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

New Here & Not Diagnosed (yet?)


melisap

Recommended Posts

melisap Newbie

Hello! I've been lurking for a bit gathering lots of great info here. :)

A bit of background with the necessary TMI, LOL. I'm 23, and the last few years I've struggled with diarrhea off & on and always kept a bottle of pepto bismol handy. The last several months, however, have been nothing but intestinal issues - painful cramping & diarrhea. After suspecting & cutting out lactose and seeing no results, I went to my primary care doc, who did the regular lab work, and saw nothing definitive. I've been referred to a GI specialist, with whom I have an initial appt with next week.

In the meantime, I've gone gluten free because I couldn't wait to see the dr while it may have possibly been something I could control. I was just in so much pain! It's been just over 2 weeks now, and the pain/cramping almost immediately went away. What a huge difference from being doubled over in pain the previous few weeks! I've also in the last week experienced some of my first solid stools in a while. :) I may not be celiac, but whatever I have is being further irritated by gluten, that's for sure! Unless I happened to randomly start feeling better with no gluten in my diet. :)

I know when I go to the specialist, I'll have to go back on a regular gluten filled diet to get an accurate test done, but until then I'm enjoying my pain free existence!


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



Celiac.com Sponsor (A8-M):



The Fluffy Assassin Enthusiast
Hello! I've been lurking for a bit gathering lots of great info here. :)

A bit of background with the necessary TMI, LOL. I'm 23, and the last few years I've struggled with diarrhea off & on and always kept a bottle of pepto bismol handy. The last several months, however, have been nothing but intestinal issues - painful cramping & diarrhea. After suspecting & cutting out lactose and seeing no results, I went to my primary care doc, who did the regular lab work, and saw nothing definitive. I've been referred to a GI specialist, with whom I have an initial appt with next week.

In the meantime, I've gone gluten free because I couldn't wait to see the dr while it may have possibly been something I could control. I was just in so much pain! It's been just over 2 weeks now, and the pain/cramping almost immediately went away. What a huge difference from being doubled over in pain the previous few weeks! I've also in the last week experienced some of my first solid stools in a while. :) I may not be celiac, but whatever I have is being further irritated by gluten, that's for sure! Unless I happened to randomly start feeling better with no gluten in my diet. :)

I know when I go to the specialist, I'll have to go back on a regular gluten filled diet to get an accurate test done, but until then I'm enjoying my pain free existence!

Welcome! You seem to have an unusually good handle on things celiac. You may want to see if the GI specialist is willing to diagnose you based on the response to the diet. From what I've read here, this is more likely if you can show a family history. Does anyone in your family show similar symptoms? Do you have any Irish or Italian heritage? (It's somewhat commoner among them.) It would be a shame to have to go back on gluten just to get an official diagnosis, especially as people seem to have to wait a long time for the biopsy.

You might also want to consider seeing an allergist. We seem to be prey to a lot of allergies, and it's nice to catch them while you're young.

Again, welcome, and good luck to you.

melisap Newbie

Thank you! I plan on talking to the GI spec about that - I'd rather not go back to it if i can avoid it, but I'll do what i have to do, I guess!

Archived

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


  • 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
    • Scott Adams
      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
      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
      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
      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...