celiac3270

Welcome

If you know that you have DH, then you must have celiac. DH is always accompanied by celiac. Therefore, you would have celiac disease unless the rash isn't Dermatitis Herpetiformis.

About testing, you should definitely stay on gluten. If you are on a gluten-free diet until the blood work (or endoscopy), the results are affected and you could test negative for celiac, even if you have it. So pile in the gluten .

Yes--it's not that debatable anymore--the contamination is just so likely that you'd be taking a huge chance of being contaminated, either from the fields that had previously been used for growing wheat or rye, from the mill, etc. The odds are so great that we don't even need to go into the structure of the oats--because they're already problematic just from contamination.

Yes, start with the celiac site index, here. There is an abundance of articles and this will be your greatest resource for starting the diet. Go here for a list of safe and forbidden ingredients on the gluten-free diet. Try to schedule a biopsy as soon as possible, since she should stay on gluten until the testing is done so as not to affect the results. Finally, just ask if you'd like any suggestions about brands of gluten-free food. For a pasta replacement, for example, most will agree on Tinkyada and for bread, the top two are usually Kinnickinick and Ener-G.

For mainstream products, e-mail them for lists (Hormel, Oscar Mayer, Haagen-Dazs, etc.) Many gluten-free lists are in the Q & As on the websites, others you need to e-mail for. The easiest mainstream brand to get started with is Kraft--any gluten will be in the ingredients list so if it doesn't say wheat, rye, barley, or oats, it's fine. This way, you don't need to call about gluten in flavorings or modified food starch.

So how are you now? On the road to recovery or almost completely symptom-free?

Oh, this is funny -- last time I was hospitalized with anaphylaxis, they brought in bread on my hospital tray the next morning! It's was in my diagnosis, and I also told the dietician. So of course when I asked the dietician to be sent to my room, she told me it wasn't wheat, but "whilte." (Is "white" a new grain? I used to teach in the wheat and corn fields of Kansas, but never a field of "white." Hmmmm . . . ) Anyway, there I am explaining to this dietician what wheat is! Argh! It scares me, thinking of little kids with food allergies, who just eat what is stuck in front of them. Another story.)

OK, tell me something funny too?

Yep--far too common. When I was first diagnosed my dad said something like, "Oh, you can eat raisin bran, right?" He got the impression that unless it was rye bread or frosted mini wheats, I could eat it . He understands now, but we still make fun of that.

People have actually asked on the board if white bread is okay....on the last pages of messages, probably in the food products section--kinda funny, but scary--some people have life-threatening responses when they consume foods they're allergic to--the dieticians would be in trouble if someone in the hospital was that way with wheat.

You probably tried to add a personal photo--none of us have that option. You can, however, add an avatar. Scroll up a bit and go to my controls. Then on the left hand toolbar, click "edit avatar settings." You can add one from the gallery and import one of your own (I don't remember, but you might need 30 posts--advanced member--to be able to import your own avatar). Other ways you can kinda personalize yourself on the board is by editing profile information--including AIM, YIM, e-mail, MSN Messenger, etc. so people can talk with you (if you choose to) and adding hobbies and interests, birth date, location, etc. Finally, you can add a signature, clicking "edit signature". The signature is added automatically to the bottom of every post you make. Mine has my name, diagnosis story, etc., some people have a quote that they like or something. All of these options are located in the same general area on the left side under "my controls".

Welcome to the board!

That's about all I have to say--no words of advice or reassurance needed--you've been on the diet 10 times longer than I have been .

-celiac3270

Yay! I'm really happy for you--truly

Deb-- LOVE that idea....tell me when you launch one in NYC .

Laurie, I found a light, kinda flaky bagel (like a croissant) made by Sans Gluten. It isn't dense like most, but I've grown to like it more than the denser gluten-free bagels.

I was thinking of these a couple days ago. So, you smush the chips...all the way into almost a powder or just into small pieces? Also, do you just dip the meat in the crushed chips or dip it in egg, then in the chips?

#1) Just for background info. for my answers, I first developed gastric symptoms when I was 6...I'm now 14. I started taking those chewable Flinstone vitamins once daily around age four, I think. I took Prilosec OTC for about three months (it says on the package only to do it for two weeks, but this was on the advice of my doctor). I started taking this when I was thirteen and having been on the gluten-free diet for a few months. Oh, I almost forgot, when I was 11, I went to a homeopathic doctor to try to resolve my symptoms. It helped slightly, but I've also heard that the onset puberty can make the symptoms stop temporarily. To be really specific, I had sporadically taken other things....Tylenol when I had headaches, Robitussin if I had a really bad cough, etc., up until the time of my diagnosis, but obviously, I wasn't taking these at all regularly . Just trying to provide as much detail as possible.

#2) Changed to Tylenol Extra-Strength aspirin (swallow kind) when diagnosed--up until then would take the kids one when I got a headache. I changed vitamins at the time of my diagnosis as well. That's about it.

#3) When I was younger, I ate farina (w/ the Quaker oats) all the time--for breakfast, sometimes for dinner--I loved the stuff. My parents/babysitter made it for me with milk. However, every time I ate it, I'd suddenly feel nauseaous and a little sick, then I'd have to run to the bathroom and vomit, then it would be over. This happened almost every day I ate it, but only at night, and I don't think this happened with other foods. Sure, oats are contaminated, but I ate other foods that contained just as much gluten and didn't have that reaction. My pediatrician at the time said it might be hot milk or something, then said it could be allergies, but you shouldn't test--they're too expensive and not worth it and all that stuff. That's the only really suspicious thing--not because of the GLUTEN, but because it made me sick in a strange way that the other foods didn't. Around this time I continued to grow upwards, but weight gain slowed. I think it's strange that I got sick with this food and not others.

#4) Lived in New York City, NY and still do.

#5) I think, when I was about six years old, which would be in 1997.

#6) Abdominal pain was a major symptom--pain due to gas. No joint pain or anything else like that.

#7) Very few. It's interesting that you ask that, actually. I used to drink a ton of water and then, in the past few years, I slowed considerably. I don't drink with breakfast, don't drink with lunch, sometimes don't drink with dinner, and drink only a tiny bit during the day. A really poor amount of water--maybe a glass or two at most. I know I should improve that, cause every now and then I get headaches and then I drink a lot of water and stop when the pain goes away.

#8) None...no allergies, nor any other conditions (that I am aware of)....oh, slightly high cholesterol, discovered while running tests to try to diagnose my problem. Not a big deal, according to the doctor and the first thing is to get my health on track (get rid of my symptoms).

#9) I wouldn't have put it down as a health condition, but seeing that you gave it as an example, my hands are nearly always cold. No other issues, and despite my limited water drinking, my mouth is not dry.

#10) No flu shots, and I was vaccinated with....everything they vaccinated kids with starting in '91. ...whatever those shots may be for.

#11) I have no idea what half those words mean. I tested positive for celiac in bloodwork done, but that's all, I think. No problems with hormones and such.

#12) About...8 months ago, when I was going to a GI who diagnosed me, but was pretty clueless about the recovery period, I had some stool test done. He did a....rectal examination and found that I had loose stools and he wanted to make sure it wasn't some bacteria or parasite or something. It wasn't.

#13) Yes-- positive bloodwork and positive endoscopy.

#14) True--I am a paranoid celiac and I haven't consumed any gluten purposely. I had an endo. a few months ago, which verified that my villi had healed completely.

#15) False--no prednizone or the other one--just asked my mom if I had...lol

#16) Nope-- I don't drink since I'm 14

#17) YES, YES, YES. I ate so much bread/bagels/pasta/other gluteny bready products before diagnosis. I have strong cravings for chocolate and sugar .

#18) False--though I probably should feel dehydrated.

#19) False--no more that the average person, I think.

#20) False--not a new home (apartment, in my case) and it wasn't very old, either.

#21) Not at time of diagnosis, but my brother loves plants--he is growing an avocado tree, tomatoes, corn, etc....all on our windowsill

#22) False--I go to bed around 10 PM and get up around 6:45 AM

#23) Nothing

#24) No

#25) No

#26) Aggressive--I've listed them on here often enough

#27) There's a sort of pattern. It's often after dinner that I start to feel sick, then by 9:00 or 10:00 PM, I star to feel really bad. The other way it often comes on is in a way it never used to. I wake up, feel a little nauseated, eat breakfast and am fine, then by midday feel terrible...but I know it's coming when I feel bad in the morning, even though it takes hours to accelerate to its worst.

#28) Used to eat a very large breakfast consisting of a large bagel, or sometimes a bagel and a half, and usually an apple or banana. Lunch varied--at home it would be a hotdog on a bun or macaroni and cheese or something. At school it varied a lot: pizza, rice, tacos, fries, burgers, pasta, chicken, etc. Dinner....largely gluten-free. If it wasn't ravioli or lasagna or something, it was usually potatoes, a meat (steak, pork, chicken, etc.) and a vegetable, which, I admit, was pushed around my plate more often than eaten. I'd often have another piece of fruit later in the evening (having had grapes, a banana, an orange, canned peaches, or another apple at lunch) and various snacks throughout the day including potato chips, cookies, etc.

#29) True--my mom says I was extremely pale and I looked a little emaciated before starting the diet. My color's a little better, but still slightly pale. No blonde or red hair

#30) False

#31) False

#32) False

#33) False

#34) Well, sorta true. I wasn't alive 10 years before developing symptoms, but from the day I was brought home from the hospital, there was a dog in the house (Norwich terrier)

#35) True--apples

#36) Confident--not talkative or outgoing, though

#37) True

#38) True

#39) True -- not as moody, not as depressed, not as much of a worry wart.

#40) Nope--not at age 6....it's difficult, cause I'm not really sure if my celiac started at age 6 or around age 11, when I started getting symptoms similar to what I get today. Not any at age six, a minimal amount, if any, at age 11.

#41) Maybe....I don't really remember. Not cleaning, but maybe new carpets.

#43) A mix of flooring....wall-to-wall carpeting in living room, wood in hallways and bedrooms, and tileish thing in kitchen/dining room at time of diagnosis. I've moved since and every room is hardwood except for bathroom and kitchen (tile).

#44) Chlorox bleach and don't know what detergent....detergent might have changed.

#45) True

#46) FF

#47) Righthanded

#48) False

#49) True--gurgling when I'm feeling sick. Don't even know what GERD is.

#50) True--skinny. True--gained weight, but I'm a teenager, so I'm supposed to be gaining a lot of weight and growing...I'm not where I want to be in weight.

There are a lot of questions, so I know it wouldn't be practical, but I'd be fascinated to know what some of my answers mean in terms of health--and how things such as wood v. rugs affect my health. Hope this helps with your research.

-celiac3270

I ordered 10

Cool! Thanks for posting--love the idea, and for a good cause

I forgot to mention-- I would LOVE it if there was a 100% gluten-free chain restaurant. The reason I don't eat out is because I'm so paranoid that even if the restaurant has a gluten-free menu, they could mess up my food. It would be amazing to order anything off the menu and feel confident that it's gluten-free.

My biggest thing is not being able to go in and grab a coffee and a muffin, or piece of pie, especially when travelling. Where's this restaurant going to be, and will you please start a chain!! Just one all over Canada and the US will do

I know--lack of spontaneity....you can't just walk into a restaurant and say "this looks good." I think that's one of the worst things about the diet.

Oh, thank you very much . I send many e-mails to food companies, but don't think to do so with restaurants. I don't eat out often, but my family is going to go skiing in early March., so it'll be nice to have a couple of chain restaurants I can rely on. Last year I ate in the hotel room w/ my mom--baked potatoes or Ore Ida french fries cooked in a toaster oven we brought and meat cooked on a george foreman grill...I'd rather not repeat that if I can help it

Welcome to the board ,

You can order the Enterolab tests on your own through Open Original Shared Link. The prices vary from I think $99 and up, depending on whether you get individual tests or entire panels. You shouldn't try to do this with your doctor, because 9 times out of 10, or even more often, doctors will not take Enterolab tests as being diagnostic or accurate--not because of the test itself, but because they'd rather get paid for performing an endoscopy, etc....a grim view of it, I guess, but that's the way it is.

Some soy sauce is gluten-free--I don't know which ones, cause I don't use it, but if you ran a search on this board, I know you could find the names.

I just looked at the site. Here is where you can order the tests, which range from $99 for a gluten sensitivity test to a full panel for $349 dollars: Open Original Shared Link

Oh, that was interesting to read--particularly about the withdrawl effects. I couldn't read it really carefully now, but I'll read it through more carefully later. I know that caffeine can be addictive, but I don't think that I consume enough for it to affect me too much. Thanks for posting, though

It's completely about personal opinion. I think many would rather suffer for a few weeks and know for sure. Also, if you test negative for celiac and still have problems with gluten, you might be prompted to have other tests done that would result in problems with wheat, rye, and barley.

I think that because it's so life-altering and since you've already started eating gluten, I'd just finish it out so you know for sure, but I'm not qualified to make that decision for you. It should be based entirely on how you feel. I, personally, just wouldn't want to doubt the diagnosis throughout my life.

Did bloodwork test positive? If so, there's still a great chance of celiac. If not, then the chances are extremely slim if any such chances exist, but thanks for informing everyone here.

-celiac3270

Yes--as good as it sounds to write down what I'd love to eat or to smell it, I think it would be very difficult for me to eat some of these things, knowing what I do now about the damage it does to me and how sick it makes me.

Yes--definitely. The delphiforums board is the largest celiac board on the web, I believe--many members and people are constantly on. You might also post your question there--I know you'd get many replies. They have great gluten-free lists that are updated often, very reliable, and comprised, edited, and corrected by the members of the board. You need to join to view the board, but membership is free. I meant to tell you of this in my first post, but I forgot

Yes--I miss it, too--particularly cheese ravioli. I had been having lasagna instead, which was just as good as my old gluten-filled lasagna (home-made with some flat noodles, made by Deboles I think). It's very good, but I haven't had it in many months since I cut out tomato sauce temporarily.

Oh man......don't know where to start...lol. Pizza is the #1 food I miss....then bagels would be high on my list, but I found one I really like. I can't eat spaghetti sauce I right now so I really miss lasagna (but I've found my gluten-free lasagna (made w/ Deboles noodles, etc.) is just as good as the old one I used to have. Hmmm...I was thinking of everything I missed last night while I was falling asleep (since I was kinda hungry...lol), but now I can't remember everything. I'll post back later when I remember something or maybe someone else's foods will prompt me to remember my own

Don't forget that, after a number of months being gluten-free, you may find that you don't mind some of the pastas you don't currently like. Give them a try again after a while if you still can't find one you're satisfied with.

(Besides, pasta sauce over spaghetti squash is good too! ;-) )

Good point--this applies to all gluten-free food. The gluten-free bagels I didn't like at the start are now my favorite that I eat every morning (made by Sans Gluten).

Oh--something else I should mention. Regardless of whether she's Jewish or not (I'm not and I still take advantage of this), buy lots of food around Passover. All food labeled kosher for passover is gluten-free unless it contains matzoh. So she should definitely visit the grocery stores during that time and stock up. Last year I got chicken broth from Manischewitz--quite tasty w/ Tinkyada noodles. Just another mainstream option to be aware of.