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

Does This Sound Like Celiac's?


wilsjel

Recommended Posts

wilsjel Newbie

Hello,

Probably like many of you, I have been through my round of doctors and have just been


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



Celiac.com Sponsor (A8-M):



leadmeastray88 Contributor

Hi there!

First off, you haven't really been diagnosed. A diagnosis requires a positive blood test, a positive upper endoscopy that shows blunted villi in your intestine, and for some doctors, a positive dietary response. Just because your gyne said 'try the gluten free diet', doesn't mean you have Celiacs!

Secondly, if you decide that you want to be tested you can't be on the gluten-free diet, or the results will be inaccurate.

Glad thats out of the way :)

Now for your symptoms...

Blood in your stool is NOT normal, whether its Celiac's or not. Did your gastro say anything about internal hemorrhoids? Those can cause blood in the stool intermittently, sometimes in large amounts. Are your BMs normal?

Localised pain is not uncommon. Many people who have Celiacs have been diagnosed with fibromyalgia first.

Stomach pain can definitely be attributed to Celiac. Is it cramping or nausea or indigestion? All of the above? The problem is that most gastro symptoms can indicate a wide range of different ailments.

And Yes - the disease can come on suddenly. Some people are diagnosed as children but many, many people here have had a 'trigger' set off theirs: stress, surgery, pregnancy, etc.

I wouldn't recommend going on the gluten free diet until you get tested. Otherwise, you may question yourself and end up putting yourself back on gluten anyway. Even then, you can't be sure the results will be accurate because you may have healed by then.

Feel free to ask lots of questions!!!

-Kim

wilsjel Newbie

Hi Kim!.. and thank you!

I understand needing the bloodtest- he told me it wasn't necessary and that I would know if I had Celiac's because of the way my body repsonds without gluten. Oh, doctors. But I have done a lot of reading about it and would really prefer to just get the bloodtest! (I may, especially since, like you said, being gluten-free would cause weird results). Which is also why I emphasized "diagnosed" - - I use that term very loosely! (=

My gastro did mention hemorrhoids, stating that they would show up in my flex sigmoid or colonoscopy - which both were completely clear. He also said he doesn't believe I have stomach ulcers. I requested an upper endoscopy, but he didn't think that was necessary at the time, since he was sending me to the gyno for possible gynological problems.

and.. THANK YOU!! I know blood is NOT normal and NO ONE else -except for my mom and I- thinks its a huge deal!. I just know something is going terribly wrong inside of my stomach.. but every single test keeps coming back negative..

As far as BM.. I can have up to 6 in one day, and sometimes go a couple of days without having one. It just depends - I have diarrhea, not a daily basis, but most definitely on a weekly basis. I will eat something and then 30 minutes later be heading to the restroom. My stomach is also EXTREMELY sensitive to beef. Any type, any way that it's cooked, it does not agree with my stomach AT ALL. (the gyno related this to celiac's by saying that it was perhaps what the beef was cooked in...)

Also, my BM - no matter what type - are always painful.

I never have nausea, but also have never, ever had that problem throughout my entire life.

I have severe cramping of my lower GI area on a daily basis.

I don't know.. things just aren't adding up to Celiac's for me- but I have to remind myself that I didn't go to school for 8+ years to become a doctor...

I really was convinced that I had endometriosis of the bowels but my doctor said that it was unlikely because one of my bleeding episodes was when I was not on my period - and that spots where you have endometriosis only bleed when you're currently on your period. (two out of the three episodes were). He also has me on continuous birth control, which he believes will stop the rectal bleeding if I do have endometriosis cells on my bowels. He also thinks that the cells would have shown up on my biopsies from the flex sigmoid and the colonoscopy or that my doctor would have been able to see it on the walls of my colon..

Anyways, thanks again for your help. Like I said, any input is much appreciated!

leadmeastray88 Contributor

Wow...I am so sorry you are having so many health problems! I am also a 19 year old female and I can understand (and sympathize) with the frustration you must feel.

The only thing I can say now is that you're obviously having this gut feeling about it not being Celiacs. Usually, your gut is right. I think you should really try and insist the testing to your doc because if you go on the gluten free diet, you might start doubting yourself and wonder if that really is the cause to all your problems. I mean, nothing is keeping you from starting the diet once the testing is over, just to give it a shot. Atleast you can tell yourself that you've done everything possible to get a proper diagnosis.

As for me, my doctor refused, and I mean refused to scope me because I've had 7 surgeries in the past 2 years and didn't want to put me through that added stress. Getting into another GI would take atleast 6 months for me and I couldn't wait that long. I opted for Enterolab, where they do stool testing to test for gluten sensitivity and many other sensitivities. You could do that too!

In any case, I hope you find your answers soon. Make your doctors do what you want - they work for you! Take care!

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,560
    • Most Online (within 30 mins)
      7,748

    kristenrachelle
    Newest Member
    kristenrachelle
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):




  • Who's Online (See full list)


  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • petitojou
      Thank you so much for sharing your experience and I found myself giggling with happiness as I read how your body reached such spring! And I hope that your current journey is also successful!! Definitely starting the food diary! So many amazing advices. And it’s very scary. It really hits all our soft spots as well as our confidence system. Most doctors I went thought I was underage despite being in my late 20s. Right now I look like am I twelve, but is also this body that’s taking so much, so I might as well love it too! Going to make the necessary changes and stay in this path. Thank you again! 🫶
    • petitojou
      Thank you so much for the information and kind message! Reading this transformed how I’ve been viewing my efforts and progress. Guess there’s still a lot to celebrate and also heal 😌  Yes, I’ve been taking it! Just recently started taking a multivitamin supplement and separated vitamin D! I also took chewable Iron polymaltose for ferritin deficiency 2 months ago but was unable to absorb any of it.  Thank you again! Hearing such gentle words from the community makes my body and heart more patient and excited for the future. 
    • ckeyser88
      I am looking for a roomie in Chicago, Denver or Nashville! 
    • Scott Adams
      Your post demonstrates the profound frustration and isolation that so many in the Celiac community feel, and I want to thank you for channeling that experience into advocacy. The medical gaslighting you endured for decades is an unacceptable and, sadly, a common story, and the fact that you now have to "school" your own GI specialist speaks volumes about the critical lack of consistent and updated education. Your idea to make Celiac Disease a reportable condition to public health authorities is a compelling and strategic one. This single action would force the system to formally acknowledge the prevalence and seriousness of the disease, creating a concrete dataset that could drive better research funding, shape medical school curricula, and validate the patient experience in a way that individual stories alone often cannot. It is an uphill battle, but contacting representatives, as you have done with Adam Gray, is exactly how change begins. By framing it as a public health necessity—a matter of patient safety and protection from misdiagnosis and neglect—you are building a powerful case. Your voice and your perseverance, forged through thirty years of struggle, are exactly what this community needs to ensure that no one else has to fight so hard just to be believed and properly cared for.
    • Scott Adams
      I had no idea there is a "Louisville" in Colorado!😉 I thought it was a typo because I always think of the Kentucky city--but good luck!
×
×
  • 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.