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Celiac With Pacreatic Cancer


Nancyalice

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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.


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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/

 

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    • knitty kitty
      @catnapt,  I apologize.  Obviously I've confused you with someone else.  I have vision problems due to undiagnosed Celiac complications.  Being legally blind, y'all look the same from here.   You still have not said which new medication you started taking.  Parathyroid disorders can affect antibody production.  Bone Loss Correlated with Parathyroid Hormone Levels in Adult Celiac Patients https://pubmed.ncbi.nlm.nih.gov/36619734/ Effect of vitamin B1 supplementation on bone turnover markers in adults: an exploratory single-arm pilot study https://pmc.ncbi.nlm.nih.gov/articles/PMC12075007/
    • catnapt
      during the gluten challenge I did not consume any wheat germ   the wheat germ is TOASTED - it's the only way it is sold now afiak doesn't matter I consume vast amounts of lectin containing foods PROPERLY prepared and have for well over a decade. They do not bother me in the least.    no anemia however the endo who ordered the celiac panel is the one who suggested the 2 week gluten challenge of eating at least 2 slices of bread per day or a serving of pasta- ALSO put me on a new drug at the same time (not a good idea)  I ate 4 slices because they were thin, or 2 English muffins, and just once some lasagna that someone else made since I stopped eating wheat pasta years ago. The English muffins caused some of the worst symptoms but that pc of lasagna almost killed me ( not literally but the pain was extreme) during those 12 days there were at least 3 times I considered going to Urgent Care.   This entire process was a waste of time TBH due to being on that new drug at the exact same time. it is impossible to tell if the drug I am taking for the possible renal calcium leak is working or not- given the dramatic response to the gluten challenge and resulting nausea (no vomiting) and eventually a loss of appetite and lower intake of foods so now I have a dangerously low potassium level   I don't have a simple case of celiac or no- I have an extremely complicated case with multiple variables I am seeing an endocrinologist for a problem with the calcium sensing glands - that system is very complicated and she has been unable to give me a firm diagnosis after many tests with confusing and often alarming results. She also appears to be inexperienced and unsure of herself. but I don't have the luxury of finding a new endo due to multiple issues of insurance, lack of drs in my area, money and transportation. so I'm stuck with her At least she hasn't given up    in any case I can assure you that lectins are not and never were the problem. I know they are a favorite villain in some circles to point to, but I have ZERO symptoms from my NORMAL diet which DOES NOT contain gluten. The longer I went without bread or foods with wheat like raisin bran cereal, the better I have felt. my body had been telling me for several years that wheat was the problem- or maybe specifically gluten, that remains to be seen- and stopping eating it was the best thing I could have done   I almost had unnecessary MAJOR SURGERY due to joint pain that I ONLY have if I am eating bread or related products I assumed it was the refined grains - never really suspected gluten but it does not matter I won't put that poison in my body ever again not that it is literally poison but it is def toxic to me        
    • knitty kitty
      @catnapt,  I'm sorry you're having such a rough time.   How much wheat germ and how much gluten were you eating? Lectins in beans can be broken down by pressure cooking them.  Do you pressure cook your beans?  Were you pressure cooking your wheat germ? What drugs are you taking?  Some immunosuppressive drugs affect IgA production.  Do you have anemia?
    • catnapt
      oops my gluten challenge was only 12 days It started Jan 21s and ended Feb 1st   worst 12 days of my life   Does not help that I also started on a thiazide-like drug for rule in/out renal calcium leak at the exact same time No clue if that could have been symptoms worse 🤔
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