ENF

Alba Therapeutics has announced that they have dosed it's first patient in a six week Phase IIb trial with oral AT-1001. See the Wed., Sept. 19, 2007 item:

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The link below, from the story on the original thread, has an email for comments.

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I don't know if this is a typo, sarcasm, a double negative, a British type of wording that is unfamiliar to an American reader, or something else in her writing style that I am not getting:

You may be cutting out something you don't need to which might be putting your nutritional health and your longer term health at risk

Tanya Haffner

Nutritionist

How can you put yourself at risk by eliminating something you don't need?

How this for some dangerous misinformation, confusion, and (at the bottom) reactionary responses?

BBC NEWS

Tuesday, 18 September 2007

Many 'imagine' food intolerance

Millions of people in the UK have self-diagnosed a food intolerance and may be avoiding key foods as a result, a poll by a testing firm suggests.

Less than a quarter of the 12m people who claim to be food intolerant have had their condition formally diagnosed.

While many of the nine million who also claim to be intolerant may well be so, it is suggested they may just be fussy.

Nearly 40% of the 1,500 people polled by Yorktest thought it trendy to be intolerant and many blamed celebrities.

Actress Rachel Weisz for instance has a well-publicised wheat intolerance, TV presenter Carol Vorderman a gluten one, and Rod Stewart's former wife, Rachel Hunter, a lactose intolerance.

Vague symptoms

The range of foods people declared themselves intolerant of was diverse, but grapefruit and sushi were declared by those polled to be key culprits.

You may be cutting out something you don't need to which might be putting your nutritional health and your longer term health at risk

Tanya Haffner

Nutritionist

Food intolerances are not as severe as food allergies, which in severe cases can prevent people from breathing properly.

But symptoms can nonetheless be uncomfortable, ranging from a stuffy nose to aching joints and nausea.

However the wide variety of complaints which people pin on food intolerances could be related to a number of other conditions.

Nutritionist Tanya Haffner said it was important to seek the advice of a qualified medical practitioner.

"You may be cutting out something you don't need to which might be putting your nutritional health and your longer term health at risk," she says.

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This is one website's response to the story:

All you bonkers people who say you're like "allergic to wheat" and gluten and dairy or whatever? 75% of you are LIARS who have never asked a doctor about your so-called allergy, says a new U.K. survey. So stop coming over with your tempeh and your rice flour already, because I'm going to stuff a piece of bread slathered in butter down your throat.

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I suffered at the hands of our system by being prescribed xanax for 10 years to lessen the anxiety "internal alarm" of my body trying to tell me something of which was numbed by the doctors.

All I ever needed during the period of withdrawal from the above mentioned products was L-Theanine (amino acid) to take the edge off the xanax and abort any issue of loss that I may encounter based upon the many posts read here.

Great news!

The big job now is getting the word out and reaching more people that suffer from celiac, and other disorders caused by gluten.

If you have the means and you wanted to go to the best, the Dr. Peter Green is the doctor to go to. I know from reading on here he doesn't take medicare (I am Canadian so I don't know much about your American system, except the words Medicare and HMO's etc.) but he is by far the best of the best in your country.

According to his "New York State Physician Profile", Dr. Green takes Medicaid and Medicare - but the website advises to check with the doctor's office to see if this information has changed. For the Profile, just key in his first and last name, and go to his "Practice Info".Open Original Shared Link

I also heard about Dr Green (I live in NYC) but he does not take my insurance and cant afford to go out of network

stinks, heard he is great. Anyone know anyone else in NYC who takes Oxford Liberty??

Have you asked Columbia if any of the doctors at the Celiac Center take Oxford Liberty?

But would any damage show up if I'm not producing the antibodies? Apparently the blood tests came back negative, in spite of what my family doctor originally told me.

I don't know that I want to take the chance of going through all of that to possibly have nothing show up. It's a pretty invasive procedure. I

If you have been gluten-free for a while, and never had a blood test before, but do have Celiac, your blood tests do not have to be positive for the endoscopy and biopsy to show damage previously done by gluten. If your blood work was negative even while consuming gluten, it probably isn't worth doing a biopsy because you likely didn't get to the point of having any damage that would show up. There are also many cases of people with positive blood work, but negative biopsy results.

If you do decide to get one, the endoscopy is a very safe and easy procedure - I've had four of them in the last eight years without incident. Nothing was found the first time, probably because they were not looking for signs of celiac disease. After my positive antibody tests in 2005, I had a positive endoscopy/biopsy. Subsequent ones showed damage consistent with celiac, even 2 1/2 years after being gluten-free (with very few glutening accidents), but all of my followup blood tests have been negative since 2005. I'm not recommending that you get one, without reason, but it's not a big deal if you do. Several other people here that initially had reservations about it were quite surprised at how easy it was after having it.

Why can't you get an endocopy/biopsy without having gluten again, just to see if there is any damage? I've had endoscopies two years after going gluten-free, and there is still some evicence of damage, albeit much milder than the original tests showed. Doesn't it usually take adults at least a couple of years to heal? Anyway, good luck!

On Monday September 10, 2007, for the second year in a row the US Senate designated September 13, 2007 as National Celiac Disease Awareness Day

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110th CONGRESS

1ST SESSION

S. RES. 314

Designating September 13, 2007, as "National Celiac Disease Awareness Day"

IN THE SENATE OF THE UNITED STATES

September 10, 2007

Mr. INHOFE (for himself and Mr. Nelson of Nebraska) submitted the following resolution; which was considered and agreed to:

RESOLUTION

Designating September 13, 2007, as "National Celiac Disease Awareness Day"

Whereas celiac disease affects approximately 1 in every 130 people in the United States, for a total of 3,000,000 people;

Whereas the majority of people with celiac disease have yet to be diagnosed;

Whereas celiac disease is a chronic inflammatory disorder that is classified as both an autoimmune condition and a genetic condition;

Whereas celiac disease causes damage to the lining of the small intestine, which results in overall malnutrition;

Whereas, when a person with celiac disease consumes foods that contain certain protein fractions, that person suffers a cell-mediated immune response that damages the villi of the small intestine, interfering with the absorption of nutrients in food and the effectiveness of medications;

Whereas these problematic protein fractions are found in wheat, barley, rye, and oats, which are used to produce many foods, medications, and vitamins;

Whereas because celiac disease is a genetic disease, there is an increased incidence of celiac disease in families with a known history of celiac disease;

Whereas celiac disease is underdiagnosed because the symptoms can be attributed to other conditions and are easily overlooked by doctors and patients;

Whereas, as recently as 2000, the average person with celiac disease waited 11 years for a correct diagnosis;

Whereas 1/2 of all people with celiac disease do not show symptoms of the disease;

Whereas celiac disease is diagnosed by tests that measure the blood for abnormally high levels of the antibodies of immunoglobulin A, anti-tissue transglutaminase, and IgA anti-endomysium antibodies;

Whereas celiac disease can only be treated by implementing a diet free of wheat, barley, rye, and oats, often called a ``gluten-free diet'';

Whereas a delay in the diagnosis of celiac disease can result in damage to the small intestine, which leads to an increased risk for malnutrition, anemia, lymphoma, adenocarcinoma, osteoporosis, miscarriage, congenital malformation, short stature, and disorders of skin and other organs;

Whereas celiac disease is linked to many autoimmune disorders, including thyroid disease, systemic lupus erythematosus, type 1 diabetes, liver disease, collagen vascular disease, rheumatoid arthritis, and Sjogren's syndrome;

Whereas the connection between celiac disease and diet was first established by Dr. Samuel Gee, who wrote, ``if the patient can be cured at all, it must be by means of diet'';

Whereas Dr. Samuel Gee was born on September 13, 1839; and

Whereas the Senate is an institution that can raise awareness in the general public and the medical community of celiac disease: Now, therefore, be it

Resolved, That the Senate--

(1) designates September 13, 2007, as ``National Celiac Disease Awareness Day'';

(2) recognizes that all people of the United States should become more informed and aware of celiac disease;

(3) calls upon the people of the United States to observe the date with appropriate ceremonies and activities; and

(4) respectfully requests the Secretary of the Senate to transmit a copy of this resolution to the Celiac Sprue Association, the American Celiac Society, the Celiac Disease Foundation, the Gluten Intolerance Group of North America, and the Oklahoma Celiac Support Group No. 5 of the Celiac Sprue Association.

I'm OK with Lara's Creamhill oats for the most part, but they do cause a major cleaning out of my digestive system. The reaction isn't exactly the same as when I had problematic celiac digestive symptoms before going gluten-free - but makes me wonder if it's only because of the fiber in oats, which is one reason some people eat them, or if something else is going on, since I do not have a problem with C whether I eat oats or not.

Celiac article in the current edition of Newsweek:

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When you're first diagnosed, there is a substantial learning curve and there is much work, research, trial and error, etc. Villi damage usually takes at least several years to heal, for most adults, even under the best of circumstances.

Having a job 'on the road" is the worst job a person with celiac can have. I do not think that it's possible to travel to that extent, with Celiac, and avoid getting glutened. Unless you travel in a Winnebago with a kitchen, cross-contamination, or worse, in restaurants is inevitable. Even in restaurants that are gluten aware, mistakes can happen.

You have to take care of your health, and to have a long healthy life, I would strongly advise that you consider changing careers - unless you somehow can prepare and carry your own food.

We have enough trouble planning an annual vacation in a hotel that has a room with a fully-equipped kitchen, near a large health food store or supermarket that carry gluten-free foods. Good luck.

Edit: Sorry to sound "negative" - but that's my honest opinion. Sometimes you have to make major life-changes, and if I had that job I'd get out.

........Is the only milk-type drink other than soy that's gluten-free the rice or almond milk?

We use DariFree, a healthy milk alternative which is made from potatoes.

There was a thread about gluten-free beer in Ireland, recently updated with a beer list by Davey, "Courtesy of The Irish Coeliac Society":

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Thanks, this helps greatly - I can take the list to the dentist on my next appointment, or before.

It's too late to do anything about the temporary glue, but it's important to know the status of the final cements.

I'm at the point where I don't want to deal with it in the dentist's office anymore.

I am having a new bridge procedure (my third one), and I've had to have a temporary bridge put in, taken out, and glued back in several times. The final bridge should be ready next Monday. Although they call it "permanent", they're not as I've had my original two replaced, albeit after 20 years.

I've already been though it with this dentist regarding celiac and teeth cleaning, but forgot to ask if the cement has gluten in it. To futher confuse things, the final glue is different than the temporary stuff.

I don't think I've gotten glutened, but since the final fitting is next Monday I wonder if I should ask about the cement. Once it's in, I'm wondering if glutened glue, if there is such a thing in dentistry, would affect us.

A new device -- video capsule enteroscopy (VCE) -- accurately detects intestinal atrophy in patients suspected to have celiac disease, according to a report in the American Journal of Gastroenterology.

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I've got my fingers crossed for Alba Therapeutics Corporation's AT-1001 study - it looks very promising. If all goes well, otherwise, I hope it doesn't take numerous years for them to obtain approval for marketing it.

I've been gluten-free for about 2 1/2 years, and had an endoscopy today, at a good local facility. I won't have the biopsy and bloodwork results for a few days, but they have a new policy of issuing the initial findings on the same day as the test(s). Here's the results:

* The esophagus appeared normal

* The gastroesophageal junction appeared normal

* The mucosa of the antrum appeared erythematous

* The pylorus appeared normal

* The duodenal bulb was mildly nodular, without mass lesions. The apex of the bulb was mildly edematous.

* The post bulbar duodenum was mildy atrophic appearing, and the plica circulares of the duodenum had some mild scalloping consistent with known history of Celiac disease.

It's not perfect but, according to the doctor, at least the damage is "mild", so I assume that there's been some improvement. Not realizing it had small amounts of gluten as an ingredient, I was taking Beano every day for a few months earlier this year, so that may have caused a recovery setback or slowdown.

The doctor said that overall, the results were good. I should be getting my bloodwork results and biopsy in about five days.

.

I know jury duty is a pain and all...but, I don't really see why unless you're really sick that you would want to "get out of it"...personally, if I can control my disease and am healed...some times if you call in advice they'll allow you to bring food in, a doctor's note might be good for this...but to have a doctor's note to get out of jury duty just because you're afraid you might have a D outburst and be embarassed...I don't really feel is right...we all complain that the justice system is failing and guilty people are walking the streets with us and our families...if we could do our part and help this change, I don't see why anyone would want to get out of that...maybe the justice system isn't the only one at fault here..

Sounds like you've been there and done that. How many times have you done jury duty? Were you completely healed when you served?

I went to a new, local gastroenterologist for the first time today, and asked him if he would be willing to write a medical excuse to get me out of jury duty the next time I'm called. He agreed. This is a great relief for me.

The last time I served, a few years ago, it was on a New York State grand jury. Although I was very sick, I was not yet aware of celiac, or that I had it. Fortunately, there were bathroom facilities in the court and time to use them. At that point, I was taking a lot of immodium and pepto bismol. In years past, prior to the grand jury service, I served on several criminal trials - but the digestive symptoms were not yet severe enough to incapacitate me. I would not want to sit on a jury today since I'm not fully recovered, the problem of eating, bathroom flare-ups, etc. Sitting on a trail would have been an extreme hardship during my worst period of Celiac, three years ago, before my diagnosis and dietary changes. I was lucky that I didn't have to serve on a case with regular jury duty during those times. Grand jury was bad enough.

My advice is to do as I did and discuss this with your doctor BEFORE you receive a notice. If he or she agrees that jury duty is not for you, and will support this in writing, then you're safe. If not, then seek another opinion.

As far as I'm concerned, I've done my part enough times and, celiac or not, I should be left alone. They can go pick on someone else for a change, because I'm through with it for good.

I just bought a bottle of Absolut Citron, which contains citrus fruits, and now I'm curious because I've read that some of their "flavored" products are not recommeded for people with gluten problems. I do not know if Citron is one that is not recommeded. It certainly doesn't seem that oranges, grapefruits, etc., would be harmful, and I can't see why gluten would be in it, or even a cross-contamination factor. They have been reported to say, "

As for those who like to "roll their own". Tops and Job are NOT gluten free. Rizla's are however, and can be purchased in most smoke shops or online. I exclusively use Rizlas now. I have gotten giant gluten belly bloat from using Tops and Job rolling papers, and then I verified what the paper and glue was made out of. Rizla's are a Uk company, but there is no wheat in their paper.

Hope that helps somebody

Thanks for the tip. I bought two packs of Rizla's yesterday: "red", and "green" (both the exact same materials just cut differently). I recently E-mailed Rizla, and Zig-Zag, to inquire about the content of their products, but have not recieved a reply. Most Rizla's are likely made from rice (Riz is French for rice). I have read that the glue on both these brands' papers is made of Arabic gum, which is fine.

There used to be rolling-paper made entirely from wheat-straw, but I haven't seen any in years. Others are made from Hemp, and Flax.

I also stated having Cream Hill Estates/Laras Rolled Oats just recently, twice or three times per week, and have had no problems. On the alternate days, for breakfast, I have Pocono Cream of Buckwheat. Eating the natural foods our great great grandparents ate is healthier than the processed stuff of today. I bet their oats were gluten-free, as well.