celiac3270

Thanks for the site.......funny name

I've heard a bit more from my doctor, so I'll fill everybody in. Okay, first off, as you all know by now, I've still been having symptom troubles.....and my GI was terrific in diagnosing, but utterly useless with the post-diagnosis stage of celiac. So I recently switched doctors to a celiac specialist. He has been great. Now, these were a few possibilities:

- Cyclic Vomiting: a migraine-related thing that manifests itself in vomiting--I'm not sure about the abdominal pains. One thing that makes him think that is that my pediatrician thought I had that when I had stomach troubles...he might have been right...additionally, I used to; not so much anymore, see spots, kinda, when I was sick -- as sign of cyclic. Anyway, if this is the case, there's nothing to do about it, but wait. You're supposed to outgrow it and if I had it, I should be outgrowing it already.

- Gallbladder: Karen mentioned the possiblity of something with my gallbladder. I mentioned that to him and he said that that would be quite a possibility. Then he asked if I had had a sonogram, which I had, and therefore, he said, it would've already been found. So that's no longer

- Ulcers: Just something I saw written all over, so I brought that up. He said that that is a possibility.....I don't know how you test that or how you treat it, so if someone could fill me in on that, it would be appreciated.

.........I don't remember everything, but I guess I just haven't been paying attention to the dairy since my focus is on acid and sugar. I think cutting out the ACID has helped tremendously....I just feel better than I did...I don't know if this is just in my head. BTW, I am to continue taking Prilosec OTC twice a day. That about brings us up to date . If my symptoms don't get better after....maybe a year, perhaps sooner, I think I'll start an elimination diet.....start off with veggies, meats, potato.....see how it goes.....then slowly incorporate a few items each week and if it gets bad, target individual items..............at this point I don't want to limit myself more than I have to.....if I lose my patience I'll try that.

Ruth,

I simply e-mailed all these companies cause I had a lot of time on my hands with a computer and nothing else to do . I tried to think of a lot of companies that I could e-mail. I do not eat Ben and Jerry's ice cream, although I have had Haagen Dazs. The doctor is focusing on a few things that he thinks could be causing my problems. Actually, I should probably be a little more strict or observant with dairy consumption and symptoms.

Actually, I've heard a bit more from my doctor, so I'll fill everybody in. Okay, first off, as you all know by now, I've still been having symptom troubles.....and my GI was terrific in diagnosing, but utterly useless with the post-diagnosis stage of celiac. So I recently switched doctors to a celiac specialist. He has been great. Now, these were a few possibilities:

- Cyclic Vomiting: a migraine-related thing that manifests itself in vomiting--I'm not sure about the abdominal pains. One thing that makes him think that is that my pediatrician thought I had that when I had stomach troubles...he might have been right...additionally, I used to; not so much anymore, see spots, kinda, when I was sick -- as sign of cyclic. Anyway, if this is the case, there's nothing to do about it, but wait. You're supposed to outgrow it and if I had it, I should be outgrowing it already.

- Gallbladder: Karen mentioned the possiblity of something with my gallbladder. I mentioned that to him and he said that that would be quite a possibility. Then he asked if I had had a sonogram, which I had, and therefore, he said, it would've already been found.

- Ulcers: Just something I saw written all over, so I brought that up. He said that that is a possibility.....I don't know how you test that or how you treat it, so if someone could fill me in on that, it would be appreciated.

.........I don't remember everything, but I guess I just haven't been paying attention to the dairy since my focus is on acid and sugar. I think cutting out the ACID has helped tremendously....I just feel better than I did...I don't know if this is just in my head. BTW, I am to continue taking Prilosec OTC twice a day. That about brings us up to date . If my symptoms don't get better after....maybe a year, perhaps sooner, I think I'll start an elimination diet.....start off with veggies, meats, potato.....see how it goes.....then slowly incorporate a few items each week and if it gets bad, target individual items..............at this point I don't want to limit myself more than I have to.....if I lose my patience I'll try that.

Good point, crc0622.

I have another list ......this one from Haagen-Dazs

Thank you for your email requesting nutritional information on H�agen-Dazs�

products. In an

increasingly health-conscious society, we are always happy to answer your

questions about our

products.

As a general rule, the gluten in any of our ice cream, frozen yogurt or

novelty products is present

only in added bakery products such as cookies or shortcake. In most cases

the ice cream itself

contains no gluten. Gluten is never hidden under the term "natural

flavors".

We have sent a current flavor list, upon which any flavor that contains

gluten is so designated

with the letter "G". We hope that this information will be helpful to you.

Please feel free to call

our toll-free number should you need any further information. Our

representatives will be happy

to help you.

We value our consumers and hope you will continue to enjoy our products.

Please watch for our

follow-up response to arrive shortly, along with a flavor list and recipes.

Sincerely,

Angela Brem

Consumer Response Representative

Ref # N1591665

=====================================================

For money saving coupons join our H�agen-Dazs� Rewards at

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I got another reply, this one from Dannon. I think it's funny that they mention celiac.com. Anyway, it's pretty much just the plain ones, though for any dieting celiacs, the lowfat and nonfat are gluten-free.......often, lowfat and nonfat products contain gluten, so that's good news.......although I'm trying to gain weight.

August 24, 2004

Thank you for contacting The Dannon Company, Inc. We sincerely appreciate

your

interest in Dannon yogurt products and gluten.

Dannon yogurt products are characterized as either gluten safe or not gluten

safe. Our

Dannon Plain Lowfat, Plain Nonfat and Plain Natural are all gluten safe.

All other

Dannon yogurts cannot be designated as gluten safe because the natural

flavor systems

used might have ingredients added to stabilize the flavor. The stabilizing

ingredients may

be derived from gluten sources.

For our valued consumers that may have allergenic risks associated with

gluten, our

products are not specifically formulated to contain gluten but we cannot

guarantee that

the alcohol portion of the natural flavor system is always derived from corn

and not from

wheat, oats, rye and barley.

We hope this information is helpful to you. As an additional resource, you

may wish to

visit the website: www.celiac.com. Once again, thank you for contacting

Dannon.

Sincerely,

Lisa Moore

Consumer Service Representative

Ref#:624459

Kraft doesn't have a food list. Their American cheese is, however, gluten-free. I use it all the time for grilled cheese. I also use Kraft parmesan cheese and mozzarella. All gluten-free........

By the way, you can tell if Kraft products are gluten-free by looking at the label. Just look for wheat, barley, malt, rye, etc. anywhere on the label. Natural and artificial flavors are gluten-free unless they say: natural flavors (wheat) or something.

Yeah.........i was thinking about that and i'd rather get sick from gluten than die or have something really bad happen to me just because teh doc. couldn't give me gluten

I don't know.......it might depend on the person, but I'm not. Besides my celiac disease symptoms, I can't remember the last time I had the flu or some other stomach problem. Last year around Christmas, everyone in the seventh, eighth, and ninth grades at my school was getting sick from some flu-like thing. My class of 20 depleted to 4........I was one of the four. So, it might affect some people, but I seem to be okay (knock on wood).

How's he taking it? Anyway, welcome to the board, Matthew!.........hope the diet helps with his symptoms.

I got Nestle's list...it's annoying that all the candy lists that I don't really care about come before the others.......... ......anyway, notice the way Nestle puts it: attached is the allergen information you requested......ALLERGEN! It's not an allergy! Anyway:

August 24, 2004

Dear Nestl

I don't use one, but probably should...I just haven't thought about it in awhile. Even if a doctor did look at it and think "it's just an allergy", they would have to take it seriously. What if this wheat "allergy" caused a severe and potentially deadly reaction? They wouldn't know the severity of the reaction it would cause, but if you're wearing a bracelet about it, they'd have to take it serioiusly.

I don't know...........I hadn't heard of that.........

Yes... speaking of gluten in pet food... I'm just glad that dogs and cats aren't celiac (that we know of)... I couldn't think of a single brand that would be safe. Thank you for mentioning it, as I would not have even considered being that a contamination source! We have a mini-zoo.. cat, dog & parrot!!

I'll admit that I did a double-take when I saw the topic.. thinking it was implying human ingestion! Hahahahaa!

LOL

A few FAQs on Ben and Jerrys:

Gluten-free Flavors

  Question

  Do you have a list of your gluten-free flavors?

  Answer

  We do not have a list of gluten-free flavors. Sorry! The ingredients that we use change quite often. We do not want to claim a flavor is gluten-free, then have that list become outdated and the recipients not aware of the latest changes.

Ben and Jerry

I was afraid of getting that reaction from Kraft...........I explained in my e-mail that I was aware of that policy............too bad. As for Heinz and Hormel, I didn't bother to check the FAQs; I just had one e-mail that I copied into every e-mail form and sent off -- it was faster that way. Thanks for the info., though

The tootsie gluten-free list....remember all products are subject to ingredient change:

Thank you for contacting us.

Ugg...it's also good that you are unhappy to be back on the gluten diet. Now when you go back you won't miss those foods anymore. I can't imagine going back on gluten, especially at this point -- just to eat that stuff would require great willpower for me. Good luck.

Today I didn't have much to do so I thought of a few brand names and shot out e-mails for gluten-free products. I'll list the companies I contacted below. I already got one reply, from Tootsie (makers of Tootsie products, charm products, cambridge brands, and cella confections). They sent me their list in word document format....if anyone wants their list or any others I get, ask me and I'll forward the e-mail......or post the list here.....

Minute Maid

Kraft

Yoplait (subdivision of Kraft, so that e-mail didn't matter)

Hershey's

Nestle

Mars (milky ways, M&Ms, etc.)

Tootsie Roll Industries

Hormel

Boar's Head

Heinz

Duncan Hines (part of Pinnacle Foods Corporation, a company that also makes products such as Aunt Jemima syrup (gluten-free).

Campbells

General Mills

Dannon

Pinnacle Foods Corporation

I plan on e-mailing some ice cream companies later. I was really bored so I did this, but if these lists can help anyone, I'd be happy to forward or post them. The word document list from Tootsie is in a weird format, so I'll have to make it work in the post form here, but I'll post it later when I have time. I also got a reply from Hormel.......their list is in their FAQs at:

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-celiac3270

Charlotte,

When you make a post in a forum, the post won't be on the first page. It will actually go near the back of the section. Once a moderator reads your post and makes sure it's in the right section, he or she will pin the topic, thereby moving it to the front of the section. Here is your lost post:

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-celiac3270

I never heard of Snapple-A-Day........I drink Ensure to get more calories, vitamins, protein, fat, etc., but if Snapple-A-Day has great health benefits, is gluten-free, and tastes good, I might try that. Thanks for posting.

Interesting idea...........I've thought of reducing my diet to nothing and building slowly to look for problems..........that's a good idea for you to do that...........I'm going to give it a few more months, though, and if I still feel bad and the doctor doesn't know what to do, I might try that. Good luck and good idea .

-celiac3270

since i havn't ate any gluten for two weeks i'm thinking it could be 1 of three things:

coffee (i drink 3-4 cups a day)

dairy (i'm a dairy freak)

eating to big of meals at a time ( i usually get sick after the bigger meals)

i was hoping somebody could give me some advice on how to eat early on in the diet. i dont enjoy plain things at all....i really love rich thick sauces,cheese and spicey food. if i had to cut those out i'm not sure what i would eat.

I completely agree with you on the last two possibilites.....I don't know about coffee. If you've only been gluten-free for two weeks, that could be the culprit, regardless of whether you have a casein/lactose/dairy problem or not. I think the last suggestion might be the most likely. Our digestive systems are raw from all the gluten, and we need to be REALLY careful with them in the beginning. Six months in, I am still not digesting things properly. I have symptoms and when I vomit, there are chunks (I apologize for my descriptions) from meals hours ago, which show digestive problems. If you have vomiting, check for chunks of food, as those signify undigested food, I think, and also note how long after your last meal. Definitely, try to spread out your food throughout the day whenever possible so you don't overload your system. This may not be medical, but I think it helps a lot. One more tip, try to stay away from foods that seem harsh on your stomach such as highly acidic foods or rich, thick, spicey things. Those couold be giving you problems. Try to be as natural and careful as you can be and slowly reintroduce the thicker, heavier things as you feel better. Finally, be 100% sure about everything including lotions (if you eat anything with your hands), toothpaste, medicine, etc. Don't lick envelopes (the glue stuff can contain gluten) and be very careful about contamination. Good luck.......I hope this helps and you feel better soon.

-celiac3270

I feel better knowing that some celiacs do experience the "vomit and be done" (sorry!) reaction

Yep...the one other celiac that goes to my school has the vomit and be done" reaction.

Hey! I have to tell you that i was diagnosed 3 years ago this week ( i only know because i was so sick and in the hospital), and I am just now getting rid of most of the symptoms you have described. I can only say that it really does take time for your body to adjust and not have the bloating, vomiting, ridiculously uncomfortable feeling.. hang in there cuz it will get better. 

Wow, kvandorselaer.........3 years?!?! And I think six months is a long time. Sorry it took you that long, but thanks for sharing that.

I will be seeing my doctor this week.....my mom wants to ask him about possible problems.......gallbladder as Karen sugested, ulcers? I don't know much about these, but maybe the doctor could tell me. Thanks for your concerns, Alexolua, I'll ask him.

-celiac3270

I should probably also mention that I'm using Prilosec OTC, not the prescription. The doctor fully realized that it was 20 mg. and recommended the dosage of two daily. I'm going back to him, this week, I think, cause he goes on vacation at the end of the week, so I can double check on that. Perhaps, on the over-the-counter version they try to be more cautious with labelings? I don't know.....I think I can trust the doctor, but I'll ask him about that.