Re: Newbie Here! Hello!

[Guest guest]

Hello,

I recently found out I am celiac, and was also advised to avoid dairy for at

least 6 months, so I joined this list for shopping/cooking ideas, only to

find out that some of the behaviors of children on this list sound like my

son! He's definitely got sensory dysfunction and he's skinny and was on

tons of antibiotics the first 2 years of his life. Now that I know about

the celiac, I can see a family history of it, and my son is being tested.

We're still waiting for all kinds of tests to come back. We're seeing a DAN

doctor because I wanted him evaluated for leaky gut and all that too. My

son's 10-years-old and until we have the definite diagnosis I am just trying

to get him used to possible substitutes and gradually get him used to the

idea that the doctor's going to say he has to give up gluten too. It's NOT

going well, he was almost crying at the health food store yesterday, and

he's very resistant and angry about the whole thing. So far, the only

gluten-free food he will accept gladly all the time are the Gluten Free

Pantry brownies. He's very picky about all foods (sensory!) and emotionally

and ritually attached to certain foods that are definitely going to be

impossible for him to continue eating. The only thing we have going for us

is that he wants to be a chef and is extremely interested in the cooking

aspect, but he will help me cook something and then refuse to eat it and ask

for 's or a Tombstone pizza.

Well have to get going for another prolonged grocery shopping

expedition.....

Oh yeah, LOVE the idea of starting an I Can't Eat " THAT " Club!

Newbie Here! Hello!

Hello all,

First let me start by saying " Thank Goodness " for Gluten Free Companies! I

couldn't do this with out them. I " HATE " (AND I DO NOT LIKE THAT WORD) TO

COOK! I always have, so it is very strange to me that I should get stuck in

the kitchen night and day! But that's my life, so I am there, along with all

of you. Ms. Robens and Specialty Selects send us big boxes and I smile every

time. We may have to move to a smaller house one day, but I'd do it in a

minute to stay out of the kitchen.LOL!!

I am still learning all the different companies and recipes out there!

The last year and a half has been tough. I don't know if I am the only one

on this list that has a child with CELIAC'S Disease or not??? The doctors

wouldn't listen to me and thought that I was nuts complaining about having a

skinny child. " Some kids are skinny " , only to find out when they finally did

listen to me that he was slowly dying from Celiac's Disease. When they

finally did the biopsy he had NO VILLI left in his small intestines, they

were completely flat, and he had been living in pain, but knew no different

and never said one word. He couldn't ride is bike from the pain, and

everyone but me thought he was uncoordinated. At 7 years old?? Needless to

say we changed doctors and I won't let a doctor not listen to me ever again!

He has osteoporosis, so his bones are very brittle. He can't ski this year,

we live in New Hampshire and Daddy ski patrols so that is hard on him. He's

a great kid and takes it all much better than I ever thought he would. Pizza

party at Scouts Friday night and he never said one word.

He started a club in our town called The I Can't Eat " THAT " Club! For all

kids with any type of food issue. They have 6 members and meet once a month.

They had a candy free Halloween Party with little prizes, made trick or

treating more fun, because they got to trade all the BAD candy for good

candy when they got home. They also had a piñata stuffed with toys instead

of candy. They all have the attitude that they will not miss out on fun

things at school or home because of this. My son goes to birthday parties

and brings his own cake and a scope of ice cream in a baggie and when its

time, I scope it onto the place, no one is the wiser most times. He doesn't

hide it, because Celiac's is so serious, but he doesn't make it an issue

either. He refuses to let it hold him back! I hope he is well soon, as he is

still a very sick little boy!

Some of you might be wondering why I didn't join a Celiac's List, I have,

but I am very interested in learning about GF/CF diet in regards to Autism

as well. My younger son has DSI(Dysfunction of Sensory Integration)or SID.

We know he has an addiction to sugar, so we are interested to see that

connection to Gluten as well. I am also interested because what he eats does

seem to effect his DSI symptoms. I do know enough about Autism to know that

these children also have DSI issues as well. My son has changed so very much

since DSI therapy, both with a therapist and and OT. He is thriving in first

grade which is something I truly never thought possible a year ago. Before

therapy he was out of control. The book The OUT of SYNC CHILD< saved our

lives.

I have started a support group in Londonderry, NH for DSI this past June. I

have recently joined forces with Dr. Lucy Jane ( who has worked in DSI

for 30 years) , I have helped a mom near her in Denver start another group

out there and Dr, will be announcing DSI PARENT CONNECTIONS at this

weeks LA Conference with many top people in the field. We have 30(We hope)

groups set to start this spring around the country. More to follow as word

spreads that we are looking for parents to host one meeting once a month.

Soon parents will be able to log onto

SInetwork.org and search by state to find a DSI PARENT CONNECTION near them.

I am now a true believer in the POWER OF ONE!!!!

I am sure someone has posted the POWER OF ONE day coming up in March in

Washington, DC. It is sure to be exciting and get National attention. I am

thrilled for that.

Sorry for the long intro. Now for my questions!

1. Are there any other Celiac Parents on this group?

2. How many of you know about the connection to DSI with Autism and also

FOOD?

3.Fast FOOD is our BIG ISSUE, as I haven't had a minute to search outside of

my home, except Mcs. They have a list on their website, which is

wonderful, but,THey have for example Pickles on the GF list, well they have

distilled vinegar in them.( THIS is OK, for some on GF diet, but not

CELIACS) So I am so afraid to take him anywhere. Anyone have any help here??

Thanks so much for all your help in advance!

God Bless,

Laurie Renke

[Guest guest]

Hi Laurie,

Welcome to the group. Sorry I can't help with the celiac parents or fast

food question, but I wanted to say that my older son's primary issue has

been sensory integration dysfunction. And he has been profoundly changed

for the better by the diet--both gluten and casein free. (and soy, corn,

artificial colors and flavors, and yeast free as well)

I really do believe that the SID kids, even the ones who don't quite make it

onto the autistic spectrum, can really benefit from this diet. Honestly, I

believe that SID is just another part of this whole umbrella of disorders,

and that SID is just another expression of these kids being toxic, and

unable to detoxify themselves as well as other kids who make it through

their childhood unaffected.

I love " The Out of Sync Child " too. I just wish that there had been more

than one sentence devoted to possible dietary connections. In terms of your

younger son with SID who craves sugar, I suspect that there might be a yeast

overgrowth as well, which surely could lead to sensory issues. In addition

to trying gluten and dairy free, I would seriously consider limiting sugar,

and cutting out yeast, moldy foods and anything fermented. I would also get

a good strong probiotic (acidophilus plus other strains like bifidus...)

Then you could look into whether you want to go after the yeast more

aggressively.

Best,

[Guest guest]

In a message dated 2/11/2001 10:31:19 AM Eastern Standard Time, jamm@...

writes:

> Hello,

>

> I recently found out I am celiac, and was also advised to avoid dairy for at

> least 6 months, so I joined this list for shopping/cooking ideas, only to

> find out that some of the behaviors of children on this list sound like my

> son! He's definitely got sensory dysfunction and he's skinny and was on

> tons of antibiotics the first 2 years of his life. Now that I know about

> the celiac, I can see a family history of it, and my son is being tested.

> We're still waiting for all kinds of tests to come back. We're seeing a DAN

> doctor because I wanted him evaluated for leaky gut and all that too. My

> son's 10-years-old and until we have the definite diagnosis I am just trying

> to get him used to possible substitutes and gradually get him used to the

> idea that the doctor's going to say he has to give up gluten too. It's NOT

> going well, he was almost crying at the health food store yesterday, and

> he's very resistant and angry about the whole thing. So far, the only

> gluten-free food he will accept gladly all the time are the Gluten Free

> Pantry brownies. He's very picky about all foods (sensory!) and emotionally

> and ritually attached to certain foods that are definitely going to be

> impossible for him to continue eating. The only thing we have going for us

> is that he wants to be a chef and is extremely interested in the cooking

> aspect, but he will help me cook something and then refuse to eat it and ask

> for 's or a Tombstone pizza.

>

> Well have to get going for another prolonged grocery shopping

> expedition.....

>

> Oh yeah, LOVE the idea of starting an I Can't Eat " THAT " Club!

>

>

>

>

>

[Guest guest]

Oops posted twice. meant to send a message of good luck to you julie. I

don't know how I would manage with a 10 year old starting out. I have one,

but my younger son is on the diet. Even trying to get my older son to eat a

gf/cf cookie is like trying to pull teeth. my younger son who is on the diet

accepts it really very well. It is so much harder to take away foods than

it is to just accept them from an early age. Nothing you don't know. I

wonder how come nobody has diagosed your celiac condition before. Didn't one

of the relatives have it. ? I wonder how many people have this and just

don't know it?

kelly

[Guest guest]

Sorry about your son. I don't want to pry in this area, but I keep

thinking what a tragedy. Doctors should have checked for celiac.

Yes, It does seem a lot of us have some auto immune dysfunction in

association of autism. I really wasn't sure by

reading if your 10 year old was autistic, celiac or both. I agree I would

like to see things changed in our labeling laws. It really becomes apparent

after starting this diet. It is also a shame that there is so few

alternatives, in regard to the massive wheat on our shelves. Wheat has

changed too over the years to be more glutinous than ever. I wonder if

celiac and other syndromes aren't caused by the change in our wheat over the

past century. I would be glad to write to Dan Burton. Do you have and

address? I am sure that a lot of people would like change, but we don't

always know how to go about it. I was reading something from another list

dealing with our medical testing and how it is illegal for companies that do

diagnostic testing to send the parents copes, because it is illegal. A lot

of parents pay good money and do more than most doctors as far as diagnosing,

treating, etc., so a lot of us would like to see that changed. Vaccines,

medical records, school polices, so many things we would like to change.

Treatment of our children. We would like to see that changed too. Maybe

they could actually treat them. Like run diagnostic testing when they come

in and seem out of touch. Maybe they could check what first year residents

learn. Nutrition and vitamin/minerals. OOps I am going on. so I will let

you go. kelly >

>

> I'm wondering how common it is too. I've read that it could end up being as

> common as 1/250 to 1/150. I always wonder when I see someone suffering with

> a severe autoimmune disease, or even with chronic fatigue or fibromyalgia,

> if they are celiac and if it could all be avoided if they only knew. My

> grandma had intestinal cancer when she was 29, survived that and then had

> 's disease, osteoporosis, severe rheumatoid arthritis, and was told

> she had Crohn's disease, although in hindsight it was probably celiac. She

> lived to be 75 somehow but was in pure misery most of her life. I think my

> mother probably had it too, because she had Sjogrens, and the tell-tale dry

> lips. I probably would have been diagnosed sooner, but the first obvious

> symptoms started when my younger son was hospitalized for failure to thrive

> and ended up on a ventilator for 3 years until he died, so I thought

> everything wrong with me was from stress, exhaustion and grief, and when I

> finally started going to doctors they all thought the same and wanted to

> prescribe antidepressants, but I knew my bloodwork showed I was anemic and

> that my thyroid was right on the border of being clinically low and I kept

> getting worse so finally I had my chiropractor test my thyroid function and

> that's when the antibodies showed up. There is SO much autoimmune disease

> in my family and so many children with ADHD, bipolar, etc., it's driving me

> crazy because I can't convince them to be tested. I know that my sister and

> her son are in much worse shape than me or my son. *sigh*

>

> As far as my son, I don't know if I will end up having to scare him with the

> facts, that celiac can end up life-threatening, I keep hoping it could be a

> temporary gluten intolerance from leaky gut or something, but then I

> remember family history and really doubt it.

>

> Well, hopefully eventually the medical community and food manufacturers and

> restaurants will start catching on that there are LOTS of people out there

> avoiding gluten (and casein too of course) and we can get some labelling

> laws.

>

> *THOUGHT* Why don't we get lots of people to email Rep. Dan Burton about

> labelling laws and why they're so necessary to SO MANY families. If anyone

> should take it seriously, he should.

>

>

[Guest guest]

Sorry about your son. I don't want to pry in this area, but I keep

thinking what a tragedy. Doctors should have checked for celiac.

Yes, It does seem a lot of us have some auto immune dysfunction in

association of autism. I really wasn't sure by

reading if your 10 year old was autistic, celiac or both. I agree I would

like to see things changed in our labeling laws. It really becomes apparent

after starting this diet. It is also a shame that there is so few

alternatives, in regard to the massive wheat on our shelves. Wheat has

changed too over the years to be more glutinous than ever. I wonder if

celiac and other syndromes aren't caused by the change in our wheat over the

past century. I would be glad to write to Dan Burton. Do you have and

address? I am sure that a lot of people would like change, but we don't

always know how to go about it. I was reading something from another list

dealing with our medical testing and how it is illegal for companies that do

diagnostic testing to send the parents copes, because it is illegal. A lot

of parents pay good money and do more than most doctors as far as diagnosing,

treating, etc., so a lot of us would like to see that changed. Vaccines,

medical records, school polices, so many things we would like to change.

Treatment of our children. We would like to see that changed too. Maybe

they could actually treat them. Like run diagnostic testing when they come

in and seem out of touch. Maybe they could check what first year residents

learn. Nutrition and vitamin/minerals. OOps I am going on. so I will let

you go. kelly >

>

> I'm wondering how common it is too. I've read that it could end up being as

> common as 1/250 to 1/150. I always wonder when I see someone suffering with

> a severe autoimmune disease, or even with chronic fatigue or fibromyalgia,

> if they are celiac and if it could all be avoided if they only knew. My

> grandma had intestinal cancer when she was 29, survived that and then had

> 's disease, osteoporosis, severe rheumatoid arthritis, and was told

> she had Crohn's disease, although in hindsight it was probably celiac. She

> lived to be 75 somehow but was in pure misery most of her life. I think my

> mother probably had it too, because she had Sjogrens, and the tell-tale dry

> lips. I probably would have been diagnosed sooner, but the first obvious

> symptoms started when my younger son was hospitalized for failure to thrive

> and ended up on a ventilator for 3 years until he died, so I thought

> everything wrong with me was from stress, exhaustion and grief, and when I

> finally started going to doctors they all thought the same and wanted to

> prescribe antidepressants, but I knew my bloodwork showed I was anemic and

> that my thyroid was right on the border of being clinically low and I kept

> getting worse so finally I had my chiropractor test my thyroid function and

> that's when the antibodies showed up. There is SO much autoimmune disease

> in my family and so many children with ADHD, bipolar, etc., it's driving me

> crazy because I can't convince them to be tested. I know that my sister and

> her son are in much worse shape than me or my son. *sigh*

>

> As far as my son, I don't know if I will end up having to scare him with the

> facts, that celiac can end up life-threatening, I keep hoping it could be a

> temporary gluten intolerance from leaky gut or something, but then I

> remember family history and really doubt it.

>

> Well, hopefully eventually the medical community and food manufacturers and

> restaurants will start catching on that there are LOTS of people out there

> avoiding gluten (and casein too of course) and we can get some labelling

> laws.

>

> *THOUGHT* Why don't we get lots of people to email Rep. Dan Burton about

> labelling laws and why they're so necessary to SO MANY families. If anyone

> should take it seriously, he should.

>

>

[Guest guest]

,

I'm wondering how common it is too. I've read that it could end up being as

common as 1/250 to 1/150. I always wonder when I see someone suffering with

a severe autoimmune disease, or even with chronic fatigue or fibromyalgia,

if they are celiac and if it could all be avoided if they only knew. My

grandma had intestinal cancer when she was 29, survived that and then had

's disease, osteoporosis, severe rheumatoid arthritis, and was told

she had Crohn's disease, although in hindsight it was probably celiac. She

lived to be 75 somehow but was in pure misery most of her life. I think my

mother probably had it too, because she had Sjogrens, and the tell-tale dry

lips. I probably would have been diagnosed sooner, but the first obvious

symptoms started when my younger son was hospitalized for failure to thrive

and ended up on a ventilator for 3 years until he died, so I thought

everything wrong with me was from stress, exhaustion and grief, and when I

finally started going to doctors they all thought the same and wanted to

prescribe antidepressants, but I knew my bloodwork showed I was anemic and

that my thyroid was right on the border of being clinically low and I kept

getting worse so finally I had my chiropractor test my thyroid function and

that's when the antibodies showed up. There is SO much autoimmune disease

in my family and so many children with ADHD, bipolar, etc., it's driving me

crazy because I can't convince them to be tested. I know that my sister and

her son are in much worse shape than me or my son. *sigh*

As far as my son, I don't know if I will end up having to scare him with the

facts, that celiac can end up life-threatening, I keep hoping it could be a

temporary gluten intolerance from leaky gut or something, but then I

remember family history and really doubt it.

Well, hopefully eventually the medical community and food manufacturers and

restaurants will start catching on that there are LOTS of people out there

avoiding gluten (and casein too of course) and we can get some labelling

laws.

*THOUGHT* Why don't we get lots of people to email Rep. Dan Burton about

labelling laws and why they're so necessary to SO MANY families. If anyone

should take it seriously, he should.

Re: Newbie Here! Hello!

[Guest guest]

,

I have wondered the same myself. I have fibromyalgia and chronic fatigue

among other things like bile reflux and a hiatal hernia. I had a biopsy test

for celiac last month which my Dr. says came back neg. I am still trying the

diet myself. I stayed gluten free for 3 weeks then had a big mac attack, I

didn't really feel any worse afterwards. I still however am eating gluten

and dairy free- as I am definitely lactose intolerant! So I am not sure, but

figure it is healthier for me to eat what does.

I always wonder when I see someone suffering with

> a severe autoimmune disease, or even with chronic fatigue or fibromyalgia,

> if they are celiac and if it could all be avoided if they only knew.

>

>

[Guest guest]

,

I have wondered the same myself. I have fibromyalgia and chronic fatigue

among other things like bile reflux and a hiatal hernia. I had a biopsy test

for celiac last month which my Dr. says came back neg. I am still trying the

diet myself. I stayed gluten free for 3 weeks then had a big mac attack, I

didn't really feel any worse afterwards. I still however am eating gluten

and dairy free- as I am definitely lactose intolerant! So I am not sure, but

figure it is healthier for me to eat what does.

I always wonder when I see someone suffering with

> a severe autoimmune disease, or even with chronic fatigue or fibromyalgia,

> if they are celiac and if it could all be avoided if they only knew.

>

>

[Guest guest]

In a message dated 2/12/01 8:58:36 AM Eastern Standard Time,

renee1dat@... writes:

> I had an endoscopy and colonoscomy done at the same time and there were a

> lot of biopsies taken- they were very thorough because he thought at first I

> had esophageal cancer! I do not however feel like the Dr. took me seriously

> about the possibility of celiac, although he swears they did check through

> all these biopsies. Is there another test that can be run? I definitely have

> a lot of the tell-tale signs, I had my gall bladder removed in Aug., I have

> lost 32 lbs. in a 2 month period due to diarrhea, which by the way I did not

> need to loose, I am chronically tired, lactose intolerant, and so much more!

> As a child they were always testing me for anemia because I was so little

> and sickly looking. Any suggestions at all would be greatly appreciated. It

> is a hard diet to follow 100% for myself and maybe a diagnosis would put

> enough fire under my butt to make me stick to it. With we see the

> reaction to any gluten or casein and the price is too high to pay for a slip

> up so we are extremely careful to the point of paranoia with her food!

> Thanks in advance for your support and advice.

>

>

>

[Guest guest]

,

I'm no expert, but I have heard that the biopsy is not always accurate, that

it depends on how many tissue samples they take and from where, and who

examines the samples, and if someone has already been on a gluten-free diet

especially it may not be accurate. So even if they tell you it's negative,

you still never really know for sure.

Re: Newbie Here! Hello!

[Guest guest]

,

I've had dry lips all my life and so did my mother and if I'm remembering

clearly I think my gma did too. I noticed it mentioned somewhere on a

celiac list or website that dry lips can be associated, and it really caught

my attention because of always being told my whole life that I should put

something on my lips or drink more water and getting so aggravated, like I

never thought of that - duh. I suppose dry lips could mean any number of

things though too, but in this case I felt like I finally knew why I always

had them no matter what I did. They do seem to be somewhat better now,

especially since it's winter and they should be worse. If they're

completely better by summer I'll know it was the gluten. Not that that's

the most important thing in the world, but it would be a sign of things

getting better in general I suppose.

Re: Newbie Here! Hello!

[Guest guest]

,

I've had dry lips all my life and so did my mother and if I'm remembering

clearly I think my gma did too. I noticed it mentioned somewhere on a

celiac list or website that dry lips can be associated, and it really caught

my attention because of always being told my whole life that I should put

something on my lips or drink more water and getting so aggravated, like I

never thought of that - duh. I suppose dry lips could mean any number of

things though too, but in this case I felt like I finally knew why I always

had them no matter what I did. They do seem to be somewhat better now,

especially since it's winter and they should be worse. If they're

completely better by summer I'll know it was the gluten. Not that that's

the most important thing in the world, but it would be a sign of things

getting better in general I suppose.

Re: Newbie Here! Hello!

[Guest guest]

,

With my younger son (), I don't think he only had celiac disease or

gluten sensitivity or whatever, but in hindsight I think it was definitely

part of what he had, which was probably a mitochondrial myopathy. But, I do

think things could have been a lot better for him if he would have been

tested along those lines. The first thing they tested him for was cystic

fibrosis because his stools were so strange, but then they decided he had

spinal muscular atrophy, then myasthenia gravis, then they gave up guessing

but by that point all the doctors were firmly convinced it was neuromuscular

and I repeatedly asked to have him evaluated for sensitivities, because he

would get a lot better when fasting, but they always looked at me like I had

2 heads. I do think a lot of what was wrong with him was caused by

immunizations, on top of the underlying weakness of course, but I think they

did devastating damage to him and I wonder how many of his symptoms were

caused by " medical care " and how much was his underlying illness. I didn't

have the internet then, and even if I had I wouldn't have had the time to

read anything ever.

My 10 y.o. (Timmy) isn't autistic, but he does have some sensory dysfunction

and probably leaky gut/yeast. He always got ear infections after

immunizations, which isn't as bad as what could have happened I know, but he

did spend the first 2 years of his life on antibiotics. I refused his

boosters at 5 years because I didn't want him sick again, and I had no idea

at the time that it could have been worse than ear infections if I hadn't.

He had the sensory symptoms from the day he was born though, and he didn't

get his first immunization until he was 2 months old, so I'm wondering if

that goes along with a " mild " case of celiac? I kept trying to change my

diet 'cause I could tell it was associated with feedings, but I didn't know

enough at the time and the peds were worthless (I was a very bad mom and I

should calm down myself and not spoil him. I saw one of these peds at a

restaurant recently baby-talking her 6 year old daughter, the doc who told

me my 1 y.o. would get used to arterial blood gases and NG tubes and I

shouldn't overreact and my 4 y.o. -who was sensory and who adored his

brother- should behave like an angel in the hospital at all times or be

shipped off to relatives. The thing is he really did behave very well, he

just couldn't manage to be invisible. But living with that as a 4 y.o. was

a far cry from being baby-talked.)

Sorry, enough venting....

I know I've seen on the internet, how to email congressmen, on the

homeschool lists I think, so I will look it up. Won't be home all day

though, so maybe tomorrow.

Re: Newbie Here! Hello!