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

Self-Diagnosed Celiac


canadiangeek

Recommended Posts

canadiangeek Newbie

hello 😀

i am a 44 years old male, even though i had bad bowel movements for years now, Celiac disease never occured to me, after 3 weeks of real stomach pain and discomfort and diarrhea 4 times a day i decided to inform myself.  All The symptoms were there for a few years.... physical and psychological ( i became angry a lot and very impatient, which was totally not me ) i've been eating gluten free for 2 weeks now and the improvements are amazing ! i screwed up twice so far, still learning, and as soon as i eat gluten the symptoms are back... it's amazing and scary. 

my question is, when i ate gluten ( stupidly ) is it normal that the cramps/pain and diarrhea are really bad and took a few hours to appear ?

 

Thanks ! 


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



Celiac.com Sponsor (A8-M):



trents Grand Master

Yes, that is totally normal. Works that way for me. I think that is about the time it takes for food to move from your stomach into your small bowel.

canadiangeek Newbie
11 minutes ago, trents said:

Yes, that is totally normal. Works that way for me. I think that is about the time it takes for food to move from your stomach into your small bowel.

That's good to know, thanks! I was wondering cause i was surprised to the intensity of it and that it took a while for the symptoms to appear.

Scott Adams Grand Master

Hi @canadiangeek, welcome to the forum! You might find these articles helpful:

 

 

trents Grand Master

Earlier this year my wife made some gluten-free biscuits for me and some wheat biscuits for herself and put them in separate zip lock bags. She penned her name on her baggie and my name on mine. The biscuits themselves looked almost identical. Just before turning in for bed I got hungry and ate two or three of her biscuits by mistake before I happened to read the name on the baggie. I got ready for bed and lay down and felt fine. Woke up two-three hours later with intractable nausea and intense abdominal cramps for 2-3 hours followed by several hours of diarrhea. 

canadiangeek Newbie
48 minutes ago, Scott Adams said:

Hi @canadiangeek, welcome to the forum! You might find these articles helpful:

 

 

Thank you so much !!!!

35 minutes ago, trents said:

Earlier this year my wife made some gluten-free biscuits for me and some wheat biscuits for herself and put them in separate zip lock bags. She penned her name on her baggie and my name on mine. The biscuits themselves looked almost identical. Just before turning in for bed I got hungry and ate two or three of her biscuits by mistake before I happened to read the name on the baggie. I got ready for bed and lay down and felt fine. Woke up two-three hours later with intractable nausea and intense abdominal cramps for 2-3 hours followed by several hours of diarrhea. 

That's pretty much what happend to me, sudden and intense. do cramps last long usually ?

GFinDC Veteran
(edited)

@Trents, That will teach you to pilfer her biscuits! :)

@canadiangeek,

Hi CG,

Welcome to the forum! :)

It sounds like you figured out your health issue.  But you may not be aware of the testing process for celiac disease.  If you want to be diagnosed by a doctor you need to be eating gluten for 2 weeks before the endoscopy or 12 weeks before the blood antibody tests.  A doctor's stamp of approval isn't important to all people but for some it is.  The blood tests look for gliaden antibodies.  The endoscopy is to check for gut damage in the small intestine.

Going back on gluten for testing (a gluten challenge) is often pretty unpleasant so we try to encourage people to get tested before going gluten-free.

It may be difficult to get an endoscopy right now with the pandemic going on and medical workers being so busy.

Celiac disease is an auto-immune condition.  When we eat gluten, it causes an immune reaction by the body.  Those immune cells are happy to stick around for weeks or months to protect you from evil gluten.  The way they protect you (in their misinformed opinion), is to attack the cell structures (villi) that line the small intestine.  This villi damage causes malabsorption of nutrients and leads to deficiencies.  Untreated (eating gluten) celiacs can be low on B and D vitamins, iron, copper magnesium, A, and several other minerals/vitamins.

Symptoms from a glutening can last for 6 weeks or more.  We tend to notice symptoms faster after going gluten-free.  Also, even tiny amounts of gluten (wheat, rye, barley proteins) can trigger the immune reaction.  Our immune systems kill germs and other bad small stuff when they aren't busy trying to kill our guts.  So the immune system is very helpful and powerful.  Usually...

You may still have enough antibodies active in the bloodstream to get a positive blood test right now.  But it would have to be checked real quick.

Edited by GFinDC

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



Celiac.com Sponsor (A8-M):



canadiangeek Newbie
8 hours ago, GFinDC said:

@Trents, That will teach you to pilfer her biscuits! :)

@canadiangeek,

Hi CG,

Welcome to the forum! :)

It sounds like you figured out your health issue.  But you may not be aware of the testing process for celiac disease.  If you want to be diagnosed by a doctor you need to be eating gluten for 2 weeks before the endoscopy or 12 weeks before the blood antibody tests.  A doctor's stamp of approval isn't important to all people but for some it is.  The blood tests look for gliaden antibodies.  The endoscopy is to check for gut damage in the small intestine.

Going back on gluten for testing (a gluten challenge) is often pretty unpleasant so we try to encourage people to get tested before going gluten-free.

It may be difficult to get an endoscopy right now with the pandemic going on and medical workers being so busy.

Celiac disease is an auto-immune condition.  When we eat gluten, it causes an immune reaction by the body.  Those immune cells are happy to stick around for weeks or months to protect you from evil gluten.  The way they protect you (in their misinformed opinion), is to attack the cell structures (villi) that line the small intestine.  This villi damage causes malabsorption of nutrients and leads to deficiencies.  Untreated (eating gluten) celiacs can be low on B and D vitamins, iron, copper magnesium, A, and several other minerals/vitamins.

Symptoms from a glutening can last for 6 weeks or more.  We tend to notice symptoms faster after going gluten-free.  Also, even tiny amounts of gluten (wheat, rye, barley proteins) can trigger the immune reaction.  Our immune systems kill germs and other bad small stuff when they aren't busy trying to kill our guts.  So the immune system is very helpful and powerful.  Usually...

You may still have enough antibodies active in the bloodstream to get a positive blood test right now.  But it would have to be checked real quick.

Thank you for all the info! 

I wasn't aware of most of what you posted so I am happy to have new knowledge!! 😀

As you said with the pandemic and the holidays that time is not appropriate to get tested 😕 so I am relying on listening to my body and doing everything i can for now to go gluten free for a while and see what happens, so far it's been positive! 

I just got this upper stomach pain, under my breastbone twice because i ate what i thought was gluten free food 😕 it lasted a few days but it got better with time and a better diet.

At first I was panicking... googling symptoms is beyond a bad idea... I went from liver cancer to pancreatitis to gallbladder disease... but so far this diet is not a miracle cure, still sensitive throughout my IG tract but it's not as bad.

 

trents Grand Master

Pain under the breastbone could be GERD. That is common with celiacs and you are in the right age group for those kind of problems to develop anyway. There is a  tendency for people with gluten related disorders to blame all physical and medical problems on that but we are still subject to the same things that everyone else is.

GFinDC Veteran
7 hours ago, canadiangeek said:

Thank you for all the info! 

I wasn't aware of most of what you posted so I am happy to have new knowledge!! 😀

As you said with the pandemic and the holidays that time is not appropriate to get tested 😕 so I am relying on listening to my body and doing everything i can for now to go gluten free for a while and see what happens, so far it's been positive! 

I just got this upper stomach pain, under my breastbone twice because i ate what i thought was gluten free food 😕 it lasted a few days but it got better with time and a better diet.

At first I was panicking... googling symptoms is beyond a bad idea... I went from liver cancer to pancreatitis to gallbladder disease... but so far this diet is not a miracle cure, still sensitive throughout my IG tract but it's not as bad.

 

You are welcome CG.  It seems like people new to the gluten-free diet often have a sort of a rough time the first 6 months.  The immune system can flare up with a very small amount of contamination.  Plus with a damaged gut things aren't great in the digestion realm anyway.  As the immune system calms down the villi lining the gut can grow back.  That new villi surface area is a perfect place for bacteria to colonize.  So there are changes in diet causing bacterial adjustment and new habitat/territory causing bacterial expansion.  That combo can cause symptoms by itself.

You  can certainly just go gluten-free for life if you want.  There are a number of us who don't have a formal diagnosis for various reasons.  In my case I had to wait 4 months to see the gastro and went gluten-free during the wait.  I wasn't willing to do the gluten challenge for verification at that point.  My gastro did say my symptoms matched so that's something.

A simple diet of whole foods is good for beginners.  Meats, veggies, eggs, nuts and fruit are good but no dairy or oats.  You can always add those things back into your diet later after healing.  Congrats on feeling better! :)

DJFL77I Experienced

what about lactose free dairy

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. - xxnonamexx posted a topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      0

      FDA looking for input on Celiac Gluten sensitivity labeling PLEASE READ and submit your suggestions

    2. - cristiana replied to Atl222's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Increased intraepithelial lymphocytes after 10 yrs gluten-free

    3. - trents replied to Atl222's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Increased intraepithelial lymphocytes after 10 yrs gluten-free

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

      Brown Rice Vinegar (organic) from Eden Foods is likely gluten free

    5. - Scott Adams replied to wellthatsfun's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      nothing has changed

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,194
    • Most Online (within 30 mins)
      7,748

    Eliana123
    Newest Member
    Eliana123
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • xxnonamexx
      Please read: https://www.fda.gov/news-events/press-announcements/fda-takes-steps-improve-gluten-ingredient-disclosure-foods?fbclid=IwY2xjawPeXhJleHRuA2FlbQIxMABicmlkETFzaDc3NWRaYzlJOFJ4R0Fic3J0YwZhcHBfaWQQMjIyMDM5MTc4ODIwMDg5MgABHrwuSsw8Be7VNGOrKKWFVbrjmf59SGht05nIALwnjQ0DoGkDDK1doRBDzeeX_aem_GZcRcbhisMTyFUp3YMUU9Q
    • cristiana
      Hi @Atl222 As @trents points out, there could be many reasons for this biopsy result.  I am interested to know, is your gastroenterologist concerned?  Also, are your blood tests showing steady improvement over the years? I remember when I had my last biopsy, several years after diagnosis, mine came back with with raised lymphocytes but no villous damage, too! In my own case, my consultant wasn't remotely concerned - in fact, he said I might still get this result even if all I ever did was eat nothing but rice and water.   My coeliac blood tests were still steadily improving, albeit slowly, which was reassuring.
    • trents
      Welcome to the celiac.com community, @Atl222! Yes, your increased lymphocytes could be in response to oats or it could possibly be cross contamination from gluten that is getting into your diet from some unexpected source but not enough to damage the villi. And I'm certain that increased lymphocytes can be caused by other things besides celiac disease or gluten/oats exposure. See attachment. But you might try eliminating oats to start with and possibly dairy for a few months and then seek another endoscopy/biopsy to see if there was a reduction in lymphocyte counts. 
    • Scott Adams
      This is a solid, well-reasoned approach. You’re right that “koji” by itself doesn’t indicate gluten status, and the risk really does come down to which grain is used to culture it. The fact that you directly contacted Eden Foods and received a clear statement that their koji is made from rice only, with no wheat or barley, is meaningful due diligence—especially since Eden has a long-standing reputation for transparency. While the lack of gluten labeling can understandably give pause, manufacturer confirmation like this is often what people rely on for traditionally fermented products. As always, trusting your body after trying it is reasonable, but based on the information you gathered, your conclusion makes sense.
    • Scott Adams
      Seven months can still be early in celiac healing, especially if you were mostly asymptomatic to begin with—symptoms like low iron, vitamin D deficiency, nail changes, and hair issues often take much longer to improve because the gut needs time to recover before absorption normalizes. A tTG-IgA of 69 is not “low” in terms of immune activity, and it can take 12–24 months (sometimes longer) for antibodies and the intestinal lining to fully heal, particularly in teens and young adults. Eating gluten again to “test” things isn’t recommended and won’t give you clear answers—it’s far more likely to cause harm than clarity. Weight not changing is also very common in celiac and doesn’t rule anything out. Please know that your frustration and sadness matter; this adjustment is hard, and feeling stuck can really affect mental health. You deserve support, and if you can, reaching out to a GI dietitian or mental health professional familiar with chronic illness could really help you through this phase. This study indicates that a majority of celiacs don't recover until 5 years after diagnosis and starting a gluten-free diet: Mucosal recovery and mortality in adults with celiac disease after treatment with a gluten-free diet However, it's also possible that what the study really shows is the difficulty in maintaining a 100% gluten-free diet. I suspect that if you looked closely at the diets of those who did not recover within 2 years might be that their diets were not 100% gluten-free. Perhaps they ate out more often, or didn't understand all of the hidden ingredients where gluten can hide. Either way, it shows how difficult recovery from celiac disease can be for most people. According to this study: This article explores other causes of flattened villi:    
×
×
  • 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.