Re: son soon to be biopsied - help

[Guest guest]

> All

> My son Mathew had positive blood tests for CD a few weeks ago and

> has a biopsy scheduled for the end of September. The problem is I

> am keeping him on a gluten - full diet and he has been up in the

> middle of the night with horrible stomach aches 3 out of the past 6

> nights (coincidence?). I fear it is the gluten he has been eating

> which is contributing to the stomach aches (he has no symptoms of a

> virus or anything else) although I have been told to keep him eating

> gluten until his biopsy. Is there any kind of antacid or something

> I can give him that might settle his stomach until the time of the

> biopsy (which I'm sure will be indicative of CD). These nights are

> sure getting long. Any help would be greatly appreciated.

>

> Thanks,

> Kathy

There is a product that I can suggest might help, but of course you

should check with your child's doctor first. We've used Babies

Tum-Ease, made by Eclectic Kids, with our son since he was 7 weeks

old, and now that he is nearly 5 we still use it when he has severe

gas or moderate stomach pain. If your doctor isn't familiar with this

particular product, you can tell him/her it is a version of

old-fashioned gripe water, a colic rememdy. I don't know of any reason

it could possbily interfere with the upcoming biopsy.

The ingredients are all GF, I've confirmed it with the company. It

contains:

* 0.003 ml. Dill (Anethum graveolens) oil;

* 0.002 ml. Fennel (Foeniculum vulgare) oil;

* 0.001 ml. Ginger (Zingiber spp.) oil;

* 50 mg. Sodium Bicarbonate in a base of 25% Kosher vegetable

glycerine and purified water.

Dill, fennel and ginger are all old fashioned stomach settling herbs,

and the glycerine and Sodium Bicarbonate are apparently good at

breaking up the gas bubbles.

Maureen

[Guest guest]

Our son just went through all that and he would be up every night

crying in pain from stomach aches and most the time he was vomiting

and having diarhea also... This seemed worst at night but also

happened frequently durring the day. Being on gluten before the

biopsy is essential! But we noticed a HUGE difference immediatly when

we took him off. My MIL and mom talk to him on the phone now and

comment on how he seems to be a totally different kid. He really is

now that we are GF. But it seems like even the slightest bit of

Gluten causes a really bad reaction now! It is hard and sometimes we

mess up on accident but overall he is doing so much better.

We had Zantac prescribed before we knew he had CD and we have found it

does help so he wasn't as sick... Still got tummy aches but not as

bad and stuff... Talk to your doctor about that, or we also found

Tums and Rolaids helped a little. It really depends on the age of

your child also though...

> All

> My son Mathew had positive blood tests for CD a few weeks ago and

> has a biopsy scheduled for the end of September. The problem is I

> am keeping him on a gluten - full diet and he has been up in the

> middle of the night with horrible stomach aches 3 out of the past 6

> nights (coincidence?). I fear it is the gluten he has been eating

> which is contributing to the stomach aches (he has no symptoms of a

> virus or anything else) although I have been told to keep him eating

> gluten until his biopsy. Is there any kind of antacid or something

> I can give him that might settle his stomach until the time of the

> biopsy (which I'm sure will be indicative of CD). These nights are

> sure getting long. Any help would be greatly appreciated.

>

> Thanks,

> Kathy

[Guest guest]

Kathy,

I can only

offer a couple of coping things that might make it easier for you to get

through this.

My first

question is have you asked the doctor if he can move the biopsy up? If he knows how sick he is maybe he

would be willing. Or is there

another doctor that could do it sooner?

The other thing is with the

long nights I found I had to get my sleep when my daughter slept. I was pregnant during the time we were

finally getting her diagnosed and sick myself so we would usually find some

time each day to sleep. Do you

have anyone who can help with the late nights? I have found that most doctors are willing to change a

scheduled appointment like that if they know what kind of distress it causes in

a family like this and when one child isn’t sleeping and is hurting the whole

family is affected. I hope you can

find some peace during this time and that you can get your answers. Maybe if you can ask for medication for

the stomach aches the doctor will realize that he should move up the

biopsy.

[Guest guest]

My advice would be to not let it get too bad... My son was so sick he

was hospitalized for 12 days... they couldn't figure out what was

wrong. (This was BEFORE we had any clue about CD) They couldn't figure

out why he was vomiting every 2 hours and why his intestines were

cramping and seizing.

I know with my son, the worst pain is not in the unsettled tummy...

it's the intestines that start spasming and contracting that caused him

the pain. He gets doubled over in pain and there is NOTHING that can

make it better. The only relief he has is when the offending food

passes. When he was hospitalized the ONLY time he had no pain was when

he was voided (via enema) or when he was on a GF diet. When we were

sent home to resume a reg. diet (because of inconclusive biopsy

results) he would end up vomiting and cramping so bad from just eating

saltine crackers... At night it was the worst, he would fall asleep and

wake up every 1/2 hour to endure another spasm. We were given an

anti-cramping medicine... but all it did was stop the intestines from

contracting and thus keep the 'poison' in him longer. His only relief

came when we went completely GF.

This was my experience when we had our 'crisis', which does NOT mean it

will be yours. I share it with you so you can be very careful about

letting it go on for the sake of the biopsy.

You can read about my hospital and doctor experiences at:

http://brain.hastypastry.net/forums/showpost.php?p=299691 & postcount=19

Good luck and please be careful!

I am NOT a doctor, nor do I play one on t.v.! I am just a mother of

a gluten intolerant child who has read and chatted with others in the

same boat. Please feel free to challenge me or point me towards any

research and information, I'm always searching!

Priscilla Graham

" Cleaning your house while your kids are still growing is like

shoveling the walk before it stops snowing. " --Phyllis Diller

SAHM to 3 beautiful boys and one adorable girl

- 6

- 4 (Gluten Free since 11/03)

- 2

Abigail - 7 months

My hands are full, but my heart is not!

[Guest guest]

Thank you and thanks to everyone else who responsed. My son is 6

and his sister has CD so Matt understands and he would not let me

feed him gluten today (I tried to slip some in buy it was hard and I

felt guilty). He is so afraid of having the stomach pains again.

Everytime I tried to feed him today he would ask " Is that Gluten-

free? " . I am going to call the doctors office tomorrow and at least

ask for a prescription. I think they got me in as early as possible

because I would have nothing other than a first morning (since they

can't eat before) appointment. As far as the nights go, my

husband helps and Matt usually gets back to sleep at some point (I

survived waking up 6+ months each for 3 infants so I guess I can

make it 2 more weeks with this). Thanks again for the support.

Kathy

> Kathy,

>

> I can only offer a couple of coping things that might make it

easier for you

> to get through this.

>

> My first question is have you asked the doctor if he can move the

biopsy up?

> If he knows how sick he is maybe he would be willing. Or is there

another

> doctor that could do it sooner?

> The other thing is with the long nights I found I had to get my

sleep when

> my daughter slept. I was pregnant during the time we were finally

getting

> her diagnosed and sick myself so we would usually find some time

each day to

> sleep. Do you have anyone who can help with the late nights? I

have found

> that most doctors are willing to change a scheduled appointment

like that if

> they know what kind of distress it causes in a family like this

and when one

> child isn't sleeping and is hurting the whole family is affected.

I hope

> you can find some peace during this time and that you can get your

answers.

> Maybe if you can ask for medication for the stomach aches the

doctor will

> realize that he should move up the biopsy.