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celiac3270

Firmly Gf With Continuing Symptoms

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Alexolua, under the directions, it says:

Adults 18 years or older

and then stuff about once a day, it may take 1-4 days to feel relief, though some feel better in 24 hours, etc.

Probably the reason I was scared of it was because I weigh so little, anyway. The doc. does know my weight, though, so I guess he should've taken that into account.

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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.

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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. :D

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celiac3270, yeah if yer seeing the doctor, best to be double safe and check with him. =)

I do know drugs that were for depression, were marketed to kids when they were only tested on adults. Assuming kids as little adults, but kids chemically have differences since they are still growing and developing, unlike adults.

That's why I speak up. Though I don't know if that practice continues, or happens with other drugs. But better safe than sorry!

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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

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I don't know about Splenda, but I know for sure Stevia is gluten-free. I have no problems with that.

Karen


Karen

positive bloodwork, positive biopsy

Celiac, collagenous colitis, hypothyroidism

endometriosis (at age 20)

spinal stenosis (early 20's)

Biopsy August 2006 confirmed complete villous atrophy despite being gluten-free for years and bloodwork within range showing compliance with diet. Doctor has confirmed diagnosis of Refractory Celiac Sprue.

Endoscopy also showed numerous stomach ulcers, have started taking Losec.

Mother to Eileen 13 yrs

Rhiannon 8 yrs

Daniel & Connor 6 yr twin boys......

"Joyfulness keeps the heart and face young. A good laugh makes us better friends with ourselves and everybody around us."

Orison Swett Marden

Laughter is the shortest distance between two people.

-- Victor Borge

"An optimist laughs to forget. A pessimist forgets to laugh."

Tom Nansbury

"Doctor to patient: I have good news and bad news. The good news is that you are not a hypochondriac."

Unknown

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I've been using Splenda since it came out and have had no ill effects. I must drink 6 to 8 cups of tea (both herbal and caffenated) and use Splenda for all of them. Plus, I have it in my drink at lunch ( the Sparkling Rain). I'm more afraid of the side effects associated with aspertame although I do drink that in diet pepsi. I measured out one time how much sugar I would ingest if I didn't use the artificial sweeteners and it came out to over 1/2 a cup a day! I guess that would impair my health too..... But, Splenda is rated gluten free with a caveat that sorbitol in excess can cause a laxative effect. I've never had diarrhea from it, but am pretty regular, maybe because of it. That helps with the constipation from lack of previously ingested fiber. I haven't tried olestra with celiac disease though. Wonder what that would do?


Terri

Northern Virginia

gluten-free since March 27, 2004

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I meant sucralose, not sorbitol, but sorbitol has the laxative effect. I don't know if they are related or not. All I know is Splenda is made from sugar and supposedly has no known side effects and is safer than aspertame. It is pricey though. I have also heard good things about Stevia but never tried it.


Terri

Northern Virginia

gluten-free since March 27, 2004

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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.

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Hi celiac3270.....

Sounds like you are at least doing the process of elimination for diagnosis....

Regarding the ulcers, there are numerous studies that show that ulcers are actually caused by the H-pylori virus (not sure about the spelling....) You can read up on it on a really good website I use quite often (for my four kids, especially), it is www.wrongdiagnosis.com

Type in ulcer for the "disease" and you will get lots of info about it.....

Have a great day!

Karen


Karen

positive bloodwork, positive biopsy

Celiac, collagenous colitis, hypothyroidism

endometriosis (at age 20)

spinal stenosis (early 20's)

Biopsy August 2006 confirmed complete villous atrophy despite being gluten-free for years and bloodwork within range showing compliance with diet. Doctor has confirmed diagnosis of Refractory Celiac Sprue.

Endoscopy also showed numerous stomach ulcers, have started taking Losec.

Mother to Eileen 13 yrs

Rhiannon 8 yrs

Daniel & Connor 6 yr twin boys......

"Joyfulness keeps the heart and face young. A good laugh makes us better friends with ourselves and everybody around us."

Orison Swett Marden

Laughter is the shortest distance between two people.

-- Victor Borge

"An optimist laughs to forget. A pessimist forgets to laugh."

Tom Nansbury

"Doctor to patient: I have good news and bad news. The good news is that you are not a hypochondriac."

Unknown

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Good luck with the endo, celiac3270! .. I hope that it's conclusive for you!

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Thanks.......at least this doctor is getting things moving, running tests, thinking of things that could be wrong, telling me to take certain meds to help with this. At least I've already had an endoscopy so I know what it's like........hmmm........I wonder if they'll put me out fully again or just half-way as it has happened with most here. It's a different hospital, so I don't know........haha......I feel like I live at the hopital......

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And the symptoms continue.....for the fifth day in a row, I have felt stomach twinges, which sometimes escalate and then subside.......noises from my stomach when the pains get worse..........so glad I have the endo. soon to find out what else is wrong with me -- it doesn't seem possible that all this is celiac disease symptoms continuing while my intestines heal.........no.......something else.......I just want to find out so that I can start to feel better...this really stinks and it grates on you and everyone around you when you're always hunched over and sick...... :(

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celiac3270, when is your endo?

Karen


Karen

positive bloodwork, positive biopsy

Celiac, collagenous colitis, hypothyroidism

endometriosis (at age 20)

spinal stenosis (early 20's)

Biopsy August 2006 confirmed complete villous atrophy despite being gluten-free for years and bloodwork within range showing compliance with diet. Doctor has confirmed diagnosis of Refractory Celiac Sprue.

Endoscopy also showed numerous stomach ulcers, have started taking Losec.

Mother to Eileen 13 yrs

Rhiannon 8 yrs

Daniel & Connor 6 yr twin boys......

"Joyfulness keeps the heart and face young. A good laugh makes us better friends with ourselves and everybody around us."

Orison Swett Marden

Laughter is the shortest distance between two people.

-- Victor Borge

"An optimist laughs to forget. A pessimist forgets to laugh."

Tom Nansbury

"Doctor to patient: I have good news and bad news. The good news is that you are not a hypochondriac."

Unknown

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