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Celiac With Pacreatic Cancer

Nancyalice

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Nancyalice Newbie
Nancyalice
Posted

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.

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nvsmom Community Regular
nvsmom
Posted

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
GFinDC
Posted

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/

 

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    • marion wheaton
      Are Lindt chocolate balls gluten free?

      By marion wheaton · Posted

      Thanks for responding. I researched further and Lindt Lindor chocolate balls do contain barely malt powder which contains gluten. I was surprised at all of the conflicting information I found when I checked online.
    • trents
      Are Lindt chocolate balls gluten free?

      By trents · Posted

      @BlessedinBoston, it is possible that in Canada the product in question is formulated differently than in the USA or at least processed in in a facility that precludes cross contamination. I assume from your user name that you are in the USA. And it is also possible that the product meets the FDA requirement of not more than 20ppm of gluten but you are a super sensitive celiac for whom that standard is insufficient. 
    • BlessedinBoston
      Are Lindt chocolate balls gluten free?

      By BlessedinBoston · Posted

      No,Lindt is not gluten free no matter what they say on their website. I found out the hard way when I was newly diagnosed in 2000. At that time the Lindt truffles were just becoming popular and were only sold in small specialty shops at the mall. You couldn't buy them in any stores like today and I was obsessed with them 😁. Took me a while to get around to checking them and was heartbroken when I saw they were absolutely not gluten free 😔. Felt the same when I realized Twizzlers weren't either. Took me a while to get my diet on order after being diagnosed. I was diagnosed with small bowel non Hodgkins lymphoma at the same time. So it was a very stressful time to say the least. Hope this helps 😁.
    • knitty kitty
      My only proof

      By knitty kitty · Posted

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    • Jmartes71
      My only proof

      By Jmartes71 · Posted

      I have been diagnosed with celiac in 1994, in remission not eating wheat and other foods not to consume  my household eats wheat.I have diagnosed sibo, hernia ibs, high blood pressure, menopause, chronic fatigue just to name a few oh yes and Barrett's esophagus which i forgot, I currently have bumps in back of my throat, one Dr stated we all have bumps in the back of our throat.Im in pain.Standford specialist really dismissed me and now im really in limbo and trying to get properly cared for.I found a new gi and new pcp but its still a mess and medical is making it look like im a disability chaser when Im actively not well I look and feel horrible and its adding anxiety and depression more so.Im angery my condition is affecting me and its being down played 
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