be worked on.

And maybe some good insight to the whole not wanting to eat issue will

be helpful in getting him past it.

I know he can not tell the difference between hunger and pain. He has

a very high pain threshold. I hope that someday he will be able to

distinguish hunger pain from just the pain he has lived with up until

September.

I believe with every bone in my body that gluten passes into

breastmilk. The pediatric GI we have seen also believe this to be

true dispite the publications from the Celiac Disease Foundation that

state otherwise.

The most symptomatic time period for him was between 9 mo old and 13

mo old when solids were being eaten in addition to breastfeeding.

That was the time to biopsy him, but no one had ever even mentioned

Celiac Disease and I had only hear the words 1X before long before he

was born.

My daughter who is still bfing has only had the frothy poop 2X or 3X

and when it happened I said 'oh, no not her too, what is this from.'

I have to wonder if she has CD too, she does not like bread or

crackers, of course they haven't been around her much b/c I didn't

have them around her brother. I would like to see if she has diarrhea

from crackers etc, but she won't eat them. Makes me wonder... She

didn't react to my breastmilk like her brother, but then again there

are a lot of factors that go into breastmilk -- if I had a leaky gut

with my CD child and it was healed by the time I had her???

I wish I had kept a journal of his life as a baby. It was horrific

and I cried for days after reading about Celiac Disease knowing I

could have spared him if I had known. I would have gone GF, I was

already DF for him. And the saddest part, I mentioned his dx to the

La Leche League leaders who had been with me through his infancy and

one said well that makes sense, she knew what CD was and had never

mentioned it to me. The other also seemed to have a vague

understanding of CD and she was the one I was with on the phone

discussing his food reactions and not knowing where to turn.

If you have read this far, bless you. Sorry it is so long. I just

really believe there are a lot of infants out there who are suffering

'colic' etc and pediatricians are not giving the parents the benefit

of even questioning them about family history etc. No child should

suffer from drinking the best food for human babies -- human milk and

yet my little boy did suffer and has lasting effects from his painful

infancy.

Rejoyce

Winchester,VA

[Guest guest]

I am a breastfeeding non-celiac gluten eating mom. I was

breastfeeding my second child and knew that his stools should

unformed, mustard colored, seedy etc. However, his stools were

frothy, green, sometimes browny yellow, the stink was not of sweet bf

poos, sometimes with white chunks (now I realize probably milk fat),

mucousy like egg whites. Sometimes he had rashes that looked like a

burn and I knew it was acid from his stomach running through him to

burn his butt. I used cloth diapers, I knew this was not right. It

looked like his intestinal lining was being ripped from his body at

every bowel movement and when the lining was gone, the burn rash would

come from the acid.

In the beginning we thought dairy, so I went off all dairy, every bit

of it. And he got somewhat better, but not normal still. By age 3

months he has settled down a bit.

I took him to the pediatrician and he reluctantly agreed to run a

stool test for Garadia, a bacteria. Of course that was negative he

was only 4 or 5 mo old at the time.

He nursed a lot, never could go 2 hours without nursing even at 6 mo

old. He cried all the time, literally from day 1. In the hospital he

slept sitting upright in my husband's arms, when my dh would dose off

and move him he would scream. It was horrible. He slept in a true

carseat in semi-recline for the first 3 mo of his life, sleeping only

20 min at a time. We was slow to gain weight, but no one seemed

concerned, they told me to nurse more!!!

I classified him as a Dr. Sears classic high needs infant/ child. He

seemed to be in pain and we were lead to believe it's probably colic

and not to worry. His legs had to be up into his stomach to sleep, he

loved being carried in a baby sling with his legs tucked up.

When we started to introduce solids, oh, boy the rashes started to

come more. Bananas - anal rash, sweet potatos - anal rash, peaches -

anal rash. Oatmeal was killer, came out the way it went in and rice

cereal wasn't much better. I tried millet made at home but I wasn't

very good about having to do all the extra prep work. White grape

juice and turkey were the only two foods he could eat. As he got a

bit older the rashes were not so pronounced, and I though well maybe

the breastfeeding is keeping him from having solid stools. My other

son was constipated all the time, still is (CD dx will come soon I

believe).

He also would push away bread, biscuts, cake, donuts, and cookies. He

sometimes would take one bite and sometimes not. I took a distict

notice to this at Christmas when he was 8 months old, he did not eat

the bread with the dinner. He ate the turkey, no gravy, and some

veggies. He simply didn't seem to like them so I took them off his

menu. He prefered strawberries, nix the bananas. He also liked

salads. He eats his brocolli before touching his meat!!! So, as a

mom I think well this is okay, he likes healthy food all the better

for him.

WHen he was starting to walk, I can remember some very distinct

moments. One day I heard this horrible explosion from his butt, I

looked at him and said are you okay. I won't go into detail of what

it contained but it was classic CD of unprocessed foods, froth,

mucous, etc. This happened quite a few times. It stained the diaper

covers permanently.

Around the time he turned 2, I gave birth to our daughter. In the

months prior to her birth we discovered that certain foods were more

likely to cause diarrhea than others. My mother was staying with us

and I told her that he couldn't eat crackers, yogurt 1X per 3 days,

b/c they gave him diarrhea and rashes. She did not question it and

did not feed him crackers or yogurt. His diarrhea episodes decreased,

which is good b/c my mother isn't the kind who deals well with messes.

My mother being a diabetic an knowing I watch the amount of carbs I

eat was fixing dinners that were basically meat, veggies and salad. I

don't recall what she fed my children for lunch, probably mac and

cheese, sandwiches, soup, all gluten containing. Once my mother left

and my MIL was back in the picture of watching him on occassion in the

evening or weekend, she obviously did not listen to me when I said he

can't eat these things. But this was typical, at first we thought he

was milk intolerant and I would tell her not to feed him milk and she

did and I knew it b/c the diarrhea was worse.

So we're going about our business limiting cracker products and he is

still having diarrhea but not as often. The cracker products that

were on the off list were specifically from Nabisco. I asked the

doctor why he couldn't eat certain foods without diarrhea, no answer.

Almost 3, early 05, he had diarrhea with the mucous on a Sat and it

had been a long time since that had happened this badly. I phone up

the person who brought the snack for the Friday event we attend and

she said it was Sociable crackers!!! Well that explained the

diarrhea, but I still had no idea why those foods did this too him.

He had a skin reaction to touching Rye at church around this time and

I decided to take him to an allergist finally, this is now April 05.

I take my list of offending foods, I call ahead to make sure they can

test for Rye. It's 55 miles from my house. We get there, he has no

answers, test him for everything but RYE!!! And we leave with " well,

just keep doing what you're doing " . Thanks...

In August 05 I have both my boys with me at an appt for my dd for her

upcoming tear duct probing. I mention to the doctor that he has some

food issues. She tells me that there are some new test on the market

for environmental and chemical allergies and ask if I would bring him

back. Well, okay, I'll bring him back. I haven't taken him to a

doctor in a long time for a check-up since no doctor seemed able to

tell me what was wrong with him. He was 3 still wearing size 24 mo

and 2T and his sister was catching up to him in weight.

Over the summer he had started to tell me his stomach hurt. Well, as

an infant he lived on homeopathic Tummy medication, so I pulled that

out and gave it to him. I figured it would either work or give a

placebo effect. Eitherway, I blew off him telling me his tummy hurt.

I think I was so frustrated by lack of answers that I let that over

shadow what I should have taken seriously. He also would hurt so bad

he could not walk and I thought he was playing a game, you know 3 year

olds.

He also had stopped eating except for pure necessity. He would eat

the veggies and fruits and leave the rest, occassionally taking 2 or 3

bites of meat. We were watching our little boy waste away and could

not force him to eat more. I looked into Pediasure, but knowing his

diary issue, that was out.

On Sept 8, 2005 we had our answer. I took him back to this young

pediatrican and she reviewed his medical records, his growth charts,

she's looking at his sibling, noting the height of me and my husband,

and I share with her my list of offending foods and she said it is

either Celiac Disease or Cystic Fibrosis, but she clarified and said

she really didn't think it was CF. She ordered the TTG and some

allergy test. And I went home to read up on it, stopping at McD for

lunch. Where he ate his last chicken nuggets and had stomach pain and

couldn't walk and it all clicked...

Of course the TTG came back negative b/c he was on a nearly gluten

free diet. I had asked her to run the rest of the Celiac Disease

panel b/c I didn't want to go through 2 blood draws and I knew the TTG

would come back negative. Those other test didn't happen and I was

unaware they didn't happen until he had been complete GF for a couple

of weeks and we had started teaching him about gluten and that is why

his tummy hurt.

So nearly 60 days into GF, we see a Pedi GI who orders the entire

Panel including the gene markers. We get those back, IGG positive and

DQ2. My dh and I have the CD panel done, Pedi GI order it for us.

I'm negative, my dh had the gene and we are waiting still on the rest

of his results to reach our hands.

In the mean time, 54 days into GF our little boy gained 1 1/2 pounds

an about 3/4 " in height.

No biopsy, that would require making him eat gluten and we've worked

to hard teaching him not to eat gluten and he ask before he eats

anything 'it's gots wheats?' We are not going to lie and sneak gluten

into him, he would know. We're working on trying to increase his

appetite. He still will not eat much.

We are going to see Dr. Fasano Tues and I'm not sure why... I want to

see his nutritionist, we have some issues that need to be worked on.

And maybe some good insight to the whole not wanting to eat issue will

be helpful in getting him past it.

I know he can not tell the difference between hunger and pain. He has

a very high pain threshold. I hope that someday he will be able to

distinguish hunger pain from just the pain he has lived with up until

September.

I believe with every bone in my body that gluten passes into

breastmilk. The pediatric GI we have seen also believe this to be

true dispite the publications from the Celiac Disease Foundation that

state otherwise.

The most symptomatic time period for him was between 9 mo old and 13

mo old when solids were being eaten in addition to breastfeeding.

That was the time to biopsy him, but no one had ever even mentioned

Celiac Disease and I had only hear the words 1X before long before he

was born.

My daughter who is still bfing has only had the frothy poop 2X or 3X

and when it happened I said 'oh, no not her too, what is this from.'

I have to wonder if she has CD too, she does not like bread or

crackers, of course they haven't been around her much b/c I didn't

have them around her brother. I would like to see if she has diarrhea

from crackers etc, but she won't eat them. Makes me wonder... She

didn't react to my breastmilk like her brother, but then again there

are a lot of factors that go into breastmilk -- if I had a leaky gut

with my CD child and it was healed by the time I had her???

I wish I had kept a journal of his life as a baby. It was horrific

and I cried for days after reading about Celiac Disease knowing I

could have spared him if I had known. I would have gone GF, I was

already DF for him. And the saddest part, I mentioned his dx to the

La Leche League leaders who had been with me through his infancy and

one said well that makes sense, she knew what CD was and had never

mentioned it to me. The other also seemed to have a vague

understanding of CD and she was the one I was with on the phone

discussing his food reactions and not knowing where to turn.

If you have read this far, bless you. Sorry it is so long. I just

really believe there are a lot of infants out there who are suffering

'colic' etc and pediatricians are not giving the parents the benefit

of even questioning them about family history etc. No child should

suffer from drinking the best food for human babies -- human milk and

yet my little boy did suffer and has lasting effects from his painful

infancy.

Rejoyce

Winchester,VA

[Guest guest]

This thread has gotten me remembering.

My oldest dd is so far completely negative.

My dd who was diagnosed this summer at 5yo was my biggest baby, at 8lb.14oz.

I've never seen such chubby thighs on a newborn! By the time she was diagnosed

she was definitely one of the smallest in her classes.

She did have pretty bad cradle cap, and was ALWAYS constipated from the very

beginning. I nursed her for 21months, until I was pregnant with her brother.

We introduced baby cereals and foods at around 6 months. After 2 weeks of mush

she refused to eat it, and only wanted people food. So I had to hand-feed her

tiny bits of soft vegis, meats, potatoes, etc. It was such a drag, but now that

I think of it, it must have helped her. By 12mo she was on most " real " food,

and between 12mo and 18mo she did not grow or gain weight. We also moved during

that time, so she saw 3 different Drs. and the new ones didn't catch my concern

about her lack of growth. One thoughtless nurse told me to give her Children's

Ensure or put chocolate in her milk. I asked our pediatrician repeatedly about

her growth, but he just figured she was going to be on the small size. He did

know about her cousin having CD. He was surprised that she was the positive

one. We all thought it would be my son.

My ds had colic, reflux, you name it. We finally figured out it was milk in my

diet that caused rashes all over his body, and we got him on Prevacid, which

helped the reflux. He was tested for CD as a baby, when they were doing the

dairy allergy testing. It was negative then. At his 2.5yo CD test with the

rest of the family he only had one positive antibody, the one they DON'T worry

about. He will be tested again in 2 weeks. I wouldn't be surprised at all if

he ends up with CD also, but he may just have milk intollerance.

Well, that was a really long way to answer your questions.

Laurie in NJ.

" & Mike " wrote:

>

>PLEASE read and respond to my request below to my email at mikea@...

>and to our group. I would like to know if you, in retrospect, can determine

>any signs your Celiac had in infancy that were signals that this disease was

>present when you didn't even know about it at the time. This gal Cheryl and

>I have been trading stories from our kid's infancy/toddlerhood and we see

>now there were signals from the start that our kids were suffering, yet we

>didn't know why at the time. Our kids had really bad cradle cap, muscle

>aches, diaper rash, projectile vomiting, poor growth...How about you all?

>Will you please help me? I am trying to convince my very smart Nurse

>Practitioner, who diagnosed my daughter, when no one else could, to write a

>book/pamphlet for pediatricians to read (and possibly hand out to new

>parents) so they will recognize these early signs as possible Celiacs and

>test babies or get them (and breast feeding moms) off wheat/gluten

>immediately before further damage results! We need this! There are too

>many stories I hear over and over again about Dr.'s that are unfamiliar with

>or are unknowledgeable about this disease. Afterall, my child was diagnosed

>with Asthma, when it was Celiacs the entire time! AHHH!

>

>Thanks so much!

>

>

>

>

>

>

>

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[Guest guest]

My daughter had rashes on her head and protruding abdomen.

My son had growth retardation, diarrhea, and protruding abdomen.

All symptoms disappeared with gluten free diet.

& Mike wrote:

PLEASE read and respond to my request below to my email at

mikea@...

and to our group. I would like to know if you, in retrospect, can

determine

any signs your Celiac had in infancy that were signals that this

disease was

present when you didn't even know about it at the time. This gal

Cheryl and

I have been trading stories from our kid's infancy/toddlerhood and we

see

now there were signals from the start that our kids were suffering, yet

we

didn't know why at the time. Our kids had really bad cradle cap, muscle

aches, diaper rash, projectile vomiting, poor growth...How about you

all?

Will you please help me? I am trying to convince my very smart Nurse

Practitioner, who diagnosed my daughter, when no one else could, to

write a

book/pamphlet for pediatricians to read (and possibly hand out to new

parents) so they will recognize these early signs as possible Celiacs

and

test babies or get them (and breast feeding moms) off wheat/gluten

immediately before further damage results! We need this! There are too

many stories I hear over and over again about Dr.'s that are unfamiliar

with

or are unknowledgeable about this disease. Afterall, my child was

diagnosed

with Asthma, when it was Celiacs the entire time! AHHH!

Thanks so much!

[Guest guest]

My daughter had rashes on her head and protruding abdomen.

My son had growth retardation, diarrhea, and protruding abdomen.

All symptoms disappeared with gluten free diet.

& Mike wrote:

PLEASE read and respond to my request below to my email at

mikea@...

and to our group. I would like to know if you, in retrospect, can

determine

any signs your Celiac had in infancy that were signals that this

disease was

present when you didn't even know about it at the time. This gal

Cheryl and

I have been trading stories from our kid's infancy/toddlerhood and we

see

now there were signals from the start that our kids were suffering, yet

we

didn't know why at the time. Our kids had really bad cradle cap, muscle

aches, diaper rash, projectile vomiting, poor growth...How about you

all?

Will you please help me? I am trying to convince my very smart Nurse

Practitioner, who diagnosed my daughter, when no one else could, to

write a

book/pamphlet for pediatricians to read (and possibly hand out to new

parents) so they will recognize these early signs as possible Celiacs

and

test babies or get them (and breast feeding moms) off wheat/gluten

immediately before further damage results! We need this! There are too

many stories I hear over and over again about Dr.'s that are unfamiliar

with

or are unknowledgeable about this disease. Afterall, my child was

diagnosed

with Asthma, when it was Celiacs the entire time! AHHH!

Thanks so much!

[Guest guest]

My daughter had rashes on her head and protruding abdomen.

My son had growth retardation, diarrhea, and protruding abdomen.

All symptoms disappeared with gluten free diet.

& Mike wrote:

PLEASE read and respond to my request below to my email at

mikea@...

and to our group. I would like to know if you, in retrospect, can

determine

any signs your Celiac had in infancy that were signals that this

disease was

present when you didn't even know about it at the time. This gal

Cheryl and

I have been trading stories from our kid's infancy/toddlerhood and we

see

now there were signals from the start that our kids were suffering, yet

we

didn't know why at the time. Our kids had really bad cradle cap, muscle

aches, diaper rash, projectile vomiting, poor growth...How about you

all?

Will you please help me? I am trying to convince my very smart Nurse

Practitioner, who diagnosed my daughter, when no one else could, to

write a

book/pamphlet for pediatricians to read (and possibly hand out to new

parents) so they will recognize these early signs as possible Celiacs

and

test babies or get them (and breast feeding moms) off wheat/gluten

immediately before further damage results! We need this! There are too

many stories I hear over and over again about Dr.'s that are unfamiliar

with

or are unknowledgeable about this disease. Afterall, my child was

diagnosed

with Asthma, when it was Celiacs the entire time! AHHH!

Thanks so much!

[Guest guest]

,

Sometimes I wonder if my daughter had it from day 1....? Right

after she was born I nursed her for a few minutes before they took

her for her bath. When they brought her back to me, the nurse

said, " wow you must have milk already becuase she just threw up all

over me! " She told me she had never had a baby within the first few

hours throw up that much. They watched her very closely those 2

days becuase of it.

Then at her 2 week check-up I told the doctor that her tummy was

huge and seemed rather distended to me. I was told that babies have

larger tummies than you would expect becuase it has to hold all the

internal organs, but then when I undressed her the doctor said she

took it back, they should not be that huge.

At 6 weeks old she began having rather large amounts of blood in her

stools. She screamed all of the time, always had to be held, and

fell off the growth charts. She had poopy diapers 12-15 times per

day that often burned her bottom immediately. Her stools usually

had undigested food. And although she stopped growing her tummy

stayed huge!

The pediatrician refused to give her her 1 year shots because she

was behind developmentally. Another odd thing with her and I don't

know if it is related or not, but she couldn't walk very well until

she went GF becuase she hadn't lost the reflex that makes babies

toes curl if you put pressure on the bottoms of their feet.

Everytime she would stand up, her toes would curl. It could have

just been timing though.

Her hair didn't grow in until she went GF. And the oddest sign was

she lost her voice. The GI who diagnosed her said that he had never

seen that before and wondered if it was from crying so much. But it

wasn't just hoarse it was gone. That was actually the symptom that

finally convinced the DR to do the scope. Her blood tests were

negative so we were not looking for celiac, but since he was scoping

her to look at the esophogus he decided to do a biopsy, and she had

total villous atrophy.

Good Luck with this, I'll be interested in your findings!

Jonyce

>

>

> PLEASE read and respond to my request below to my email at

mikea@a...

> and to our group. I would like to know if you, in retrospect, can

determine

> any signs your Celiac had in infancy that were signals that this

disease was

> present when you didn't even know about it at the time. This gal

Cheryl and

> I have been trading stories from our kid's infancy/toddlerhood and

we see

> now there were signals from the start that our kids were

suffering, yet we

> didn't know why at the time. Our kids had really bad cradle cap,

muscle

> aches, diaper rash, projectile vomiting, poor growth...How about

you all?

> Will you please help me? I am trying to convince my very smart

Nurse

> Practitioner, who diagnosed my daughter, when no one else could,

to write a

> book/pamphlet for pediatricians to read (and possibly hand out to

new

> parents) so they will recognize these early signs as possible

Celiacs and

> test babies or get them (and breast feeding moms) off wheat/gluten

> immediately before further damage results! We need this! There

are too

> many stories I hear over and over again about Dr.'s that are

unfamiliar with

> or are unknowledgeable about this disease. Afterall, my child was

diagnosed

> with Asthma, when it was Celiacs the entire time! AHHH!

>

> Thanks so much!

>

>

>