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

Symptoms, Diagnosis, and education.


Mont82

Recommended Posts

Mont82 Newbie

A little over a year ago I started to experience digestive issues. My stomach and Anus would burn, I would have really bad pain in my stomach. I went to the e.r at Jefferson health and they diagnosed me with acid reflux and was prescribed pepcid. The pain continued and gradually got worse until it was excruciating, the pain would be so bad that i would get a hot flash and my whole body would sweat and my whole body felt like it was on fire. I would get tons of gas and an uncomfortable feeling in my lower stomach and anus. I went to a g.i at Temple northeastern hospital and she ran some blood tests, a colonoscopy, and a upper endoscopy. She diagnosed me with celiac because my vitamin d was low along with other counts being low. I have been on a gluten free diet for almost a month. Last night I had a baked potato with cheddar cheese and my stomach felt like someone clamped my intestines with a pair of plyers and twisted them. I felt gas so I tried to pass gas but it still hurt. Every time I would pass a stool my stomach would hurt worst and my anus would burn bad. I need to know if it really is celiacbor something else?


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



Celiac.com Sponsor (A8-M):



squirmingitch Veteran

First off welcome to the club you never wanted to be a part of.

Second, you should get copies of the results of your labs -- all of them including the pathology & write up of your colonoscopy & endoscopy. You should always get & keep for your own records, copies of medical records, labs & other tests.

Did she take biopsies during the endoscopy? How many? From what areas? What did the pathology say? How about the blood tests? Was there a celiac panel? Was it the completed panel (6 tests) or a partial & what were the results along with reference ranges? What all vitamins did she test for? Results & reference ranges?

You state that she diagnosed you on being low in Vitamin D & "other counts being low". I'm not trying to harass you or be difficult but when you term it like that, we have not much to go on. I know you're new to this whole thing and I know you're scared & no doubt hurting but you have to give us something to go on when you ask if it's really celiac or something else because for some reason, your GI has dx'd you with celiac -- we need to know that reason & not go on vague info..

Third, you've only been gluten free 1 month. That is NOT enough time to heal & you can easily have ups & downs until your villi heal so last nights baked potato & cheddar may not be the culprit. However, having said that, you may also have a problem right now with digesting (breaking down) the lactose in the cheese because your villi are damaged & the tips of the villi (the 1st to be damaged) are the part that deals with lactose (dairy products).

Fourth, you need to make sure you know exactly how to keep yourself safe & that you are indeed eating gluten free & not getting cross contaminated (cc'd). 

Fifth, for now, take it easy. All fresh or frozen fruits, veggies & meats. Ditch the dairy for now. Cook everything to death -- veggies get cooked to mush -- easier to digest for now. You see?

 

GFinDC Veteran

Hi,

Welcome to the forum! :)

Celiac disease affects the small intestine, not the large intestine.  So pain from the large intestine could be a symptom of something else.  That something else could be an additional condition that you have on top of celiac disease though.

So, yes, getting all your test results is important.  It could be you are making too much acid and or the acid in your gut isn't being neutralised.  The acid in your stomach is neutralized by bile created in the liver and released by the gallbladder into the gut.  People with celiac seem to have gallbladder problems fairly often.  So that might be a good thing to ask about having checked.  They do a test called a HIDA scan to verify the gallbladder is functioning correctly.  Sometimes doctors will remove the gallbladder but that's not a great thing to do.  If the gallbladder is not too damaged it is better to remove the irritant (probably gluten) and let the gallbladder heal itself.  That isn't always feasible but sometimes is.  Your GI doctor can best advise you.

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
  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - Scott Adams replied to Butch68's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Guinness, can you drink it?

    2. - MogwaiStripe replied to Midwestern's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      15

      Gluten Issues and Vitamin D

    3. - Butch68 posted a topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Guinness, can you drink it?

    4. - trents replied to Xravith's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      17

      Taking Probiotics but Still Getting Sick After Gluten – Advice?


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,211
    • Most Online (within 30 mins)
      7,748

    MogwaiStripe
    Newest Member
    MogwaiStripe
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Who's Online (See full list)

    • There are no registered users currently online
  • Upcoming Events

  • Posts

    • Scott Adams
      This is a very common question, and the most important thing to know is that no, Guinness is not considered safe for individuals with coeliac disease. While it's fascinating to hear anecdotes from other coeliacs who can drink it without immediate issues, this is a risky exception rather than the rule. The core issue is that Guinness is brewed from barley, which contains gluten, and the standard brewing process does not remove the gluten protein to a level safe for coeliacs (below 20ppm). For someone like you who experiences dermatitis herpetiformis, the reaction is particularly significant. DH is triggered by gluten ingestion, even without immediate gastrointestinal symptoms. So, while you may not feel an instant stomach upset, drinking a gluten-containing beer like Guinness could very well provoke a flare-up of your skin condition days later. It would be a gamble with a potentially uncomfortable and long-lasting consequence. Fortunately, there are excellent, certified gluten-free stouts available now that can provide a safe and satisfying alternative without the risk.
    • MogwaiStripe
      Interestingly, this thought occurred to me last night. I did find that there are studies investigating whether vitamin D deficiency can actually trigger celiac disease.  Source: National Institutes of Health https://pmc.ncbi.nlm.nih.gov/articles/PMC7231074/ 
    • Butch68
      Before being diagnosed coeliac I used to love Guinness. Being made from barley it should be something a coeliac shouldn’t drink. But taking to another coeliac and they can drink it with no ill effects and have heard of others who can drink it too.  is this everyone’s experience?  Can I drink it?  I get dermatitis herpetiformis and don’t get instant reactions to gluten so can’t try it to see for myself. 
    • 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.
×
×
  • 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.