Jump to content
  • 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

Sick Of Being Sick


Ebonyjade93

Recommended Posts

Ebonyjade93 Rookie

I'm 19 years old in June and since I was 16 I have had the same problems, my parents are both amazing with all this.

When I was 16 I started getting really bad acid reflux, I used to just put up with it, but then I started getting bloated, sore stomach and constipation. Since this started happening I'd get real bad anxiety when I felt sick.

So me and my mum went to the doctor, he suggested food intolerance, so then it was up to us to find this food that was causing so much pain and stress. I searched the net and I went on an elimination diet, my diet contained, fish vegetables and rice for about a week before adding things in, that was a tough week, I added gluten in first and I got bloated strait away, so then we cut it strait out.

I felt better not so tired and moody all the time, I was on it for about a year, until I failed and ate a piece of bread, and it did nothing, over a few months though I started feeling bloated all the time and I always felt so overweight, I'd have a flat stomach in the morning and as soon as I ate anything bammm bloated and gross, ready for the day :( it got worse and worse so I tried the diet again, I did not try hard enough and gave up after a month, not because of cravings, because I still didn't feel good.

Well, after that I went downhill, I'd have bad acid reflux, constant bloating, fatigue, sharp stomach pain, nausea and not being able to sleep properly, waking up at night and feeling so sick, so I'd lay infront of the tv to distract the stomach pains, I'd get chills, and ibs symptom. I've been to my dr since and, I got tested for h.pylori and ulcers got negative results and then he asked if I wanted to get an endoscopy, I said okay, not knowing that it will take 3 months to get in... The doctor suspected a Hiatal hernia.

But I have been researching and I match to celiac symptoms, I'm on my first week of gluten free, and I felt a lot better except for tonight as I have bad reflux.

I just need some help in knowing, am I doing the right thing, and will it get better?? I just want to feel better.

Sorry about the life story :P

Xx


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



Celiac.com Sponsor (A8-M):



tom Contributor

Surprised the Dr didn't mention celiac. Hiatal hernia & everything else fit.

3 months is awful long before next medical iteration. Is it possible to get in for a blood draw for celiac tests before your new gluten-free diet makes the testing highly unreliable. The tests don't work right w/out the gluten.

If the Dr doesn't consider celiac until after the endoscopy in 3 mos, he'll then have to put you on a gluten challenge to try to get valid tests (w/ high false negatives anyway) & if you really have celiac it'll probably be miserable or worse.

My point is I think you'll be far better off if your Dr knows ASAP that you suspect celiac & that you should have the blood panel asap.

Glad you're feeling better so far & hope it gets figured out for good.

Ebonyjade93 Rookie

Thankyou for the reply :)

How long is it until gluten gets out of the system, I will defiantly ring up and tell him what I suspect and get a blood test.

I have had strange symptoms aswell, like I bruise and burn real easy, my lips are always dry no matter what I do!!

My dr showed me where my bowel is and it's always in pain.

I didn't know that a hitial hernia was actually a symptom!!

Mateto Enthusiast

Oh my friend! I just went through an extremely similar experience!

Some doctors are quite ignorant, some are just lazy and don't want to help, and some don't know how to. Maybe you should look around for a coeliac-friendly doctor, someone who actually knows what they're doing?

But in that event, and you want to be tested, you will have to go back on gluten in order for it to show up on the results -- but if you don't want to, you don't need to. Some people need the diagnosis, some don't. I'm glad you're feeling better! Don't be afraid to ask questions - I still am.

Ebonyjade93 Rookie

Thanks mateto!!

I'm glad I'm not alone, but not glad for all the people who go through the same as we have. I was thinking about going to another doctor, my current doctor is good, but like you said, he may not seem to know, because I asked him

"do you think it's a food intolerance"

He said no.

So I think a new doctor might be the way to go.

As for testing, I don't mind knowing or not because my main priority is just feeling better!!!

But I hope you are feeling better, and I'd like to hear your experience with everything!!

MitziG Enthusiast

Celiac is very, very common, and it is a shame most doctors don't realize that. If you are to get tested, start eating gluten again now. Your antibodies drop very quickly. Make sure to request the specific list of tests you find on this forum- most doctors won't do all the tests. Lastly, keep in mind false negatives are very common. If the tests say you are not celiac, go back on the diet anyway!

Ebonyjade93 Rookie

Hey mitzyG thanks, if I do feel better idk if I would want to go back to eating gluten for the test, as long as I feel better I'm happy :)


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



Celiac.com Sponsor (A8-M):



Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,202
    • Most Online (within 30 mins)
      7,748

    PatBurnham
    Newest Member
    PatBurnham
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • trents
      NCGS does not cause damage to the small bowel villi so, if indeed you were not skimping on gluten when you had the antibody blood testing done, it is likely you have celiac disease.
    • Scott Adams
      I will assume you did the gluten challenge properly and were eating a lot of gluten daily for 6-8 weeks before your test, but if not, that could be the issue. You can still have celiac disease with negative blood test results, although it's not as common:  Clinical and genetic profile of patients with seronegative coeliac disease: the natural history and response to gluten-free diet: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5606118/  Seronegative Celiac Disease - A Challenging Case: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9441776/  Enteropathies with villous atrophy but negative coeliac serology in adults: current issues: https://pubmed.ncbi.nlm.nih.gov/34764141/  Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS.
    • Xravith
      I'm very confused... My blood test came out negative, I checked all antibodies. I suppose my Total IgA levels are normal (132 mg/dl), so the test should be reliable. Still, I'm not relieved as I can't tolerate even a single biscuit. I need to talk to my doctor about whether a duodenal biopsy is necessary. But it is really possible to have intestinal damage despite having a seronegative results? I have really strong symptoms, and I don't want to keep skipping university lectures or being bedridden at home.
    • Scott Adams
      They may want to also eliminate other possible causes for your symptoms/issues and are doing additional tests.  Here is info about blood tests for celiac disease--if positive an endoscopy where biopsies of your intestinal villi are taken to confirm is the typical follow up.    
    • Scott Adams
      In the Europe the new protocol for making a celiac disease diagnosis in children is if their tTg-IgA (tissue transglutaminase IgA) levels are 10 times or above the positive level for celiac disease--and you are above that level. According to the latest research, if the blood test results are at certain high levels that range between 5-10 times the reference range for a positive celiac disease diagnosis, it may not be necessary to confirm the results using an endoscopy/biopsy: Blood Test Alone Can Diagnose Celiac Disease in Most Children and Adults TGA-IgA at or Above Five Times Normal Limit in Kids Indicates Celiac Disease in Nearly All Cases No More Biopsies to Diagnose Celiac Disease in Children! May I ask why you've had so many past tTg-IgA tests done, and many of them seem to have been done 3 times during short time intervals?    
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.