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

Celiac With Pacreatic Cancer


Nancyalice

Recommended Posts

Nancyalice Newbie

I was diagnosed with Celiac disease two years ago.  I was told to start a gluten free diet and come back for blood tests in three months.  When I went back for blood tests, my liver functions were abnormal.  Further testing confirmed I had pancreatic cancer.  I went through chemotherapy and the Whipple procedure.  Today I am cancer free, but a lot of my pancreas was removed, along with my gall bladder and some of my stomach.  I was told not to eat fatty foods.   I was told the symptoms I had for Celiac were similar to those of pancreatic cancer.  I would like to hear from those suffering from Celiac. What happens when they eat gluten?  Do they know it immediately or does it take a day or two to cause symptoms?  Once symptoms begin how long before the bout is over?  Since I had the two problems at the same time I don't know which is causing my issues.  I try to follow the gluten free diet, but I know it's easy to conume gluten unknowingly (especially in restaurants).  Please help.  Thank you.


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



Celiac.com Sponsor (A8-M):



nvsmom Community Regular

Congratulations on beating the pancreatic cancer! Unfortunately, that is one of the cancers that tends to show up more often in celiacs than in the regular population. I'm glad you got a diagnosis and are eating gluten-free now.  :)

 

Celiac disease has a lot of symptoms and it varies from person to person: some people get neurological presentaions, it affects skin and hair, some poeple become anemic... it's pretty broad.  Here is a pretty good list of symptoms: https://www.celiac.com/articles/1106/1/Celiac-Disease-Symptoms/Page1.html

 

When I eat gluten, I get a general feeling of "unwellness", a bloated stomach, a stomach ache, headache, and fatigued. If I eat it often and for a long time I lose hair, get constipated, gain weight, develop joint pain, get pimples, and my back gets sore more often (I have a back injury).  The first few symptoms I listed hit within hours and last a few days, the other symptoms last weeks or months (but need more than a tiny bit of gluten to set them off).

 

I don't eat in restaurants very often - I don't consider them to be very safe places for me. When I do eat out, I tend to go with salads or eggs. I have had some bad luck ordering off of supposed gluten-free menus so I'm a bit gun-shy now. I tend to bring in my own food - I have young kids so no one questions us when we order a milkshake and bring out our own lunch.  LOL

 

Best wishes.  I hope you continue to be well.  :)

GFinDC Veteran

Hi and welcome to the forum! :)

 

Symptoms and reaction times do vary an awful lot with celiac disease.  Some people get no GI symptoms at all.  Some react in an hour or less and some after a day to two.  It is not a set thing.  I used to react within an  hour myself.  I am not sure I still would but don't want to try to find out!  And symptoms for me could last a month or more.

 

Congrats on surviving pancreatic cancer too.  That's great!

 

Some starting the gluten-free diet tips for the first 6 months:

Get tested before starting the gluten-free diet.
Get your vitamin/mineral levels tested also.
Don't eat in restaurants
Eat only whole foods not processed foods.
Eat only food you cook yourself, think simple foods, not gourmet meals.
Take probiotics.
Take gluten-free vitamins.
Take digestive enzymes.
Avoid dairy.
Avoid sugars and starchy foods.
Avoid alcohol.

Helpful threads:

FAQ Celiac com
https://www.celiac.com/gluten-free/forum-7/announcement-3-frequently-asked-questions-about-celiac-disease/

Newbie Info 101
https://www.celiac.com/forums/topic/91878-newbie-info-101/

What's For Breakfast Today?
https://www.celiac.com/forums/topic/81858-whats-for-breakfast-today/

 

Archived

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

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

      Recovery from gluten challenge

    2. - annamarie6655 posted a topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      0

      Airborne Gluten?

    3. - trents replied to Mell2's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      13

      Rectal pain

    4. - Celiac and Salty replied to Mell2's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      13

      Rectal pain

    5. - Rogol72 replied to Butch68's topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      Guinness, can you drink it?


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,236
    • Most Online (within 30 mins)
      7,748

    kssynlson37
    Newest Member
    kssynlson37
    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)

  • Upcoming Events

  • Posts

    • Kirita
      I’m wondering if anyone has had any experience with the gluten challenge. My teenager completed a gluten challenge over the summer, it ended up being 10 weeks although she stopped being consistent eating gluten after 6. Her previous endoscopy was negative but this past August it was positive after the gluten challenge. If you have done the gluten challenge, how long did it take you to feel back to normal? It took about two months before she got “glutened” again but now she’s having difficult coming back from that and has a lot of fatigue. I’m hoping someone has some advice! 
    • annamarie6655
      Hello everyone, I was on here a few months ago trying to figure out if I was reacting to something other than gluten, to which a very helpful response was that it could be xanthin or guar gum.    Since then, I have eaten items with both of those ingredients in it and I have not reacted to it, so my mystery reaction to the Digiorno pizza remains.    HOWEVER, I realized something recently- the last time I got glutened and the most recent time I got glutened, I truly never ate anything with gluten in it. But i did breathe it in.    The first time was a feed barrel for my uncle’s chickens- all of the dust came right up, and most of what was in there was wheat/grains. The second time was after opening a pet food bag and accidentally getting a huge whiff of it.    When this happens, I tend to have more neurological symptoms- specifically involuntary muscle spasms/jerks everywhere. It also seems to cause migraines and anxiety as well. Sometimes, with more airborne exposure, I get GI symptoms, but not every time.    My doctor says he’s never heard of it being an airborne problem, but also said he isn’t well versed in celiac specifics. I don’t have the money for a personal dietician, so I’m doing the best I can.    is there anyone else who has experienced this, or gets similar neurological symptoms? 
    • trents
      I was suffering from PF just previous to being dx with celiac disease about 25 yr. ago but have not been troubled with it since. Not sure what the connection between the two is of if there is one. But I do know it is a very painful condition that takes your breath away when it strikes.
    • Celiac and Salty
      I have dealt with proctalgia fugax on and off for a year now. It feels almost paralyzing during an episode and they have started lasting longer and longer, sometimes 20+ minutes. I was recently diagnosed with celiac disease and wonder if the 2 are related. I did request a prescription for topical nitroglycerin for my PF episodes and that has helped tremendously!
    • Rogol72
      Hey @Butch68, I also have dermatitis herpetiformis but don't suffer from it anymore. I used to drink Guinness too but I drink Cider now when out on social occasions. I assume you are in Ireland or the UK. If it's any good to you ... 9 White Deer based in Cork brew a range of gluten-free products including a gluten-free Stout. I'm not sure if they are certified though. https://www.9whitedeer.ie/ I haven't come across any certified gluten-free stouts this side of the pond.
×
×
  • 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.