celiac3270

Back again....I just checked the prices and depending on how thorough you want to be, the prices range from about $170 to about $360. For example, gene tests or not, etc........BTW, you order online.

I have not had any of these tests ever conducted, but I know a little about them. First, you can still run those tests. That's what's so good about them. Unless you've been off the diet for years and years, you can run them with accuracy. If you go to their website, Open Original Shared Link, you can get information on costs. They vary based upon what individual tests you run or if you do a panel of tests. I believe they're somewhere between $100 and $500, depending on if you do panels or individual tests (panels are a couple tests, so they cost more. I don't know much about this, so someone else can provide some more info., soon, but this should be enough to get you started

-celiac3270

I like Tinkyada pasta a lot, and so do most here on the boards. Kinnickinick is the most popular bread....I like it the most, and I've tried a lot of breads . If you haven't tried these, check them out.......it's a difficult change, probably difficult for him to understand, and it might take time. How old is he?

This may sound stupid, but you just click on them ! When you do so, you'll see something in code. For the laughing smiley, the one above, you'll see a colon, the letters "lol", and then another colon. Once you finish your post and add it, the smilies will change to the ones you see in all the posts. Eventually, you start to recognize the code for each smiley. For example, the normal smiley is a colon, and then a right paren. If you know the code, you don't even need to click it, but can just type it in. When you submit your post, the code changes into a smiley.

Sort of.......but if you compare the percentage of june votes to the percentage of all other votes as divided amongst the eleven other months, there are more June than the average month. This poll probably would have been better if I had made it May/June/July as an option. People aren't born exactly when they're supposed to be and if you're off by one day, you're essentially a June baby.....although June didn't come back with overwhelming numbers, it still won over the other months...

Try not to fret....it can take over a year to get better. I've been gluten-free since February, too, and I still have symptoms -- and I've been really paranoid about the diet and have been tested in many different ways for other problems. It takes time.

I'm not sure about Meltaways, but I think that one of Tylenol's chewables for babies is gluten-free........don't know the exact name, though, so I guess this isn't really helpful.

Yea....I do not eat there when I have other options. In February on vacation, I didn't have many options since I didn't know about any gluten-free chain restaurants at the time, so I ate there once or twice. In upstate NY, the people seem a little more knowledgeable....not about celiac, but about dedicated fryers, etc. In Manhattan, though..........no McD for me.

When I went to a GI (before I was diagnosed), I had all sorts of tests run to figure out what was wrong with me (sonograms, bone age, etc.). I was tested for celiac and other allergies, as well.......

I have her business card, and if you call her office, I'm sure you could get Dr. Green's number. I just typed out all the info., in case you also want things such as e-mail:

Anne Roland Lee, MSEd, RD, CDE

Nutritonist

Celiac Disease Center at Columbia

Herbert Irving Pavillion

New York-Presbyterian Hospital

Colubia University College of Physicians & Surgeons

161 Fort Washington Avenue, New York, NY 10032

Phone: (212) 342-0252

Fax: (212) 305-3364

E-mail: arl2004@columbia.edu

Lpellegr used the "report" button to try to reply to this thread. The member wanted to say:

I am recently diagnosed and also have no outward symptoms other than anemia, which I found through blood testing (I never felt anemic), so I have no way of knowing if I have accidentally eaten anything forbidden.  People keep asking if I feel better, but I felt fine before except for random GI symptoms that I thought were IBS.  So even though it makes no difference to how I feel, I am trying to stick really hard to a gluten-free diet because I have read about the long-term consequences of gluten exposure.  Cooking at home works out fine, although substitute food can be expensive, but eating out is a challenge (and I'm already planning what I will do when I have to travel for work - not easy).  But I am sticking to it to make sure it doesn't get worse.  Like some of the other posters said, focus on what you can have and try to include new things, rather than mourning for what you can't have.  I try to educate friends and family to the long-term consequences so they will help me, and most willingly do.  Now if I could only find a good substitute pizza crust....

I have had the endoscopy. Actually, I've had two. After getting positive blood results for celiac, I had the endoscopy to make sure that I had celiac. Those results were also positive. The treatment, obviously, was a gluten-free diet. I also had one in September to make sure that the gluten-free diet was working since I was still getting symptoms. The test showed that my villi were healing, thus, I just continued the diet. If you're on a gluten diet, you could use an endoscopy to check for celiac disease. You can also use the endoscopy to check the effectiveness of the gluten-free diet on your intestines (if you've been on it) and to verify that you're really following a 100% gluten-free diet and not making any gluten slips. Finally, your doctor can check for other problems in the intestines, such as ulcers.

I eat the two flavors of gluten-free genisoy bars. Some Atkins bars are also gluten-free. Despite being for people on a diet, they have a good amount of fat and protein, I believe, and I don't think there's too much sugar.

Oh .....when I was replying, I thought your daughter was 8 or 9 .

I have nearly 5 years before I experience college with celiac disease. You should probably talk to the people in charge of food at your daughter's college. Jessica (angel_jd1) had a list under the teenagers only section about a very common food supplier that is very helpful and accomodating with college celiacs. Definitely send a lot of gluten-free food and try to print lists about mainstream products such as Lays chips, etc. that could be bought anywhere without great expense. Definitely send a small refridgerator and if the college will allow it, a toaster oven........all you need to get through life is a George Foreman grill and a toaster oven . Even if there is some rule against toasters, celiac is technically a disability so they should be able to bend the rules for someone like her. There are a lot of celiacs here in college now or just leaving college, so somebody should be able to provide some true insight into the issue.

I've been avoiding sugars/acids since....I can't really remember, but probably about a month and a half. The doctor suggested that the acid from spaghetti sauce and ketchup might have been bothering my stomach and cutting out acids including tomato products and oranges might help me. He gave good reasons, but I don't remember exactly what he said. Anyway, I think the acid elimination was really helping cause on Thursday and Friday I had tiny amounts of ketchup and I reacted. I know it's not the ketchup, cause I use Heinz, so I think the ketchup elimination has been helping. I have returned to 100% elimination of ketchup.

The sugar isn't an elimination but a.......restriction. The doctor suggested that complex sugars might be bothering me somehow (either that or the acid) so I cut back on those. I don't need to avoid all sugars, but he suggested that I avoid grapes and watermelon since those have some sugar that is perhaps harder on my system. Again, I know he gave me intelligent reasons to avoid them, but don't remember what he said.

Finally, I have received miscellaneous tips: don't eat the skins of apples (hard to digest), cook noodles very well so they're mushy, etc. I think it has helped because until my bout this weekend, I hadn't been sick since September 9th! In terms of general sugar, I realize that a lot of sugar from colas or candy won't help me, anyway, so I've been cutting back on them.

I might have put this under my old post in the coping section from awhile ago, but this is probably more descriptive, anyway.

I'm not a big Oreo fan, and I admit, they're not the same, but I think it's difficult to find products that are truly identical to their wheat-filled counterparts. I don't think they'll become staples of my diet, but they might be a nice change every now and then.

Oooh......I was cringing as I read this. I've said it so many times and I'll repeat myself, that I am a paranoid celiac when it comes to contamination....and I stay away from my brother, for example, if he's eating pasta or cereal. That is a celiac's worst nightmare

I just read an article from one of the links that Medaka provided. It sounds like there isn't really a cure for it so you could be dealing with the symptoms from it until.......they find a cure. It just seems so unfair that it happens to someone like you, one who is still dealing with symptoms from something else and already has a restrictive diet for life. I just hope that this is the source of your symptoms and that if there's a way to get this under control, you'll be fine.........

Best wishes as always,

celiac3270

I think it's just a way to rebuild your gut, so in that respect, I think it sounds like a good thing. But it also sounds very difficult.

It does sound like a good way to repair everything since it's so limited. My problem with it is that it is so restrictive. There is already so much that is restricted through the gluten-free diet (in addition to any other allergies or intolerances one might have). If you eliminate even more, you can't eat any gluten-free products you would buy, such as breads, brownies, cookies, etc. What can you eat? Well, I guess you have to eat all fresh products that you make yourself. Anyway, I also need to deal with eating a gluten-free lunch that my school provides, so it would be very difficult for me to adhere to. It's nice to know that there's a last option, though. If I take over a year and I'm just as sick, I just might try that in desperation

I personally don't have the symptoms your daughter has, but I believe celiac3270 might be able to help you - some of the symptoms he displays are similar to your daughters....

Sorry, I can't really help on the symptom part. I was exactly the opposite; I had lots of GI symptoms and I was the classic celiac and knowing what I know now, it should have been very easy for the doctor to diagnose me. My symptoms included abdominal pains (coming in 12-24 hour bouts about once a week, but sometimes more often), vomiting (accompanying the stomach pains), bloating (constant--I was REALLY distended), gas, audible stomach noises and rumblings, occasional loose stools, and low-weight.

Your question about different degrees of celiac: there aren't really any varying degrees. What varies are the symptoms that people get and how severely the react to gluten ON THE OUTSIDE. Just because you can eat something with gluten and not react doesn't mean that it's not hurting your body just as much as the person who is experiencing full-blown symptoms. Actually, some celiacs have no symptoms at all regardless of what they eat, yet if they don't stay on the diet, they're just as likely to run into complications later on.

I agree with Tiffany; definitely check out the resources of this site. Besides the message board, which is a wealth of information in itself, there is a portion of the site with articles and lists of all kinds of things related to celiac disease. On the left column towards the top of every page, there is a menu. If you click on "site map", you're taken to the sort of informational center of the site. From there, you can find articles on celiac disease, contamination, related disorders, lists of gluten-free products, lists of gluten-free ingredients, lists of gluten-containing ingredients, etc. When I first came here in February, I didn't utilize this tool, but still learned quickly since I read nearly every post on the boards. I did use some of the ingredient lists and now I realize the value of this tool.

Contamination is a HUGE issue. I am completely paranoid about this and it's difficult for some people to understand unless they're the ones getting sick for years on end and not knowing what was wrong. You should really have a few cooking things designated as gluten-free only: a pot, pan, spatula, toaster, etc. Sooner or later, you might fail to wash something carefully enough and then your daughter could be contaminated. One crumb will bring back any symptoms and frequent contamination will undo any progress you make. This leads into the toaster issue: if there is one crumb left in the toaster and it gets on a piece of gluten-free bread, the bread is contaminated. The risk is just too high.

When you have questions you can sometimes find the answers on celiac.com, but you can also run searches. If you scroll up a bit, you'll see the topic name, then you'll see your user name, etc. On the far right, there are a few options such as members, calendar, search, and help. If you're questioning, say, the status of Pepsi (it's gluten-free as is every other beverage made by the company), you could run a search for Pepsi and find a post in which someone asked if it was gluten-free. You get my point. It's just an easy way to save time..........

Your daughter's symptoms could very well be related to celiac disease because there are no set symptoms for celiac. I was a classic celiac, but we are now learning that the "classic celiac" is not necessarily the most common celiac. Symptoms for celiac disease are ranged, so any symptom could be a celiac disease symptom.

Please forgive my rambling......it's now about 4:30 in NYC, I've been up all night with an upset stomach.....celiac stuff.....my villi are healed, but my stomach is still irriated from all the gluten, even though I started the diet 8 months ago. The dr. compares it to a car--it's as if I was going at 100 mph with the gluten, so even when I slam on the brakes with the diet, it doesn't come completely to a halt, and it takes time for me to stop.......there i go w/ the rambling. I hope something I said was useful

-celiac3270

Must've been a cute puppy .....I love dogs .....anyway, your avatar change worked!

Go to "my controls". Then go to "change avatar" on the menu on the left. You have the option of using an avatar from the gallery (most people use those) or import a picture of your own as long as it's small enough and in the correct file format.....

I threw out the packaging and put the cookies in my gluten-free cookie jar, but the next time I get them, I'll post the ingredients. I think they might have rice, but I'm not sure and I'm unsure about eggs, either.

It initially appears that they are only wheat-free. The front just mentions wheat-free. However, look on the back where they talk about their product and it says that the cookies are made from gluten-free products. I don't know why these people can't answer your question if it says it on the package.....

I think that there are far too many foods processed in non-dedicated plants or on non-dedicated lines for us to avoid those foods. In many of the bigger, non-specialty food companies, the products are produced in factories that also produce gluten-containing products. Therefore, to avoid those foods would be to avoid most mainstream products including FritoLays, etc. I'm paranoid, but I realize that there isn't much I can do about that and it's a risk we all take.