ENF

I enjoy BOAR'S HEAD Lite Skinless Beef Frankfurters. The package says, "DAIRY FREE GLUTEN FREE" on it.

Traficet-EN, by ChemoCentryx, was intended for Irritable Bowl Disease, Crohn's disease and ulcerative colitis, but is also being tested on Celiac Disease patients.

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It's great that there are several companies working on products that may help with problems associated with Celiac Disease. The more information we have, the better.

My Walmart gave me generic Zanax for $4, which happened to be Alprazolam from Mylan.

best regards, lm

There are no Walmarts in New York City at this time, but I made some calls today and found that a CVS in my area has the Mylan Alprozolam, so as soon as I get the Rx that's where I'm going to have it filled.

Thanks

Xanax does have a gluten free form. You just have to call the pharmacutical labs and check for the gluten free status of the drug. I finally found a generic Xanax (Alprazolam) made by Mylan Labs, which is gluten free. I did make many calls until I found it. Then, of course, you have to call the pharmacies to find one that carries this generic, but it can be done. NEVER SAY NEVER! An associate at Mylan Labs told me that most of their meds are gluten free, but to always call and make sure. I have had to use my Xanax 3 times this year and have never had a bad side effect from it--finally, I do not react to my Xanax and I am so happy about that.

I have taken it once for a glutening, and the other 2 times for panic. I have been very stressed at work as of late. Try to find a pharmacy that carries the Mylan brand of Xanax (Alprazolam).

Hi Deb,

I switched from Xanax (due to gluten issue) to Klonopin six months ago, but would rather have Mylan alprozolam. I was planning on calling the local pharmacies to see if it is avalable (some Walgreens and CVS stores carry it), but I wondered if you may know of one in the NYC area that carries Mylan's generic version.

Thanks!

I would think that it is too difficult to remain gluten free with a job that requires a lot of travel. I know I couldn't handle it. I have a friend with Celiac who gave up a position as a music educator/performer because it required frequent travel. He loved the work, and the travel, but couldn't handle the diet while globe-trotting. At least there are companies working on testing drugs that may be able to help with cross contamination. Good luck, whatever you decide to do.

It's looking encouraging, but no date yet on when it will become approved and available.

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April 24, 2008

Washington State University researcher receives NIH grant to develop wheat free of harmful gluten proteins

PULLMAN, WA - Washington State University researcher Diter von Wettstein has been awarded a four-year, $837,000 grant from the National Institutes of Health to further his work on developing wheat varieties safe to eat for people who have Celiac disease.

Rest of article here:

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Thanks for responding guys! Im actually in Australia...so cant get to New York unfortuntley! :-)

One the Celiac community's most respected experts, Peter H.R. Green, M.D., director of the Celiac Disease Center at Columbia University, in New York City, is from Australia.

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Here are some more links for information and help in Austraila:

https://www.celiac.com/articles/230/1/Australia/Page1.html

Good luck.

Hello,

I was diagnosed almost 9 months ago. In spite of major effort, I am still having "glutening" episodes... I just returned from Florida and am really really sick with stomach pain after eating out (supposedly off a gluten free menu) I was wondering if/when a repeat endoscopy should be done...

DMS

Dr. Peter Green, in his book, CELIAC DISEASE - A HIDDEN EPIDEMIC, recommends a followup endoscopy in 2-3 years after diagnosis, but in cases where the diet isn't working it should be done sooner, or more frequently. There is much more information in the book. Good luck.

Oberlander's Chocolate Roll is delicous. This is a kosher for passover product that is gluten free. Kind of high in Cholesterol due to the eggs, I guess, but worth it once a year.

http://www.aviglatt.com/DisplayImage.asp?i...LS3208974%2Ejpg

Has anyone seen Dr. De Felice?? I just made an appointment with her to have my 2 yr old daughter diagnosed for celiac disease. We live in Mexico and are willing to go wherever we have to in order to see a GOOD Dr. so if u have any suggestions or comments i would very much appreciate it.

As a note.....I made the appointment with her because I was originally interested in seeing Dr. Peter Green but since he doesn't see Pediatrics they told me to contact Dr. Felice.

All i want is a good doctor who really really knows about celiac disease.

Thanks!!

I have been to the Columbia Celiac Center in New York, to see Dr. Lee, and the resident Celiac nutritionist. I also had all blood tests and an endoscope at the facility - my second time for Celiac, but the first time at Columbia. There was an improvement in my blood tests, but still some damage in to the villi. It is not unusual for adults to heal slower. I had the bone density scans done there as well.

I know that you have been looking for a doctor for your daughter, and I thought I read in another post that she has been gluten free for a few months. This could cause the tests to be negative. If she's already been diagnosed by blood test and/or endoscopy before going gluten free, and tested positive, then you can see if she has improved - but if this is the first time being tested she must consume gluten for a specified time beforehand in order to insure an accurate diagnosis. Children tend to heal fast, which could cause a false negative.

Just thought I'd let you know, in case you were not aware of it.

We picked up a box of Leaf Cookies, by Shabtai Gourmet. They are Gluten, Lactose, Casein, Soy and Dairy Free. This is a seasonal Kosher for Passover item. They're chocolate leaf cookies, like the old style, but crispier due to being gluten-free. They are delicous. They also make a number of other Gluten free treats, including Chocolate Chip Cookies, Brownies, Swiss Chocolate Roll, Lady Fingers, and more. Unfortunatly, I don't see the Leaf Cookies online. We got them in a local store.

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This site has some of their products:

<a href="Open Original Shared Link Advertisement/Gluten-Free-Chocolate-Chip-Cookies/dp/B00108PBRS/ref=pd_bbs_3?ie=UTF8&s=hpc&qid=1207721442&sr=1-3" target="external ugc nofollow">Open Original Shared Link Advertisement/Gluten-Free-Chocolat...1442&sr=1-3</a>

They're also on Amazon (go directly to Amazon site if link does not work):

<a href="Open Original Shared Link Advertisement/Gluten-Free-Chocolate-Chip-Cookies/dp/B00108PBRS/ref=pd_bbs_3?ie=UTF8&s=hpc&qid=1207721442&sr=1-3" target="external ugc nofollow">Open Original Shared Link Advertisement/Gluten-Free-Chocolat...1442&sr=1-3</a>

A review

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This is a new website that has resources for easier gluten-free travel planning, including reviews:

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From what I understand, 5 htp can give some the big "d". You don't want to have celiac "d" and complicate it with 5 htp "d". If you are not experiencing "d" from 5 htp, you should be OK. I was told when we started it to reduce the dose if the "d" hit.

Thank you, that is very reassuring. I don't get the "Big D" very often anymore - and my health has improved immensly since being diagnosed and going gluten-free three years ago. So, I am going to reduce the 5-HTP dosages a bit, and take it with meals from now on. I was previously taking it between meals, before I knew about it's potential side effects. It's also possible that I was taking too large a dosage.

I suspect that the warnings regarding 5-HTP are mostly addressing people with Celiac that have not healed enough, and would be overly sensitive to it.

I have noticed that 5-HTP, which I take daily, is not recommended by some manufacturers for people with gut problems, including Celiac. My intestinal problems are much, much milder than before going gluten-free, even with taking 5-HtP. I am hesitant to stop using it, because I'm afraid that I'll have to go back on anti-depressants.

The label on Nature's Way 5-HTP says, "Those suffering from gut disorders such as ulcers, irritable bowel disease, Crohn's disease, celiac disease, etc., should not use 5-HTP." Other manufacturers advise Celiacs to seek medical advice before comsuming it.

Has anybody found 5-HTP to be a problem? I don't have severe reactions from it, but I am considering stopping it, or lowering the dosage, just for a while to see if there is any improvement. I am willing to put up with mild discomfort if necessary, as long as there is no lasting damage.

Thank you to the three replys.

I really think that the DNA test would give great insight and think I will contact him about adding that test.

Thank you for any further insight.

I have both celiac genes. I got the test a year after diagnosis by endocopy and blood tests.

I believe that most people who have celiac DNA do not have active celiac disease, as in noticable or measurable symptoms. It's interesting to know whether you have a genetic factor, but remember that it's not ironclad proof that your symptoms are due to celiac. Many people that have gluten sensitive genetic factors have worse symptoms than some people with celiac genetics.

We have the Panasonic NB-G100P Toaster Oven. After almost three years of daily use it's still going strong. It's an excellent choice if you frequently use store-bought frozen gluten-free bread, since slices that are frozen together come apart easily after a couple of minutes or less, and toast very nicely after five minutes more. It's also very good for small frozen pizzas, and other things.

I just sent the following Email to a company called Mediterranean Delights, which is located in Vermont, regarding their Baba Ganouj. The ingredient list on their package top lists: Freshly Cooked Chickpeas, Sesame Tahini, Sulfite-free Lemon Juice, Roasted Eggplant, Spices, Sea Salt, Citric Acid (to preserve freshness). To my complete surprise, it also contains wheat and soy - but they were listed on the side of the package.

Yesterday, I purchased your Baba Ganouj at my local Frontier Market. I have celiac disease and cannot consume gluten, which is in wheat, rye and barley. The ingredients on the package top did not list any gluten-containing substances. When I came home, as I was opening the container, I saw that there was a notice on the side of the container saying that the product "Contains Soy and Wheat".

Since I cannot eat this, and I already started opening it, it will go to waste. While I consider myself very lucky to have found out that the item contains wheat before ingesting any, and becoming sick, I am still disappointed that I wasted over three dollars on something that I can't eat.

I would recommend that the notice of common allergens be placed closer to the ingredient list, so as to make it easier for consumers such as myself to read it in the store and not throw their money away, not to mention the risk to their health. Thank you.

Not that I would wish celiac disease on anyone, BUT I do wonder what would happen if the Pope was diagnosed with celiac disease....

If the pope was diagnosed with Celiac, you can be sure of one thing: It would remain a secret.

I'm Irish (from the North) on my mother's side, and South African (of British and Russion decent) on my father's side.

I've heard there's also a lot of celiacs in Finland. Something to do with pale skin?

The reason that there are so many celiacs from Finland and Northern Ireland may be because these areas were not introduced to Roman grain until recent times.

I have a Senseo machine, but I became suspicous of the glue on the pods and stopped using them. I bought a refillable coffee holder, called Mypod, designed for Senseo machines, which allows the use of any ground coffee and eliminates the need for the Pods. It's cheaper than using pods, but a bit less convenient.

I am a dentist and I ended up on this website because I was doing some research on Celiac disease after one of my patients told me that she has it..............I hope this answers some of your questions.

Regards,

Dr. S.

Thank you very much for the information that you have provided, Dr. S.

Before I was aware of celiac, and still consuming gluten, I had an incident, after an extraction, of tissue filling in the space. This totally confounded the dentist, and he asked me if I was on some kind of "crazy" diet. I was sent for oral surgery, and given a Rx for vitamin A. Besides that, I have had three bridges, several crowns, numerous root canals, discolored enamel spots, receded gums and infections. Since going gluten free, 3 1/2 years ago, I have not had a single new cavity, but got a long-standing infection, in a root-canal, fixed by extraction after several attempts by my Dentist and Endodontist to avoid this meaure.

It's very encouraging to the celiac community when doctors and other medical professionals take an interest in our problem. Your input, and commitment to providing the correct treatments for patients with celiac, is extremely valuable and very much appreciated on this forum.

In New York City, there is the Weill Medical College of Cornell University, Department of Neurology and Neuroscience, Peripheral Neuropathy Center, 635 Madison Avenue 4th Floor, New York, NY 10022, USA, (212) 888-8516

Several of the neurologists at this location specialize in Celiac, and have written medical papers about it. They have collaborated with Dr. Peter H.R. Green, of The Celiac Center at Columbia University.

The days of neurologists not being familiar with Celiac Disease will soon be over. There is a lot of research, regarding the links between Celiac and Neurological problems, being done by the doctors at the Center. Here is an older article from a few years ago summarizing a presenation to the Westchester Celiac Support Group, by the Director of the Peripheral Neuropathy Center, Dr. Norman Latov: Open Original Shared Link

I am doubtful about the accuracy of gluten free drug lists. At least one of them (referenced in a post above), Open Original Shared Link, still has Xanax listed as gluten free - which is wrong.

Alba Therapeutics Corporation and Shire plc Enter Into $325 Million ex-US, ex-Japan Licensing Agreement to Develop and Commercialize AT-1001

December 14, 2007: 10:37 AM EST

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