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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.

Genetics
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LisaRN    0

Hello there

I was just wondering how many people's family members (especially their children) also have celiac as well as themselves? I know its genetic, but I am the only person in my entire family on both sides that has celiac. I am just wondering what my unborn childrens chances of also having celiac.

Thanks

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Guest jhmom   
Guest jhmom

Hi Lisa,

I have Celiac as well as one of my 2 children, my mother also shows symptoms as well as my grandmother.

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GFdoc    0

Hi lisa- I am positive for celiac disease, but my parents, 3 brothers, 3 kids and some 1 st cousins have all tested negative. I heard somewhere that the risk is about 1 in 10 for a first degree relative to have it (parent, siblings, kids).

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Lisa,

I am gluten intolerant, as are my two children. My father also shows symptoms, but he won't even consider getting tested because he would have to give up all of his favorite foods. I think my mother should be tested as well, although she does not show classic celiac disease symptoms; it's just a gut feeling I have that she may have it, too.

I also think that my husband is gluten intolerant (and at least his mother, if not both parents, and his deceased maternal grandmother), so that would make it less surprising that both of my children inherited the gene.

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Guest LisaB   
Guest LisaB

Hi, my mother and I have Celiac and I believe that my brother either has it or is gluten intolerant and his son seems to be also. My mom is one of four children and all of them have problems that make me think they are intolerant as well. Only one cousin (first cousin of my mom) seems to have Celiac, the others just have minor/moderate problems. Clear as mud?

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Guest gillian502   
Guest gillian502

This is interesting for me because I thought I was the only Celiac out there who had no relatives at all with the disease! I am the only one in my entire family, and that is one of the reasons why I have always kind of questioned this diagnosis, but, I am assuming the blood work and biopsy do not lie. No one in my family has any autoimmune diseases, or bowel diseases, so it is especially weird for me to have been diagnosed with this, being that it is supposed to be genetic!

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SteveW    0

Not sure if I'm allowed in here :D

But

My family is loaded!

Me-Celiac & Crohns

Mother tests high on blood work for Celiac Sprue-

My Sister has mirror symptoms as me without weight loss-she refuses to get tested so I've given up trying. She'll end up going when shes very ill like me and regretting it.

Fathers side has a history of digestive disorders and I believe his sister has Crohns.

My Uncle(Mothers side) had MS-he passed a few years ago.

My Aunt (Mothers side) Has Parkinson

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joemoe003    0

Yeah i dont ne one in my family has celiacs but my mom said that she gets a lil sick after eating pasta so she just doesnt eat it but she isnt gonna go get tested. i dont understand it why im the only one out of my grandparents and cousins and parents and bro. There isnt even a lil sign of it in ne of them. what is the chance that my kids are gonna get it ? (i dont plan on having kids for a while since im only 15)

Joe Moe

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hapi2bgf    0

I have celiacs. Biopsy positive. Blood test barely elevated and did not suggest the level of damage the biopsy revealed.

My daughter had an elevated blood test using an older method. The newer blood test method by the Pediatric GI showed her as negative for Celiacs.

My mother has all of the signs, but will not be tested.

My brother has many of the signs, but says he will get tested when he gets insurance. That will be years from now.

My father and bother brother see no reason to be tested since they are healthy.

One cousin (maternal side) has celiacs. I have no idea if any other cousins have been tested.

Paternal side of the family has the autoimmune diseases and other diseases that they say are linked to Celiacs. No one is interested in being tested.

I'm curious why people refuse to get tested for a disease that can cause so many problems when undiagnosed. It's just a blood test! Possibly followed by a biopsy which is not such a big deal. Even when we discuss the numbers and percentages of people affected by celiacs, noone wants to be tested unless it is their last hope.

Best of luck convincing your loved ones.

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gf4life    5

My daughter and I have the celiac disease gene (DQ2), and myself and all three of my kids are gluten intolerant. My sons have one gene in common with me and one other one that causes gluten intolerance. I think my husband should be tested, but he refuses. His reasoning is that he doesn't want to give up his favorite foods and he's not as sick as I was. He does have symptoms, as does some members of his family, but they don't really understand about the disease and would only (possibly) take it serious if he tested positive.

As for my family, I am one of 7 kids. My older sister has many symptoms but tested negative on the blood tests. She also has a 14 year old who has seriously stunted grouth and other problems. He also tested negative. She is not pursuing further testing as going gluten-free would not "fit" into her lifestyle right now. :rolleyes: I keep at her about it though. My younger siblings are scattered around the US and I have mentioned it to some of them. On brother has a lot of symptoms, but won't get tested. I made sure he knew about it in case his new baby gets sick he can tell the doctor there is a family history and get the baby tested. The others either don't think it is an issue or I have no way of contacting them and they haven't been told yet. It is very frustrating.

My father won't go to the doctor unless he is half dead. So getting him tested doesn't seem possible at this time. He says there is no one on his side that seems to be having the symptoms I had. I honestly believe I got the disease from my mom. She was sick all her life and died at age 44. Not from cancer or anything like that, but from complications following a non-cancerous tumor being removed from her spinal cord. She had a lot of health problems and almost all of them are listed as being related to celiac disease. Her sisters also have similar health problems. I'm not close to my grandmother, so I don't know if she has any health problems and my grandfather died a few years ago. No GI symptoms that I know about, only heart disease for my grandfather.

I just wish that family members would take it more seriously. It is not a disease that should go undiagnosed for too long. I just hope they find out before anything serious happens to any of them.

God bless,

Mariann

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keburns    0

I have a gluten intolerance (diagnosed by a blood test, intestinal biopsy was negative). My husband has obvious symptoms of a gluten intolerance and has tested negative for all mainstream blood tests and intestinal biopsy. In desperation, I asked our doctor to test him for IGA deficiency, IGA transglutiminase, and HLA DQ2 & DQ8 (genetic markers for celiac). He tested positive for the HLA DQ2 marker only. I then called Miles-Kimball Laboratory and spoke to a geneticist regarding the genetic markers because our doctor thinks it's just something to look out for. According to the geneticist, if a person has obvious symptoms of gluten intolerance AND tests positive for either of the markers, Miles-Kimball considers that person to have a gluten intolerance. Celiac (intestinal damage) is the end result of an undiagnosed gluten intolerance.

They also sell their kits (just swab your cheeks for cells) to the public. It's $292.00 for the kit and diagnoses (the diagnoses is what really costs, the kits are free), and for each subsequent kit ordered for family testing, the cost is reduced to $260.00.

Hope this helps.

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Guest Evelyn's mom   
Guest Evelyn's mom

Hi,

I have also experienced refusals to get tested by family members that show obvious symptoms. I have been tested twice now by the University of Chicago Celiac Research program. They do free testing once a year in October. My daughter so far is the only one in our immediate family with it. Her Paternal Grandfather has Diabetes, degenerative arthritis, ulcers... a paternal cousin is has Down's syndrome and is very thin and has constant constipation...the list goes on. There's an old story that talks about a hound dog laying on a nail. Every few minutes he howls. His owner's neighbor asked the owner, "what's wrong with your dog" Owner: "he's laying on a nail", neighbor: "why doesn't he move?" Owner: "guess it doesn't hurt that bad."

My daughter has been diagnosed since Aug '02 and since then I've been able to help a handful of people pursue the diagnosis by handing out information about it but I run into A LOT of people that just arn't alarmed enough to take action. More than anything though, the resistance is coming from these people's doctors. And It's hard to convince them that their doctors might not have the information they need. One friend has a daughter with all the same symptoms my daughter had: losing weight, foul smelling, watery stools, enlarged belly etc... I gave her some info from the University of Chicago to bring to her doctor. She went in and asked if he'd test for Celiac Disease. He said that it does concern him that her daughter is losing weight (15 months old) but he'd rather test for some other things first, like lactose intolerance...

Anyone out there have any advice on how to side step a doctor's ego when a patient brings their diagnosis to him?

It's an aweful lot to swallow when someone suggests that your doctor may be wrong or uninformed. We place so much trust in them that I almost feel I have to go to medical school in order to get people to listen.

I'm trying not to resign myself to just focusing on my own immediate family, I know I still need to be a voice for Celiacs, raising awareness. I guess those that have ears to hear, will.

RaeAnn

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txceliacmom    0

My sister-in-law was diagnosed in the 70's, my daughter didn't get a formal dx but it's obvious that she has it based on improvement on a gluten-free diet and the reaction she has to gluten. My husband has soooo many signs but wants to eat his donuts so I am having a difficult time getting him to test. His mother just broke her ankle this past weekend, has ostoperiosis, R. Arthritis, brusies if you press on her skin and had a blood transfusion due to anemia while in the hospital this past weekend but is in complete denial. My niece had a kidney stone (calcium) at the age of 15 which is very rare but has not been tested.

With the far reaching problems this disease can cause it amazes me that they don't want to test.

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wildones    0

My son was first to get celiac disease diagnosis

I was diagnosed w/ celiac disease next

My other son was diagnosed w/ gluten intolerance per blood tests

my husband has been diagnosed with gluten intolerance a few days ago, but hasn't had a biopsy yet.

my daughter is now going totally gluten free also because she has to have at least the genetic propensity for it at least, she has had severe reflux her whole life (7 yrs) but no other obvious symptoms.

My husband's side of the family has many members with familial polyposis (colon cancer gene) that has been linked to the celiac disease gene. One SIL is the only one so far to have been diagnosed. My husband's sisters and parents don't think they need to be tested.

My mom and my maternal and paternal granparents have had MANY of the symptoms, but were never diagnosed.

My aunts also have had varying degrees of symptoms.

My mom has finally conceeded that she should at least get a blood test done after many years of problems. She is really doing it shut me up though :unsure: . I really hope she gets the right tests (she has Kaiser insurance) and that they are interpreted correctly.

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Alison    0

I was diagnosed with celiac disease. My parents have since been gene tested and each possesses a gene that predisposes someone to gluten intolerance (mom has DQ2 and dad has DQ8). They are both gluten-free and feel much better for it -- they are clearly gluten sensitive. I got gene tested also and ended up with both DQ2 and DQ8. According to the geneticist, a person with 2 genes is more likely to develop celiac disease. Also, my child (I am pregnant) has a 100% chance of inheriting one of the genes.

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GinEva    0

I was diagnosed a Celiac baby, but my Mom didn't keep me on the gluten-free once I reached my teens. My whole mother's side of the family moved away to Florida, when I reached my twenties, and haven't had anyone to discuss it with.

But, considering the links to different diseases/conditions, I would have to say it does run in my family.

My mom had two sisters and one brother:

* Brother - no kids, colon cancer

* 1st Sister - no kids, breast cancer, colon cancer

* 2nd Sister - no kids, colon cancer

* My mom - 2 kids, 3 still born, broken hip, dementia (still living- 90 yrs old)

(my half-sister & I - no kids)

My dad had 2 brothers:

*1st Brother - 2 kids, heart condition, leukemia-passed in 1 wk.

*2nd Brother - 3 kids, heart condition. (#)

*My dad - 1 kid, skin cancer, Alzhemers, Parkinsons (passed at 72)

Don't know about my grandparents as most of them had passed before I was born (Do know my Mom's dad died of a goiter in the neck (thriod cancer?)

Also, my dad's (1st) brother, who had two daughters, I know one adopted a child and the other I've had no word of her having any kids.

Have I ever spoken to my cousins about it; tried to at a Thanksgiving dinner, but was told by my Aunt (dad's 2nd brother's wife-not blood) to be quite about it! And here is the only surving line in the family(#). Ignorance is bliss...

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taneil    0

Well I have Gluten Intolerance and both genes. So both of my children have at least one gene. My younger sister (18) is showing signs of celiac disease and just got tested, but has not received the test results yet. She has a twin who may have problems also but not yet...my older sister has Hashimoto's Hypothryroidism which I know can be related to celiac disease and I am thinking she has it, but she doesn't want to know because she too doesn't want to give up certain foods. Though I think she is willing to get tested if necessary.

My maternal Grandfather had diabetes and died having celiac disease but was never dx. It wasn't until my maternal aunt was dx that we realized what was wrong the last few years of my grandfathers life. Then my aunt's daughter was dx along with both of her children. And one of her children has two genes.

My mother and father both have atleast one gene because I have both of the genes, but they don't show symptoms yet...

My dad's brother died in 1980 from an accident, but now that we know I have two genes, thus my dad's side has the gene we think he was atleast gluten intolerant because he always complained of stomaches.

So it is in my family and I am glad my aunt was dx so I was aware of the situation. Thus when I showed signs of Hashimoto's I had my doctor run blood work for celiac disease. Then decided to be tested through enterolabs.

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simone    0

I am the first in my family to figure out the Celiac connection. Evedently I have been having symptoms for several years but did not know it. I am 37 now. I suspect other family members have it as well but they won't do anything about it until they feel more sick.

My younger brother definitely shares some of the symptoms that I have and I am very concerned that his second child has symptoms now. I am working on them to cut the wheat from her diet to see if her appetite improves. If symptoms are subtle, as they can be in this disorder, people really tend to ignore them.

Simone

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Hi!

I, too, am the only one in my family with Celiac's. My children have showed no signs of it, and they have been tested periodically through the years. The rest of my family does not have the disease either. The way I see it, it's just luck of the draw with the gene pool! I just gave birth to my daughter in May, and I hope she does not test positive for it. I'll keep everyone posted.

Vicki :)

P.S. Simone, how long have you had Celiac's? I have had it for 9 years now. I am also 37 years old. It's just that curious being in me! :D

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byuiemily    0

My older sister was the first one diagnosed, while she over teaching in Austria. She has always been so sick, and was bedridden during much of high school, with the doctors not having a clue as to what she might have. Until she was diagnosed in Austria, we had never heard of Celiac. When the doctors there told her it was genetic, the rest of the family got tested. My Mom, my three other sisters, my brother and I were all diagnosed with celiac disease soon after. I had lost 40 pounds in about a month, throwing up every morning, was down to barely 100 lbs, so to say the least, I was so glad to find out what was wrong with me. It's interesting to hear about everyone else's Family celiac disease situations, because they are all over the place, with some being the only one in their family with celiac disease, and others like my family where all the kids ended up with it. I have to wonder if maybe even though my Dad tested negative, his side of the family is also celiac disease, because my uncle had colon cancer and my grandpa had a lot of digestive problems, and so this is why all of us kids were so "lucky" to end up with celiac disease....i don't know, just an interesting thought.

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