celiac3270

Yuck...sorry to hear about that, but at least it reinforces your suspicions....I think it's pretty obvious that you have it. Personally, if I were in your situation, I don't think I'd do it either. If I were under a month into the diet, I might, since the progress would've been minimal, anyway, but at this point, there's no way I'd go back....I think you're making the right decision. Besides, I think it's your doctor's opinion that's important, not the dietician's.....good luck on this and convincing your parents to try Enterolabs.

-celiac3270

That's quite a story celiac3270. Has your family thought of doing the enterolabs test. Sure would make sence that if you have this they could too. Hugs, Carol B

It would make sense to do some other tests....but the doctor's tested my entire family...my brother's been tested twice...and I think that everyone but me is convinced that he doesn't have it. The doctor thinks he's fine, my parents no longer suspect that he has it, etc. I don't know if they'd be too receptive to a suggestion of additional testing....

am 75 years old and still tutoring and helping our teachers at school. I walk alot in spite of quite a painful right heel. Hope , even at this late date to get a better handle on my digestion problems with the Lord's help. These boards on the internet are a real blessing. Ruth

Wow, Ruth, so you've been having your symptoms for a long time.....71 years! This board is really helpful and informative....quick responses from people who not only know what they're talking about, but also understand what everyone here is going through, having similar issues, themselves....it's great.

-celiac3270

I think im going to go out and eat something anything i want and see what happens ...i know what will happen i just want to see if i would be able to do this for a month might help me make my decision.

How'd it go? (Eating whatever you wanted)...if Kalo's suggestion is true (if the stool test would work), that would be a good alternative, although, I don't know how much a doctor/nutritionist would like it.... ....from what I've heard, they don't like things from Enterolab (I've never had any tests done there).

-celiac3270

I've mentioned Foods By George for corn muffins and brownies (both are fabulous). They also make blueberry muffins...I haven't yet tried them, but plan to.

-celiac3270

oh....really?.....I only use the creamy, anyway, which is probably why I didn't know, but for some reason I thought that they were all fine...thanks.

-celiac3270

Research, research, research (esp. on this site).....and start keeping a binder or folder....print out good threads or photocopy things from books, various lists, print recipes or whatever.....start one central place where you can look for recipes or ingredients or food ideas....whatever.....then, even if you don't memorize all this stuff, you have it in a place where you can easily refer to it.....I haven't followed my own advice, but I just try to remember it....however, since you have multiple people that will need to refer to this info., it might make sense to have hard copies of good information.....

Second, buy Danna Korn's book "Kids with Celiac Disease: A Family Guide to Raising Happy, Healthy, Gluten-Free Children" it is really helpful.

True....it's helpful for when you're starting in that it has various lists, but also good for various parenting tricks with Celiac kids....for example, what to do about birthday parties or Halloween....and then various ideas for everyday life with a Celiac kid. I was thinking of that book, but couldn't remember the title....thanks Boojca.

I, too have joined Jessica's group, although I don't post much...I have all the topics coming in via e-mail, so you don't even have to go to any sites...if you see by the subject that it's something that you're not interested in, just delete it, but if it's something that you do like, it's convenient to read.....in addition, most of the topics are things that you don't see on the board (for example, you'll be sent the article every time celiac disease appears in the news -- they even had e-mails about babyfood....not sure exactly how old your son is......

-celiac3270

My grandmother had SEVERE osteoporosis and I wonder now if she had celiac

I meant to mention this in my other post, but forgot to: my grandmother has SEVERE osteoporosis....the worst her doctors have EVER seen....lots of bone/back issues. For example, on her spine, she has not only osteoporosis, but also scoliosis and some other things that I can't pronounce. She also weighs very little, bordering 100 pounds (and she was, at one point, very tall: 5'11"...but now she's shrunk a bit from the osteoporosis). I think the low-weight, in addition to osteoporosis made her a good candidate for celiac disease, but of course, at 80 years, undergoing a dramatic diet change isn't worth it...... Anyway, she did go get the bloodtest cause she wanted to know. It turns out that she "doesn't have it", although, who knows what a scope would have said -- like I said, before, though, it's not worth changing the diet, anyway -- so no point of the biopsy...and, she has enough tests being run on her...she doesn't need anymore to check if she has something that isn't worth changing anyway at 80 years old....since your intestines don't turn around in a day......

While in a Osteoporosis and Thyroid thread, my mom has to take a pill for her thyroid (too slow, but I don't know what it's called....the most scientific I can get is that it doesn't produce rhodopsin, so she gets it in a pill...etc.; a common thing). She, also, "doesn't have Celiac" although I'd say that some of her symptoms match celiac disease. Bloating after eating a lot of gluten (like a big subway sandwich, or something with a lot of bread like that). She also had stomach problems as a child; like I had as my main symptom. She would have cramps sometimes as a kid (my main and worst symptom). In addition, she had a symptom that a Celiac I know also has. She would, after dinner, feel really nauseous, and run to the bathroom, vomit, and then come back and feel fine. Another Celiac I know has the same thing (make that: HAD the same thing...his symptoms have gone away).

Finally, my brother has the same "figure" as I do....he weighs the same as I did at his age, is really skinny despite eating a lot (he eats a good dinner, then has a HUGE "dessert": a few pieces of watermelon, a big bowl of ice cream, sometimes some fudge cake or brownies, and this rather gross "Pirate's Booty" (a type of "popcorny" thingy covered in cheese...I think it's disgusting, but he loves it). And yet, he doens't gain a lot of weight. Since the diet I've gained 10-15 pounds so I no longer look grotesquely thin, but rather, like a skinny kid -- I could use another 10 pounds.... ....anyway, my brother isn't sick, but because of his figure/weight, I thought he might be an unsymptomatic Celiac....two blood tests were done....and he's "not a Celiac". Funny, I'm supposedly the only Celiac in my family, and yet, I'm living amongst people who look like they have it!...crazy!!!

-celiac3270

Thank you everyone for the spaghetti sauces....I always thought that it's ridiculous to have to pay over four dollars for a simple jar of spaghetti sauce; it was very good, but the price seems a little bit outrageous; it was the only one the nutritionist mentioned....she missed the other sauces, kind of like she mentioned Wrigley's gum and didn't mention the others that were gluten-free (I now know which are)....anyway, thanks again.

-celiac3270

Oh...Ragu is gluten-free...all I knew about was "Classico", but Classico is really expensive....know of any other gluten-free spaghetti sauces?

-celiac3270

DeBoles is good, but a little more expensive than Tinkyada, which tastes a little better anyway....so my #1 recommendation would be Tinkyada (though you can't go wrong with either of them).

-celiac3270

You'll feel ill for quite a while after going on the gluten-free diet....it doesn't just go away overnight, so yes, it is normal

Hi ,

Okay...slightly off-topic, but to use the smilies, get to the point where you want the smiley and then click on the one on the side that you want. You won't see smilies appear as yellow things but, for example, the regular smile would appear as a colon and then a right paren. Then, when you submit, they change (like a code). Knowing that a smile is a colon and a right paren., if you want to make one, you don't even need to click it, but rather, can type a colon and a right paren .

By the way, if you click, show all, you have more smiley options and you can see the "code" for each smiley, as well.

-celiac3270

I still avoid it whenever possible because - just like a little kid - things get in the mouth. It gets on your hands, on your face, and it can get in your mouth without you even thinking about it.

Yep, that's why I would try to avoid it, anyway.....

-celiac3270

I have slightly high cholesterol....and I'm only 13!!!! And I play lots of sports, love to run, and am constantly active. I'm doing nothing about it, cause it must not have been too bad; my doctor didn't bring it up or tell me to do anything about it....

-celiac3270

Hahaaha! I do wonder now and then what kind of patient I was... did I gad?... did I drool?... only the doc will know. It sounds like your side effect took a day or so to kick in.

I think they said that they'd give me something to stop my gag reflex.....but I know that I drooled -- the hospital pillow was all wet from my saliva after -- -- yuck.

-celiac3270

It's your decision.....like your mom said....do what you feel is right...

if i tell her i wont do it than it kind looks like i dont want help but if i do tell her i will do it i will be miserable.My best friend thinks i should and keeps fight with me and is telling me that im not going ot get better if i dont listen but if i get tested it doesnt help me i just know 4 sure.

I see what you mean about saying "no".....and obviously, I can see your point about going back on the diet . The symptoms might be worse going back on the diet than they were before...I think I've already said this in another post.

As for your best friend, she shouldn't influence you in any way. First off, this is your decision and you know more about celiac disease and what you need to do than they do. In addition, and most importantly, your best friend doesn't have to live with symptoms, so it's easy for her to say that you should get tested. Finally, you'll get better even without knowing for sure...like you said, all it does is tell you for sure, so if you don't care about that....I don't see why you'd need to go back on the diet. However, if you want to ever find out for sure, then you should do it now when you're not completely healed, rather than, in a few years, deciding to see for sure -- better to go off track in the beginning. Your decision -- I'm not going to give you any answer because your best friend shouldn't influence your decision, but neither should I. Good luck.

-celiac3270

Okay...there's some stuff on Celiac.com on interpreting stuff, but I couldn't get through it, so I found another site...........which I also can't get through.... ....they make this stuff hard to understand:

1. Serological

a. The blood tests recently developed for the detection and screening of celiacs and their relatives are a useful aid to diagnosis and monitoring. The tests have a clinical utility in:

Screening at-risk populations to identify biopsy candidates

Providing information to support a diagnosis of celiac disease

Monitoring adherence to a gluten-free diet

b. There are two classes of antibodies seen in untreated celiac disease: Antibodies directed against a fragment of gluten called gliadin and antibodies directed against some tissue in the body itself, endomysial (the covering of muscle), and reticulin (the framework for kidney and liver). There are other types of antibodies to the body's own tissues.

The actual tests are done using blood from the patient. The blood cells are removed. The gliadin test is usually an automated machine read test. While this means there is little room for interpreter error, there are no standardized tests, normal ranges, or even standardized methods in use in the US.

The endomysial tests are more dependent on the experience and ability of a pathologist in looking at a pattern of staining produced by the patient's serum on a slice of monkey esophagus or human umbillical cord. While this test is done in a similar way in most labs there are differences in how these are interpreted.

c. How good are these tests?

If all of the tests are positive then they are pretty accurate, GT 95% right. However, there are several reasons and circumstances when they are not so accurate. IgA and IgG are two different varieties of antibodies we have in our immune systems. The IgA gliadin and IgA endomysial tests are the most accurate and also become negative relatively quickly after stopping gluten (3-6 months). The IgG is not as specific (it can be positive in non celiacs). However it is important to do both, as about 4% of celiacs have low enough levels of IgA to make the IgA tests inaccurate.

These tests can only be given to a patient that is consuming gluten. The amount and time require for a gluten challenge varies and is a factor for consideration when scheduling the test.

Negative results do not indicate that the patient will never develop Celiac Disease, only that it is not currently a factor. HLA typing can be used to determine if a person has the genetic factors that are associated with celiac disease; without these genetic factors celiac disease is very unlikely to ever develop. For more information, access the file CELIAC CEL-HLA with the GET command from listserv@maelstrom.stjohns.edu.

Needless to say the interpretation of mixed results (i.e. some positive and some negative) is complicated. Also the interpretation and use of these tests in infants may be different, due to lower levels of IgA.

Okay, then there was a table I found in the FAQs of this site, which tells you how important each of the tests are for telling you "yes" or "no" with celiac disease:

Each of these three tests provide a certain degree of reliability for diagnosing celiac disease. Of these, endomysial antibody is the most specific test. The following table is taken from our studies (Lerner, Kumar, Iancu, Immunological diagnosis of childhood coeliac disease: comparison between antigliadin, antireticulin and antiendomysial antibodies).

My Dr. appt. today was a bum's rush for me. I am so disappointed in Dr's! I did get samples of Evista for osteoporosis, for a month. The Dr. chose this one, as it's not as hard on the digestive system, compared to Fosamax.

If you do feel strongly that you are a Celiac, and therefore, are on an entirely gluten-free diet, make sure that "Evista" is gluten-free, also....many medicines aren't.

So for one who doesn't have DH, confirming that a sunscreen is gluten-free is not important? (although I will try, anyway).

Hi,

It is rather difficult. First thing you should do is go to the site index on this board and find the fobidden ingredients list. You're going to be reading a lot of labels. In addition, anything containing natural or artificial flavorings is questionable; those companies need to be called (that means that pretty much everything that doesn't say gluten-free on the package needs to be called.....it's a lot of work.

-celiac3270

What's lupus?

I'm not a girl, so I have no idea.....my Mom has a Celiac friend and therefore, knows that no eyeliners are gluten-free....I think she has a list of gluten-free makeups, but obviously, my mom didn't need to copy it or anything.......so, like I said, I can offer nothing else.......I feel weird, posting in this thread....

-celiac3270

Some foods...just a list I always post for newbies...maybe you can get something out of it....

- Store-bought Cookies: try Pamela's Products -- the BEST cookies. The lemon shortbread are decent, but some people find them too strong a lemony taste. However, try the Dark Chocolate Chocolate Chunk Cookies. They are AMAZING!!! Even including regular cookies, they are the best store-bought I've ever had.

- Homemade Cookies: if you have 15 minutes to spare, make peanut butter cookies. Very good...even my aunt who hates PB liked them. Preparation time is about five minutes and the recipe calls for 10 min. baking -- it might take 15. All you need is 2 cups of PB (Skippy or Jif), 2 cups of sugar, and 1 egg (this is also good because there aren't any weird gluten-free flours and stuff...where do you buy those things, anyway? I don't like to cook, and I surely don't like to cook something that requires six different types of flour...it's ridiculous and I like simplicity if I am even going to bother cooking something...I don't mind making basic things, but now 6-flour-cookies that take three hours to make and three minutes to eat... ).

- Fruits/Vegetables/Meat: I eat so much more fruit now...apples, bannanas, strawberries, blueberries, canned mandarine oranges, canned peaches, etc. There are, of course, meats: chicken, steak, pork, hamburgers, etc....no fresh meat is excluded...but I often forget about fish, which are, too, gluten-free.

- Bread: People will say Knikinick or however it's spelled is great, but I've found Ener-G to be a bread that tastes astoundingly similar to regular gluten-filled white bread...that's what I use...you make your pick...go with me or the majority!

- Pizza: probably thought you'd never have that again, right? Get Chebe (you can only get it online), but buy the bread mix, not the pizza crust (the bread mix turns out better). Follow the instructions, mush it out into a round "thing", bake as instructed, and then add sauce (Classico is good and the only kind that I know to be gluten-free....but expensive), and gluten-free cheese. It's terriffic. By the way, you can get the Chebe at Open Original Shared Link. Try it...the shipping is free and once you realize that you like it, you can buy it in bulk and get discounts. Please!!!! If you take ANY OF MY ADVICE FROM THIS POST....TRY THE CHEBE!!!

- Miscellaneous: Raisins, Quaker Rice Cakes, most soft drinks are gluten-free including all kinds (diet, caffeine free, etc.) of Coke, Sprite, Sunkist, Pepsi, etc. As long as you stick with the brand-name companies (not the Supermarket Colas and be careful with Root Beers). There are many gluten-free candies...I actually made a post under the "Teenagers Only Section" for gluten-free candies...check there for the complete list that Gf4Life provided...actually, I'll copy it below:

Hi celiac3270,

I have a list of mainstream gluten-free and milk free candies that I use when shopping for candy for my kids. I got it from the Gluten-free Casein-free Diet Support Group for Autistic kids and they are very strick when it comes to putting products in their booklet each year. I know that Dextrin is one of their ingredients that is avoided, so these should be safe. Still read all the labels, since manufacturers change their formulas far too often:

Nestle: Sweet Tarts, Spree Chewy Candy, Regular Spree Candy

Farley gummy bears

Willy Wonka: Gobstoppers, Bottle Caps, Pixy Stix, Nerds, Runts

Mike & Ike: Zours, Jelly Beans, Hot Tamales

Starburst Fruit Chews (NOT Starburst fruit twists!)

Necco: Necco Wafers, Sweethearts, Conversation hearts (Valentines), Necco Candy Eggs (Easter), Candy Stix, Talking Pumpkins (Halloween), Peach Blossoms (Christmas), Necco Ultramints, Canada Mint & Wintergreen Losenges

Rock Candy (made from pure sugar)

Ce De Candies: Kidz Rings, Candy Fruits, Candy Lipsticks, Smarties

Mars Inc: Skittles, Jelly Beans

Sunkist: Fruit Jems, Jelly Beans, Orange and Cream chews, Super Sour Stars

Sorbee International: Lollypops

Jolly Rancher: Hard Candies, Jelly Beans

Jelly Belly: All flavors of Jelly Beans EXCEPT: Cafe Latte, Buttered Toast, Caramel Corn, Buttered Popcorn, Chocolate Cherry Cake, Chocolate Pudding, Strawberry Cheesecake

This should give you a lot more options and they are all available pretty much everywhere. I can also put together a list of others that you might only find online or in healthfood stores if you would like. Just let me know.

As for chocolate, I found that the Scharfen Berger chocolate bars are very yummy. They are gluten and dairy free by ingredients. The small bars are wrapped in a different facility where they also wrap other chocolates that do contain milk, so as a precaution they put a milk warning on the label. I am very sensitive to dairy reactions and have never had a reaction to these bars. They are a bit pricey and not available everywhere (I got mine at Whole Foods) but they are very nice to have when you are craving chocolate. There are also a few kinds of baking chocolate chips that are gluten and dairy free.

God bless,

Mariann 

Chips: most things by Frito Lays (not Doritos), you can have: Lays Potato Chips, Wavy Lays Potato Chips, Cheetos, Fritos, etc. You can get a complete list at Open Original Shared Link

FritoLays Gluten-Free Products:

Last updated August 28, 2003

BAKED DORITOS

Important question as summer is here:

Does a Celiac with out DH need to wear a different sunscreen? If so, why?

Thanks for answering a rather simple question.....

-celiac3270

I know that Quaker Rie Cakes are gluten-free...kosher..I have no idea