Lisa

Yes, thanks for the link! But about Raleigh/Durham/Chapel Hill groups--I find no active groups online. I am hoping to hook up with a gourmet celiac group, or a group who enjoys eating out together once a month or so.

Thank you,

C.T.

We have lots of folks from the Raleigh-Cary-Durham area. Maybe you can start a new thread about a gourmet cooking/dinner group. I might even drive the way.

Hello I have just joined this site today not sure why really, Ithink just looking for someone who may be feeling a bit like me . I have 3 Children 6,5and 1 all who have celiac and two who have been diganosed with refactory sprue. My 5 year old has been nil by mouth for a whole year now and been tube fed and on several medicines, and my six year old was diganosed on Thursday , so at the moment feeling realy fed up and not sure how to cope with it all !!!!!!!!

Hello mum,

Welcome to the site. We have some really good people here who kindly share their experiences to help others. Glad to have you join us.

I noticed you posts on other threads regarding refractory sprue. I really don't know too much about that. You children seen very young to receive such a diagnosis like that.

I am sure that you are going through a difficult time. I hope you find some comfort here.

I would contact the company and inquire about their gluten status. Or, don't eat the ham anymore.

Tomato pudding?

Yup, it's a southern thing

Pam a corning ware dish

Three cans of Hunts Diced Tomatoes with juice

Three large hand fulls of gluten free croutons

Season with Italian Seasonings, Garlic Salt, Pepper and Sugar

Mix well and pour into oven suitable dish

Bake until bubbly and no longer runny

It should be a little on the sweet side. I add a little crushed red pepper too.

This is great information:

BEYOND RICE CAKES

A Celiac Pill: Alba Calls for Participants to Test Effectiveness of AT-1001

By Vanessa Maltin

NFCA Director of Outreach & Programming

Do you dream about being able to eat pizza, pasta, cookies, cake and all of your favorite gluten-containing products again? The first year after being diagnosed with celiac disease, I remember wandering up and down the aisles of the grocery store just wishing I could buy the same old products as before I had to be on a gluten-free diet. They were cheaper, tasted better and were easier to find. Even though I've been gluten-free for over four years and am a pro at managing my lifestyle, I still find myself having moments where I wish I weren't on the diet...especially those times when I am inadvertently exposed to gluten.

Over the last year, the National Foundation for Celiac Awareness has surveyed thousands of celiac disease patients about items that are important to them in order to determine what new developments would make their gluten-free lifestyle easier to manage. As I'm sure you can guess, the most common response was: a pill that would allow the body to safely digest gluten.

For most of us with celiac disease, a pill would represent a dream come true. At this time, there are no drugs in the pipeline to allow patients to eat a normal gluten-containing diet. However, a dynamic group of researchers at Baltimore-based Alba Therapeutics have developed a pill that is expected to protect celiac patients against a small amount of gluten. How much you ask? Only about 2.5 grams, which is equal to roughly one slice of bread. Essentially, it will protect against inadvertent cross-contamination.

Right now Alba Therapeutics is recruiting participants for a Phase II clinical trial of AT-1001. The study is examining three doses of the drug for efficacy and safety for treating celiac disease. The goal of the study is to show that AT-1001 can prevent intestinal damage when a patient undergoes a six-week gluten-challenge.

BUT...just because you're on the drug while participating in the study, doesn't mean you can eat all of the gluten you want for six weeks! The researchers will provide you with a kit that contains gluten capsules for you to swallow. This allows the researchers to control the exact amount of gluten intake and determine appropriate dosages of AT-1001.

Are you confused? The first time I heard all of this, I was, so lets take a step back and understand the basic science.

The Science of Celiac:

Before you can understand what goes wrong in celiac patients, you have to understand the normal digestion process. When a healthy person eats food, it travels to the small intestines where it is absorbed into cells and broken down. Once the food particles are processed in the small intestine cells, the cells release the nutrients into the blood stream where they are absorbed and used by the body to function. However, between the cells we have what are known as "tight junctions" These are actually dynamic gates that open and close. When a person with celiac disease eats gluten, the food travels into the small intestines, but accidentally slips past the cells through the gates. We commonly call this "leaky gut" syndrome because the gut is leaking out the gluten protein before it has a chance to be processed and digested. This is toxic for a person with celiac disease.

When the gluten particles leak through these gates, they directly enter the gut wall. In celiac patients, this causes an immune system response, which produces antibodies. (NOTE: These antibodies are what are measured when a patient has a celiac blood test, and are called anti-tissue transglutaminase or anti-tTG.)

How can AT-1001 Help?

Last week I spent the day with Alba's Senior Vice President for Clinical Development and Medical Affairs Dr. Betsy Van Parijs. She very eloquently explained the theory of how this investigational drug works and helped convince me that data so far have shown that the drug is well-tolerated in celiac patients.

AT-1001 is a peptide, which means that it consists of natural amino acids that are protein fragments). When you ingest it, the gut sees it as if it was a natural matter and breaks it down. This means that it gets broken down rather than absorbed into the gut wall. This is good news and explains why there have been no reported serious or severe side effects of the drug.

AT-1001 works like a topical ointment in the gut that coats the inside of a patient's small intestine lining. This prevents a small amount of gluten from passing through the "leaky gates" and prevents the gluten toxins from entering the gut wall.

Why Can't You Eat All the Gluten In the World?

Even while taking AT-1001, patients can only eat 2.5 grams milligrams of gluten per day. According to Dr. Van Parijs, celiac patients might never be able to eat a piece of pizza or a plate of glutinous pasta, largely because scientists can't change genetics. All they can do is try to control the effects.

Try thinking of it in terms of high cholesterol. Patients with high cholesterol are commonly prescribed a drug called Lipitor. They are told to take the drug in conjunction with a low-fat diet and exercise. Lipitor helps reduce the cholesterol, but can't control it without the added change in diet and exercise.

So, for celiac patients, the same theory applies. AT-1001 will help digest a SMALL amount of gluten—about the amount in accidental cross contamination, but in order to remain healthy, you must still attempt to adhere to a gluten-free diet.

The bottom line is that if AT-1001 works as Alba expects it to, the drug will help prevent long-term complications for sure and provide short-term relief if you accidentally consume gluten. However, the clinical trials to investigate this and other effects of AT-1001 are ongoing, and no conclusions about the therapeutic effects of the drug can be made in advance of the results of the trials

What Does the Clinical Trial Involve?

Alba is looking for biopsy-confirmed celiac disease patients to participate in a phase II clinical trial to test the effectiveness of AT-1001. To participate in the study, patients must be 18-72 years old, diagnosed with celiac disease for more than six months and have been on a strict gluten-free diet for at least six months. In addition, patients must have a negative anti-tissue transglutaminase (anti-tTG) test.

If you visit a study site, you will speak with a nurse who will walk you through the process of the trial. The nurse will explain that you will need to submit a urine sample and undergo other types of testing during the six-week study. You will be asked to sign a consent form.

Once you've given your consent to participate in the study, you will have a screening visit to be physically examined. All of your vital signs will be checked and then the blood test for anti-tTG will be done, and the biopsy report from a previous exam will be reviewed. If all of your test results are within the acceptable ranges, you will be enrolled in the study.

At this point you will be given a kit that contains either AT-1001 or the placebo. It is a double blind, randomized study, so you will not know which kit you have. You will also receive tablets that contain gluten. You will be instructed to take both the study drug and gluten pills three times per day, one pill approximately 15 minutes before you eat a meal and two pills along with your meal.

Once you begin taking the drugs, you will need to return to the clinic for further testing and procedures and fill out daily diary on an electronic device like a PDA monitoring how many pills you take each day and if you experience any form of discomfort.

The entire duration of treatment for the study is six weeks. After the six week period, you will return to the study clinic one week later for follow-up to determine if you had any unforeseen side effects.

Are there Dangers to Participating?

The AT-1001 study does involve a placebo group. This means that it is completely random whether you receive the active medication or a placebo pill. Both patient groups ingest gluten tablets, but according to Dr. Van Parijs, the risk of long-term complications is low, because the amount of gluten is so small and it is for a very short period of time compared to a lifetime of ingesting gluten.

She cites supportive medical literature suggesting that ingesting 2.5 grams of gluten per day "over a period of six weeks is not sufficient enough to cause long-term damage." She notes that it will produce mild or moderate side effects such as diarrhea, constipation or bloating related to gluten ingestion, but generally "not to an intolerable degree."

Dr. Van Parijs says the researchers at Alba think daily about the Hippocratic oath they took to become doctors and can say confidently that they are "not harming our patients " by asking them to eat gluten during the study. However, as in all clinical trials, there may be unforeseen side effects. Please seek additional information about potential risks before participating.

How to Participate in the Trial:

To participate in the trial, you must be:

Age between 18 and 72 years

Diagnosed with celiac disease for more than 6 months

Negative anti-tissue Transglutaminase

On a gluten-free diet for at least six months

BMI between 18.5 and 38

Exclusion criteria—You may NOT participate if you are any of the following:

Current smoker

Has chronic active GI disease other than celiac disease (ex. Crohn's, Colitis)

Has Diabetes

Unable to abstain from alcohol consumption for 48 hours prior to each intestinal permeability collection

Unable to refrain from consuming non-steroidal anti-inflammatory agents for 48 hours prior to intestinal permeability collection

Participated in any clinical drug study within the past 30 days or has had previous exposure to AT-1001

Presents with or has a history of dermatitis herpetiformis.

If you are interested in participating, please contact: clintrials@albatherapeutics.com or call Alba Therapeutics directly at 1-877-415-3282. There are currently 23 study locations nationwide.

One last note...

The work that Alba is doing is absolutely fascinating, so take a few minutes to watch our interview with Dr. Van Parijs and listen to all she has to stay about the drug and the study. Then take a look at their website for even more information! www.albatherapeutics.com.

Something has happened quite suddenly, and it's quite maddening not knowing how to fix it. I immediately tried hitting the "standard" button, but even this isn't fixing things. When I am composing a reply or a new post, the font is suddenly quite small (probably a "1"). I cannot change the font size....when I try to change to 2, I get the square brackets with "2". The emoticons are written in text, and I cannot underline or italicize anything. I get "i" in square brackets, and "u" in square brackets. I've obviously hit something that's put a new setting in. Anybody know how I did this?

Emily,

As you know, you most likely will have to wait for Peter or Tom. I am of no help, sorry.

Jiff Peanut Better - individuals w/ carrot sticks

Hiddden Valley Ranch - individuals w/carrots or celery

Jello - individuals

Pepperoni snacks

Peanuts, almonds, home made trail mix

...just of few off hand.

Help!

I am looking for a potato casserole that has a little different twist, rather than the standard.

I am serving: (25 people)

Various types of sausages: Boars Head, Emeriles, Hillshire Farms

Potato casserole

Tomato Pudding

Seven Layered Salad

Corn Bread

Pamela's Chocolate Cake

Hey Jess,

I believe the answer to #4 of Your Royal Decree IS......"Paint Your Wagon".

Between his second visit to Widowdom, my father used to date Tina Louise's (Ginger) mother. Hum, we could have been stepsisters - perish the thought .

OK, I'm confused here,,,,,,,,,I have a bottle of honey mustard and the one ingredient that I don't know anything about is mustard flour. Is this a BAD ingredient? The other bottle says mustard seeds...........I know I could try and contact the company but I thought someone here would have a quick answer. Thanks

Pam

'No problem as long as no gluten is listed.

when I was little and my mom made us go to church, we'd sneak in the back and steal the hosts. Does this mean I've probably eaten enough already that I could do without ever going to communion?

Ahhhh, but did you go to Confession before you chowed down? I think "stealing" the hosts eliminated the effects of each..

I am the only gluten-free person in the house. Right now we share pots/pans/cooking utensils/colanders. I have my own toaster and use a cutting board that is washed in the dishwasher. Everything is washed there really! Can gluten hang onto these utensils? How do I make my kitchen safe?

Hey Lori,

I too am the only gluten free person in the house. My daughter pops in for lunch many days and my husband loves his french bread. They are very careful of their crumbs and do the best they can for me. If my husband wants dinner, it is gluten free. My kitchen is 95% gluten free.

I have my own colander and I have no wooded spoons. Your pots and pans should have no scratches where gluten can hide. A good wash or run in the dishwasher seems to work well for me.

I also keep my rices, flours, pastas, etc in a Tupperware container and they stack in my pantry.

If I do have a "community" condiment (I try to get squeeze condiments), I put a dot-sticker on the jar and my family knows not to double dip. That's mostly for large jars of mayo that I use for salads.

Sounds like you are doing a great job so far.

Welcome,

This is a great place for your questions.

The Celiac Blood Panel is not 100%, so don't rule out Celiac yet. If you daughters villi were flattened, that is a very clear indication of Celiac. It's classic. Nor, have I every heard that flattened villi can be caused by a virus.

There is no further testing for Celiac, other that what your daughter has had, except for the gluten free diet. Positive dietary response is a diagnosis in itself.

I see no reason to delay the diet. She can be relieved of that pain within a few days or weeks.

This site is full of information and some great, knowledgeable people.

Great movie, but unfortunately, I was about your age when I saw it last. You should have lots of information and it's easy to have an opinion.

For those who have not seen it:

Open Original Shared Link

I am a former Open Original Shared Link. That church was totally unreasonable in it's wheat demands on the congregation.

I'm another Raleigh-ite

Momma Goose, we had some friends that used to live in Edenton. It's beautiful there. I grew up in southeastern VA, Suffolk. It's about a hour to Edenton (if I remember) and about an hour and a half to the OBX. I miss being so close to the ocean...

Liz

Yup, that would be us. PM me about your friends, perhaps we know them. Raleigh really is a small town, you know. We send our kids to go to school there and they never want to leave. Well, some appreciate "home".

Date: Mon, 21 Jan 2008 21:15:28 +0000

RE: Quaker Snacks , REF.# 026347729A

Lisa:

We understand your desire for products which are gluten free. We feel it is

important for you to know that we cannot guarantee any of our grain products,

including Quaker Rice Cakes, to be gluten free. Even though gluten is not

present in any of the ingredients, the grains in this product could be grown,

harvested, or stored with other gluten-containing grains and thus may contain

trace amounts of gluten from those other grains. It may seem minor, but many

individuals sensitive to gluten cannot tolerate even small amounts.

We're sorry that we could not be more helpful to you, Lisa. Your interest in our

products is appreciated.

Jennifer

Quaker Consumer

....HOT off the press. Sounds like it may be trial and error and an indiviual choice.

Yes, I'm all for keeping traditions but COME THE &^%$ ON times are changing and we need to adjust to it. If people are allergic, find a replacement, it's NOT brain surgery!!! Sometimes we have to tweek things. People are so terrified of change, get over it!

Yes, it's a very holy tradition but denying people communion because they are allergic!? ARE WE HEARING OURSELVES!??!!? You are saying to kids "you can't have this and you aren't normal or holy cause you are allergic to gluten and are diseased!"

Here is my big question;

If you are a recovering alcoholic and your church serves wine, do you drink the wine or is there another option.....say grape juice?!

And for the person who said that this has been discussed over and over....get over yourself! it happens all the time on these boards! Like the topic of what kind of flour to use or what do you feel when you get glutened? But just because it's about church we can't discuss it over and over? are you hearing yourself?

Yes, I know I'm "offending" people but for crying out loud this is retarded!

THIS MEDIA ATTENTION IS GREAT GREAT GREAT FOR US!!! (yes, also bugs me that they call it rare....have you been to the grocery store lately? there is gluten-free pasta at most of them now....I don't call that rare...it's as rare as a lactos intollerant thing!)

HOLY COW, melrob, don't hold back or anything.

I was recently told that I have Celiac Disease and was wondering if you know of any Support Groups in Hendersonville, NC. Thanks

Hey Kwatts,

You are in the northwestern part of the state. I used to live about 20 minutes south of Hendersonville and loved the Fresh Market. Now, I live on the eastern part of the state.

I have included a list of support people in your area. They can direct you to where to shop and dine:

Open Original Shared Link

On Celiac.com, you will not find better experts and kinder people to help you walk through your journey with Celiac. We are glad that you have joined us.

If you have any questions, and I am sure that you have millions, please feel comfortable to ask. That's what we are here for.

I believe *marinewife* is in the Fayetteville area and is also new to this site.

Here are some support contacts for your area for the Celiac Disease Foundation:

Open Original Shared Link ....Aaron is in your area.

Possibly, but have you considered that you might be feeling another intolerance such as dairy or soy. It may be temporary.

I have had the crumbly issue with GFP Scone Mix. I add vanilla yogurt, cranraisens and sugar. The taste is good, but it won't hold together.

Now, Pamela's cake mixes and brownies are wonderful. The Chocolate Cake Mix is to die for. You can make it dense and more torte-like, which we love. My husband swears it's better than any Duncan Hines or Pillsbury mix.

Trust me, they have come a LONG way in a few short years to improve gluten free mixes. I am pleased.

*

Once you remove gluten from your diet, sometimes you find other food issues. After about six months into the diet, I developed a temporary issue with dairy. In your case, it may have been the sour cream in the chips that caused you discomfort.

I don't think that they can be separated at this point. A moderator must have assumed that it was a duplicate post or too similar in content. Sorry for the inconvenience.