celiac3270

Oh, about the malrotation:

Malrotation of the intestines happens when the fetus is still inside the mother and is usually spotted by doctors shortly after birth. In my case, they missed it entirely and it took them fourteen years to find it. What should happen with the intestines is that sometime during the development stage inside the mother, the intestines should push outwards, make a twist, and pull back in. Basically, my intestines pushed outwards, didn't twist, and moved back in--this part of the explanation is confusing to me, but the rest makes more sense.

Anyway, since they weren't rotated properly, my intestines occasionally (in my case every 5-9 days) twisted over each other, resulting in tremendous abdominal pain, not allowing any food to get through, and often, therefore, resulting in vomiting. This gives you a few ideas of symptoms: bad abdominal pain and vomit (green vomit, especially). They would then untwist many hours later and I ate and felt normally again. This was hard to diagnose in me at this age since first off, it should've been spotted much earlier if I had it and since the symptoms were similar to what could be celiac symptoms--the stomach aches, gas, nausea, etc. I was fortunate that in fourteen years, it never got so serious that the intestines coiled around a vein or artery, stopping blood flow--then they would've been taking out actual organs and putting artificial stuff into my body.

In the surgery, they stretched my intestines out so that there would be little chance of them ever twisting again in what is called the Ladds procedure. Finally, they took out my appendix, because they said it was in the wrong spot. Therefore, if I ever got appendicitis, the doctors would never find it, since my appendix wouldn't even be where it should--better to be safe than sorry.

Some links:

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Oh, shoot--I'm sorry. I forgot about additional allergies: dairy, soy, yeast, eggs, etc. If it's the milk chocolate, I bet it has dairy in it. Let me check: Modified whey, soybean oil....I don't even need to go any further than that. There's the dairy (whey) and the soy...sorry! I should have looked before I posted that.

I can't think of any appropriate prayers (I'm not terribly religious...just spiritual, perhaps, so I don't know many "official prayers"), and don't have any poems. What I can say, though, is that we'll be thinking about you and many of us have been through at least one, in some cases, both of these tests--and we survived. We'll be thinking hard for you on Friday and wishing you the best. Just remember when you go into the tests that you'll have a group from here praying for you or sending positive waves your way. Keep us posted....

Hershey's will list all gluten on the label and the following I know are gluten-free: Butterfinger, Snickers, Milky Way Midnight (NOT regular), Reese's PB Cups, Tootsie Rolls, Tootsie Pops, Charm Blow Pops, M&Ms, Skittles, Starburst, Jolly Ranchers.........

Heinz Ketchup is gluten-free.

There are extensive product lists at Delphi Forums and there's a Mac Sholland list...don't have the link from where I'm posting.

It is very unlikely that you have refractory sprue. Doctors will often throw around that term when your antibodies aren't going down, but it's so rare. Usually you're consuming some hidden gluten and that's throwing it off....go through everything: toothpastes, foods, possible sources of contamination...maybe go back to just fruits, veggies, potatoes, etc...thinks you know are gluten-free and build from there

Hey, thanks for the support everyone!

In a lot of books & websites they say to have a support group to help you.

I find that is ture! It's tough doing this alone. I appreciate the advice as well.

I have so many questions it's overwhelming. Right now I'm just trying to read as much information as I can to better educate myself with this. I figure: the more I know, the easier this will be.

(I'm trying to stay positive )

It sounds like you have the right attitude. I live in New York City where I know I could find support groups where you meet with people in person, but I love this site and this is the best support group I've found! I agree with you 100%, too about educating yourself about celiac--that's the attitude everyone should have when starting this diet .

If you can pick out some of the most important questions, I'm sure we can help. It might help just to post a numbered list of things you don't understand or need links for or whatever.

I agree--there's no way I would intentionally eat gluten at this point--even for the sake of other celiacs who may be hoping for a cure.

I'm skeptical--we've heard things like this in years past that never ended up working. Besides which, we're better off not eating all the food we were before.

Additionally, Dr. Green, in a radio segment awhile ago, made some comment how he estimates that about a decade from now there will be a pill that will reduce/ameliorate the reactions celiacs have to gluten accidents--he didn't seem to think a cure would be coming anytime soon.

I agree also in that I wouldn't want to go back to eating gluten, either. Though I think there's no way we'd convince future celiacs who would just want their bagles back and not realize how much healthier this is.

For hot chocolate, also, the Swiss Miss milk chocolate packet is gluten-free.

I drink Lipton--the regular teabag (decaf or regular) is gluten-free.

Yes--the forum stats are at the bottom of the main page. You'll notice, though, if you go to "members", which is near to the "search", "help", and "view new posts" options--that most of the members don't have any posts--or have 1-5-- -- and tend to just read the threads.........so there aren't more than a couple hundred members who are actually posting somewhat regularly, I think.

Cool Whip is made by Kraft, though, so any gluten must be clearly listed on the label. Of course, once the spoon goes from the strawberry shortcake back into the container, it's contaminatd. You should keep separate jars/containers of everything: peanut butter, jelly, butter, etc. unless you can be 100% sure that you don't double dip with gluten containing foods.

Every softdrink made by Pepsi, Co. is gluten-free--that includes Pepsi (all versions: diet, caffeine-free, etc.), Pepsi Twist, Pepsi Wild Cherry, Mountain Dew, Slice, and everything else I forgot . Coca-Cola will send you a product list if you e-mail them. I don't happen to have that list on hand, but all varieties of Coke are on it (Classic, diet, caffeine-free, etc.), Coke with lemon, Sunkist, and many, many others. Always be careful with fountain drinks, as sometimes those "supermarket colas" are used instead of actual Coke or Pepsi, so you could get glutened that way. Also, they sometimes use a syrup, then add a ton of a white powdery stuff (that looks like sugar, but you have to be really careful if it doesn't come in a can or bottle.

Welcome--do print those lists Kaiti provided--

-celiac3270

In food in the US, maltodextrin is always okay. In prescriptions/medication, it is questionable. Outside the US, there are no guarantees.

I know....so soon if it actually worked. Two sad things, though:

• We'd be relying on a pill when we could feel fine through dietary restriction and no drugs.
  
• Boards such as this one, though not becoming obsolete, would be less popular, since people could just pop pills....and we wouldn't make all the friends that we have on here
  

I know this was joked about before , but apparently, eating gluten-free is the new fad:

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Another possibilitiy for that miracle pill--for celiac and diabetes:

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Yes, it does get much easier and much more natural. It will never get easy--you're always worried about contamination and reading labels, but it does get better. Do you have any specific questions?

Just found out something about antibodies and how often you need to make mistakes to be at risk for problems:

It takes 4-6 weeks for gluten antibodies to go down (that means, you can test a week or two into a gluten-free diet, but not long after. It also means that if you're making one mistake each month, you're at serious risk for the problems of untreated celiac: osteoporosis, cancer, etc. Just thought it would be interesting to share--

My mom has been on WW for awhile, so I sorta know the jist of it. With the flex plan, you have a certain number of points, based on your current weight. You can determine the number of points in a food from the calories, fat, and fiber. So you have your daily alotted points and then the flex plan gives you 35 extras to use throughout the week any day you want.

The core plan is where you can only eat things from a list they give you, but you can, within reason, eat as much of them as you want until you're satisfied. Then, also, you have 35 points to use throughout the week. The advantage to core is that much of it is natural and basically most processed food is cut out.

Thank you for taking the time to contact us here at Cracker Barrel Old Country Store. We appreciate receiving your inquiry and we do understand your concern.

We are aware that some folks do suffer from gluten intolerance. It is our understanding that, depending upon the person, there are many levels, types, and degrees of gluten intolerance. Please find below a short list of menu items that do not have added glutens:

Two things bother me there:

A) There aren't varying degrees of celiac--you have it or you don't--only symptomatic sensitivity varies.

B)They say this is a list of items that don't have any "added" gluten...sounds like a cover-their-back (euphemism) statement. So is there gluten in something already?

Yay! I'm so glad she liked it . It's a little chewy while it's hot--if it sits awhile, the crust starts to get a little harder...I think it actually tastes the most like "real" pizza if you heat it up the next day....I like it both ways, though. I've never put cheese in the crust, but that might make it a little chewier....

Four are, according to a FritoLays nutritionist: regular Lays, Ruffles, Fritos, and Lays Stax

I think you can have gluten intolerance, which isn't full-blown celiac--but you still need to be on a gluten-free diet, regardless.

Of course, you can have allergies to wheat or rye, etc., but that's completely unrelated to celiac disease.

Dr. Green is the number one celiac specialist in the country and he's associated with Columbia Presbyterian--the most prestigious doctor you can go to--I'm only 14, so I'm too young to see him and my GI only works with children/teens, though he's fabulous. That's the only doctor recommendation I can give you, though Columbia Presbyterian is the most celiac-knowledgable hospital you can go to.

1% of the population has celiac. 97% of celiacs don't know they have it...this is a widespread and not-well-known disease. I think everyone would be better off getting tested since it's so common, but especially if you have the common symptoms, which you do: stomach pains, diarrhea, nausea, etc.

Good luck with the diet!

There are two things I believe you need to do after diagnosis to be successful and get your health back on track: accept your diagnosis (which you seem to have already done, but many go into denial) and educate yourself on the disease as much as possible. Reading old threads in this forum is a great way to start. I'd also highly recommend getting a few books on celiac. Two good ones are:

Wheat-Free, Worry-Free (by Danna Korn, a big celiac author)

Against the Grain (by Jax Peters Lowell)

I didn't buy any books upon diagnosis--researched everything on the internet, but I wanted to learn something new on celiac and I've read close to all of the threads on here, so I got both of these books today and love them.

For internet research, besides the posts on this board, go to the site index on celiac.com, where you can get forbidden and safe ingredient lists, articles, etc.

Finally, ask questions! That's the whole reason this board exists, anyway. Welcome!

-celiac3270

I think it's best to talk to the chef. If you can't explain it as well as you can to a waiter or give him a restaurant card that could be given to the chef. Basically explain about cross-contamination, hidden sources of gluten, and what would be safe for you.

In restaurants providing a gluten-free menu, such as McDonalds, Arbys, etc., you just need to make sure you order the right thing, mentioning the importance of avoiding contamination.