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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 Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

How Many Family Members Have Celiac?
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25 posts in this topic

I would like to know how many in your family or extended family have Celiac?

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I would like to know how many in your family or extended family have Celiac?

I just left a message in your other thread, but incase you don't see it:

All three of my children have Celiac. Both my parents and I along with one of my three sisters also have Celiac.

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All of them.

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No-one in my immediate family seems to have coeliac disease but my dad found out recently that two relatives on his side of the family do have it. He was tested rather reluctantly, so I hope now he realises I wasn't just being over-dramatic!

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My youngest son (6yrs) and I have celiac. I have two third cousins on my dad's side who are confirmed celiac. I am suspicious of my father, brother and my dad's brother.

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I am the only confirmed, however my son has been gluten-free for the last 2-3 years and won't go back. My sister is in the process of being tested but has noticed when she avoids gluten she feels better. I fear she will get a false negative because she has avoided so much for so long. I am certain my mother is probably as well, but she is in denial, though supportive of me.

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Just me. My sister has Crohn's Disease and refuses to get tested for Celiac. My parents were both tested after I was diagnosed but were negative. My dad likes to think that because he tested negative that it couldn't possibly have come from his side of the family. But the thing is, we know everyone on my mom's side and none of them have it. But my dad doesn't know any of his extended family so its possible one or some of them are celiac!

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I'm the only one. My sister has been diagnosed IBS but doesn't think she has Celiac and doesn't want to get blood testing done while she's still eating gluten or go gluten-free. She's happy and quite healthy, so for now I'm not arguing.

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OY- most of them will not get tested :angry::angry::angry:

i have 2 DQ8s- one from both mom and dad. i 100% believe my Dad has it- and he wont get tested :(((((( he's had psoriasis for YEARS & anxiety. both his parents ended up with dementia- and i dont want my dad to :(

Mom's got Hashimoto's and is at least Gluten Sensitive.

Sister is gluten free, and brothers are wheat free.

my aunt's docs dx her with "Crohns" & "Colitis" but never tested her for Celiac- and i asked her to, but she doesnt get it. My cousin has wheat & dairy allergies & gets seizures from aspartame- her doc wants to test her for Celiac but i told her the tests will be innaccurate if she's not eating gluten.

my Dad's Aunt died from stomach cancer. and my mom's side of the fam has thyroid issues and early heart disease.

this is why im so upset with our medical system

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Just me so far. My Dad was tested and negative and my mom and sister are going to get tested. They don't have any symptoms/other health issues though so unless it is silent celiac I am sure they are negative.

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Just me. I believe my mom had it as she had all of the symptoms

diarrhea/constipation

bloating

tummy pain

fibromyalgia

diabetes

what we now believe was dermatitis herpetiformis

IBS

easy bruising

canker sores

restless leg

Untreated, her body failed when she was only 77. My sorrow is now that I wasn't diagnosed sooner that maybe it might have helped her.

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Just me. I believe my mom had it as she had all of the symptoms

diarrhea/constipation

bloating

tummy pain

fibromyalgia

diabetes

what we now believe was dermatitis herpetiformis

IBS

easy bruising

canker sores

restless leg

Untreated, her body failed when she was only 77. My sorrow is now that I wasn't diagnosed sooner that maybe it might have helped her.

im sorry and share your frustration

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I'm the only one who has been tested. Though I have told the others they should be. My brother and maternal uncle have crhones (sp). And there are other digestive problems in my father's family. I think my mom might have it. I can't force them to get tested as it is their own health.

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Me and a 3rd cousin so far, I'm sure my Grandma has it, and my sister probably does...Who knows how many others...

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My daughter and I have it, we seem to be both having issue with all grains so we're actually grain-free. My mother has GI symptoms too, possibly the same thing but she doesn't want to skip gluten/grains.

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My mother and her brother, my sister's daughter, and both of my kids have it. We also suspect that my brother's kids have it.

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Me and my Mum both have celiac disease in our family

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My father and me.

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Just me so far. My parents were tested and are negative, but my dad sure does have a lot of the symptoms. My sister was just diagnosed with fibromyalgia, but tested negative for celiac. My brothers have not been tested yet. My one brother told me that he has enough problems- like being tested makes you sick? My son was adopted, so he doesn't seem to have it- at least not from me!

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Both parents dead, but either one a likely suspect. Brother dead - think he had it. Oldest sister and I are non-tested and gluten free, middle sister "just gets on with it" but always asks if I have enough toilet paper when she comes to stay :rolleyes: , oldest sister's daughter is diagnosed celiac.

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Almost my entire family and extended family are gene + or double gene positive. Of those, 4 have been antibody positive, including myself and my son. Two other family members are having their biopsies this month. Two others were biopsy negative. We have only had one great nephew that was totally negative.

My Mother and her brother both died of intestinal lymphoma, so it is taken very seriously in my family. Those that are gene positive, but antibody and biopsy negative have still been advised to be gluten restricted anyway due to the family history.

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Both my daughter and I have it. I suspect my mother also had it but died undiagnosed at a ripe old age in 1997. My son is adopted so I guess he has his own set of genes to deal with.

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I suspect my parents, brother and grandmother all have it but they refuse to be tested for it. My mother and grandmother both have thyroid disease. My grandmother had stomach problems and anemia for years and just recently survived surgery for intestial cancer. My brother was diagnosed with "IBS" years ago but he got rid of it for the most part by changing his diet to low carb/mostly organic. So he probably has celiac, but would not show up positive on the test because he mostly eat whole foods and very little bread/pasta. It does make it easier to eat at his place when I visit. My dad had stomach problems and IBS all throughout my childhood and he had his gallbladder taken out to try to fix it, gallbladder surgery seemed to help a little, but he still had some eating restrictions after getting the gallbladder out. I had my gallbladder out as well and also found it releived some problems but brought on new ones. I suspect (though I can't prove) that celaic killed my dad's gallbladder as well as mine.

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My grandmother, my mother and both her brothers, one of Mom's sisters (the other probably has it as well, but doesn't believe it), and probably at least two, if not all 3 of my adult and nearly adult children who refuse to be tested.

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I would like to know how many in your family or extended family have Celiac?

As of now, I'm the only one with Celiac. I have a sister with Lupus and Raynaud's. When I found out I had Raynaud's I thought I might have Lupus as well. When I got the DX of Celiac, she was tested, and it came back neg. She has stomach issues due to her Lupus as well. She wants me to be tested for Lupus. We have three other siblings which seem to have no signs of Celiac or Lupus, they don't want to go get tested either. My parents are both gone, however, we feel our mother had Lupus and or Celiac. My children do not want to be tested and show no signs, however, I do want them tested.

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    • Confused
      Your doctor is woefully mis-informed.  First of all you did get a positive on both (barely on the TTG IGA).  That does not mean you should be referred to a dietician.  You should be referred to a GI to run either the full celiac blood panel (your GP can not order it at Kaiser) and schedule you for an endoscopy to obtain four to six biopsies to confirm celiac disease which is the GOLD standard level of care. Read the research here: http://www.cureceliacdisease.org/screening/ Ask your doctor for a GI referral.  Show them the print out out from the University of Chicago.  Be nice, but they'll do it.   Also, did your GP run a IGA deficiency test?  Do you have those results?   Best to email your doctor.  Reqest a GI referral.  Once it is in writing, your doctor has to act.  Let him know that what is required for a proper diagnosis per leading celiac research centers and the American GI Association. http://gi.org/guideline/diagnosis-and-management-of-celiac-disease/ DO NOT GO GLUTEN FREE UNTIL ALL TESTING IS DONE!  This is so critical.  Otherwise the tests will be invalid.  Then you'll be in diagnostic limboland!   After your GI consult, you can ask to be tested for vitamin and mineral levels.  Spend time learning about celiac disease and the gluten diet.  Learn about cross contamination and hidden sources of gluten. Again, DO NOT GO GLUTEN FREE YET!  You can do anything you like, of course, but get the facts first!     
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    • Silent Celiac or Non-digestive symptoms
      My celiac diagnosis started with me seeking medical attention for an ongoing migraine problem. This lead to MRI's that showed white spots on my brain which lead to blood work that showed a positive ANA (1:640) and a trip to the rheumatologist. The rheumatologist suggested the biopsy and a referral to a GI specialist after he felt confident that I didn't have lupus. The funny thing is that I don't have severe tummy troubles. I have some bloating occasionally and gas along with differing bowel patterns but that's about it. The most annoying and troublesome symptoms for me are migraines, fatigue and sometimes I get a little achy. My results for the prometheus test were high, blood anti-bodies were present and my biopsy revealed Grade B2 villi damage (the worst classification according to Corazza, Roberts, Ensari). Anyway I guess what I am wondering is how long after being "glutened" will I have a migraine, vitamin deficiency or other neurological symptom so that I will know that I am in trouble? I feel like if I had the tummy trouble to go with this I would know when I have eaten something that has been cross-contaminated. I just want to heal soon and not risk further intestinal damage or lymphoma. Thanks for your reply!
    • ANA and Celiac
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    • Confused
      Hello,  I'm new to the forum and new to gluten/celiac. I had some abdominal discomfort a couple weeks ago and my doctor (Kaiser) at the last second said he'd also test my blood for gluten issues. Bottom line, last Sunday night i get the results which I didn't quite understand. TISSUE TRANSGLUTAMINASE IgG 1.06 Index <=0.90 Index Tissue transglutaminase IgA 0.91 Index <=0.90 Index Then i get an email from him saying you tested celiac positive, I'm referring you to a dietitian for a gluten free lifestyle (head exploded). After scouring the internet for days, I've read my fair share of good and bad celiac articles. Right now it seems like kaiser just wants me to go gluten-free which is fine if I have celiac disease, but I'm not sure what the numbers indicate or how bad they are, or how much potential damage has been done. Has anyone gone through a similar process? Do I need to ask for further tests?  I'm still in shock a bit I guess but really feel like I'm in the dark and reading everying on WebMD and other celiac sites gives me hope and crushes my dreams at the same time. By the way I'm 35 and male, if that matters.   Thanks
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