Anyone familiar with gluten intolerance?

My oldest dd is almost 16. Her stomach has been bothering her. Her doctor told her to keep a food diary in August and she hasn't done it. Her stomach is hurting after certain meals. The doctor and I thought it could be fat. (She is 5 foot 7 inches and weighs 116 pounds...very tall and thin). She is also a soccer player and in shape. Last fall it seemed that it was after fatty and/or spicy meals more so in a restaurant than at home. The doctor thought maybe high fat, I thought maybe type of fat. I don't use much at home and only use Olive or Canola.

Her stomach has been bothering her the last 4 days and she came home from school early today because it's really hurting. She NEVER misses school, so it must be bad.

She asked me this morning if it could be carbs. This thought has me intrigued. I don't know. I told her she has to start keeping her food diary this week and I'll talk to the doctor next week if it's still bothering her.

Also, there is some drama at school this week with an ex-boyfriend who is now seeing her ex-best friend and a dance coming up etc., etc., so I'm sure that may be playing into it, (this week anyway).

I googled gluten intolerance and it says stress is a factor. So, my question is - are any of you experience in this? Symptoms, ideas? The internet said not to change your diet until the doctor can check your "markers" (whatever that is) so I don't want her to change anything, just keep track of what she eats and if it hurts afterwards. Rolaids, Maalox, sprite with ginger doesn't seem to help.

Lisa

__________________
"It's not having what you want,
It's wanting what you've got"

Is she having diarrhea with it as well?

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Support bacteria -- it's the only culture some people have!

If Vegetarians eat Vegetables. Do Humanitarians eat Humans?

'Vegetarian' is an old Native American word for bad hunter.

No. I think she has occasionally had it, but not usually.

Lisa

__________________
"It's not having what you want,
It's wanting what you've got"

Lactose intolerance?

I do not understand all the hype over gluten. I think it's a fad. There is a disease called Celiac disease which involves gluten intolerance. It's rare though.

Lactose intolerance and allergy have similar symptoms. I would keep on investigating until I got the answer.

One of my kids was having stomach troubles and getting a headache after eating, We finally narrowed it down to a mono sodium glutamate sensitivity. Now she reads the ingredients before eating and is fine.
Restaurant meals are harder -- and MSG gets sneaked into a lot of things, so she just doesn't eat out much

I'd guess lactose intolerance.
My sister never had trouble with lactose intolerance until a year or so ago when she started having stomach/bowel trouble. She can have very small amounts of "real" dairy without trouble-the cheese on 2 pieces of pizza is fine but an ice cream cone is out of the question.

Has an ulcer been considered as a possiblity?

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If you give up dairy for a period of time, you liver stops making the enzyme necessary to break up the sugar molecule. Your sister should be able to eat cultured dairy products like cheese, yogurt and even buttemilk because bacteria has already broken the molecule. Ice cream isn't cultured. There are pills that you can take or if she switches to frozen yogurt she should be ok.

<I do not understand all the hype over gluten. I think it's a fad. There is a disease called Celiac disease which involves gluten intolerance. It's rare though.>

I do have celiac disease and it is getting more common then it use to be since more doctors are learning more about it. Alot of doctos were saying irritable bowel syndrome because they didn't know about celiac and alot of those people are finding out now that it was really celiac.

Kvmj, she did the pills and they helped for a while but not anymore.

She's just switched to lactose free milk and ice cream and uses the lactose free milk to make things like pudding so she's set. Cheese wasn't a favorite to start with outside of a slice or two on a sandwich which she can have without problems.

It was just weird how she was able to eat dairy for 30+ years before developing a problem.

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I don't think gluten intolerance is a fad. I think research has just pinpointed it and doctor's are learning more about it and are able to identify it. As I was researching on the internet, it says it used to take years to diagnose it.

I still don't know if she has it or not, but we're just trying to figure out what is bothering her. We also thought about lactose intolerance, but she seems to think it's more the carbs. She says it's feeling better this morning so I told her to have an apple and peanut butter for breakfast, but she wanted a bagel....teenagers....that's really why it's been several months and we haven't done much. She complains that it hurts, but then it seems to be that I care about finding the problem more than she does. I make suggestions and she doesn't take any of them - inlcuding keeping the food diary. Although she says she is doing it now. We'll see. It's not my stomach, so if she's not willing to do something about it, then it's not my problem!

Thanks for all the suggestions.

Lisa

__________________
"It's not having what you want,
It's wanting what you've got"

MSG "lights up" DH and DS really bad and myself to some extent. DH and DS's ears will turn very red and hot. Their cheeks will also turn red. I used to work with a girl that I could always tell if she'd had a hot dog at the student union before coming to work cause her cheeks would be red and hot.

Ganeden Biotech, Inc.

This is what DD takes. She still has to be careful with the amount of cheese and ice cream plus she takes 2 pills on those days. However, at least she is able to have dairy.

DD has a friend with this, but, I don't know too much about it. When you mentioned fat, the first thing that came to my mind was the gall bladder. Has she had that checked?

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Doing the right thing isn't always the same as doing the easy thing.

>>>re:I do not understand all the hype over gluten. I think it's a fad. <<<<

According to the Center for Celiac Disease at the University of Maryland, one in every 132 people in America has celiac disease, and nearly 15 times that number—up to 15 percent of the world's population, or one in seven people—have a non-celiac gluten intolerance.

Gluten-Free - Is It for Me? - Daphne Oz - Oprah.com

I am Gluten Intolerant and I can say it's no fad. If I eat a sandwich from subway I gain 15lbs of fluid within 2 days. It takes me 2 weeks to lose those 15lbs of water. My joints ache, I get in a crappy mood. It's horrible. I don't think humans were meant to ingest wheat.

__________________
Support bacteria -- it's the only culture some people have!

If Vegetarians eat Vegetables. Do Humanitarians eat Humans?

'Vegetarian' is an old Native American word for bad hunter.

She's been doing gluten-free for a little over a week now and it really does seem to be making a difference. I'm no gluten-free expert, but it would seem that she may have a sensitivity and nothing severe. She's been eating homemade smothies for breakfast and taking her lunch to school. She's taken her lunch for a long time, but has completely changed what she takes: last week it was a mixture of cheese, cashews, Rice Chex, raw sugar snap peas and carrots, fruit snacks, and fruit.

She's had a slow weekend around the house and has been trying a little food with gluten to see what happens - a biscuit for breakfast, some peanut butter cookies, and some graham crackers. She says it is causing a stomach ache, but not real bad. She's always been a carb-a-holic (as we call her) and I've suggested that perhaps she could eat gluten, but she just needs to seriously cut back.

And, actually, in helping her and becoming much more aware this last week, I realize that most of the products that contain gluten, we really shouldn't be eating in high amounts anyway - it's mostly processed stuff. We've been diligent about meat, fruit, veggies & rice this last week.

She's planning to continue with the gluten-free breakfasts and lunches to avoid any stomach issues while at school, then eat small amounts depending on her schedule. We'll stick with that plan for a while and see how it works.

Thanks for everyone's help. I appreciate it.

Lisa

__________________
"It's not having what you want,
It's wanting what you've got"

I work in a healthier store and we have many gluten free products. My co-worker can't eat gluten and he eats a lot of wraps and chicken salad with potato chips and fruit for lunch (if he doesn't bring from home). He said it was hard at first, but it has been 10 years and he is doing just fine now.

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-Kristi

If by chance she does need to be tested for celiac it's really important that she not follow a gluten free diet. If she's eating gluten free when being tested it will come out negative either way. It will only show true results if she's eating gluten containing products. I hope that makes sense.

I've been surprised with a few things - I guess because I've never paid attention to gluten, but tortilla chips & potato chips for a couple. Also, some oatmeal. It's not really too bad. Pasta and bread are the big ones, but I think we may try gluten-free just to see what they're like. Several years ago we switched to whole wheat on both, so maybe gluten-free won't be too bad? I don't know, I've heard they're terrible. I do know they're terribly expensive!

Lisa

__________________
"It's not having what you want,
It's wanting what you've got"

I read that and hesitated to have her try gluten-free, but decided to test it ourselves before we spent a bunch of money on testing. She does seem to be responding. We'll see how it goes. I would hate to tell her to go back to the stomach aches for the sake of testing, but we will if we decide we need to. We're just in the beginning stages at the moment. I don't think it's celiac because I don't think it's that severe.

Thanks for the info!
Lisa

__________________
"It's not having what you want,
It's wanting what you've got"

We just found (2 days ago) out that our little girl has celiac. She has to be on a gluten free diet. She is in kindergarden. I am looking for any good forums for support with this. My concern is her being in school with the diet while the others are eating food with gluten.. Thanks for the help.

I saw this website a while back and recommended a friend look into it. I thought it was interesting that there was a magazine especially for people with food sensitivities, gluten intolerances, etc. Hopefully it will help some of you.

Living Without - Home Page

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"Dance like no one is watching."

That actually sounds more like celiacs, it's often misdiagnosed as lactose intolerance -- and once you give up the gluten you can eat dairy again

I don't know much about Gluten, but I have had some strange issues for years. I am very active and exercise for over an hour daily, I also try to eat healthy. Last year I found out that I have Hypothyroidism and also an ulcer. I often have stomach aches, gas, constipation and although I am in great shape, my stomach always looks like I am pregnant, almost like it is full of air. It is so frustrating, because I work out very hard, and no matter what I do, it does not change my belly. I try not to eat too much sugar, and I always eat whole grains (no white breads, etc). My daughter suggested I might have Celiacs, but I know very little about it. I just know that I am growing sick of feeling sick all the time....

tammyleeb - I had that same problem with my stomach always looking puffy. A few weeks ago I decided to cut all wheat out of my diet just to see what would happen. My stomach is MUCH flatter and I'm losing weight. You may want to give it a try!

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There are so many colors in the rainbow
So many colors in the morning sun
So many colors in the flower and I see every one!
-Harry Chapin

Just wondering if you cut out all bread? If not, what kind did you eat? I eat organic bread, but it does have whole wheat in it. I try not to eat more than a slice a day, I love bread...

Yes - I cut out all bread, pasta, etc. Anything with wheat. I really didn't think I could do it, but it hasn't been that hard at all. I just eat other things in it's place.. for example I would have an egg sunny side up with toast. Instead I saute onions and green pepper and mix with brown rice. I place the egg on top. Very tasty. I also eat oatmeal with fruit mixed in, veggies with beans and barley, cereal made from oats... there are many things out there!

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There are so many colors in the rainbow
So many colors in the morning sun
So many colors in the flower and I see every one!
-Harry Chapin

They have all kinds of gluten free products including breads and pasta's -- if you have a trader joe's near you they carry a bunch of products -- a lot of supermarkets around here are carrying them now too.

Kroger also has the quinoa and rice pasta - I just haven't tried them yet

__________________
There are so many colors in the rainbow
So many colors in the morning sun
So many colors in the flower and I see every one!
-Harry Chapin

My mom, brother, and I have celiac. Some brands of gluten free pastas are better then others our favorite I can't think of the name (I know it when I see it) starts with a "T" (yeah I know I'm a big help) and the ones we don't care for are made with potato or corn, they get really mushy and end up in a ball. Good bread are really hard to come by, we haven't found any that are like good old bread. But Vans frozen waffles are very good and I have heard of people making sandwiches with it (I have not not tried the sandwiches). My mom sensitivity is much worse then mine and she can not tolerate quinoa even though it's suppose to be OK for celiacs.

Do you happen to know if the testing for Celiac is expensive? We have a very high deductable, so the cost of testing would not be covered.

When we thought my daughter was gluten intolerant we bought some gluten free products. She really liked the Udi's bread. I got it a Whole Foods. They said it's the "name brand" in gluten free bread.

Her testing showed that she is not gluten intolerant or celiac, though, so we're still trying to figure out what her problem is.

Lisa

__________________
"It's not having what you want,
It's wanting what you've got"

I do miss Peanut Butter and Jelly sandwiches - I'll have to try it with the waffles, that's a great idea!

I tried this today - oh my gosh, it was so good!

__________________
There are so many colors in the rainbow
So many colors in the morning sun
So many colors in the flower and I see every one!
-Harry Chapin

I'm not sure if anyone is interested, but the founder of SavingDinner.com - Menu Planning is currently doing a lot of discussing on facebook about food sensitivities. She has a program that you can use to help you discover what foods you are sensitive to. I think it's a 28-day plan that you would have to purchase to help you, through process of elimination, possibly, discover what foods could be causing you various reactions.

Just thought I'd mention it. I have no affiliation.

__________________
"Dance like no one is watching."

I don't know about the cost. When they did my blood test it was a "research testing" to see how it runs in the family so no cost to me. My test came back positive then I had the endoscopy (spelling) done and that confirmed it. As far as Udi bread I have not heard of it so I couldn't say if it's good or not. We don't have a Traders Joes or a Whole foods here.

my friend cannot eat gluten, she reads all pkgs, its in alot of items sometimes its called motified food starch. She was getting sick alot again and by accident she figured out it was anything with using artifical sweetner causing it,all candy, gum, soda, sugar that was low cal or diet.

Thought this article was interesting

Gluten Free: Millions Have Celiac, Few Diagnosed | Long Island Press


Amanda Brown, of Plainview, works as a student teacher at an elementary
school during the week. She also teaches Zumba, a fitness class that
combines exercise with Latin music and dance. Two years ago she was a
student at SUNY Oneonta, finishing up her sophomore year. Two years ago,
she was told she had stomach cancer.

When she first went away to college, Brown was diagnosed with mono.
Months later, still sick, she went to the hospital. Doctors found a cyst
on the outside of her ovary.

“I just never got better,” she says. A year later, she went back to the
hospital with horrible stomach pain, and was given a new diagnosis: an
interception of the bowel. She was kept overnight, given a CAT scan and
sent on her way.

A week later she was back in the hospital, again with severe stomach
pain. Diagnosis No. 5: There was nothing wrong.

“It was almost like saying to me, ‘You’re making it up, it’s in your
head,’ without verbalizing it,” she says.

Her gastroenterologist back at home found a surgeon she could visit in
Cooperstown, N.Y., while she finished her semester upstate. It was
finals week, so Brown made an appointment and took the 40-minute trip
before her exams, looking for an answer.

“He felt my stomach and told me I had cancer,” she says.

Scared and upset, Brown finished up her semester and went home. Her
doctor took a blood test, had her swallow a camera pill that would take
pictures of her intestines, and took a biopsy on her small intestine.

She didn’t have cancer.

She had celiac disease, a potentially fatal, but treatable, disease that
is almost never diagnosed properly, if at all. Even when it is, parents
and children struggle to get others—including doctors and school
administrators—to take them seriously.

FRIENDLY FIRE

Every aspect of life—from physical well-being to mental health—is
susceptible to damage from celiac disease, an intolerance to gluten, the
protein found in wheat, barley and rye. Unlike a wheat allergy, which
causes a sudden, severe reaction like breathing difficulty, celiac is an
autoimmune disease with a slower onset. Simply put, exposing a celiac to
even the tiniest bits of gluten, which the body is unable to digest,
causes it to turn against itself and attack its internal organs, waging
a war on the immune system and destroying the intestinal walls so food
and nutrients cannot be absorbed. Over time, celiac can lead to cancer,
malnutrition and other disorders. But because many people think of
gluten-free as a diet or fad, the fact that the disease is a serious,
chronic, lifelong problem, is often overlooked.

An analysis done by the Hartman Group, a consumer marketing company, in
2009 found 93 percent of the people who buy gluten-free products don’t
have celiac disease. They were either excessively health conscious or
fad dieters in search of the next trend.

“Just because alternative health practitioners, personal trainers and
celebrities are jumping on the gluten-free bandwagon, doesn’t mean it is
right for everyone,” says dietician Shelley Case, author of Gluten-Free
Diet. “Contrary to popular buzz, the GF diet is not a panacea diet.”

Case worries that too many people will look to the diet to solve all of
their problems, from learning disabilities to obesity. The gluten-free
diet only alleviates symptoms for those with an intolerance. For those
without an intolerance, gluten is an important source of protein, iron
and calcium. But as going gluten-free gains more attention, especially
in Hollywood, the gluten-free lifestyle is often seen as the next
low-carb diet.

“There really is nothing that irritates me more than hearing, ‘It’s just
a piece of bread’ or ‘I hear you’re on the Atkins’ Diet’—like it’s the
same thing,” says Craig Pinto of Jericho, kicker for the New Jersey
Revolution arena football team, who was diagnosed with celiac 10 years
ago. “Serious things can result from not getting this treated properly
or diagnosed early enough, so it’s sad when it gets passed off as a joke
when you can’t have a burger with a bun.”

Since celiac, a multi-symptom and multi-system disease, doesn’t always
involve a stomachache, produces strikingly different symptoms in
different individuals, and often mimics other disorders, it is commonly
misdiagnosed. Celiac could manifest as an intestinal infection in one
patient, a rash or growth problems in another and neurological problems
or even dementia in a third. Recent studies suggest a gluten connection
with some cases of autism. Celiac is also more likely to affect those
who already have another autoimmune disorder, like type 1 diabetes or
rheumatoid arthritis.

Pinto, who played football for Hofstra during college, was diagnosed
with celiac in 2001, 10 years after he was diagnosed with Crohn’s
disease, another autoimmune disorder.

“I was a pretty rambunctious little kid, but at that point I wasn’t
growing,” he says. “I was pale, I was very sick a lot with stomachaches,
but I was active so it was just kind of put off as I just had to settle
down, eat and relax for a second.”

At 21 years old, he was still up late at night feeling sick after eating
pasta or pizza. Since those who have one autoimmune disease are more
likely to have others, and Pinto already had Crohn’s, he was tested for
celiac. The test came back positive.

BREAKING BREAD

It’s 2:30 p.m. on a Monday, and Randi Albertelli of Old Bethpage is
waiting for her two kids to get off the bus. Amanda, 9, was diagnosed
with celiac when she was 5 years old. She had leg cramps, headaches and
a distended belly. At her yearly checkup, the doctor found she was
anemic.

“It was kind of a red flag because she was such a good eater as a child
that we kind of questioned it, but we really didn’t pursue it,
unfortunately,” says Albertelli.

As time progressed Amanda came down with other symptoms. She was moody
and getting stomachaches.

“Luckily enough my pediatrician tested for celiac disease. We had no
idea what it was,” she says. Her stomach had been swelling from
malnutrition, even though she was eating like a normal kid.

“It was traumatic, it was devastating,” says Albertelli. “There are so
many other horrible things in this world, but as a parent all of a
sudden to hear that your child can’t eat certain things, it was
upsetting. Now I look at pictures and I see it, and I say, ‘How did we
not know?’ You get so mad at yourself as a parent, but I didn’t know.”

Albertelli—who had her own stomach issues for many years—and her husband
Robert started researching the disease and realized there was a genetic
component. As a rule, every first-degree relative is supposed to be
tested when a child is diagnosed with celiac.

Albertelli tested positive for the disease. Even more shocking, her
husband, who didn’t seem to have any telltale symptoms, was diagnosed as
well. Since one in 133 people have celiac, the chances that they would
both have the disease is 1 in 18,000.

At this point, the whole family went gluten-free, except the
Albertellis’ younger son Andrew, who didn’t test positive for celiac but
carries the gene.

“The doctor said, ‘Just wait and watch how [a gluten-free diet] is going
to change your daughter’s personality,’” says Albertelli. “Her whole
persona was different.”

A gluten-free diet is the only treatment for celiac. Even still, the
disease never actually goes away, but avoiding gluten will relieve its
symptoms in most cases.

But avoiding gluten can be challenging, and cross-contamination is a
serious possibility.

If a piece of bread is only dunked in a pot of sauce that a celiac will
eat or if a knife used to cut a doughnut is then used to slice
gluten-free bread, there is enough gluten transferred in each instance
to cause damage that can lead to problems like cancer later in life for
someone with a gluten intolerance. This makes school lunch not only
tricky, but dangerous. The Albertellis asked the school to let Amanda
use a separate microwave to avoid cross-contamination and also so she
could eat something other than a spoiled sandwich for lunch, since
gluten-free bread doesn’t hold up well throughout the day.

The Albertellis filed a 504—a modification under the federal civil
rights law when a child needs special accommodations at school.

GETTING SCHOOLED

Named for Section 504 of the Rehabilitation Act of 1973, 504 programs
provide services for students who have a physical or mental impairment
limiting at least one major life activity. For instance, a student with
a broken arm is considered handicapped and can request someone carry his
or her books until the cast comes off.

The Albertellis set up a meeting with the board of education, came in
with a doctor’s note and explained what celiac was to school
administrators who hadn’t heard of the disease before.

“All I needed was a medical diagnosis—which I had,” says Albertelli.

But administrators said they wanted the district doctor to be part of
the meeting via telephone conference. Albertelli agreed.

“When you’re in front of people who know nothing about it, you feel like
a physician holds some weight,” says Albertelli. “He said he was a
gastroenterologist and he said he had patients with celiac disease.”

He also said their requests were totally unnecessary and that
cross-contamination was not an issue at all.

“It was a nightmare; he was outrageous, nasty and bullying,” she says.
“He not only belittled us, but he didn’t know anything about celiac—and
I looked like a crazy parent.”

Albertelli did some research and couldn’t find anything that said a
doctor should be present at these meetings.

“I follow the rules, get a medical diagnosis, write a letter to ask for
the meeting,” she says. “Now you’re changing the rules on me?”

But Albertelli’s situation was nothing new.

“Randi’s example of the doctor is not an unusual situation,” says Dr.
Peter Green, director of the Celiac Disease Center at Columbia
University Medical Center. “The rate of diagnosis of celiac in this
country is increasing, but it is way, way behind the rest of the world.”

Green mentions Australia, where gluten-free foods are displayed in the
front of supermarkets and asking for a gluten-free slice of pizza is
nothing out of the norm. But here in the United States, Green says those
with celiac disease can see many doctors over a period of up to 11 years
before they are accurately diagnosed and treated, while 97 percent of
celiac cases go undiagnosed.

Albertelli wrote a letter to the board of education explaining this. A
new doctor was called in and she received a letter of apology.

“They were so nervous about what to do because this was the first time
they were ever asked to do something like this,” says Albertelli. “I
guess we scared them in a way. That’s what happens the first time for
anything.”

Kathy, a lunch aide in a Suffolk County elementary school, believes this
is true among most schools, including her own.

“[Schools] are behind in this area,” says Kathy. “I won’t say it’s done
to harm the child, which unfortunately in the end it does, but there are
parents who take advantage of the system, so [the school] feels if they
do for one they have to do for all, and they can’t do for all,” she
says, referring to parents in her district who had asked for special
treatment, like having their kids leave for lunch early or keeping
separate food in the school cafeteria merely for convenience. “But in
the case of a student who needs special treatment for health reasons,
it’s not right to deny them.”

After months of jumping through hoops, Amanda can now use a separate
microwave.

Meanwhile, Sandra Tauckus was fighting a different battle.

AUTOIMMUNE

Like Pinto, 7-year-old Kate Tauckus, of Manhasset, was diagnosed with
celiac after being diagnosed, at 14 months, with another autoimmune
disease—type 1 diabetes. Three years later, celiac came up in one of her
standard blood tests.

“I have a different story with celiac in that they were looking for
other diseases that go along with diabetes,” says her mother, Sandra.
“If 10 years went by I think I would have had a different story.”

Kate had been showing signs of digestive distress since she was born,
even though her previous blood tests came back negative for celiac. The
only definite way of telling celiac disease is through a small
intestinal biopsy.

“Looking back you’re knocking your head against the wall, saying ‘I
should have known better,’” says Tauckus. “She was still very young so
she wasn’t able to verbalize how she was feeling.”

Compared to diabetes, celiac is a relative unknown, but for the Tauckus’
it was the diabetes that went undetected by doctors.

“We went through hell,” says Tauckus. “The regular pediatrician kept
sending us home with Tylenol saying she’s just an irritable baby.”

Tauckus lived in Hoboken, N.J., at the time. Her husband has type 1
diabetes, so she knew what to look for. For four-to-five months Kate had
extreme thirst, she was losing weight, had a high fever and sores in her
mouth that wouldn’t go away. She was diagnosed with coxsackie, a common
childhood illness that causes blisters in the mouth.

“Your standard doctor, whether it’s a generalist or a pediatrician, they
don’t really know much about these diseases,” she says. “They keep
calling [the child] colicky, or she’s just crying a lot, and here this
baby is wasting away. I remember breaking down and saying, ‘Just test
her blood, I’m positive she is diabetic.’”

“‘Mrs. Tauckus, babies don’t get diabetes,’” she recalls the doctor
saying to her.

Tauckus was in the process of moving to Long Island when she brought
Kate to a small hospital in Allentown, Pa. When the doctor removed her
diaper, it smelled like nail polish remover because she was so high on
sugar.

“A resident took one look at her and said, ‘This baby is diabetic,’” she
says. “You eventually go into a coma because your body is just poisoned
with sugar levels that the kidneys and liver can’t get rid of.”

Having diabetes and celiac made Kate’s blood sugar even harder to keep
balanced because her body wasn’t absorbing the nutrients the way it
should, which would affect her sugar levels. It also meant Kate had two
autoimmune diseases which makes her even more susceptible to getting
others.

“Some people’s bodies are predisposed genetically to an autoimmune
disaster,” says Tauckus. “Her doctor said she is probably going to be
getting something with her thyroid. Now that you have two autoimmune
diseases you start looking for some others—nothing is guaranteed but
there is a much higher percentage than if she just had diabetes.”

Tauckus had just moved to Long Island. Like Albertelli, it was time to
take on the schools.

BACK TO SCHOOL

At her Manhasset elementary school Kate has an aide, a non-medical
person who shadows her in the school. She is on a pump that administers
her a drip of insulin throughout the day when she is not eating. When
she does eat, she not only has to make sure the food is gluten-free, but
she has to have the pump adjusted to administer more insulin. To do this
she has to go to the nurse’s office multiple times per day.

“With this disease it’s tricky, you’re constantly pulled out of class,”
says Tauckus, who realized her daughter was missing more than 30 minutes
of class per day going back and forth, a process made more risky by the
distance she would have to walk with questionable blood sugar levels.
Tauckus asked the district for one of the nurses to go to the classroom.

“You’ve got this little girl, she was 5 years old, the building is very
large,” she says. “You’re making her walk to the nurse for this because
the aide isn’t licensed.”

Like the Albertellis, the Tauckuses also filed a 504. Their request was
denied.

“They keep saying they have to do the minimum to take care of children
as far as who has diseases and keep them safe and they’re doing that,”
she says.

Tauckus had also presented her case before her school district.

“I was told I’d have to go through the legal route and sue the school,
that I’m not the only one with a child with an issue and they’re not
here to solve individual issues,” she says. “You know, you have to spend
all your money first, then come to us. I can’t seem to get through to
the district without having to hire a lawyer. But come back to me when
she’s walking down the school stairs when she has a low blood sugar
because you’re making this child walk to the nurse constantly and she
falls down the stairs. You get away with as much as you can not wearing
your seatbelt, but then an accident happens.”

FEELING DIFFERENT

Everyday things like birthday parties at school are a whole other issue.

“I always have a gluten-free cupcake for her, but many times people
forget to tell you about it beforehand,” says Tauckus. “It sounds kind
of silly, but when you see your own child looking around the room
comparing herself, and you know she is, it’s painful. She was coming
home upset and crying and then she was lashing out at us, saying ‘It’s
not fair, why did you give this to me?’ They don’t know how to express
it but it’s definitely being expressed.”

As an athlete, Pinto also had a hard time dealing with the change in
diet. When he was diagnosed with celiac he had been playing college
football for years.

“I felt really miserable,” he says. “I thought of myself as a sickly
person because I wasn’t able to eat pastas and breads, the stuff you
would think would bulk you up or the carbs you need to be an athlete.”

Pinto stopped playing sports altogether. He suffered from anxiety and
depression, also side effects of celiac, feeling his career was over.

“I just really fell out of anything I really enjoyed with sports,” he
says. “For me it was a mental thing, I felt like I had a lack of
strength, a lack of ability. I didn’t want to do anything active. You
look at pro athletes on TV and you don’t see any of them with sicknesses
or diseases. In my mind I felt like what I had wasn’t conducive to being
a good athlete.”

Pinto says he now takes a more proactive stance and has fine-tuned his
diet. Now his main focus is spreading awareness. He is organizing a
fundraiser for the Celiac Disease Center at Columbia University and
teaming up with Guinness World Records for another event, also to raise
funds for the Center. Both will take place this July.

“I don’t want kids to get the feeling that if they have to change their
diet, they can’t do this or they can’t do that, so we really just want
to raise awareness that it is not the end of the world,” says Pinto.
“It’s just a little speed bump to get past.”

To help bring celiac kids together, Albertelli runs a group called
Raising Our Celiac Kids (ROCK) that funds research and get-togethers for
Long Islanders with gluten intolerance. She has raised more than $22,000
over the past three years. The group also helps bring awareness into the
community and to connect those with celiac to the medical community.

“It’s an odd thing about how the medical field kind of lags behind,” she
says, adding that her brother-in-law learned extensively about
gluten-free baking at The Culinary Institute. “For some reason in med
schools they have like a blurb on it and they pass it over.”

Celiac is relegated under the heading of a “rare disease,” as taught in
medical schools, since it affects less than 1 percent of the population.

“I don’t want people to belittle it, because it’s real,” she says. “Some
people don’t think it’s real.”

AGAINST THE GRAIN


For most celiacs, the relief is immediate after following a gluten-free
diet.

“When I was feeling sick, I would eat bread or pretzels, what you’d
think are the normal types of things that will make your stomach
better,” says Pinto. “And it just kept making it worse and worse.”

Now, Pinto is very aware of the signs if he accidentally ingests gluten.
He gets an instant headache, bloating and severe stomach pain.

“For the rest of the day my system would just be shot,” he says.
“Anything I ate after that, my body would reject it.”

Brown remembers having discoloration on her teeth as a child, anemia,
and feeling nauseous, all potential signs of celiac disease.

“The first thing I ate when I got back from the hospital was an egg and
cheese sandwich on a roll because I love my carbs,” says Brown of one of
her trips to the hospital before she was diagnosed. “Little did I know I
was killing myself.”

But going gluten free isn’t just about bread and it can be hard when
gluten turns up in unexpected places, like ketchup. Gluten is often used
to boost protein in low-protein foods, especially processed and
convenience foods. Even medications and lipsticks can have gluten in
them.

“I had to get medicine for a sinus infection and I asked if it was
gluten-free and the doctor said that even if it wasn’t it’s only a
couple of days, it’s not going to hurt me,” says Brown. “But it would
hurt me, and even if I don’t feel pain now it’s going to hurt me later.
The more gluten I eat, the more it’s tearing my intestines and then the
closer I get to having cancer later in life.”

It also takes time for the body to heal from the years of damage that
has already been done.

“I could have possibly had this since I was 10 years old,” says Brown.
“That’s 12 years I could have had this and not known—that’s a long
time.”

The gluten-free diet is also getting attention from outside the celiac
community, like those researching autism and dementia. Certain
reversible forms of dementia have been linked to a gluten intolerance.

Some doctors believe that like celiac, autism is also an autoimmune
disease and some—like actress Jenny McCarthy—claim a gluten-free diet
has made a significant difference in, and possibly even cured, their
autistic children.

Dr. Vijendra Singh, director of neuroscience research at Brain State
Technologies, Inc., and an independent scientific consultant, has
labeled this subset of autism as autoimmune autism.

“Autoimmunity is the most extensively investigated topic of research in
autism,” he testified before the federal government, urging the
Government Reform Committee to look beyond genetic funding for autism
research. “This is by and large due to the fact that autoimmunity is the
prime target of therapy that has proven to be quite effective in
ameliorating autistic characteristics…autoimmunity research, unlike the
genetic research, has already significantly improved the health and
welfare of individuals with autistic disorder.”

Mary Ellen, of Merrick, who declined to give her last name, has had her
9-year-old autistic son on a gluten-free diet for the past year. She
says she sees a difference in his behavior.

“He’s calmer, less irritable,” she says. “Maybe it’s just a coincidence,
but if there’s even a possibility it can help, and it’s something
dietary that I can do and control, I’m going to at least give it a try.”

But without medical reason, removing gluten from the diet isn’t
something to be taken lightly. Vitamin deficiency is a risk on a
gluten-free diet, and gluten-free food gets pricey, costing up to more
than two times the price of regular items. Since food is not considered
medicine, medical companies don’t offer any coverage, and some stores
jack up the prices just because they see a new market they can tap.

“It’s not right, but I can’t complain because it’s out there and that’s
so much better than it was years ago—as long as it’s out there and I can
survive, then that’s really all that matters,” says Brown, who teaches
nine dance classes every week. “I dance all the time, because after some
of the things I was told, I just feel lucky to be alive.”

TRENDING TOPIC:

GLUTEN

Sandwiched between Zack and Miri Make a Porno and Lady Gaga, the
Internet trend site TrendHunter.com lists gluten-free diets as a trend
for 2009. There is little question consumer interest in gluten-free
eating habits—as well as gluten-free products—is growing. Sales of
gluten-free foods is the fastest growing U.S. grocery category,
according to the Nutrition Business Journal, increasing by more than 18
percent per year.

Gluten, the Latin word for “glue,” is a protein contained in the cells
of wheat, rye and barley. It is an important source of nutritional
protein, both in foods prepared directly from wheat, and as an additive
to foods like sauces and condiments, to boost protein. It gives kneaded
dough its elasticity, allows leavening and is a binding agent that
contributes shape, texture and chewiness to baked products like bagels
and pizza. It is highly incorporated into vegan diets in the form of
seitan as it absorbs flavor and has a meat-like consistency. Growth of
convenience and fast foods has led to an increased use of gluten as an
additive to non-wheat products, with the United States being the largest
consumer of wheat gluten in the world. Because of bio-engineering,
modern wheat contains almost double the amount of gluten it did a
century ago.

For those without a gluten intolerance, gluten is harmless and avoiding
it could cause dietary deficiencies. But for those with an intolerance,
gluten causes the body to have an abnormal reaction and launch an attack
on the body’s immune system.

Because celebrities like Elisabeth Hasselbeck, Zooey Deschanel, Rachel
Weisz and Victoria Beckham have gone public with their gluten-free
lifestyles, which they adopted either by necessity or by choice, word is
spreading about gluten-free products, among those with gluten
intolerance, and among fad dieters looking for the next trend.

But because this is a trend that, for some, is a way of life, many
wonder whether all the attention gluten-free diets are getting belittles
the severity of the actual disease or if it is a move in the right
direction for the millions still undiagnosed.

Celiac disease affects 1 percent of healthy, average Americans. That
means at least 3 million people in our country are living with celiac
disease—97 percent of them are undiagnosed.

We have gotten the Udi bread, and it's not bad. Nothing is exactly the same, but this one seems pretty close. We couldn't buy it locally for a long time, and would just order it.

Gluten Free Foods in Denver, Colorado | udisfood.com

We also did a lot of shopping at

glutenfreemall.com - gluten-free foods for your celiac disease diet

and this site gives a list of products from General Mills/Betty Crockera that are in all stores that are gluten free

LiveGlutenFreely.com - Products

I hope this helps some............

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Nicole

Thanks for the info ilovejkd, that was interesting info.