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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Heritage
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39 posts in this topic

While we are on the topic of where we live I got curious about the heritage of everyone. I have often heard that people of a certain descent have a higher incident of developing celiac disease. I think it was European and I thought it might be fun to see if that was true.

My father was of german descent and my mother is dutch.

I also was wondering how many people found other family members that have celiac?

I have not been able to trace it back to anyone. I did have a maternal grandfather that had colitis and a paternal cousin with crohns disease

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;) hi sally--i am of german descent on my dad's side--dont know about my mom's side--she doesnt know who her dad is--she is a freckled redhead, so maybe irish :P --my sister is a diagnosed celiac, my dad has been told by his doctor to go gluten-free, so i am not sure if it is his opinion or from a test--my dad has been very ill with stomach problems the last few years--he has always had issues with his stomach--when my sister was diagnosed i also went gluten-free and it made all the difference in the world to me--my dad has only been gluten-free for a few weeks--my sister and i for over 3 yrs now :D deb
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Yes, they say that celiac is more common in those of European descent, particularly Northern European. To my knowledge, nobody else in my family has celiac. My grandparents on my mom's side have been tested, my family has been tested...but who knows about my dad's parents or my great-grandparents on both sides--I doubt they were checking for celiac disease back then :)

Mother's Side: Swiss, Swedish

Father's Side: English, Irish, Scottish

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mother's side, Finnish

father's side, Swede and German

No history of celiac but diabetes, migraine headaches and arthritis.

Laura

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I believe that it can be a European disease...

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I am Hungarian and German on my mother's side and German American Indian on my father's side. My mother had all the symptoms of gluten-free but since her antibody test came out negative she will not follow a gluten-free diet. My brother is HD diagnosed, My two sons have celiac disease as do I. I'm pretty sure my maternal grandfather had celiac disease as he had RA and other health issues. My paternal aunt I think also has celiac disease since she has sever migrains, sever bone loss requiring fusions and animia. She refuses to get tested.

I have to say I'm glad to hear so many of you say that you are the only one in your family because I was starting to believe that all of my grandchildren were doomed to have celiac disease.

But on a side note, doctors in the US think that celiac is 1 in 10,000 in our population. I just read a stat from the head GI doc here in Denver that the incidence is more like 1 in 135. That SHOCKED me.

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Deby:

When I went to the celiac conference at Stanford University in California this October, they estimated that one in 133 people have celiac disease.

This is up from just a year ago when they stated it was one in 250. It is shocking!

There were over 500 people that attended this year, last year there were about 200 people.

Even looking at this message board the numbers are rising. I sometimes wonder if it is something in the enviroment?

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My mom's family is Scottish and English and has many Celiacs, most diagnosed. My dad's family is Irish and German and has a handful, most undiagnosed. It just runs in the blood!

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My family is English (like, the Mayflower), Canadian (orginal Acadians) and the usual American hodge-podge of bits of other things down through the years.

My husband's family is German, German, German, and oh yeah, Austrian.

My son is celiac, hubby is being re-tested, probably positive, my other son and I and so far all my relations are negative. My grandfather (one of the French-Canadians, granpere spoke French!) died of colon cancer, as did his mom and dad. Hmmmm....Husband's family is a pile of colitis, colon polyps, IBS and diverticulitis. No, none of them have been tested, they "know" they don't have it......

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Dad- German, Irish

Mom- Italian

Mom has it- and one daughter.

Though I suspect many had it, and am convinced- another daughter, and 1 of my sons, and one of my grandsons do.

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Dad - Danish

Mom - English (but Colonial American kind, too, Ryebaby0)

I have it, my three kids have it (their father is a German, French Canadian and who-knows American). One of my sisters have it and one nephew of a different sister, and we suspect MANY others in my family have it but no one is interested in getting tested. :blink:

I suspect my mom has it, too, but she refuses to consider she might (her mother had all the symptoms of having celiac disease since a small child: growth problems, gastro problems, 3/4 of her stomach was removed, divirticulitis...)

We suspect my father had it (he recently died and all the reports look like it was from gluten neuropathy, he had all the physical signs of this, plus the autopsy showed severe degeneration/atrophy of the cerebellum with a marked loss of Purkinje cells - these are the cells in the brain that are attacked as opposed to the ones in the small intestine), his sister probably had it (all the same physical signs as my father except she was a heavy smoker and that got her), his mother (gluten neuropathy again...)

Anyway... :(

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I was adopted at the age of 6-weeks so there isn't much background information especially on my Natural Father's side.

Mom - Polish

Dad - German

I did meet my Natural Mom about a year ago. She was having "some" health issues that she attributed to IBS - couldn't lose weight, constant diarrhea, & others that we just didn't get into at the time. She now has 2 grown children from another man. I wouldn't be surprised if she has celiac disease.

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Even looking at this message board the numbers are rising. I sometimes wonder if it is something in the enviroment?

Sally,

I think the something in the envoronment is the processed wheat that takes out the fiber and ups the gluten. Even whole wheat bread has added gluten. The reason I think this is because my identical twin sons both have celiac disease. the first got it at 3 so we emptied the house of gluten. The second twin then didn't get as much wheat. He was getting it in his breakfast sometimes and at lunch in a sandwhich or pasta. His antibodies went positive, just barely, but the biopsy was neg. He didn't go positive until I purposfully upped his gluten eating for 6 mos and then redid the biopsy. Even then the biopsy was 0, 1 and a barely 2.

Stress could play a factor too :)

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We know that it's partly environmental - though not necessarily exactly what it is in our environment that does the triggering. I'm a Heinz 57 of Northern European decent - primarily French and Hungarian, but also some Irish, English, Welsh, German, and some other stuff I don't remember... No one else in my family has tested for it, and none are obvious contenders - no obvious GI problems I know of, nor anyone with obvious malabsorption issues - but enough of the uncommon symptoms that it wouldn't be a huge suprise if one or two were to test positive.

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Hey Lynn,

I adopted too and only know about my mother's side. I'm German and Icelandic, which is mostly Norwegian although the Icelandic side is very dark in coloring, on my mom's side.

My mother has many stomach problems, ulcers, acid reflux and IBS. Whenever I talk to her, her stomach is in pain. I did send her some info on Celiac but she didn't say anything about it so I'm going to send her some more info. I'm not sure she will listen or be open minded because she is a nurse and that can make her a little narrow minded about things. She has problems losing weight too and I'm sure that is why she won't even consider celiac as an option. Oh, and she has Reynoid's syndrome (I think I spelled that wrong) and that is an autoimmune thing. Have you talked to your mom about it? Does anyone have a source that says you can be overweight and have Celiac?

As far as causes- Don't like 20% of the population have a gene for Celiac? So that many people have the potential to get it so it could be on the rise because of the environment or maybe it is being diagnosed more frequently because doctors are more aware of it especially in adults and in those who are not underweight?

Melanie

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I do believe that people can be overweight and have celiac. At the conference I went to most of the people looked very healthy and some were overweight. I have also talked to people that have celiac disease and are overweight.

Personally I would rather be somewhat overweight than look like an anorexic like I do! I have even had people "assume" that I have an eating disorder. I am having a very difficult time gaining the weight back. I think it may possibly be because it took so many years to find out what was wrong and there was a lot of damage to my body in the meantime.

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Dad's side - Scottish, Irish

Mom's side - Irish, Norwegian, English

I am the only one in my family that has been diagnosed with celiac. My mom is the only other person that has been tested (as far as I know... I have a hudge family, lots of cousins).

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Hi!

I also belong to a huge Irish, Catholic, Newfie family. I have 102 first cousins!!!

On my dad's side: Irish, Irish

On my mom's side: Irish, French

Karen

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Oh yeah, I was wrong--my dad's parents were tested, as well as my mom's.....so no grandparents have celiac disease, nobody else in my immediate family has celiac disease.....must be some great grandparent or great, great grandparent ;)

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Hi!

I also belong to a huge Irish, Catholic, Newfie family. I have 102 first cousins!!!

On my dad's side: Irish, Irish

On my mom's side: Irish, French

Karen

WOW! 102 first cousins... :o ...let's see, I have...seven cousins... :lol:

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Both my sides are Ukrainian/Polish. My gido(granda for those you dont know my language :P ) was born in Ukraine and lived there til he was 4 I think. No family history of Celiac that we know of, but diabetes,A LOT of cancer, and A LOT of arthritis..

~lisa~

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Hi Melanie,

That is funny that your Mom is a nurse b/c my natural Mom was also a nurse until she was in a car accident & injured her back. Because I have been sick so long I thought by contacting her, I would be able to find some medical information regarding my background.

Unfortunately, we ended our relationship a year ago last October 10th. She had high expectations about the person I should be - that I would help her out financially, that I would return to be her daughter, that I would be there for her when she needed me, my hair should be a certain way, I should weigh a certain amount, etc. She also had expectations that I should have hugged her & kissed her when we met. I am shy & it sometimes takes me a while when I meet someone new. She couldn't understand that at all.

I am still thinking about writing her a note about my findings. It can't hurt. Then it will be up to her what she wants to do if anything.

At one point, I was very underweight (afterwards I started to become very bloated). They diagnosed me as Anexoria. I went down to 68 pounds at 5'3". We had a daughter who we adopted from China & we were in the process of adopting another daughter from Korea. Because of my severe weight loss & the pending adopting, the adoption agency took away our 2nd daughter from us b/c they felt it was intentional.

In my opinion - if doctors were more knowledgeable about celiac disease & took the time to check people out for this disease, it would save people from going through a lot of things.

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Lynn R.

That is so sad, it seems that people never cease to surprise me. I am sorry that you have to go through this, but you are not alone. Just be happy with yourself and things have a way of working out, or so I am told.

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Hi celiac3270!

One thing Irish Catholics (and especially Newfie ones) know how to do, is multiply!!! LOL! Including me, with four kids (my two girls and my twin boys..) Multiple births run in my family quite a lot, a lot of twins and triplets. A month before my twin boys were born, one of my cousins had triplet girls....

I always joke that most of my cousins are born 9 months after fishing season ends.....

Karen

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