celiac3270

It's a magazine for celiac and then some other intolerances and allergies.

Open Original Shared Link

So when can we expect your first book?

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lol...not for a long time...if it even ends up happening, it takes about a year after I have a first draft to publish...so who knows?

Yes--that is an excellent tool to explain it to friends--I've used that analogy ALL the time to explain why one crumb can do so much damage. Thank you for your support ...I'll let you know how it goes.

  celiac3270,

Maybe it's time for you to write a book. From your perspective for other teenagers. As a parent of toddlers, I am not quite sure how to handle the teenage years on a gluten free diet. I am happy with the books I have bought, i.e. Danna Korn, but I have found your interaction on the board more helpful than the short stack of books I have on hand. How should kids deal with a "cookie flinger"?

Laura

Excellent idea . I MIGHT just do that. Not a complete reference book for every aspect of it--that would be an overwhelming task--but a Celiac for teens/kids thing. Thanks for the suggestion--I had been pondering that for awhile and your suggestion just might be the kick in the rear I need.

Laurel-- Danna Korn's most recent and thorough book is entitled "Wheat-Free, Worry Free." I own it and it is an excellent, thorough, well written book. Of all the celiac books available now I would recommend that one hands down. She also said she is working on another book.

To mandigirl-

Hey, I've been to Risotteria--the best gluten-free restaurant in NYC... Risotteria was trained by the GFRAP (Gluten-free restaurant awareness program). The GFRAP has many other restaurants certified as being trained to cook gluten-free:

Open Original Shared Link

Someone else mentioned Happy Happy Happy, a bakery not on this list, but one that serves gluten-free food, nonetheless: Open Original Shared Link

Not even 15, lol. My b-day is in late January.

Absolutely...this should have been taken extremely seriously. Here's a quote from the link in my signature for malrotation:

Malrotation and Volvulus

Symptoms of malrotation and volvulus may include vomiting, pain, a swollen abdomen, bloody or loose stools, rapid heart rate and breathing, little or no urine, and fever.

Malrotation occurs when the intestine or bowel does not fold or rotate properly in early fetal development.  Malrotated intestines may “flop” around since they are not properly attached to the abdomen wall.  This can result in the intestines twisting around one another.  This is called volvulus.  As this happens, the duodenum may be twisted shut which can induce vomiting with or without pain.  If the intestines twist further, they may compress the blood supply.  This can cause severe pain as the blood supply to the small intestine is cut off.  Sometimes, the twist relaxes and the pain resolves.  However, with each episode there is the chance that the blood vessel compression will last too long and the intestine will die.  Unfortunately, the entire small intestine is usually involved, with the exception of the top few inches and the lower half the colon.  When this much bowel is lost, most children require intravenous nutrition for the rest of their lives. 

Malrotation is diagnosed by having the child swallow barium.  It is important to track the barium as it travels through the first part of the small intestine to make sure the intestine passes correctly from right to left.  Sometimes barium enemas are used to see the location of the beginning of the colon.  Because malrotation can be a life-threatening emergency that most commonly occurs in childhood, pediatric radiologists are often more familiar with its subtle forms and more aggressive about watching barium long enough to make sure malrotation is not present.  For this reason, we recommend that studies done to evaluate vomiting in children be done by pediatric radiologists whenever possible. 

Malrotation is a medical emergency.  If volvulus is not present, i.e. the bowel is not blocked from twisting and the blood supply is not being compressed, surgical correction is usually done within a few days.  If vomiting is present and x-ray studies show that volvulus is present, surgical therapy should occur immediately.  The surgeon will untwist the bowel and try to determine if any bowel has died.  Once dead bowel is removed, the remaining intestine is attached to the back of the abdomen to prevent further volvulus.

Don't give up. Just think that if you're at the bottom, there's nowhere to go but up. It will get better--if he wouldn't stick by you in sickness, your ex-husband wasn't someone you would want in your life, anyway. You will get your health under control. When I was sick I thought about the future--like, if I keep getting sick like this for the rest of my life, how could I hold a job when I got older? Don't worry about that stuff right now--once your health is under control, you can get a job and everything will fall back into place.

I think it's been almost a month since I went gluten-free. I had a positive tissue transglutaminase antibody test, but a normal biopsy. So my GI sent me a letter saying he personally did not believe I have celiac disease, but that it wouldn't hurt to try the diet. I have been vigilant about avoiding gluten. However, my family doctor did a blood test last week and the tTG and IGA and other tests were all normal. He said that doesn't mean that I don't have it, since I did have the positive test before.

But besides those negative test results, I'm still sick as hell. I have severe diarrhea and abdominal pain & distention. I sleep all the time and feel dizzy. This diet is not working. So maybe the GI was right, and this is just garden-variety IBS. If that's the case, I can't do a thing about it and am considering suicide.

Any thoughts?

OK...

1) One month is not nearly enough to see results. Some people will feel better in one month, for some people it might take two, three, or four. But definitely do not give up after one.

2) While it may be that you just need more time on the diet to feel the effects, there are a number of other reasons why you might not be getting better: It could be that you are still ingesting gluten. Have you checked everything? All the food you eat, preparation (if you live with someone who eats gluten), make up (if you're female?), shampoo, toothpaste, etc. It could be that there's one more thing. I was gluten-free for one hellish year with no improvement--I actually got worse. My intestine had healed so they couldn't understand why I was still sick. Finally after a ton of testing, we discovered that I had another intestinal problem, malrotated intestines (which is rare--and occurs in infancy--I'm nearly 15 now). Surgery in February and I was fine. See? In my case I was gluten-free, but we have to remember that there are other possibilities besides celiac--just because you discovered a problem doesn't mean you discovered the only problem.

3) There is a 50/50 chance you have celiac in my opinion (me being only 15 and not a doctor, so don't take me TOO seriously). The tTG is a good test, but it can give false positives. However, if it is a true positive, it could just be that you have gluten intolerance that's not yet developed into celiac, so you don't have intestinal damage. You still need to follow a gluten-free diet if you have that. The tests should be normal or a little closer to normal if you've been following the diet and you have celiac...that is a sign that you're healing and following the diet, so that is not a bad thing at all.

4) Do not give up yet. I was REALLY sick for 14 full years and I wanted to die and just have it over. I would never have gone so far as to purposely do it, but I just wanted the pain to be gone... I hung in there and now I'm healthier than I've ever been before...I got through it. Don't give up.

-celiac3270

I finally got around to slowly perusing the most recent issue of Living Without and I was so disappointed when I go to page 58! That page, entitled "Read it" gave little reviews on five books, one of which was The Gluten-Free Bible. I was so disappointed that they, too, gave it a glowing review. I believe I would be allowed to post that little bit (right?), but if it's illegal or something, let me know and I'll take it down:

The Gluten-free Bible (Owl Books) is a welcome resource for those living with celiac disease. Author Jax Peters Lowell does a superb job revising and updating her classic 1995 guide, Against the Grain. The new tome is packed with information presented creatively. Lowell's positive slant and witty prose guarantee a fun read. This is an important book for both the newly diagnosed and the veterans who wish to broaden their knowledge of living well, gluten free.

Oh wow. Obviously, whoever wrote this didn't know enough about celiac to spot all the inaccuracies, in product status, contamination issues, etc. I'm not even going to start elaborating--I've done that in past posts...I was just disappointed that they, too, overlooked such issues. This book is NOT important for the newly diagnosed, because it presents them with wrong information that they believe just because it's in a book that all these people are praising. This book is NOT for veterans to learn more--because in my short two years of personal experience, multiple forums, discussions with experienced celiacs, reading of reliable celiac authors (such as Danna Korn), celiac conferences, etc. I feel that I have a better handle on many of the topics than she. What is so distressing about this is that the voices of the "veterans" and the common celiacs are not heard--the people who read the books don't get their word in--but the less knowledgeable praise the book in magazine, important people in celiac organizations praise a book they probably have not read in full, and even DOCTORS give it their stamp of approval-- which they aren't really qualified to give, being that their expertise is medical, not lifestyle-related. What does a doctor know (or care) about the status of Cheetos or Butterball turkies. And many doctors don't even know the logistics of cross-contamination.

I am open to the opinions of others on this and would be happy to hear what you think of it. Even if you do not subscribe to the magazine, I've provided you with the text... and if Jax reads this and gets angry as she did on someone's post on Delphi and on the Delphites negatively reviewing her review on Amazon, then I say to her that I have a right to my opinion, to express my opinion and share it, to protect others from the inaccuracies in the book, and don't have a hissy fit and post to the Listserv again because you're upset that some celiacs don't like your book--I feel that Danna Korn is the best celiac author and I like the way she writes, yet I have heard a few celiacs (a tiny minority, but a few, nonethelss) criticize her books or style of writing. You cannot write a universally accepted book, but not all books are created equally acceptable.

My rant is over.

That's so funny! They have another URL to the same site now: Open Original Shared Link ...I guess that they realized that so many customers couldn't spell it and therefore, couldn't get to the site......

Oh, of course! Sent...

Weird... well, I'll send it to you via e-mail and you'll see if you can open it.

It's great that you could enjoy pizza again! I'm really happy for you

Bette...your's didn't go through. I don't believe, though, that a correct e-mail address can have two at signs (@) in it. And is there a space between the Bette and the @ and then the @ and the subsequent B?

These are the most popular:

Open Original Shared Link

You can also buy them from the University of Chicago or from Melonie (head of the yahoo group, Silly Yaks, that puts out the gluten-free restaurant list).

Most people seem to get them from the first one, though I've seen a few with the Chicago ones. The difference... Maryland ones are: Making Tracks for Celiacs and then on the other side it says CFCR (meaning center for celiac research). The chicago ones say Gluten-Free, or something to the point like that, as do Melonie's.

Hi Donna! Thank you for sharing your experiences. I think I'll just take some of the cross-contamination issues I avoid at home (in my 1/2 gluten-free, 1/2 gluten kitchen). For food, though.......do I actually need to make a list of everything I can eat? Or would it make more sense to just give some suggestions for each meal that are mainstream and difficult to screw up on? I think I'll do that. Thank you for sharing your story!

Wow! new to me...thanks for sharing!!!

My nickname is anorexic Allix at my school. I can't stand it. I did a report on celiac disease for class and they still didn't believe me. Anorexic Allix. Wonderful.

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That's TERRIBLE! Who calls you that, the teachers or the kids? Well, kids I imagine...that's awful. They even know what you have and they won't believe you. Sorry to hear that--kids are mean.

That's awesome, lol

No, many health food store employees incorrectly think that spelt is gluten-free...it is a form of wheat, which is why they tasted so normal--they...well, basically, are!

I've tried the Ener-G pretzels also...very good, quite normal tasting, but certainly gluten-free.

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Unfortunately, no...

Hi,

Last year I went to this event in NYC--I also met Molly from this board (flagbabyds). The program is in New York City, and it's coming up pretty soon. It can't compare to the annual GIG seminar, but for a one day thing with something like 1/4 of the price tag, it's not bad at all...really fun and you will surely learn something new. I was skeptical when I went to my first conference last year...was worried of being let down and knowing everything (lol ) but it turned out I learned a lot. I don't really need to explain it, because I have links to do the talking.....

Schedule of events:

Open Original Shared Link

Registration:

Open Original Shared Link

My mom and I have already registered...if anyone else is going, I would be thrilled to meet you...so definitely let me know if you're going and give a rough physical description so I might be able to recognize you.....

The 4th annual Patient Education Day at the Celiac Disease Center at Columbia is coming up soon!

Saturday, September 10th

8:00 a.m. to 5:00 p.m.

Columbia University Medical Center

Hammer Building

701 West 168th Street, 4th Floor

New York, NY

Patient Education Day includes 19 educational sessions on adult and pediatric celiac disease, an extensive teen program, and children's activities throughout the day.

Complete program information and registration is available at www.celiacdiseasecenter.columbia.edu

For those of you not familiar with New York City, Columbia University Medical Center is located very near the George Washington Bridge. Driving there is easy, as the medical center is just a few blocks from Route 9A (Henry Hudson Parkway).

For further information, please contact Cynthia Beckman at the Celiac Disease Center, cb2280@columbia.edu

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(sorry to have to make so many stupid posts like this, but I want to make sure I don't skip anyone and this way people know that it should show up in their mailbox and if it doesn't, they can inquire about it...etc.

I would strongly recommend Chebe pizza (you can order the mixes at Open Original Shared Link (free shipping so it's cheaper than buying it in stores!). If you go to a manufacturers' site, such as Ener-G or Kinnikinnick (spelling?) they sell their products online. Then there are some sites that sell a combination, such as the gluten free mall (which Scott who runs this board also runs), as well as a collection of others. With the exception of Chebe mixes, I buy all of my specialty gluten-free food from the health food stores, Whole Foods, or Fairways, so I don't have great insight into that....

Oh, Foods by George makes a wonderful pizza (foodsbygeorge.com) --it's one of their newest items and comes already made and frozen. The negative is that it's about twice as expensive as Chebe, it can't be stored forever since it's already made, and it makes a pizza about half the size (you can get a normal-sized pizza pan for Chebe.

For bread, I feel that the only edible one and a phenomenal one at that is the one that Whole Foods makes in their gluten-free bakehouse. They have gluten-free products in Whole Foods stores in the southeast and most recently, the north east. You live in Kentucky, however, so that isn't YET an option. Months ago I would've recommended Ener-G or Kinnikinick (spelling again) but Whole Foods is ten times as good as either of the two...and after tasting this, it would be difficult to go back to the alternatives.