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 With Pacreatic Cancer
Posted 08 May 2013 - 07:56 AM
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: http://www.celiac.co...toms/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.
"Acceptance is the key to happiness."
ITP - 1993
Celiac - June, 2012
Hypothyroid - August, 2012
Celiac.com - Celiac Disease Board Moderator
Posted 08 May 2013 - 08:45 AM
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 gluten-free vitamins.
Take digestive enzymes.
Avoid sugars and starchy foods.
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Thyroid cyst and nodules, Lactose / casein intolerant. Diet positive, gene test pos, symptoms confirmed by Dr-head. My current bad list is: gluten, dairy, sulfites, coffee (the devil's brew), tea, Bug's Bunnies carrots, garbanzo beans of pain, soy- no joy, terrible turnips, tomatoes, peppers, potatoes, and hard work. have a good day! :-) Paul
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