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

Recommendation For Severe Cases?


neal

Recommended Posts

neal Rookie

I have known for two years or so that wheat is messing me up, but I would start eating it again after I started feeling better and kind of forgot about it. Plus I like to believe that the body can somehow heal itself of anything. Or that maybe God is looking out for me. Three weeks ago my appendix ruptured, but I was so used to having pain in my abdomen, that I waited 3 days before letting someone drag me to the hospital.

iv antibiotics/opiates for a week/ antibiotic pills and vicodens for another

so here I am kind of feeling like I am about to die, and not to sure that I don't want to.

similar to many here, my life has been a study in pain

I know the appendix is attached to the small intestines, which are where the celiac gnomes hang out and trash stuff. Any thoughts on a relationship there?

The lady at the healthy store recommended l glutamine to help restore the lining

 

i take some probiotics that I know help, and

pancreatin

 

any other suggestions other than the obvious strategy of avoiding the glutoids

 

I have not been clinically diagnosed, there seems to be little point in that

I have researched all this celiac business, so I know the basics of it pretty well. 

 

I do not want to die from eating toast< that would be so lame


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



Celiac.com Sponsor (A8-M):



kareng Grand Master

 

 

I do not want to die from eating toast< that would be so lame

 

 

OMG!  We have a new Celiac Motto!  I love it!

kareng Grand Master

In all seriousness. I'm not sure what you have a severe case of? Seems like if it was related to gluten, you would stop eating gluten. Since you have been eating gluten, why not just get tested? Maybe if you had a diagnosis you would take eating gluten-free seriously?

seraphim Contributor

I'll second this...I didn't know the ins and outs of celiac when I went gluten free and I wish I did know because though I have some signs of possible celiac..i really don't have an official diagnosis other than gluten intolerant. Looking back I wish I had because I certainly don't have the guts to gluten myself for an endoscopy now. I felt too horrible. And it SUCKS to wonder. Even though the protocol is the same I still wonder especially with the other issues that creeped up for me after that made me wonder if I had intestinal damage. I think it sounds like you should just go gluten free if it spares you pain anyhow? I had pains since I was about 8 or 9. I'm now 30. I went gluten free at 29. 20 years of pain..not knowing ANYTHING about wheat issues....it just wasn't worth it. Too many nights on the toilet. Doctor only ever suggested lactose intolerance. It just sounds to me it's worth figuring out. I say request a test for sure!

w8in4dave Community Regular

Yes I feel you should get tested, so you don't think in your head " Well I have never been diagnosed so I will eat it!" so if you get tested and diagnosed then you know you will be better at sticking with it!! Just get it done!! And listen to your Drs. SO you don't die eating toast!! 

Olive Oil Newbie

I have known for two years or so that wheat is messing me up, but I would start eating it again after I started feeling better and kind of forgot about it. Plus I like to believe that the body can somehow heal itself of anything. Or that maybe God is looking out for me. Three weeks ago my appendix ruptured, but I was so used to having pain in my abdomen, that I waited 3 days before letting someone drag me to the hospital.

iv antibiotics/opiates for a week/ antibiotic pills and vicodens for another

so here I am kind of feeling like I am about to die, and not to sure that I don't want to.

similar to many here, my life has been a study in pain

I know the appendix is attached to the small intestines, which are where the celiac gnomes hang out and trash stuff. Any thoughts on a relationship there?

The lady at the healthy store recommended l glutamine to help restore the lining

 

i take some probiotics that I know help, and

pancreatin

 

any other suggestions other than the obvious strategy of avoiding the glutoids

 

I have not been clinically diagnosed, there seems to be little point in that

I have researched all this celiac business, so I know the basics of it pretty well. 

 

I do not want to die from eating toast< that would be so lame

I have been taking l-glutamine for about 2 months now (1000 mg/2xday).  A few days in, my appetite improved and I have gained some weight back.  I've heard that colostrum is helpful as well so that may be something to look into.  

 

On the appendix, my sister had hers rupture coupled with extreme endometriosis about 7 years ago.  She was 19 at the time.  She has not been diagnosed with Celiac disease; however, it seems likely.  I have been diagnosed.  I would definitely say the appendix issues could be related to Celiac disease.  

 

I am sorry you are in so much pain and hope you find some relief.  I agree with your toast sentiment :)  Reminds me of the ad the Australian Metro system put out about railway safety:  

 
notme Experienced

lolz - that is hilarious - it even has 'toast' in it :D


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



Celiac.com Sponsor (A8-M):



kareng Grand Master

.  

 

I am sorry you are in so much pain and hope you find some relief.  I agree with your toast sentiment :)  Reminds me of the ad the Australian Metro system put out about railway safety:  

 

 

That is toooo funny!   And that little song is stuck in my head now!

neal Rookie

My two questions are:

 

Could untreated celiacs lead to a ruptured appendix?    

 

and: 

 

Are there any other measures (in addition to abstaining from wheat) I can take to speed my recovery?

 

I am currently five days off gluten, though I did have some corn products that seem to have fouled things up a little.

 

I am taking:

 

L-glutamine.....seems to be helping

probiotics......definately helps

pancreatin...... seems to help

 

I will look into colostrum!   thank you all for the response!

neal Rookie

And thanks for the video
:)

notme Experienced

i don't know if your appendix was caused by gluten eating, but sooooo many things that were wrong with me cleared up when i was diagnosed and went gluten-free (kicking and screaming, i might add!!  i was in denial til it almost killed me)  

 

have you read the newbie 101 thread on here?  it's got alot of info you might find helpful.  most of us quit dairy in the beginning, if there's damage to your intestines you won't be able to digest it and it will slow healing.  keep a food journal if something is making you react and you can't figure out what.  good luck and watch out for deadly toast  ^_^

Archived

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

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

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





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - Heather Hill replied to Heather Hill's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      Does this definitely suggest Coeliac Disease?

    2. - trents replied to MI-Hoosier's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      Test uncertainty

    3. - MI-Hoosier replied to MI-Hoosier's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      Test uncertainty

    4. - trents replied to MI-Hoosier's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      Test uncertainty

    5. - MI-Hoosier posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      Test uncertainty


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      128,254
    • Most Online (within 30 mins)
      7,748

    brigette
    Newest Member
    brigette
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.1k
    • Total Posts
      70.8k

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Heather Hill
      Many thanks for your responses, much appreciated.  The tests did include tTg IgA and all the other markers mentioned.  I also had sufficient total IgA so if I'm reading the Mayo clinic thing correctly, I didn't really need the anti-deaminated gliadin marker? So, if I am reading the information correctly do I conclude that as all the other markers including tTg IgA and DGP IgG and tTg IgG and EMA IgA are all negative, then the positive result for the immune response to gliadin, on it's own, is more likely to suggest some other problem in the gut rather than Coeliac disease? Until I have a view from the medics (NHS UK) then I think I will concentrate on trying to lower chronic inflammation and mend leaky gut, using L glutamine and maybe collagen powder. Thank you for your help so far.  I will get back in touch once I have a response, which sadly can take quite a long time.   Kindest Heather Hill 
    • trents
      To put this in perspective, most recent pretest "gluten challenge" guidelines for those having already been eating reduced gluten or gluten free for a significant time period is the daily consumption of 10g of gluten (about the amount in 4-6 slices of wheat bread) for a minimum of two weeks leading up to the day of testing (antibody or biopsy). And I would certainly give it more than two weeks to ensure a valid test experience. Short answer: If it were me, yes, I would assume I have celiac disease and launch full bore into gluten-free eating. I think the tTG-IGA is reliable enough and your score is solid enough to make that a reasonable conclusion. Here is an article to help you get off to a good start. It's easy to achieve a reduced gluten free state but much more difficult to achieve consistency in truly gluten-free eating. Gluten is hidden in so many ways and found in so many food products where you would never expect to find it. For example, soy sauce and canned tomato soup (most canned soups, actually), pills, medications, health supplements. It can be disguised in terminology. And then there is the whole issue of cross contamination where foods that are naturally gluten free become contaminated with gluten incidentally in agricultural activities and manufacturing processes: Eating out at restaurants is a mine field for those with celiac disease because you don't know how food is handled back in the kitchen. Gluten free noodles boiled in the same water that was used for wheat noodles, eggs cooked on the same griddle that French toast was, etc.  
    • MI-Hoosier
      Thank you for the response and article. I was placed on the Mediterranean diet and been on that now for about 3 weeks. While not gluten free I am eating very little bread or anything with gluten ie a slice of whole wheat bread every couple days so assume that would cause issues now with a biopsy.  With the condition my liver is in I am unsure moving back to higher bread consumption is ideal.  In this scenario would my test results be enough to assume positive Celiac and just move forward gluten free?
    • trents
      Welcome to the forum, @MI-Hoosier! You are operating on a misconception about your "mixed" test results. You only had two celiac disease diagnostic tests run out of six that could have been ordered if your doctor had opted for a complete celiac panel. It is perfectly normal to not test positive for all possible celiac disease diagnostic tests. That is why there is more than one test option. It is the same way with other diagnostic testing procedures for many or most other diseases. Generally, when diagnosing a condition, a number of different tests are run and a diagnosis is arrived at by looking at the total body of evidence. The tTG-IGA test is the centerpiece of celiac disease blood antibody testing and the one most commonly ordered by doctors. You were strongly positive for that test. It was not an unequivocal result, IMO.  Having said that, it is standard procedure to confirm a positive celiac disease blood antibody test result with an endoscopy/biopsy which is still considered the gold standard of celiac disease diagnosis. Had your tTG-IGA been 150 or greater, your doctor many have opted out of the endoscopy/biopsy. The absence of GI distress in the celiac disease population is very common. We call them "silent celiacs". That can change as damage to the lining of the small bowel worsens. Elevated liver enzymes/liver stress is very common in the celiac population. About 18% of celiacs experience it. I was one of them. Persistently elevated liver enzymes over a period of years in the absence of other typical causes such as hepatitis and alcohol abuse was what eventually led to my celiac disease diagnosis. But it took thirteen years to get that figured out. Within three months of going gluten free my liver enzymes were back into normal range. Thank goodness, there is more awareness these days about the many long fingers of celiac disease that are not found in the classic category of GI distress. Today, there have been over 200 symptoms/medical conditions identified as connected to celiac disease. It is critical that you not begin a gluten free diet until your endoscopy/biopsy of the small bowel is over. Doing so before that procedure will invalidate it because it will allow healing of the small bowel lining to begin. Here is a link to an article covering celiac disease blood antibody testing:  
    • MI-Hoosier
      Hi,  I was recently diagnosed with stage 3 NASH and doctor is concerned something is caused my disease to progress quicker than they would expect.   During blood tests a celiac screen was pulled as my mom is a celiac. My ttg was a 49.4 (normal >15) but my endomysial antibody was negative. I have never had gluten symptoms and no issues with bread and am 54. Do I need a biopsy to rule celiac in or out with this mixed test? Any thoughts are appreciated.  
×
×
  • Create New...