Re: Sib with digestive prob. poss imm?Celiac? HELP

[Guest guest]

What about reflux? My had reflux from birth.. ph was fine until a

few years ago. He is now 8. He started with stomach aches and feeling

like he was going to throw up. He would have pain at night and say it was

coming up his throat (throw up he would say). We re perplexed as had

never had vomiting-'s GERD presents as severe chest pain (different from

his costochondritis pain) - the ped even sent him to the ER for a heart work

up b/c the chest pain was so severe. Back to ph--- he's a puker. This

went on for months-he would throw up in the mornings and sometimes in the

evenings. just depended, but the mornings were awful. I finally brought him

to the ped who has GERD herself and she told me, " It is GERD. " GERD can

make kids throw up.. So we started Prevacid once a day and followed up with

the GI (they see a GI already for other issues they have) and he was

better, but still having episodes where he would puke. So we have him on

15mg twice a day like his brother.

If either boy misses a dose-they know it and we know it. seems to be

able to miss a dose (on accident) and be okay - if he misses more than one

in a week the pain hits. ph-he pukes. Just like clock work-if he

doesn't have his morning dose he'll puke several hours after it is due.

He has gotten so much better. He now only pukes once every few

months-sometimes we'll have a bad week or month and he'll puke more.but it

sure beats several times a week.. Stress can definitely cause it to act

up!!!! ph will have more problems when he is upset, etc----

I am not saying this is what your son has and I'm not a doctor-just relaying

my boys experience.. I have also developed GERD in the last several years

and I feel like I am going to puke when it acts up-so I can relate!!!!

Peace Be With You,

Pattie

Don't let your past dictate who you are now, but let it be a part of who you

will become.

_____

I am a lurker here. My 12 yr old daughter has Selective Antibody Deficiency

and was on IVIG for 6 years. She has been off for 1 year this month and on

500mg 2xdy of Amoxcillian and has been fine so far.

The problem now is my son, who is 6, and until now healthy as a horse. He

has always been prone to throw up. When he was a toddler he would throw up

during a tantrum, occasionally over things he said smelled bad etc... Has

complained from time to time of tummy ache. I just thought it was him

having a sensitive stomache, pedetrician chalked it up to easy gag reflex.

Anyway, for the last 6 weeks he has woke up complaining of a bad stomache

ache, sometimes will wake up in the night with it hurtint so bad he is

crying.He will occasionally get up in the moring say his stomache hurts and

then throw up. He will then go several days and be fine and will eat fine.

It's not school related, he is doing well, has lots of friends and cries and

gets mad if he can't go. Took him to gastroenterolgoist (sp) here in

Atlanta. Childrens Digestive Healthcare of Atlanta for those of you in Ga.

Anyway, they are looking at parasites, we have lots of animals and live on

a farm. Cows, horses, three dogs, cats, and some strays that wander.

Also, did immune system work up looking for immune system problem or

autoimmune problem and mentioned Celiac. I can not pinpoint a food allergy

problem though. This is the blood work they did

IGa , IGg, IGe, ANA, liver enzyme, sed rate, transgluten IGa

Any thoughts ladies????

_____

[Guest guest]

PS-we were also told that mornings were the worst b/c of lying down all

night. And now that I have GERD myself.I have to agree! Could it be

possible that he has had GERD all along, but it has just gotten worse?

Peace Be With You,

Pattie

Don't let your past dictate who you are now, but let it be a part of who you

will become.

_____

[Guest guest]

Yeah. I have wondered about the GERD thing myself. The ped. had him on Axid,

but he was only on it for a week if that long. He was a spitter upper as a

infant, and puker as a toddler. I think they are just ruling out the things

they can do without doing any type of invasive procedure first. I think we are

going to get back the results on Wed and they will be fine. He doesn't have

diarrhea, which from what I can read is one of the major symptoms along with

abdominal pain of parasites and celiac. Vomiting is not a major symptom of these

things that I can find. Is upper GI how they diagnose the GERD? Is that the

only way? I have noticed, per pedetricians, instructions he wanted to see what

would happen with Mylanta. This is after the Axid was stopped and the Zithromax

was started he told me to do this. Everytime he says he has a stomache ache

give a dose of Mylanta and lets see if he feels better in a little while. Not

that we are going to treat this with Mylanta as a

solution. He just wanted to see if an immediate acid reducer seemed to help.

Must be the name ph. My little puker is named ph as well.

Jerri

Pattie Curran <catholicmomof3@...> wrote:

What about reflux? My had reflux from birth.. ph was fine until a

few years ago. He is now 8. He started with stomach aches and feeling

like he was going to throw up. He would have pain at night and say it was

coming up his throat (throw up he would say). We re perplexed as had

never had vomiting-'s GERD presents as severe chest pain (different from

his costochondritis pain) - the ped even sent him to the ER for a heart work

up b/c the chest pain was so severe. Back to ph--- he's a puker. This

went on for months-he would throw up in the mornings and sometimes in the

evenings. just depended, but the mornings were awful. I finally brought him

to the ped who has GERD herself and she told me, " It is GERD. " GERD can

make kids throw up.. So we started Prevacid once a day and followed up with

the GI (they see a GI already for other issues they have) and he was

better, but still having episodes where he would puke. So we have him on

15mg twice a day like his brother.

If either boy misses a dose-they know it and we know it. seems to be

able to miss a dose (on accident) and be okay - if he misses more than one

in a week the pain hits. ph-he pukes. Just like clock work-if he

doesn't have his morning dose he'll puke several hours after it is due.

He has gotten so much better. He now only pukes once every few

months-sometimes we'll have a bad week or month and he'll puke more.but it

sure beats several times a week.. Stress can definitely cause it to act

up!!!! ph will have more problems when he is upset, etc----

I am not saying this is what your son has and I'm not a doctor-just relaying

my boys experience.. I have also developed GERD in the last several years

and I feel like I am going to puke when it acts up-so I can relate!!!!

Peace Be With You,

Pattie

Don't let your past dictate who you are now, but let it be a part of who you

will become.

_____

I am a lurker here. My 12 yr old daughter has Selective Antibody Deficiency

and was on IVIG for 6 years. She has been off for 1 year this month and on

500mg 2xdy of Amoxcillian and has been fine so far.

The problem now is my son, who is 6, and until now healthy as a horse. He

has always been prone to throw up. When he was a toddler he would throw up

during a tantrum, occasionally over things he said smelled bad etc... Has

complained from time to time of tummy ache. I just thought it was him

having a sensitive stomache, pedetrician chalked it up to easy gag reflex.

Anyway, for the last 6 weeks he has woke up complaining of a bad stomache

ache, sometimes will wake up in the night with it hurtint so bad he is

crying.He will occasionally get up in the moring say his stomache hurts and

then throw up. He will then go several days and be fine and will eat fine.

It's not school related, he is doing well, has lots of friends and cries and

gets mad if he can't go. Took him to gastroenterolgoist (sp) here in

Atlanta. Childrens Digestive Healthcare of Atlanta for those of you in Ga.

Anyway, they are looking at parasites, we have lots of animals and live on

a farm. Cows, horses, three dogs, cats, and some strays that wander.

Also, did immune system work up looking for immune system problem or

autoimmune problem and mentioned Celiac. I can not pinpoint a food allergy

problem though. This is the blood work they did

IGa , IGg, IGe, ANA, liver enzyme, sed rate, transgluten IGa

Any thoughts ladies????

_____

[Guest guest]

and ph have both had endoscopies- 3, ph 2. biopsies of

their esophagus, stomach and small intestine, pancreatic stimulation test

and the disaccharidease test done. has also had the pH probe done

twice. We pretty much have a clear cut diagnosis because he stops the

Prevacid and he pukes starts it and he's fine again. is the same with

chest pain stop meds and it comes back.on meds he is fine-and he was too

little when this first started to tell which meds were stopped. Biopsies

show inflammation of the esophagus, etc, etc. We have done trials off for

both boys and the symptoms just come back. Keep us posted.

Peace Be With You,

Pattie

Don't let your past dictate who you are now, but let it be a part of who you

will become.

_____

From: [mailto: ] On Behalf Of

jerri dangerfield

Sent: Friday, March 24, 2006 5:43 PM

Subject: RE: Sib with digestive prob. poss imm?Celiac? HELP

Yeah. I have wondered about the GERD thing myself. The ped. had him on

Axid, but he was only on it for a week if that long. He was a spitter upper

as a infant, and puker as a toddler. I think they are just ruling out the

things they can do without doing any type of invasive procedure first. I

think we are going to get back the results on Wed and they will be fine. He

doesn't have diarrhea, which from what I can read is one of the major

symptoms along with abdominal pain of parasites and celiac. Vomiting is not

a major symptom of these things that I can find. Is upper GI how they

diagnose the GERD? Is that the only way? I have noticed, per pedetricians,

instructions he wanted to see what would happen with Mylanta. This is after

the Axid was stopped and the Zithromax was started he told me to do this.

Everytime he says he has a stomache ache give a dose of Mylanta and lets see

if he feels better in a little while. Not that we are going to treat this

with Mylanta as a

solution. He just wanted to see if an immediate acid reducer seemed to

help.

Must be the name ph. My little puker is named ph as well.

Jerri

_____

[Guest guest]

" puker as a toddler "

Jerri and Pattie -

Have you guys ruled out eosinophilic disease? Signs are varied but it is

generally characterized by abdominal pain and vomiting -- the signs can change

over time. Just thinking...

mom to CVIDer

[Guest guest]

They biopsied everything and I don't recall them saying anything about it.

I know a few SDSers who have the eosinophilic disease. ph also has

ulcers.. We have pictures of those. ~sigh~ what a thing to have in your

scrapbook. I can just see ph showing his girlfriends those when he gets

older.. Or will it be me!?

Peace Be With You,

Pattie

Don't let your past dictate who you are now, but let it be a part of who you

will become.

_____

From: [mailto: ] On Behalf Of

Schulman

Sent: Friday, March 24, 2006 7:28 PM

Subject: RE: Sib with digestive prob. poss imm?Celiac? HELP

" puker as a toddler "

Jerri and Pattie -

Have you guys ruled out eosinophilic disease? Signs are varied but it is

generally characterized by abdominal pain and vomiting -- the signs can

change over time. Just thinking...

mom to CVIDer

[Guest guest]

What is eosinophilic disease?? I have never heard of it.

Schulman <dietdoc@...> wrote: " puker as a toddler "

Jerri and Pattie -

Have you guys ruled out eosinophilic disease? Signs are varied but it is

generally characterized by abdominal pain and vomiting -- the signs can change

over time. Just thinking...

mom to CVIDer

[Guest guest]

My 3 year old, Cole, has GERD and possibly Celiac. From my

experience with him, it sounds like your son is suffering more from

GERD-like symptoms rather than Celiac-related symptoms. Cole was a

spitter as an infant and needed to take Zantac for his reflux. More

recently his reflux has gotten more severe as he has been on

Amoxicillin daily for the PID. We have put him back on the Zantac

once again and his symptoms of the GERD have started to resolve. He

doesn't puke, but he " urps " up repetitively sort of like hiccups

when his reflux is acting up.

The question of Celiac has risen with him due to the number of

loose, mucous-like stools he has. He will have diahhrea approx. 4

out of 7 days. Followed by sometimes hard stools. He is still on

the growth chart for his age group, but although in the 80

percentile for height, he remains down near the 15-20% for weight.

He has had any significant weight gain in a year. These are all

classic signs of Celiac, along with the fact he has PID. While

there is no cure for Celiac, a person with it can live a more normal

life by maintaining a gluten-free diet.

That being said, it is possible to have a gluten and/or lactose

sensitivity and exhibit some similar clinical symptoms of GERD and

Celiac. One simple way to test the lactose/gluten sensitivity is to

abstain from all products containing them for a period of one week.

(Not fun...we have tried it here...but it works!) After that time

have the person drink a glass of milk and see what happens. If they

have the belly aches and vomiting or diahhrea....BINGO! Of course,

that test really proves the lactose...gluten is a bit harder.

Anyways, bottom line is that the gut is a pretty intricate thing and

sometimes hard to diagnose. I think the doctors are on to something

when they suggest the Mylanta trick for now as a means of helping

diagnose the problem.

-Rogena (Mom to 4 boys, including Cole -IgA & IgG Subclass Def,

GERD, possible Celiac)

>

> I am a lurker here. My 12 yr old daughter has Selective Antibody

Deficiency and was on IVIG for 6 years. She has been off for 1 year

this month and on 500mg 2xdy of Amoxcillian and has been fine so far.

>

> The problem now is my son, who is 6, and until now healthy as a

horse. He has always been prone to throw up. When he was a toddler

he would throw up during a tantrum, occasionally over things he said

smelled bad etc... Has complained from time to time of tummy ache.

I just thought it was him having a sensitive stomache, pedetrician

chalked it up to easy gag reflex.

>

> Anyway, for the last 6 weeks he has woke up complaining of a bad

stomache ache, sometimes will wake up in the night with it hurtint

so bad he is crying.He will occasionally get up in the moring say

his stomache hurts and then throw up. He will then go several days

and be fine and will eat fine. It's not school related, he is doing

well, has lots of friends and cries and gets mad if he can't go.

Took him to gastroenterolgoist (sp) here in Atlanta. Childrens

Digestive Healthcare of Atlanta for those of you in Ga. Anyway,

they are looking at parasites, we have lots of animals and live on a

farm. Cows, horses, three dogs, cats, and some strays that wander.

> Also, did immune system work up looking for immune system

problem or autoimmune problem and mentioned Celiac. I can not

pinpoint a food allergy problem though. This is the blood work they

did

>

> IGa , IGg, IGe, ANA, liver enzyme, sed rate, transgluten IGa

>

> Any thoughts ladies????

>

>

> ---------------------------------

> Blab-away for as little as 1¢/min. Make PC-to-Phone Calls using

Messenger with Voice.

>

>

[Guest guest]

" What is eosinophilic disease?? I have never heard of it. "

Jerri -

I will start by pasting that symptoms of EE (esophagitis) may include

" choking, chest pain, nausea, reflux not relieved by standard anti-reflux

therapy, strictures, polyps in the esophagus, and/or swallowing problems " .

http://www.cincinnatichildrens.org/

Keep in mind that are so many reasons for GI problems but, from what you

described in your last post (was it vomiting/pain/reflux?), I thought you might

be interested in ruling out eosinophilic diseases. Maybe you are considering

another GI consult to rule out/in other things as well?

My total novice understanding is that eos are a certain type of cell related

to a certain type of inflammation (blood levels do not reliably predict eos

disease).

Other GI related problems contribute to crohns, " IBS " , colitis, celiacs, etc.

What they all have in common is that there is often some insult such as a food

(protein intolerance), uncontrolled infection/toxin (parasites, c.dif, lyme

disease from ticks, etc.), antimicrobials (microflora disruption), immune

defect, genetics, among others that add to the whole cascade of GI problems --

and autoimmune disease.

_____________________

I am pasting chunks of the article from http://c4isr.com/NEED/

(The National Eosinophilic Eteritis Disease Foundation)

Go to: http://www.cincinnatichildrens.org/

Put: " eosinophilic " in the search engine. Click on: " Eosinophil-related

information for patients " or anything you want to learn about.

Symptoms of EE (esophagitis) may include choking, chest pain, nausea, reflux

not relieved by standard anti-reflux therapy, strictures, polyps in the

esophagus, and/or swallowing problems.

Symptoms of EC (colitis) may be similar to Ulcerative Colitis, and may include

diarrhea, cramping, bloody stools, constipation, obstruction/strictures, and/or

polypi.

Asthma and/or food sensitivities/allergies will oftentimes accompany the

disease.

Eosinophilic Gastroenteritis, or EG, is a condition in which one or more

layers of the stomach and/or small intestine are infiltrated with a type of

white blood cell called eosinophils, often with no known/identified allergic

cause. Some cases are due to parasitic/bacterial infection, which can be

successfully eradicated with a course of antibiotics.

Some people with a related condition called Eosinophilic Esophagitis (EE,

eosinophilic infiltration confined to the esophagus) or another related

condition called Eosinophilic Colitis (EC, eosinophilic infiltration confined to

the large bowel) also have EG, but not all. Because the infiltration with

eosinophils in EE/EG/EC is often very patchy, there is sometimes a difficulty in

being correctly diagnosed (especially in infants & children) even when multiple

biopsies are obtained (via an endoscopic procedure).

Symptoms of EG may include early satiety (feeling full before finishing a

meal), swelling, reflux, diarrhea, abdominal cramping or pain, nausea and

vomiting, blockages. Some patients also have been diagnosed with a

protein-losing enteropathy (loss of protein from the body that often results in

low blood levels of albumen and total protein) due to increased mucosal

permeability which results in hypoalbuminemia and hypogammaglobulinemia.

Also, it is not uncommon for people with EG to have a thickening of the lower

end of the stomach and/or duodenum, pseudopolyps, and/or blockages (or partial

blockages) as a result of the chronic inflammation and tissue damage.

[side note: I think that many PIDers have chronic inflammation in the gut

that may be contributing to constipation. Most of us treat the problem and

don't have the answers, yet. And, inflammation can occur without EG]

It is believed that whole food proteins are the most common precipitators of

an EG " attack. " Most with this condition are forced to eat a restricted diet

and/or drink elemental formulas containing no whole food proteins, such as

Neocate, Elecare, etc. (see formula list). Some people with EE/EG/EC are even

fed elemental formulas via gastrostomy tube, or are limited to TPN (blood-vessel

feeding) due to the severity and complications of the disease. The condition

itself is not fatal, but complications can be quite serious. EG is known to

occur sometimes during the second stage in a 3-stage eosinophilic disease called

Churg-Strauss Syndrome. Other eosinophilic conditions include Idiopathic

Hypereosinophilia, Eosinophilic Myalgia (from a contaminant in L-Tryptophan

supplements), and Eosinophilic Pneumonia.

Treatment is addressed...

(mom to CVIDer)