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 Celiac.com!
    eNewsletter
    Donate

Firmly Gf With Continuing Symptoms


celiac3270

Recommended Posts

celiac3270 Collaborator

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.

Link to comment
Share on other sites

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



Celiac.com Sponsor (A8-M):



celiac3270 Collaborator

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.

Link to comment
Share on other sites
kvandorselaer Rookie

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

Link to comment
Share on other sites
Alexolua Explorer

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!

Link to comment
Share on other sites
celiac3270 Collaborator
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

Link to comment
Share on other sites
Judithg Rookie

Terri,

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

Thanks,

Judith

Link to comment
Share on other sites
Canadian Karen Community Regular

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

Karen

Link to comment
Share on other sites

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



Celiac.com Sponsor (A8-M):



lovegrov Collaborator

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

Link to comment
Share on other sites
terri Contributor

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?

Link to comment
Share on other sites
terri Contributor

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.

Link to comment
Share on other sites
celiac3270 Collaborator

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.

Link to comment
Share on other sites
Canadian Karen Community Regular

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

Link to comment
Share on other sites
celiac3270 Collaborator

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

Link to comment
Share on other sites
celiac3270 Collaborator

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.....

Link to comment
Share on other sites
celiac3270 Collaborator

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

Link to comment
Share on other sites
GEF Explorer

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

Link to comment
Share on other sites
celiac3270 Collaborator

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......

Link to comment
Share on other sites
  • 2 weeks later...
celiac3270 Collaborator

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...... :(

Link to comment
Share on other sites
Canadian Karen Community Regular

celiac3270, when is your endo?

Karen

Link to comment
Share on other sites
celiac3270 Collaborator

September 13

Link to comment
Share on other sites

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      120,987
    • Most Online (within 30 mins)
      7,748

    happydays
    Newest Member
    happydays
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      120.3k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • TessaBaker
      It sounds like you're dealing with a complex situation, and I can understand how frustrating it must be not to have a clear answer. Gut health can indeed play a significant role in various aspects of our well-being, including hair health.
    • Celiac16
      I have found similar benefits from thiamine. I was diagnosed with celiac at 16 and never really recovered despite strict gluten and dairy free diet and no detectable antibodies on checkup bloodworks. I’ve tried stopping the b1 but start to feel bad again- I wanted my doctors to do more extensive testing for the different thiamine transporters and enzymes which would be a better indication if I was deficient or dependent on it but everyone dismisses it (there are know genetic mutations where you need to take it daily for life). I have looked into Thiamine Responsive Megablast Anemia and I have a lot of the more mild symptoms of the disease that manifest when thiamine isn’t given to the patient such as optic neuritis… I just find the parallels interesting. i think that celiacs could be a side issue of inflammation that resulted from vitamin deficiencies. I was eating a lot of sugar leading up to my diagnosis and since eating gluten free didn’t make me feel much better, I’m wondering if this was more the underlying issue (sugar heavily depletes b1). I usually take 1.5g thiamine a day.
    • Fluka66
      Thank you for your welcome and reply.  Yes I've been carefully reading labels looking for everything in bold and have been amazed by what I have seen. However Heinz tomato and basil soup is wheat free so I m thinking I already have ulcers?  The acid could be causing the pain . My pain always starts in one place then follows the same route through me . GP confirmed that is the route of our digestive system.  So much pain from stabbing to tearing. If I throw in milk with lactose it's horrific.  Many years of it now, won't go into details but been seeing a consultant for a supposedly different problem . Wondering what damage has been done over the years. Many thanks for your reply. Wishing you the very best.    
    • trents
      Welcome to the forum community, @Fluka66! Did you realize that the vast majority of all canned soups use wheat starch as a thickener, including such common commodities as Campbell's tomato soup?
    • Fluka66
      Hello. Any help would really steady my nerves right now. I realised recently that certain food left me in agonising pain so eliminated from my diet. I also have a swollen lymph node. My very caring Dr did some blood tests and I went back the other day to see another equally caring Dr . She looked at the test results one result has come back with something wrong. It came very fast so I'm afraid I didn't catch what it was. Anyway the urgent referral to ENT. She did say as I had already eliminated gluten it wouldn't say anything on the results and neither Drs nor I were prepared to reintroduce gluten . I've just had some tomato soup and again in agony only thinking this must have aggravated maybe existing problems. Does anyone know what I'm facing now ? My swollen lymph node , pain when eating gluten and lactose and I'm assuming the acidity of tomatoes triggering pain.  I'm trying to stay calm and to be honest I've been in intolerable pain at times rendering me unable to stand up straight but I've always just got on with it . Guess I'm reaching out and would really appreciate any wise or unwise words at this stage. Wishing you all the very best as you live with this illness. Fluka66  
×
×
  • Create New...