• Join our community!

    Do you have questions about celiac disease or the gluten-free diet?

  • Ads by Google:
     




    Get email alerts Subscribe to Celiac.com's FREE weekly eNewsletter

    Ads by Google:



       Get email alertsSubscribe to Celiac.com's FREE weekly eNewsletter

  • Announcements

    • admin

      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease?  Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes
0
celiac3270

Firmly Gf With Continuing Symptoms

Rate this topic

Recommended Posts

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.

Share this post


Link to post
Share on other sites
Ads by Google:
Ads by Google:


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.

Share this post


Link to post
Share on other sites

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

Share this post


Link to post
Share on other sites

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!

Share this post


Link to post
Share on other sites
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

Share this post


Link to post
Share on other sites

Terri,

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

Thanks,

Judith

Share this post


Link to post
Share on other sites

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

Karen

Share this post


Link to post
Share on other sites

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

Share this post


Link to post
Share on other sites

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?

Share this post


Link to post
Share on other sites

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.

Share this post


Link to post
Share on other sites

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.

Share this post


Link to post
Share on other sites

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

Share this post


Link to post
Share on other sites

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.....

Share this post


Link to post
Share on other sites

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

Share this post


Link to post
Share on other sites

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

Share this post


Link to post
Share on other sites

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......

Share this post


Link to post
Share on other sites

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...... :(

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now

0

  • Forum Statistics

    • Total Topics
      108,915
    • Total Posts
      943,492
  • Member Statistics

    • Total Members
      67,087
    • Most Online
      3,093

    Newest Member
    Denise Fertig
    Joined
  • Popular Now

  • Topics

  • Posts

    • Apologies for my over-reaction.  As the shampoo exposure was only for a couple week or so, I doubt any lab tests would have indicated exposure. Unfortunately, since I didn't have the antibodies, I can only rely on my symptoms to tell me if I've been exposed. I'm fortunate enough that eliminating gluten (and dairy) from my diet completely fixed my problems. I have had no lingering systems, and now that I have been gluten free for a while, when I do get gluten I have a very clear reaction (and a distinct reaction to dairy) that follows a fairly predictable timeline. This has accidentally been tested a couple of times. For example, early on before I was better at reading labels I grabbed some cookies at the grocery store that I thought were gluten free (the company produces both a normal and gluten-free version, and this was before I learned to avoid shared facilities). I had grabbed the wrong bag but I didn't figure it out until about a week of feeling crappy had passed and I went searching for a culprit. Things like this have happened a couple of times, where I accidentally did a blinded experiment on myself. The symptoms are consistent, and resolve once I remove the offending item. So when I recognized my symptoms as the result of gluten, I went looking for a culprit and I found the shampoo and conditioner. I removed them and then I got better.  My problems are largely systemic. I wouldn't be surprised if I don't actually have celiac but some other immune mediated reaction that hasn't been defined, but calling it celiac is the best way to get people to take my needs seriously (which I'm sure you understand). Unfortunately, my problems don't seem to fit into any particular diagnostic bucket, so I've learned not to rely on the official medical terms and just go with what works. I'm lucky to have had doctors who think the same way, else they might have told me that I didn't need to go gluten free once I failed to show clear-cut celiac. Maybe I'm pre-celiac, maybe it's the much maligned NCGS, or it's all related to leaky gut (I am eagerly awaiting the FDA approval of larazotide so that I can get a doctor to give me some, I think it might do me a lot of good). All I know is that when I went gluten and dairy free it literally changed my life.  In general it seems that gluten exposure causes a generalized inflammatory response. I get some inflammation in my gut that manifests as reflux, acid indigestion (what I call "fake hunger"), and a little bit of urgency and unpredictability with regards to bathroom needs, but if that were the only problem, I think I could live with it. I also get headaches, brain fog, my depression/anxiety gets triggered to a scary degree, arthritis, muscle aches, and then, the clincher, muscles spasms in my upper back and neck that have been known to lay me out for a couple of days while I wait for the muscle relaxants to help me heal. The muscle spasms, arthritis and brain fog are the most recognizable and are usually what cue me in that I got glutened, especially the spasms.  Again, sorry for being oversensitive. I should have known better, since this is such a supportive community.  
    • I appreciate your point. However, constancy of my celiac symptoms indicates that I have had the disease for at least three years - while I have never experienced any food allergies in that time. Although I will keep an eye on any emerging allergies, I believe my current fatigue is due to nutritional deficiency, because the only exogenous change in my life style has been the transition to gluten free diet.   Yes, I certainly need to keep a food diary. Thanks again for the advice.
    • In many cases no.....I consume heavy magnesium foods like pumpkin seeds, cocoa nibs etc....and still need 2-3x the dose of magnesium recommendations. Going on more of what poster boy said. You dose magnesium to tolerance with citrate like Natural Vitality Calm you start off small partial doses and slow ramp up....it can hit you hard causing gas and D if you go to quick into it. You dose citrate to tolerance meaning you slowly up your dose til you get loose stools...then back down a bit. You should have vivid dreams with a good dosing....also if it becomes to harsh or you can not handle citrate there is Doctors Best Glycinate...it does not have the gut effects at all...but the dreams and how much it makes you relax is more more felt.   ...with this disease you can have a food intolerance or allergy crop up out of the blue....like no where. You have a autoimmune disease....celiac it effects your immune system and can make it really wonky. Like it seems to always be on guard like a sleep deprived sentry on stim packs...jumps at everything and shoots it. If you get sick, eat something odd or harsh you system might red flag it as a issue for awhile and go bonkers....keep a food diary and try a food rotation in the mean time...OH as a example to this, I was fine with chia seeds last week...I got a cold over the weekend....same bag, same brand same way....withing 30mins I now puke if I eat them...new intolerance.....I also am finding jalapenos/paprika making it sleepy tired....so I am removing them both for a few months from my diet and changing to other sources for fats/fiber and vitamin A/C til I get over that issue.....these things just happen. https://www.mindbodygreen.com/articles/are-food-sensitivities-for-life
    • Hi Isabel, Your body needs nutrients to grow.  Nutrients not absorbed well when we have celiac disease damage in our guts.   But, if you do a good job of avoiding gluten, the gut damage should heal and you will be able to absorb nutrients again. The thing to remember is celiac disease is an immune system reaction.  Immune reactions are very sensitive and just a tiny amount of gluten can get them going.   And they can last for months.  So it;s very important to avoid all gluten all the time, to keep the immune reaction down.  Keeping the immune reaction down keeps the damage down, and the healing can keep up. You may start to grow more if you can absorb nutrients better.  Some extra vitamin pills might be a good idea.  Your doctor should know.  
    • Thank you Gail for your response. Of course one should be mindful of the possibility of food allergies but I don't think that's the case with my current situations. Save for gluten containing product, everything I eat now I used to eat before with no reaction whatsoever. I think my issue is more likely to be deficiency in minerals and such.
  • Upcoming Events