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Celiac With Pacreatic Cancer
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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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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.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.  :)

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

Newbie Info 101
http://www.celiac.com/gluten-free/topic/91878-newbie-info-101/

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

 

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    • Hi Aly and welcome You may want to repost this in a new thread, that way more people will see it and can advise you.  I think you would be much better off getting the celiac test now, if you stay off gluten you will need to go back on it and that can be much harder. That said, loads of your symptoms look like they could be gluten related.  I had a persistent 'trapped nerve' for instance under my eye which would twitch like crazy. Since I went gluten-free doesn't happen any more.  Best of luck! Matt
    • Your scalp sounds like seborrheic dermatitis. I have that and although its better after going gluten-free its very persistent. The dermatologist recommended Nizoral shampoo for it and it does help. I think dairy has a big part to play with skin problems, for me at least. 
    • I was diagnosed this year and I live on Oahu. I have yet to meet another celiac, so that tells you something about our limitations here. I work in Waikiki and do frequent Rouffage. It is nothing fancy, small place, but keeps me fed when I need something. I also like Greens and Vines. It is a vegan restaurant and worth every penny. Greens and vines sets up at the KCC farmers market on Saturdays too. Places in Waikiki that do offer a gluten-free menu include, PF Changs, Dennys, Big City Diner and California Pizza kitchen. I do not trust those places due to the risk, but they "offer" gluten-free options. I did try and order a beer at Yard House in Waikiki. They label clearly states that it contained wheat, so yeah sent that back with the waiter. I have also tied Doraku in Waikiki. I called ahead and spoke with management. That went well and they offer gluten free soy sauce. There is a deli at Down to Earth Grocery store in Honolulu that has gluten-free options, but the whole foods here do not offer hot food that is gluten free. They do have a hot food bar, but you have to stick to the whole plain salad and veggie options. It's good to hear the hotels here are getting better, beyond Waikiki hotels there is no one really interested in being gluten free.
    • Just found this site today. Did you ever find one? I was diagnosed this year and I live on Oahu.
    • I was diagnosed this year and I live on Oahu. I have yet to meet another celiac, so that tells you something about our limitations here. I work in Waikiki and do frequent Rouffage. It is nothing fancy, small place, but keeps me fed when I need something. I also like Greens and Vines. It is a vegan restaurant and worth every penny. Greens and vines sets up at the KCC farmers market on Saturdays too. Places in Waikiki that do offer a gluten-free menu include, PF Changs, Dennys, Big City Diner and California Pizza kitchen. I do not trust those places due to the risk, but they "offer" gluten-free options. I did try and order a beer at Yard House in Waikiki. They label clearly states that it contained wheat, so yeah sent that back with the waiter. I have also tied Doraku in Waikiki. I called ahead and spoke with management. That went well and they offer gluten free soy sauce. There is a deli at Down to Earth Grocery store in Honolulu that has gluten-free options, but the whole foods here do not offer hot food that is gluten free. They do have a hot food bar, but you have to stick to the whole plain salad and veggie options. It's good to hear the hotels here are getting better, beyond Waikiki hotels there is no one really interested in being gluten free.
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