Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Firmly Gf With Continuing Symptoms

celiac3270

By celiac3270
in Coping with Celiac Disease

Recommended Posts

celiac3270 Collaborator
celiac3270
Posted
  • Author

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.

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


celiac3270 Collaborator
celiac3270
Posted
  • Author

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.

kvandorselaer Rookie
kvandorselaer
Posted

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

Alexolua Explorer
Alexolua
Posted

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!

celiac3270 Collaborator
celiac3270
Posted
  • Author
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

Judithg Rookie
Judithg
Posted

Terri,

I thought Splenda potentially had gluten in it. Is it for sure gluten-free?

Thanks,

Judith

Canadian Karen Community Regular
Canadian Karen
Posted

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

Karen

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


lovegrov Collaborator
lovegrov
Posted

Splenda is gluten-free but in some people can cause gluten-like reactions, such as diarrhea. This happens even in people who don't have celiac disease.

richard

terri Contributor
terri
Posted

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 Contributor
terri
Posted

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.

celiac3270 Collaborator
celiac3270
Posted
  • Author

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.

Canadian Karen Community Regular
Canadian Karen
Posted

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

celiac3270 Collaborator
celiac3270
Posted
  • Author

Thanks for the site.......funny name :lol:

celiac3270 Collaborator
celiac3270
Posted
  • Author

I think the Prilosec OTC is really helping me.........I feel much better. Besides, the doctor said, if I had ulcers (I think that's what he said....if not, something else), I would be taking Prilosec, anyway.....

celiac3270 Collaborator
celiac3270
Posted
  • Author

Endoscopy scheduled for September 13 to make sure my intestines are healing and also an opportunity to check for ulcers..........

GEF Explorer
GEF
Posted

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

celiac3270 Collaborator
celiac3270
Posted
  • Author

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......

  • 2 weeks later...
celiac3270 Collaborator
celiac3270
Posted
  • Author

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...... :(

Canadian Karen Community Regular
Canadian Karen
Posted

celiac3270, when is your endo?

Karen

celiac3270 Collaborator
celiac3270
Posted
  • Author

September 13

Archived

This topic is now archived and is closed to further replies.

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      128,225
    • Most Online (within 30 mins)
      7,748
    Sandra diggs
    Newest Member
    Sandra diggs
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.1k
    • Total Posts
      70.7k
  • Celiac.com Sponsor (A22):



  • Who's Online (See full list)

    • There are no registered users currently online
  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Ryangf
      For people with celiac disease and corn intolerance from it: Is salt still okay for most people?

      By Ryangf · Posted

      I haven’t had any noticeable reactions to salt so I will continue using it. I think I just freaked out when I realized this but it doesn’t cause me any discomfort- so thanks!
    • plumbago
      Abscesses on legs

      By plumbago · Posted

      Ok, thanks. I'm so glad to hear you are in the hands of a dermatologist. I hope he/she has given you 1) a diagnosis; and 2) a plan of care with a couple of options so that you have buy-in and comfort with it. I have some ideas, but not having seen the abscesses or you in person, it doesn't really make sense for me to kind of ... speculate further. But your question was regarding gluten, and you've gotten a couple of other follow up questions and answers that are good, including the idea to keep a food diary. Let us know if we can help further or answer any other questions. I'm sorry you're going through this, it sounds very painful.
    • LookingForAnswers101
      Abscesses on legs

      By LookingForAnswers101 · Posted

      @plumbago They appear as boils. They are big, like the size of a nickel--quarter, and they hurt when I touch them. I have gone to the same derm for them over and over and she thinks my body is colonized by a bacteria, but even after using hibiclens all over my body they come back.
    • Scott Adams
      Abscesses on legs

      By Scott Adams · Posted

      Welcome to the gluten-free community! It’s great to have you here. While gluten sensitivity or celiac disease can indeed cause skin issues, such as dermatitis herpetiformis (a blistering rash), abscesses in areas like the lower buttocks or thighs are less commonly linked directly to gluten. However, chronic abscesses could be a sign of an underlying immune or inflammatory condition, which might be worth discussing with a healthcare professional. Some people with gluten-related disorders also experience secondary issues like bacterial overgrowth or immune dysregulation, which could potentially contribute to recurrent infections. It’s always a good idea to explore all possible causes, including gluten sensitivity, with your doctor. In the meantime, keeping a food and symptom diary might help identify any patterns. Wishing you the best on your health journey!
    • trents
      Abscesses on legs

      By trents · Posted

      You say you have gluten sensitivity? Have you been officially diagnosed with celiac disease or do you refer to NCGS?
×
×
  • Create New...