Kids with CD, plus an idea about diet for

[Guest guest]

First of all, I would recommend Danna Korn's Kids with Celiac Disease . I have this available in the support group library and would be happy to drop it off the next time I am in Felton (probably Tuesday, 11/26), , so call me if you want it. I don't agree with everything she says, but it is still a good book.

For birthday parties, depending on how well I know the family, I will do one of the following:

1. If I don't know the family well, I call in advance to explain the special diet needs and ask what kinds of food will be served, and, then prepare GF cupcakes or a gluten-free cake for my child to eat (be aware that sometimes the other kids will want to have some of whatever your kid has because it looks special, so be sure your child gets served first). Be very careful of ice cream because the scoop can pick up crumbs from the cake and contaminate the ice cream (again, be sure your child gets served first). You will also need to make sure the ice cream is GF. If other foods or candies will be served, check ahead of time and provide substitutes.

2. If it is someone I know a fairly well, sometimes they will offer to make a GF cake in addition to the regular cake and I will provide them with a mix or ingredients.

3. Some of our very good friends have (after tasting some of our delicious GF cakes) made GF cakes for their parties, then I don't have to worry about anything!

As for Thanksgiving, everything can be made gluten-free if you are at home. Recipes abound on the internet to make just about anything gluten-free. Let me know if you need something specific and I can check my files and cookbooks as well. If you are eating elsewhere, it is more difficult. Bringing GF substitutes for stuffing or other breads is a possibility. It is always best to coordinate in advance with whoever is preparing the meal to determine what can easily be modified to be GF and what special items you need to bring.

Lunches are difficult mainly because GF bread doesn't have a good texture at room temperature. I have been working on a high protein/low carbohydrate bread that, by coincidence, has a very good texture at room temperature (without any heating) and doesn't dry out even after freezing. I am still tweaking the recipe, but I will share it with you if you want. I use a breadmaker, but I expect you could easily make it by hand. Many lunch meats are GF(Diestel turkey is one of the healthier choices I can think of immediately), but you have to check each one. Tell me what your daughter likes and I will check to see if it is GF. As discussed, jelly isn't usually a problem (my list says Safeway Select and Smucker's jams and jellies are GF, and for peanut butter these are GF: Adam's, Arrowhead (creamy and crunchy, also almond and cashew butters), and Smucker's (I know other brands are as well, but these are what is on my list). There are also many GF substitutes for everything from pretzels to Oreos. Again, let me know what she likes and I can suggest a substitute.

As for testing your child, that is a decision you need to make based on your feelings about the strength of the diagnosis, the results of the blood tests, your observations of your child's symptoms, and your thoughts about how your daughter will tolerate the surgery. Generally, it is recommended to get a biopsy to confirm the blood tests, which are not 100% reliable, but you also should consider your specific situation.

Other than the diagnosis being incorrect, the worst thing's that can happen if you don't test are running up against hard-nosed officials or family members that refuse to accommodate your daughter's special needs without an "official diagnosis." The other problem that may come up is that your daughter may resist the diet if she finds as a teenager that she can eat gluten without obvious symptoms. It often happens that teenagers will apparently "recover" from CD only to "relapse" later in life. They are not really recovering, but just failing to show symptoms: the CD is still there damaging their guts. So your daughter may need to be convinced absolutely that she has CD later in life (or perhaps even now, if you think she is old enough to understand).

One word of caution: once she starts the gluten-free diet and healing begins, it will be very hard to get a diagnosis, so if you do decide to do a biopsy, be sure to keep her eating gluten until then (unless she is suffering from the gluten). This may be confusing to her if you have already started her on the GF diet, but doing the biopsy will not tell you anything if she is not eating gluten. I do not recommend that you have her gf until just before the surgery and then giving her gluten. I have heard that there is a way to test for CD when a person is GF, but apparently very few facilities can do it. I don't have much information about this at this point, unfortunately.

If you go to Stanford, I have found Dr. Dorsey Bass (pediatric gastroenterology) to be a personable and kind doctor who is knowledgeable about CD.

, I also want to talk to you about your continued pain. I happened to spot a book on irritable bowel syndrome at the library and I picked it up just out of curiosity (I am very suspicious of IBS as a diagnosis) just to see what the diet was like (sure enough, just as I suspected the diet was very low gluten). But as I read about the extreme pain the IBS people suffer, I thought of you and began to wonder if the IBS diet could be any help to you. After all, the IBS diet is meant to be easy to digest food for people whose bowels are extremely sensitive, and after all you have been through yours must be extremely irritated right now. I suspect that your diet is already pretty limited, but you might try some of the suggestions and see if anything works. The main idea is to avoid insoluble fiber (roughage), oils, and fats and eat mainly soluble fiber and low fat foods instead. They suggest avoiding raw veggies (greens, lettuce, sprouts, and seeds) and fruits with skins such as cherries, corn, and grapes. There's more to it, so if you think this could help you and want more details, let me know. This may not solve your problem, but it may possibly give you some relief while your system recovers.

All the best to you,

Pam Newbury

831-423-6904

-----Original Message-----From: pelmo [mailto:pelmo@...]Sent: Friday, November 22, 2002 10:30 PM Subject: RE: [ ] jelly is ok?

Thanks Amy

How do you guys deal with your kids at birthday parties and thanksgiving and so?

My daughter is very upset about being celiac right now

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-----Original Message-----From: Amy R First [mailto:afirst@...] Sent: Friday, November 22, 2002 10:12 PM Subject: RE: [ ] jelly is ok?

Hi,

Sorrel Ridge 100% Fruit Spreadable Fuit is gluten free. It does not contain citric acid.

Have a great day,

Amy

-----Original Message-----From: pelmo [mailto:pelmo@...]Sent: Friday, November 22, 2002 7:49 PMCeliacbayareagroups (DOT) ComSubject: [ ] jelly is ok?

HI there

I ma trying to figure out ideas for school lunches and I wonder if peanut butter and jelly sandwich is ok? And what jelly is gluten free, any ideas?

Thanks

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[Guest guest]

Dear Pam and all

Thanks for all the support.

I had the ERCP the same day that they

called me saying that Melody was Celiac. We are still waiting for the results

of the other 2 kids. I was with melody back at the SCMC urgent care today

because she is in a lot of pain in her stomach.

The Doctor said that I have to wait till

tomorrow until he talks to the pediatrician.

I got an appointment with Doctor Castillo

for January. Because the blood test came positive I put her on a GF diet, she

is upset about it, but I tell her that we are celiac sisters and that we can

eat cool things that other people don’t!

But basically the whole family at the

house eat GF foods.

I bought the Kiniikinink breads, so I was

going to try to make her a sandwich with that bread for school lunch.

What mix do you use?

I also bought that book that you mentioned

via Amazon, so I am waiting to get it.

What good tasting ice cream do you

suggest? The one I got her, she did not like it. I think it is rice dream or something

like that.

My Ercp showed that I had gravel in the

liver, and they cut a muscle that goes to the liver that it was making it work

too hard, and they opened up the sphincter.

When the doctor was going to do the

biopsies of liver, pancreas and stomach I woke up shaking, so they had to stop

the procedure.

I stayed at the hospital for a day and when

the doctor came to see me, he asked me how I was doing, and I said… I

still have the same pain!

So he is suggesting to do another

colonoscopy. I had one done in April by Doctor Chen, but, doctor Bernstein would

like to do one and check what is wrong. I think that when I had the gallbladder

operation, doctor ananasefah said that I may have IBS , but he did not say

anything else.

I got staph infection after the procedure

at the hospital, so I am in bed trying to rest as much as I can.

I hope that all this gets better.

Many celiac people don’t have so

many problems as I got.

Today I heard that celiac people need to

be cautious around antibiotics due to the immune system and white cells?

Did you guys here anything like that?

Pam, please send me thanksgiving recipes,

I will cook here.

If you have a recipe for pumpkin pie would

be great too!

BTW, Is someone here on the list being

seen by Doctor Bernstein? Or Doctor Castillo?

Much love

www.gepeling.org

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-----Original Message-----

From: Newbury

[mailto:pknewbury@...]

Sent: Sunday, November 24, 2002

10:17 PM

Subject: [ ] Kids with

CD, plus an idea about diet for

First of all, I would

recommend Danna Korn's Kids with Celiac Disease . I have this

available in the support group library and would be happy to drop it off the

next time I am in Felton (probably Tuesday, 11/26), , so call me if you

want it. I don't agree with everything she says, but it is still a good

book.

For birthday parties,

depending on how well I know the family, I will do one of the following:

1. If I don't

know the family well, I call in advance to explain the

special diet needs and ask what kinds of food will be served, and, then prepare

GF cupcakes or a gluten-free cake for my child to eat (be aware that sometimes

the other kids will want to have some of whatever your kid has because it looks

special, so be sure your child gets served first). Be very careful

of ice cream because the scoop can pick up crumbs from the cake and contaminate

the ice cream (again, be sure your child gets served first). You will

also need to make sure the ice cream is GF. If other foods or candies

will be served, check ahead of time and provide substitutes.

2. If it is someone I

know a fairly well, sometimes they will offer to make a GF cake in addition to

the regular cake and I will provide them with a mix or ingredients.

3. Some of our very

good friends have (after tasting some of our delicious GF cakes) made GF

cakes for their parties, then I don't have to worry about anything!

As for Thanksgiving,

everything can be made gluten-free if you are at home. Recipes abound on

the internet to make just about anything gluten-free. Let me know if you

need something specific and I can check my files and cookbooks as

well. If you are eating elsewhere, it is more difficult. Bringing

GF substitutes for stuffing or other breads is a possibility. It is

always best to coordinate in advance with whoever is preparing the meal to

determine what can easily be modified to be GF and what special items you

need to bring.

Lunches are difficult

mainly because GF bread doesn't have a good texture at room temperature.

I have been working on a high protein/low carbohydrate bread that, by

coincidence, has a very good texture at room temperature (without any

heating) and doesn't dry out even after freezing. I am still

tweaking the recipe, but I will share it with you if you want. I use a

breadmaker, but I expect you could easily make it by hand. Many lunch

meats are GF(Diestel turkey is one of the healthier choices I can think of

immediately), but you have to check each one. Tell me what your daughter

likes and I will check to see if it is GF. As discussed, jelly isn't

usually a problem (my list says Safeway Select and Smucker's jams and

jellies are GF, and for peanut butter these are GF: Adam's, Arrowhead

(creamy and crunchy, also almond and cashew butters), and Smucker's

(I know other brands are as well, but these are what is on my

list). There are also many GF substitutes for everything from

pretzels to Oreos. Again, let me know what she likes and I can suggest a

substitute.

As for testing your

child, that is a decision you need to make based on your feelings about the

strength of the diagnosis, the results of the blood tests, your

observations of your child's symptoms, and your thoughts about how your daughter

will tolerate the surgery. Generally, it is recommended to get a biopsy

to confirm the blood tests, which are not 100% reliable, but you also should

consider your specific situation.

Other than the diagnosis

being incorrect, the worst thing's that can happen if you don't test are

running up against hard-nosed officials or family members that refuse to

accommodate your daughter's special needs without an " official

diagnosis. " The other problem that may come up is that your

daughter may resist the diet if she finds as a teenager that she can eat gluten

without obvious symptoms. It often happens that teenagers

will apparently " recover " from CD only to " relapse " later

in life. They are not really recovering, but just failing to show

symptoms: the CD is still there damaging their guts. So your daughter may

need to be convinced absolutely that she has CD later in life (or perhaps even

now, if you think she is old enough to understand).

One word of caution: once

she starts the gluten-free diet and healing begins, it will be very hard to get

a diagnosis, so if you do decide to do a biopsy, be sure to keep her eating

gluten until then (unless she is suffering from the gluten). This may be

confusing to her if you have already started her on the GF diet, but doing

the biopsy will not tell you anything if she is not eating gluten. I

do not recommend that you have her gf until just before the surgery and

then giving her gluten. I have heard that there is a way

to test for CD when a person is GF, but apparently

very few facilities can do it. I don't have much information

about this at this point, unfortunately.

If you go to Stanford, I

have found Dr. Dorsey Bass (pediatric gastroenterology) to be a personable

and kind doctor who is knowledgeable about CD.

, I also want to

talk to you about your continued pain. I happened to spot a book on

irritable bowel syndrome at the library and I picked it up just out of

curiosity (I am very suspicious of IBS as a diagnosis) just to see what the

diet was like (sure enough, just as I suspected the diet was very low

gluten). But as I read about the extreme pain the IBS

people suffer, I thought of you and began to wonder if the IBS diet could

be any help to you. After all, the IBS diet is meant to be easy to digest

food for people whose bowels are extremely sensitive, and after all you have

been through yours must be extremely irritated right now. I

suspect that your diet is already pretty limited, but you might try some

of the suggestions and see if anything works. The main idea is to avoid

insoluble fiber (roughage), oils, and fats and eat mainly soluble

fiber and low fat foods instead. They suggest avoiding raw veggies

(greens, lettuce, sprouts, and seeds) and fruits with skins such as cherries,

corn, and grapes. There's more to it, so if you think this could

help you and want more details, let me know. This may not solve your

problem, but it may possibly give you some relief while your system recovers.

All the best to you,

Pam Newbury

831-423-6904

-----Original

Message-----

From: pelmo

[mailto:pelmo@...]

Sent: Friday, November 22, 2002

10:30 PM

Subject: RE: [ ] jelly

is ok?

Thanks Amy

How do you

guys deal with your kids at birthday parties and thanksgiving and so?

My daughter

is very upset about being celiac right now

www.gepeling.org

Here to

benefit others!

VIRUS

FREE!

Outgoing

mail scanned by Norton Antivirus!

-----Original Message-----

From: Amy R First

[mailto:afirst@...]

Sent: Friday, November 22, 2002

10:12 PM

Subject: RE: [ ] jelly

is ok?

Hi,

Sorrel Ridge 100% Fruit

Spreadable Fuit is gluten free. It does not contain citric acid.

Have a great day,

Amy

-----Original

Message-----

From: pelmo

[mailto:pelmo@...]

Sent: Friday, November 22, 2002

7:49 PM

Celiacbayareagroups (DOT) Com

Subject: [ ] jelly is

ok?

HI there

I ma trying

to figure out ideas for school lunches and I wonder if peanut butter and jelly

sandwich is ok? And what jelly is gluten free, any ideas?

Thanks

www.gepeling.org

Here to

benefit others!

VIRUS

FREE!

Outgoing

mail scanned by Norton Antivirus!

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