angel-jd1

Up on the menu bar it says "view new posts" if you click that it will take you to all the posts since your last log-in. Once you have read them they become lighter in color than the ones you haven't read yet.

-Jessica

Have you tried making smoothies?? Or use the fruit pure as an icecream topping.

Just a glass of juice would be better than no fruit at all.

Always remember that kids are not going to starve themselves!! They go through phases where they don't/won't eat things. They may eat hotdogs for two weeks straight, but they ARE eating. Keep giving the vitamin and hang in there.

-Jessica

Awesome!!! I'm sure you did a great job and informed several people about Celiac disease. Way to go!!

-Jessica

I have read where some children DO experience developmental and physical delays. They seem to "come out of it". Things will start catching up, height, weight, speech etc.

-Jessica

I was wondering if it is worth it.

I guess if cancer, diabetes, lupus, infertility and tons of other nasty things don't make it "worth it" then I don't know what does.

I feel 200% better on the gluten free diet. I was deathly sick before. Now I have life and energy.

There are tons of things to eat. Most are naturally gluten free. It takes some work to get the hang of the diet. But it is much better than being sick.

When first starting out, stick to non packaged foods. Go for fresh meat, fruits, and veggies. Let your stomach heal. Then you can get a little more creative. Begin calling the manufacturers of some of your favorite products and ask them if they contain gluten. Most companies have that information readily available. You will find that many things are gluten free. You will learn what brands you can trust, and how to read labels. Things will fall into place and get easier. Hang in there.

-Jessica

Don't they make their breads "on site"? I wouldn't eat there because of contamination. Flour in the air takes a long time to settle and would contaminate the whole area. No thanks!!

-Jessica

*Fresh Fruits and Veggies

*Meat (hamburger to make in a hurry things like tacos)

*Eggs (an omlet is easily thrown together when you can't find anything else)

*Tortilla chips and salsa

*Cheese (shreaded, sliced, block, velveeta, LOVE cheese)

*Breakfast bars (genisoy, thinkthin, glutino)

*Canned beans (refried, kidney, pinto to make chili or bean burritos in a hurry)

*Fruit Juice

*rice flour

*corn starch

*gluten-free Cereal

*Amy's Frozen dinners

*Amy's Frozen rice crust pizza

*Frozen French fries (Ore-Ida)

*Pizza Sauce in the squeeze bottle

*Ketchup (Heinz)

*BBQ sauce (Sweet baby Ray's)

*Chili and Taco seasoning packets (william's)

*boullion cubes (herbox)

*spices (use them all the time, McCormick)

*frozen chopped onion (figure since I cook, i need to save time in other ways)

*frozen chopped green pepper

*Sghetti Sauce

*tomato sauce

I'll have to add to my list if I think of more things. I cook all the time. There aren't any Outbacks or PFChang's within a 2 hour drive of me, so I don't go out to eat (except occasional McD's). Therefore I need a stocked kitchen. I love to cook and like to think I am pretty good at it. So there is a list of things that I always keep on hand at my house. I'm sure I have left some things off. Hope it gives you some ideas though.

-Jessica

I have read a few articles on her, and looks like she kinda gives us some bad press. She put down the "Living Without" magazine

I'm not so sure she is the person to "spear head" our campaign! ha

-Jessica

Do any of them like Amy's frozen dinners?

Also not sure if you are flying or driving. If you are driving pack a cooler with gluten free meals(made in advance) from home. I do that when we go on vacation. I make things up ahead of time, pack them in ziploc containers and pack them on ice. As long as you add ice to the cooler every day they stay frozen. Just heat in the microwave for a healthy meal.

-Jessica

Jess-

You said it correctly "IF" the dr accepts the enterolab diagnosis. Otherwise you won't be getting a 504.

Hummmm lost your password, maybe you can hit that "forgot my password" link and it will send it to ya, we miss ya on the site.

I can't make it to the meetings because I work on Thurs when they have decided to have them. Oh well, I get pleanty of support on here and on USA Silly Yaks

-Jessica

Guess I wasn't important enough for them to notify you of my message!!

-Jessica

Yep, you are on the right track now.

-Jessica

I made lasagna tonight, but cheated and didn't do the full blown recipe like you did. I used some classico sghetti sauce Didn't cook the noodles before putting the lasagna together either. Then for the cheese mixture I used 1/2 ricotta and 1/2 cottage cheese 2 eggs 1/4 c parmasan some italian seasonings.

It was very good and I was impressed how easy it was to make. I had never made lasagna before!!

-Jessica

I have read that many people who are diagnosed at an early age have symptoms that go away during adolescence (puberty). This info would fit with you being 15 when you had what you call "remission". However with celiac, there is no remission. The symptoms may have temporarily went away, but you were still doing damage by eating gluten.

-Jessica

I drink Gatorade and powerade quite often. I love them both.

-Jessica

Applebees is VERY not celiac friendly. I refuse to spend my money there.

-Jessica

Possibly you have problems with the colorings/dyes or something like that. Like celiac3270 said, Coke is a HUGE company and it would have alot to risk if they were giving out false info. I drink Coke products with no problems, and trust them.

-Jessica

Always fun finding products that are labeled safe for us!! I love that. Enjoy your salsa.

Oh by the way, it is a local product or something that is sold on a larger scale?

-Jessica

Interesting, I sure would like to know what the "true" story is on them. I know the lady told me they were changing and adding wheat.

-Jessica

This is one of the best articles I have read in quite a while. Has tons of info in one short article. -Jessica

Posted on Sat, Mar. 19, 2005

Terrible disease found to be common

JOE GRAEDON and TERESA GRAEDON, Ph.D.

Knight Ridder Tribune News Service

Graduating medical students are sometimes told: "Half of what we have taught you is wrong . . . we just don't know which half." As amusing as this sounds, it rings true for a complex condition called celiac disease.

For decades medical students were taught that celiac disease is rare, that it affects the digestive tract and that afflicted children grow out of it. All these myths have now been disproved.

Celiac disease was once thought to affect only one child in 5,000. That would make it so uncommon that few doctors would ever make the diagnosis. With such statistics, a pediatrician might see a handful of cases in a lifetime.

But now researchers have found that celiac is actually quite common, affecting one person out of 100. Because genetics play a role, a person with a family member who has celiac disease has one chance in 22 of being affected.

Millions of Americans are afflicted, but most don't even know it. It might take years or even decades for the problem to be diagnosed. By then, it could be too late to undo the damage.

In celiac disease, the immune system reacts to a protein called gluten found in wheat, barley and rye. This triggers an inflammatory response in the small intestine that can interfere with efficient absorption of nutrients. Early recognition of digestive-tract involvement led doctors to pay attention to symptoms such as stomachaches and diarrhea.

But many patients diagnosed with irritable bowel syndrome might not realize that their discomfort could be due to celiac disease. One study found that 12 percent of patients with IBS were gluten-intolerant.

Many patients don't have classic symptoms, however. Chronic fatigue and anemia that can't be attributed to other causes might well be signs of celiac disease. Other immune conditions, such as type-1 diabetes and thyroid disease, may be associated with celiac disease. A chronic, itchy rash known as dermatitis herpetiformis is another odd sign of an immune reaction to gluten.

People with gluten intolerance cannot absorb adequate amounts of calcium, magnesium, iron or other essential nutrients from food. As a result, their bones become weak and brittle.

New research shows that celiac disease is common among adults with osteoporosis, affecting more than three in 100 (Archives of Internal Medicine, Feb. 28, 2005). The investigators conclude that anyone diagnosed with osteoporosis should be screened for celiac disease.

Debilitating neurological disorders may also signal celiac disease. Some patients might appear to have early-onset dementia. Others experience chronic migraine or peripheral neuropathy (pain, tingling or burning in feet or hands).

For readers who would like to learn more about celiac disease, we offer a celiac disease of a one-hour radio interview with one of the world's leading experts. The show provides information on diagnosis and treatment. It is available for $15 from the People's Pharmacy (celiac disease-455), P.O. Box 52027, Durham, NC 27717-2027.

Many physicians practicing medicine today never learned about the range of problems celiac disease can cause. With evidence mounting that it is common, patients deserve to be tested. For those who are affected, a strict gluten-free diet can prevent many complications.

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I am not sure which form of psyllium you are talking about, but most of the fiber therapies (citrucel, etc) use psyllium husks. Many folks with celiac take things like citrucel on a daily basis.

Psyllium Husk:

Pysyllium Husk is a high fiber, gentle colon scrubber that is used to help treat most forms of intestinal problems. This vegetable simultaneously cleanses and lubricates the intestines without negative side effects. Psyllium Husk soluble fiber prevents cholesterol absorption while insoluble fiber removes disease promoting toxins and other contaminants.

Psyllium Husk removes toxins which cause auto-intoxication and restores tone to the mucous membranes of the intestines. An excellent colon cleanser.

Helpful for; colitis, colon blockage, constipation, diverticulitis, dysentery, gonorrhea, ulcers, intestinal and urinary tract disorders.

I don't know a thing about the benzonite mixed in.

-Jessica

Mariann-

I would consider eating to be part of sustaining life. I wouldn't see why it wouldn't be on the list, possibly just got "left off"? If it really doesn't qualify then you are right, needs to be supported by some major celiac organizations to help these kids get what they need!!

Valerie-

Most colleges that I have heard of seem to be pretty cooperative (after some prodding) when it comes to celiac. You really should(if you haven't already) make a appointment with the school dietician, head of the food program, disabilities director, and the school president if possible. Sit down and talk about needs. Ask if maybe they would give your daughter some freezer space, her own toaster (or at least a safe place to leave one), just simple things so that she could have some of her foods. Don't forget that we are covered by the Americans with Disabilities Act. You might want to also bring that up.

I'm not sure what school food service the college has but I have written to sodhox and they seem to be a wonderful and cooperative group. They serve colleges all around the US.

-Jessica

It takes quite a while to heal, and even longer to "get the hang of" the diet. If you would like feel free to post what your daughter has been eating and the folks here can look for hidden gluten. It is easily missed. Include brand names of items, medicines, vitamins, toothpastes, anything that goes into her mouth. Sometimes it is something simple that has slipped through the cracks.

-Jessica

Here is another article on the Westport student. I thought I would share it.

-Jessica

A civil lawsuit filed against the Westport Board of Education and against five employees of the board as individuals, including Supt. of Schools Dr. Elliott Landon, charges that the school board and the five individual defendants violated a student's civil rights by conspiring to revoke the pupil's disability designation at a meeting in January, 2004, without telling the parents ahead of time that they planned to do so.

In addition, the suit says that Landon illegally retaliated against the father, and consequently, against the student.

 

Suit alleges school board violated student's rights The lawsuit asks for a jury trial against Landon.

The suit asks for "compensatory and punitive damages" from both the school board and the five individual defendants, who, besides Landon, are the Director of Pupil Services Cynthia Gilchrest; nursing supervisor Nadine Schwab; Coleytown Middle School nurse, Elizabeth Russ, and Coleytown Middle School vice-principal Arlis Aron. The suit was filed on Feb. 24 by a pupil and the pupil's parents, known only as Mr. and Mrs. A.

The lawsuit charges that Landon retaliated against the father, a certified public accountant, because the father had asked for documents relating to the school board budget. The father was trying to find ways that might allow the school system to find other means of saving the $158,000 that Landon was "purportedly" saving by having Coleytown Middle School start half an hour earlier, at 7:30 a.m. instead of 8 a.m.

The lawsuit states that the father did find "a lack of internal controls" in the school district's finances and that he further found that a copier contract had been canceled at a cost to the school system of $350,000. The lawsuit states that when he asked to meet with Landon to suggest better financial alternatives, Landon refused.

As a result of the father's activities, the suit states that the board had a number of discussions regarding its purchasing policies and that Landon "suffered considerable personal embarrassment and stress due to the financial scrutiny conducted by the father." The suit further states that "Both in board meetings and in private, defendant Landon expressed his ire and indignation," and that Landon derogatorially referred to the father and another auditor working with him as "alligators."

Yet, the lawsuit notes, "the father was engaged in activity protected by the First Amendment to the United States Constitution when he audited the board's records, pressed the board to make changes and publicized his findings." The suit alleges that Landon knew that the father's actions were protected by the First Amendment and yet Landon, through his subordinates, ordered the adverse action of revoking the student's Section 504 designation in retaliation.

The student was granted a Section 504 designation in the fall of 2002 because the student had Celiac disease, a digestive disease that damages the small intestine if one eats wheat, rye, barley or other foods containing gluten, according to the lawsuit.

"504" refers to a federal civil rights law that prohibits discrimination against individuals with disabilities, physical or otherwise. It ensures that all students have equal access to an education by receiving accommodations if necessary. As a result, this particular student was allowed to use the nurse's freezer and the cafeteria to hold snacks and frozen entrees and the cafeteria staff was to provide a gluten-free meal. For the remainder of the 2002-2003 school year, that was done without controversy.

That summer, the start time of Coleytown Middle School was changed from 8 a.m. to 7:30 a.m., and the mother became concerned because the child's physician had found that the student had an increased glucose level. The student's pediatrician wrote a letter to school personnel saying that "Medical studies have shown that adolescents who don't meet their sleep needs have elevated blood glucose levels and altered glucose tolerance ... [meeting the student's sleep needs is necessary to] minimize any additional risks of developing diabetes."

As a result, another 504 meeting was held in September 2003, and it was decided that the school nurse would develop a plan to help the student get more sleep. The nurse did so, meeting with the mother and the student at least once each, but followed up with only one phone call, according to the lawsuit.

Also according to the suit, the following three events occurred in December. Vice-principal Aron sent a notice of a 504 meeting to the parents, which stated that the purpose was "to review the existing 504 plan for your child." According to the suit, she did not mention the student's eligibility would be questioned or revoked. Nurse Russ called parents to ask about the student's health, but did not mention that the student's eligibility would be challenged at the January meeting. Nursing supervisor Schwab spoke to the student's pediatrician without the parent's consent and asked the doctor not to report the conversation to the parents.

Subsequently, at the January 2004 meeting, the 504 designation was revoked.

Two weeks later, the parents wrote to Gilchrest to challenge the decision of the team and ask that the student's accommodations remain in place during an appeal. Gilchrest refused.

On Feb. 23, the parents requested an impartial hearing and the parents' advocate provided "detailed, consistent letters from three of the student's treating physicians," to the defendants, although, according to the lawsuit, the defendants ignored the letters because they said the student seemed to function well in school.

The administrative hearing began in mid-April 2004 and continued through mid-December, 2004, encompassing 13 days of testimony.

On Jan. 25, 2005, the hearing officer found that the student was not entitled to a disability designation because the student's condition did not substantially limit a major life activity. However, the hearing officer did find that the school board violated the student's procedural rights under Section 504 in connection with the January 2004 meeting by "failing to properly notify the parents that the student's eligibility under Section 504 would be reviewed at that meeting," and by terminating the student's accommodations in spite of the parents objections.

The hearing officer ordered the school board to "correct its procedures for describing the scope of Section 504 meetings ... to assure that the notice accurately defines the scope of the meeting." The decision further said that the hearing reflected a "profound breakdown" in what had previously been a productive relationship between the parties, adding, "The relationship is now characterized by an atmosphere of distrust which has shown no signs of abating over these hearings."

The hearing officer further "strongly suggested" that the board put its procedures regarding individualized health care plans (IHCP) in writing and "consider soliciting input from interested parents before finalizing these procedures." On the other hand, the hearing officer suggested that the parents "execute releases permitting the free exchange of information between the school nursing staff and the child's physicians."

The lawsuit maintains that the student is the prevailing party and thus asks for attorney's fees from the school board. The lawsuit charges the board and each of the defendants individually with violation of the student's civil rights by failing to properly notify the parents that the student's eligibility under Section 504 would be reviewed at the January 2004 meeting. It further says that "a reasonable official in the position of any of the individual defendants would understand that what he or she was doing violated that right."

The chairman of the Board of Education, Mary Parmelee, said that on the advice of the board's attorney, she could not comment on any litigation. A phone call on Tuesday to Landon was not returned.

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I make sure to label my containers of butter, jelly and such. I just use a magic marker and put my name on them or something silly like "NO GLUTEN ALLOWED". At my parents house I also get one of the drawers in the fridge to put "my stuff" so it doesn't get mixed up with everyone elses.

-Jessica