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

Sick Of Being Sick

Ebonyjade93

Recommended Posts

Ebonyjade93 Rookie
Ebonyjade93
Posted

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
tom
Posted

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
Ebonyjade93
Posted
  • Author

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
Mateto
Posted

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
Ebonyjade93
Posted
  • Author

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
MitziG
Posted

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
Ebonyjade93
Posted
  • Author

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.

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


  • Member Statistics

    • Total Members
      127,977
    • Most Online (within 30 mins)
      7,748
    P Jackman
    Newest Member
    P Jackman
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121k
    • Total Posts
      70.5k
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Soleihey
      Long Story Of Neurological Symptoms And Lowish Ferritin- Could It Be Celiacs?

      By Soleihey · Posted

      How are you now?
    • Scott Adams
      Conflicting results

      By Scott Adams · Posted

      It's possible he's in the early stages of celiac disease, and it has been caught before villi damage. The blood test results so far do indicate possible celiac disease, as well as his strong family history of celiac disease. If his symptoms get better on a gluten-free diet this would be another strong indication. Personally I think it's definitely better to proceed on the safe side and go gluten-free, rather than to risk severe villi damage and all that comes with it.
    • Dora77
      Permanent Floating & Undigested Stools for a Year

      By Dora77 · Posted

      For some context: I have type 1 diabetes (T1D) (since 11 years) and celiac disease(since 4 years) For about a year now, I’ve been experiencing permanent floating and undigested stools. I’ve had a pancreas elastase test done. The first result was extremely low at 44, but a second test came back at 236. My doctor said that since one result is normal, it rules out pancreatic insufficiency because, according to them, elastase levels would always stay low if that were the issue. However, could the 236 have been a false result? My doctor also thinks I don’t have pancreatic insufficiency because I’m able to gain weight. I also get hgh injections as my bone age is younger than my real age, this also contributes to weight gain, so I dont know if weight gain can rule out malabsorption. But maybe if I had real malabsorption I wouldnt gain any weight even with hgh? For celiac, I’m on a gluten-free diet, but there might b small cross-contamination from things like pepper labeled as “may contain gluten.” or sausages which dont have gluten ingredient but say may contain. My doctor said that small amounts like this wouldn’t harm me and even mentioned that an occasional small exposure to gluten may not do much damage (which seems questionable since I thought even tiny amounts could be harmful). She also said that when Im older (Im m17) I could try eating small amounts of gluten and do antibody blood tests to see if I can tolerate small amounts or not. For reference, I’m asymptomatic when it comes to celiac, so I have no idea if I’ve been “glutened” or not. My first concerning celiac blood test was semi high IgA, then 3 months later we did a check up and my IgA was high so it was confirmed celiac. Since than I’ve had celiac antibody tests done yearly to see how my diet is going, and they’ve been negative, but I’ve heard those aren’t always reliable. I’ve never had a follow-up endoscopy to confirm healing. I also always kept eating „may contain gluten“ food. (I live in Germany so I dont know if „may contain gluten“ is as risky as in the usa but I suppose both are as risky) These stool issues started around the same time I was doing excessive heavy lifting at the gym. Could stress or lifting have triggered this, or is that less likely since the symptoms persist even after I stopped lifting? Occasionally, I’ll feel very mild stomach discomfort, but it’s rare and not severe. My doctor (also a dietist) said floating, undigested stools could still be “normal,” but that doesn’t seem realistic to me. Could this be impacting my vitamin or protein absorption? I also did a fructose intolerance breath test and had a high baseline of 20 ppm, but it never increased—only decreased over time. I fasted for 12 hours and didn’t eat fructose beforehand, but my stomach didn’t feel completely empty during the test. Could this mean the test was inaccurate? For lactose intolerance, I did the breath test but only fasted 10 hours and had eaten lactose prior because I wasn’t aware of the proper diet restrictions. My results were: 14, 12, 15, 25, 35, 40, 40 ppm—which would be considered positive. But given that I didn’t fast long enough or follow the right diet, could this result be unreliable? Has anyone else dealt with similar symptoms? What ended up being the cause for you? And sorry for the long text!
    • TerryinCO
      Status Update...

      By TerryinCO · Posted

      The Docs' and NP haven't committed to Celiac determination yet but say go gluten-free diet because...  And I have with improved physical results - feeling better; overall functions better, and more energy.  Still 10 pounds down in weight but I still have BMI of ~23.  It's been just over a month now gluten-free diet.  I'm fortunate I get along with diary/milk well and most other foods. I wanted ask about this site's sponsor, gliadin X.  If this is legit, seems like a good product to keep on hand. Though it says it's only a safety for incidental gluten contact - not a substitue for gluten-free diet. What's your input on this? This may be sensitive subject since they're a sponsor. I've used resources here and other sites for information, gluten-free food/product lists. So thank you for all that support. That's it for now - Stay warm...  -2F this morning in Colorado!
    • cristiana
      Increasing symptoms after going gluten free

      By cristiana · Posted

      I did suffer with gastric symptoms before diagnosis, but got all sorts of weird and wacky symptoms after going gluten free.   Things got much better once my antibodies fell to normal levels, but it took years (please don't panic, many people's go to normal levels relatively quickly when following a gluten-free diet). Causes of the symptoms you mention that I also experienced were iron supplements, a temporary dairy intolerance (this is common in coeliacs and should pass when your gut heals properly), and eating oats, as mentioned above.  Other symptoms I got were musculoskeletal pain after diagnosis, but again, once my coeliac blood tests were normal, I had no more pain. I did notice patterns emerging in foods that I reacted to and learned to steer clear of them, then gradually reintroduced them when my gut healed, such as soya, pure oats and dairy products.    You might like to keep a food diary. Cristiana
×
×
  • Create New...