celiac3270

The bad part of all this is that we're spending 3 times the price on food. Luckily, there's only the 2 of us. I can't imagine feeding a large family gluten-free unless you had to. I don't have a Gluten problem that I know of, but I've lost about 25lbs on this lifestyle change. Hopefully, eating this way, my husband and I have added on an extra 15 or so years to our life span.

Going out to eat is a real challenge and very expensive. No fast food palces for him. Full service is about the only way to go so he can special order his food. Why is it so expensive to eat healthy and take care of yourself???

Yep....I'm the older of two children in a family of four. I'm the only celiac in my family, so nobody else eats gluten-free, not because the food is horrible or anything, but simply because it is soooo expensive. It is a challenge to eat out. About fast food places, McDonalds fries are gluten-free....cooked in oil that is used only for the fries and hashbrowns. TGI Fridays has a gluten-free menu, as do PF Changs and many other places I can't remember. It is difficult, though, to eat out...nobody gets it....it's rather funny and disturbing at the same time when you ask about gluten and people think you're talking about sugar (glucose).

-celiac3270

Before I started the diet, five months ago, I was constantly sick and I felt really depressed (not technically/medically depressed, but felt down all the time). In addition, I was noticing an increasing irritability -- I'd snap at people for no reason. Since starting the diet I'm a lot less irritable and sad....even though I still have symptoms....so I think it's the gluten that got me mad and sad, even if I didn't know it at the time.

-celiac3270

I wouldn't see any nutritionist who wasn't an active member of a celiac support group. I would ask if s/he goes to meetings, meets with celiac patients regularly, etc.

Makes sense....I went to Anne Lee (a nutritionist who works with Dr. Green; one of the most famous celiac doctors in the US). I don't know if she goes to support groups, but she tries out her gluten-free stuff on family (who aren't celiacs, but still used as guinea pigs ). I trusted her, especially since she works for a really famous celiac dr..........

-celiac3270

Rian,

If you find something in your post that you want to change, you can click on the "edit" button where you read the thread. I think it's in the upper right next to "report" and "quote". I nearly always edit my posts after finding grammatical errors or wanting to add something I forgot...

Getting back to the main question: THERE IS NO WAY YOU CAN LET YOUR DAUGHTER CHEAT EVER! The tiniest crumb will mess up her intestines. Although she won't feel the pain that I and many others would feel from it, her intestines will be messed up. Cheating, even annually, will have a long-term effect; it is imperative that ALL gluten be cut out of your daughter's diet. Although she may not feel abdominal pains, later in life she'll feel the effects of cheating: osteoporosis or cancer. In addition, giving her gluten once yearly might tempt her, and she might start to think, if I can have it once on my birthday, why can't I have it twice a year....or three times, etc....and then in the teenage years she might feel it's acceptable to eat gluten while being with friends, etc. You can't let her do that.....keeping her on a 100% diet would be the best thing you could do for her and she'll appreciate it when she doesn't come down with Celiac symptoms decades later. No gluten is tolerable -- otherwise, why would we all go to the trouble to segregate pots, pans, and toasters? Don't do it!

-celiac3270

Celiacs have internal symptoms at the slightest crumb of gluten....and some have external symptoms with one crumb, as well. Most doctors would recommend at least a month, usually 2-3 months of gluten. 2 months would probably be fine. Of course, all this depends on how much gluten your daughter has daily. Two meals for two months would do it.

Hi Deb,

Moderators can't remove posts themselves. Therefore, you should probably PM Scott (admin) or e-mail him at scott@gluten-free.com. We can't remove your post, but he could. You could e-mail one of us, anyway, but we'd just have to relay it to Scott.

Now, if your post is part of a thread.....and isn't that important so people wouldn't notice it's gone, then you could click on "edit" and just remove the part of your post you don't like. I'm sure Scott could remove your post if you really want it completely gone (I think it's called pruning), but this would be an easy alternative for you and you wouldn't need to explain to anyone what or why you want removed.

-celiac3270

With my nutritionist, I was already 2 months in or something, so I knew what I could and couldn't eat. Therefore, a lot of the basic stuff wasn't helpful. She did, however, recommend some products that were gluten-free.....unfortunately, many contain significant amounts of dairy. So, it wasn't as helpful as it could've been, but then again, I was already too far into the diet for it to be amazingly useful. I know you've already gone, Jill, but I just wanted to post my experience, anyway...

Glad you were satisfied and got helpful tips/recipes/suggestions.

-celiac3270

All flavors are gluten-free and all Propel Flavors are gluten-free

Propel, too? And Jessica mentioned Powerade...cool......I don't drink that stuff often, so I never bothered to call, but this is great to know.

-celiac3270

Eddie,

You're probably just a celiac without a lot of symptoms -- bloating, plus bloodwork, plus a biopsy would mean you surely have it, I would think. Some celiacs have no symptoms; you have very mild ones.

I e-mailed the Coca-cola company a few days ago...over the weekend to find out whether or not "Fanta" is gluten-free....they're researching it. I also asked for a complete list of gluten-free products. I have seen softdrink questions on the board, so I thought it might be nice to post their reply:

Thank you for contacting The Coca-Cola Company.  We appreciate the opportunity to respond to your question.

We can tell you that we do not add gluten to any of our products and can assure you that in the U.S. Coca-Cola classic, caffeine free Coca-Cola classic, Coca-Cola C2, Diet Coke, diet Coke with Lemon, Diet Coke with Lime, caffeine free Diet Coke, Sprite, Sprite ReMix Berryclear, Diet Sprite, Vanilla Coke, Diet Vanilla Coke, Cherry Coke, Fresca, and our 100% juice products (without added ingredients) are gluten free.  However, due to our expanded variety of products and the unique ingredients found in many of them, we find it is necessary to investigate the gluten status of many ingredients used in the over 300 Coca-Cola products offered in the U.S.  Though we are unable to speculate as to the exact time frame involved in the research, we will contact you as soon as we have gluten information on Fanta Orange.

As with all medical conditions, we would suggest that you consult with your healthcare provider to determine the appropriate foods for your dietary needs.

We thank you for your patience, as well as, your patronage of Coca-Cola brand products.  If you have additional questions or comments, please visit our Web site again. 

Jennifer

The Coca-Cola Company

Industry and Consumer Affairs

-celiac3270

I e-mailed about all coca-cola products...one of the Sprite Remixes is gluten-free...some berry thing I think....here's the e-mail:

Thank you for contacting The Coca-Cola Company.  We appreciate the opportunity to respond to your question.

We can tell you that we do not add gluten to any of our products and can assure you that in the U.S. Coca-Cola classic, caffeine free Coca-Cola classic, Coca-Cola C2, Diet Coke, diet Coke with Lemon, Diet Coke with Lime, caffeine free Diet Coke, Sprite, Sprite ReMix Berryclear, Diet Sprite, Vanilla Coke, Diet Vanilla Coke, Cherry Coke, Fresca, and our 100% juice products (without added ingredients) are gluten free.  However, due to our expanded variety of products and the unique ingredients found in many of them, we find it is necessary to investigate the gluten status of many ingredients used in the over 300 Coca-Cola products offered in the U.S.  Though we are unable to speculate as to the exact time frame involved in the research, we will contact you as soon as we have gluten information on Fanta Orange.

As with all medical conditions, we would suggest that you consult with your healthcare provider to determine the appropriate foods for your dietary needs.

We thank you for your patience, as well as, your patronage of Coca-Cola brand products.  If you have additional questions or comments, please visit our Web site again. 

Jennifer

The Coca-Cola Company

Industry and Consumer Affairs

I don't see why not....celiac disease isn't contagious....as long as you're in good health, I see no reason why you shouldn't be allowed to donate blood.

Dr. Cynthia Rudert, one of the top celiac doctors in the country, puts ALL of her new celaic patients on probiotics just in case of bacterial overgrowth. She doesn't even look for it (it can be hard to diagnose), she just puts her patients on probiotics. Many patients who have come to her diagnosed with refractory sprue turned out to have bacterial overgrowth.

One probiotic she mentions is Culturelle because it's gluten-free, OTC, and doesn't have to be refrigerated.

richard

Wow...thank you for the information, Richard! ....I got an appointment with this new Celiac doctor for August 3rd...yay! I'll definitely mention this to him.

-celiac3270

I've been researching and came up with SIBO (small intestine bacterial overgrowth)....I made a post in this forum on it, but here's an article.........this could be why some of us aren't better...this article is from Celiac.com

Bacterial Overgrowth of Small Intestine Common in Treated Celiac Disease  See your ad here!

T-Shirts:

 

Dig Liver Dis. 2002 Dec;34(12):846-50.

Celiac.com 07/12/2004

I've been a little over 5 months on the diet.....not better yet. It could be that I have lactose, casein, or some sort of dairy intolerance. However, I've been researching on possible things: could it be bacterial overgrowth? If so, antibiotics could be the answer......there are a lot of articles I found on google, and here's one from Celiac.com.....I'm posting because I might have it, but also, others on the board that still have symptoms after an extended period of time despite great adhearance to the diet might have it, as well....there's the article from Celiac.com:

Bacterial Overgrowth of Small Intestine Common in Treated Celiac Disease

Celiac.com 07/12/2004

The companies just use natural or artificial flavorings at the end of their labels, usually, when they have a lot of ingredients that they use very little of.......and yes, you do need to check with the company to make sure they do not contain gluten. Perhaps the company uses that to keep a "secret recipe" a secret. Both are just broad terms that allow the companies to avoid mentioning ingredients. It's very frustrating to see that on a label, but it's on nearly everything.

The only company you don't have to call about natural/artificial flavorings is Kraft. If nat. or art. flavorings contain gluten, such as wheat, they'll write it in parentheses after the flavoring: natural flavorings (wheat). If you don't see that, the flavorings are fine. This rule only applies to Kraft.

-celiac3270

It's a big risk and I guess that goes for the ones in the grocery store that are so convenient for a quick and easy dinner. This to me is the hardest part of the disease, the risk of cross contaminiation, whether it's in a restaurant's kitchen, your friend's kitchen or even your own child's kitchen.

It's difficult when you KNOW that things are gluten-free, but you're unsure of cross-contamination issues...........it's also very annoying...

I don't know of any links, but on Jessica's group....USA Silly-Yaks, there was a post on cross-contamination that I think came from Delphi Forums....it's really informative, so I saved it.......I'll copy it below:

Help with kitchen cross-contamination

Here are cross-contamination potentiel issues

1. Replace toaster/toaster oven. Never use the same toaster/oven that

gluten products have been used in.

2. Replace all cutting boards. Old boards may be kept separate for

use with gluten foods.

3. Replace wooden or teflon cooking utensils. Old untensils may be

kept separate for use with gluten foods.

4. Replace porous pots/pans/skillets. Teflon and cast iron are porous

and retain gluten from past cooking.

5. Replace pans with seams. Past gluten products can easily be

retained in the seam.

Never wash gluten and gluten-free dishes in the same dish water.

Use disposable rags/sponges if your kitchen is not totally gluten-free.

8. Many issues one forgets to look at: can openers

colanders

pets (food, licking)

stamps, envelopes

stamp hinges (for collectors)

lipstick

toothpaste

9. Very important: silver drawer: there are always crumbs there.

10. shared tables, like at work. I frequently sit down to have lunch

& find someone else's sandwich crumbs all over.

11. Perhaps remembering to wash your hands before eating finger food.

I know our moms always told us to do this, but it's easy to forget.

There are so many potential contaminants in the house, especially for

those of us with pets or kids, that you might not even realize you've

touched something that's potentially dangerous.

12. bulk bins at the grocery: it has one of the most cross-

contaminated potentiel.

One has to ask the owners to put some aside when they have a new bag.

13. At school: Gym class was held in the multi-purpose room

(lunchroom) where kids had just eaten breakfast. Custodians swept the

floor after breakfast, but didn't wash it. My son crawled around on

the floor during gym class, wiggled his loose teeth...gluten.

Kids met for chess club in the library during lunch, so they ate

their lunch in the library. Crumbs on the carpet get on little

fingers.

Kids eat snacks in the hallways. Crumbs get tracked into the

classroom. Five year olds spent a lot of time crawling on the floor.

Some brands of play "clay" (ex. Rose Art) contain gluten. Some finger

paints also do. Check out all art supplies used in the art room and

in the classroom.

14. the conveyor belts at the checkout counters in supermarkets: for

ex.: leaking flour bags, etc

A few things....first off, some Celiacs have no signs at all; osteoporosis is a long-term symptom associated with celiac disease and diarrhea, even periodically, is a sign. You are by no means a non-symptomatic Celiac......

For Ketchup, you can get some of those special organic kinds, or just stick with Heinz. I don't have a complete list, but someone else might, or it might be available online. I have, however, called the company: their ketchup is gluten-free. Not sure if you were just using that as an example or if it was a question .

You mentioned having a hard time eating regular non-gluten-free stuff after hearing all this bad stuff about the effects of gluten on the body....two things regarding that: first, I felt exactly the same way when I first saw the board in Feb. and then had to stay on gluten until my biopsy. Second, that is actually a terrific sign; after all, if you're having trouble eating gluten-containing foods when you're told to, then not eating them when you're told to be gluten-free shouldn't be an issue....you won't be tempted.

Your final point, about not thinking about hidden gluten: that's fine....it'll click, eventually. I think that for non-celiacs or people without allergies or intolerances, eating is just.....sort of automatic.....something you don't really think about and something that you're not always conscious of. You just need to break that habit.....thinking about obvious sources is the first step, then you'll soon train yourself to be careful of everything you touch and everything that enters your mouth......you may not catch everything at the start, but you'll learn fast.

-celiac3270

It's a good idea in theory, the idea of a variety of foods, some of which are fine, but, I, too, have witnessed cross-contamination occuring and have seen the cheese in the peaches and the utensils used in various foods.

Doctors' opinions differ....2-3 months might be what the average doctor would say.....try 2 meals a day if you're going to do it.

Hmmm.....I think how long you've been on the diet is a big part of it....gluten-free since March.....that's four months, then.......hmmm........I've been gluten-free five months and going back now would not be something I'd want to do. I, personally, don't think I'd do it. From what I've heard (with similar instances), Enterolabs might be a good idea.......never tried Enterolabs but almost everyone praises their testing. Talk to your doctor about it.................you don't need to eat gluten for it to work.

-celiac3270

Well, I won't be much help here...but...

I have heard that ringing in the ears is caused by a vitamin deficency. But, alas, I don't remember which vitamin. I know, I know, I am sooooooo helpful!

Deanna

That's helpful ....after all, you're confirming Mariann's idea of a nutritional deficiency. I have had that ringing before, but very infrequently........I don't have it anymore........so I'm the one that isn't of much help

Crest toothpaste is gluten free. I use it all the time without any adverse reactions.

Smith

I use Crest, also.

Kathleen,

Thank you for your reply...a good point made: the soap is rinsed off, anyway. Surprisingly, my immune system was never really bad in the first place....for example, there was a TERRIBLE flu going around the upper grades of my school last December. My seventh grade homeroom normally had 20 kids and dropped to a mere 5....I was one of the five. An eighth grade class of 20 dropped to 3, another dropped to 8, and another seventh grade class went from 20 down to about 12.....it was crazy. I was so suprised to be one of the few standing....I think my immune system was never really that bad, but my celiac symptoms got me sick, instead. I get fewer colds now than I did before the diet, but I never had that many, anyway.

-celiac3270

On the way back, someone suggested that we go and have a dinner in a good pizza restaurant that he knew. Then I had to explain that I will not be able to eat anything there because I cannot eat anything that contains milk or gluten. Then one of the guys said: