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Trying To Figure Out Family History

guy220d

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guy220d Rookie
guy220d
Posted

I am new to the celiac world (a year ago, I'd never heard of it) and exploring whether or not I have the condition. Unfortunately, I went on the gluten-free diet a couple of months before my blood tests (because I was feeling so bad), and the blood tests, according to my MD, came back negative. What I'm wondering about is my late father. 20 years ago, in his 60's, he was diagnosed with intestinal lymphoma (had a large section of his sm. intestine removed) and 10 years ago he was diagnosed with Hashimoto's thyroiditis. Two years ago, he was diagnosed with stomach cancer and died pretty quickly, last summer. Dad was never diagnosed with celiac disease. I know lymphoma and the thyroiditis can go along with celiac disease, but does stomach cancer? It seems like I've read in these celiac forums about other family members that have had stomach cancer.

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Carriefaith Enthusiast
Carriefaith
Posted

People with celiac disease that do not follow the gluten free diet have about a 40% increased risk of stomach cancer than someone without celiac disease or someone with celiac disease who is following the diet. Intestinal lymphoma is one of the types of stomach cancers associated with celiac disease. I'm really sorry about your dad :(

phakephur Apprentice
phakephur
Posted
People with celiac disease that do not follow the gluten free diet have about a 40% increased risk of stomach cancer than someone without celiac disease or someone with celiac disease who is following the diet. Intestinal lymphoma is one of the types of stomach cancers associated with celiac disease.

Another factoid I've seen frequently on this site is that the vast majority of celiacs are undiagnosed (and therefore not following the diet). If this is the case, then how can the increased risk of cancer be quantified? Do oncologists routinely screen for celiac? Or can someone give me a reference to a study on cancer rates among non-compliant celiacs? I'd really like to read it.

Thanks

Sarah

jkmunchkin Rising Star
jkmunchkin
Posted
I am new to the celiac world (a year ago, I'd never heard of it) and exploring whether or not I have the condition. Unfortunately, I went on the gluten-free diet a couple of months before my blood tests (because I was feeling so bad), and the blood tests, according to my MD, came back negative. What I'm wondering about is my late father. 20 years ago, in his 60's, he was diagnosed with intestinal lymphoma (had a large section of his sm. intestine removed) and 10 years ago he was diagnosed with Hashimoto's thyroiditis. Two years ago, he was diagnosed with stomach cancer and died pretty quickly, last summer. Dad was never diagnosed with celiac disease. I know lymphoma and the thyroiditis can go along with celiac disease, but does stomach cancer? It seems like I've read in these celiac forums about other family members that have had stomach cancer.

You should not go on the gluten-free diet before having the blood tests done, especially if your gluten levels may not have been that high to start with. Otherwise the test will infact come back negative.

For instance when I was diagnosed 6 months ago my numbers where through the roof high. Now that I have been gluten-free for 6 months my numbers are almost normal. Gluten needs to be present in your body to show up on the blood test.

Try eating "normal" and taking the blood test again.

  • 2 weeks later...
happy4dolphins Enthusiast
happy4dolphins
Posted

HI, This is a really good question. I've been wondering some similar things myself. I run a duodenal cancer board (part of the upper small intestine) and wonder if there is a conncetion to some of these things.

-Nicole

  • 2 weeks later...
christianne Newbie
christianne
Posted

My maternal grandfather died of stomach cancer about 20 years ago. I was dx about 2-3 years ago (although the endoscopy was inconclusive). My father tested for Celiac and was found not to have it. My Mom has refused to be tested. My grandfather had stomach problems all his life so I wonder also if he had Celiac. He was only 64 when he passed away. They thought he had ulcers all his life. Not terriblyhelpful as far as proof goes, but a similar story.

tiffjake Enthusiast
tiffjake
Posted

My paternal grandmother died when my father was 12 years old. They told the family that she had non-tropical sprue, but nothing else about what that meant for the rest of the family. As far as my dad understood, she had stomach cancer. My dad and I have ALWAYS had stomach troubles. When I found out about my celiac, I told my dad, who has cut out the gluten and had a massive change in his life. I am not sure what would have happened to him if he didn't, or to me for that matter. But I know what happened to my grandmother. And since this disease is (or can be) genetic, I am not going to take the chance of having the same early death that she had.

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guy220d Rookie
guy220d
Posted
  • Author

I had written in my original posting that my doctor thought my blood tests were negative for celiac anti-bodies. I've been suspicious of that for awhile, so I asked for a copy of the test results. I was a bit stunned when I read that my IgG anti-gliadin level was 21, four points over positive. I guess I shouldn't be stunned because I had to tell my doctor what the tests were for celiac disease. He was really uninformed.

penguin Community Regular
penguin
Posted
I had written in my original posting that my doctor thought my blood tests were negative for celiac anti-bodies. I've been suspicious of that for awhile, so I asked for a copy of the test results. I was a bit stunned when I read that my IgG anti-gliadin level was 21, four points over positive. I guess I shouldn't be stunned because I had to tell my doctor what the tests were for celiac disease. He was really uninformed.

That's why I've made it a habit to always get copies of bloodwork results.

  • 2 months later...
lau Newbie
lau
Posted
I am new to the celiac world (a year ago, I'd never heard of it) and exploring whether or not I have the condition. Unfortunately, I went on the gluten-free diet a couple of months before my blood tests (because I was feeling so bad), and the blood tests, according to my MD, came back negative. What I'm wondering about is my late father. 20 years ago, in his 60's, he was diagnosed with intestinal lymphoma (had a large section of his sm. intestine removed) and 10 years ago he was diagnosed with Hashimoto's thyroiditis. Two years ago, he was diagnosed with stomach cancer and died pretty quickly, last summer. Dad was never diagnosed with celiac disease. I know lymphoma and the thyroiditis can go along with celiac disease, but does stomach cancer? It seems like I've read in these celiac forums about other family members that have had stomach cancer.

Consider being tested to see if you carry the gene for celiac. I've found that only a gastroenterologist will know what test to order (I recall it's something like DQ2 and DQ8). If you don't have the gene, you can't test positive (antibody test) for the disease. If you DO have the gene, then you may have the disease or could one day develop it. I'm sorry to hear about your father--good chance he had celiac. If you find that you have the gene, I'd recommend you tell any first-degree relatives (siblings or children) that they should be tested too. Good luck.

  • 5 years later...
lilu Rookie
lilu
Posted

Also, be sure you get a test that show both the alpha and beta alleles (like Prometheus). The reason this is important is that while most people express as two whole genes: DQ_/ DQ_, you can actually have "hybrid" genes (ok, tried to explain here in layman's terms, but can't quite get it out). Do a search on DQ 2.5 "trans" and you'll see what I mean. The "whole genes" are called "sic" and the hybrids are called "trans", but they respond in the body in the same manner (increased risk).

Can someone else help me out here with a better explanation?

txplowgirl Enthusiast
txplowgirl
Posted

Hi Guy,

I've wondered about the cancer too since it is so prevalent on both sides of my family. I've basicaly been sick my whole life and found out about the gluten connection 2 years ago. I was so sick that I didn't bother with the tests I went glutenfree immediately and like a lot of others really wish that I had tested before because i have tried to do a gluten challenge and I get about a week and a half into it before I have to quit.

Anyway, My mother's side, her only sister passed away last year to esophageal cancer, her four brothers passed from lung cancer, pancreatic cancer, and colon cancer. Her father passed away from stomach cancer. 3 of his sisters from lung, colon and breast cancer. There are over 9 first and second cousins who have had everything from colon to breast cancer. On top of several other problems ranging from Lupus, Ruematoid arthritis and thyroid problems. My mother lost her thyroid 40 years ago.

My father's side. I lost my dad to colon cancer, 2 of his brothers to stomach and lung cancer. I have 2 cousins who are brothers, 1 has kidney cancer the other has pancreatic cancer. One of their nephews who is 34 has liver cancer. Another cousin was diagnosed at the age of 29 to brain stem cancer. My grandmother to cervical cancer and her sister to lung cancer, their mother, my greatgrandmother to lung cancer. Several other first and second cousins ranging from colon, breast, non hodgkin's lymphoma and esophageal. As well as other problems ranging from thyroid, lupus, seizures, etc.

I truly believe this is all due to gluten.

So, this is why I stay gluten free. None of my family members believe this but i have managed to talk 2 cousins into going gluten free, so there is some progress but not much.

cap6 Enthusiast
cap6
Posted

I was not diagnosed until 2 years after my mom dies, however knowing what I now know I believe that she was Celiac. She suffered with gut issues all her life, had diabetes, fibromyalgia, intense itchy bumps on knees and elbows, severe bouts of constipation/diarrhea, restless leg, bruising, mouth sores and on the list goes. She was pretty much a mess and in constant pain. Her father had asthma, her mother diabetic and cancer runs through every generation. This is all the evidence I need to know celiac comes through her side of the family and in spite of all of this will my brother be tested or even listen. No!

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