• Ads by Google:
     




    Get email alerts Celiac.com E-Newsletter

    Ads by Google:



       Get email alertsCeliac.com E-Newsletter

  • Announcements

    • admin

      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.

How Many Family Members Have Celiac?
0

25 posts in this topic

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

0

Share this post


Link to post
Share on other sites
Ads by Google:
Ads by Google:


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.

0

Share this post


Link to post
Share on other sites

All of them.

0

Share this post


Link to post
Share on other sites

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!

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites
Ads by Google:


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.

0

Share this post


Link to post
Share on other sites

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!

0

Share this post


Link to post
Share on other sites




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.

0

Share this post


Link to post
Share on other sites

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

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites




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.

0

Share this post


Link to post
Share on other sites

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

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

Me and my Mum both have celiac disease in our family

0

Share this post


Link to post
Share on other sites

My father and me.

0

Share this post


Link to post
Share on other sites

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!

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      107,354
    • Total Posts
      935,655
  • Member Statistics

    • Total Members
      65,034
    • Most Online
      3,093

    Newest Member
    angelaemely
    Joined
  • Popular Now

  • Topics

  • Posts

    • Ugg I feel you there huge japan fan here, normally I would suggest nordicware, microwave cooking ware, and buying raw fish, egg,s and veggies then cooking in the steamer, grill plate, and omelette maker for these kinds of trips or bringing meal bars. I have carb issues also and eat ketogenic, while they might not taste that good julian bakery make protein bars that are dairy, gluten free and ketogenic diet approved with low carbs, they also make a grain free granola mix , breads etc. Hmm are you good with Japanese? I can get you some romanized phrases for medical terms, food, and gluten related questions so you can try to talk them over with people. I have not been up there in years but I have a old friend up there who used to be a navy medic and lives near there who I would have help me out with issues and finding stuff. Wish I could offer more help, this last minute kind of thing there is not much  I can do.
    • I'm in Okinawa for a week to visit family and for research-related reasons, and despite research on eating gluten-free in Okinawa, things have been unexpected and going wrong from the start. I've been here for 24 hours now and have already ingested at least 3 items with gluten (I just got over what doctor was pretty sure was refractory celiac and was recovering well even after a big scare with eating barley after mix-up with a specifically prepared meal for an academic banquet). Now after the past 24h appear to be developing severe neurological symptoms. lymph nodes around neck are palpable and neck is extremely painful. Arms are weak and semi-numb on left side, clumsiness, arms and feet are burning in areas, balance issues, myoclonic twitching, visual impairment on left side (have confirmed optic neuritis), brain fog, EXTREME thirst (drinking 3-4 L water and still thirsty), and fibromyalgia -like symptoms. I took prednisone that my doctor gave me but doesn't seem to help much at all. I have contacted my doctor in states but don't think she can do anything until I am back and with lack of understanding for celiac here I don't think going to hospital is a good idea (not to mention have no idea costs with US health insurance), Stomach is growling but I currently am nauseated, feeling extreme fullness and have absolutely no appetite but will have to force myself to eat something in AM as i have to somehow make a professional research presentation. Is there ANYTHING i can do to lessen symptoms? Has anyone been in Okinawa and able to eat gluten free? -if so, can you please suggest what to eat from what store - I can read hiragana and katakana and a few kanji but am not fluent in Japanese. I have a small fridge but no stove in this hotel. I am in Naha and can't travel far, especially more so with symptoms. I can't eat fruit (fructose malabsorption), asked relative to boil eggs (she bought store pre-boiled eggs which I am scared to eat despite the lack of the kanji for "mugi" on the label), when I am having neurological symptoms any carbohydrate exacerbates symptoms, and I'm concerned that something like nuts or beans may worsen inflammation and symptoms if there is recent GI damage
    • So here's my adderall report.... I take it in the am, after my other melds and coffee. It's the XR version so it lasts all day for me, but the most helpful part is the first 4 hours. It takes a little while to kick in, and then I notice a calming effect. I'm usually very anxious so this is nice. I notice I'm more positive, and feel actually pretty happy, although I've got some major things pressing down on me I feel like I can think about them straight and get them taken care of, instead of panicking. I'm not starving all the time like I usually am. I felt hungry since I started taking my thyroid med and am worried I started gaining a bit of weight due to eating more. Now I don't feel like I need to eat between meals. I'm back to making every bite count towards nutrition. I've been better at taking care of more adult type duties. I'm happy to say that it's been a very good experience so far and I don't feel like I'm taking so much that I get a high from it. A decade or more ago I took double the dose I'm at now and I can tell you I was feeling that super happy high when it first kicked in, and although it felt great, it scared me as that is so on the path to some major addiction issues, you know? I can tell you that the current dose makes me feel like I did in my 20's, and I was pretty kick a$$ then, lol!
    • Thanks, I'll look into these. This is what I'd seen re: lanolin in d3.  http://www.livestrong.com/article/414363-difference-between-vitamin-d-from-fish-oil-lanolin/
    • Found this article about a 11 year old with celiac who was forced to eat outside after being told he could not bring and eat his own "Safe" food into Shields Tavern. Biggest point was the social impact it had on the kid and the way it was handled. I think this will bring up a new perspective and in the end perhaps open more restaurants to understanding that some of us have to bring own food to a gathering for our own safety and that ousting us for it is actual discrimination with legal implications. I personally bring my own food when I eat out, I tip big for it if they are understanding and normally order a 1 ingredient side to simplify it with the least chance of contamination. This is something many of us do to meet a compromise and interact in a social environment, and feel normal. While it really depends on person to person and how sensitive/comfortable you are eating out, heading out to accompany and eat with family, friends, and coworkers should be a option, even if we have to bring our own food as a compromise. http://wydaily.com/2017/07/20/family-of-disabled-11-year-old-sues-colonial-williamsburg-for-discrimination-nws/ On a side note remember not every chain and store are the same, always talk to a manager, or call ahead before bringing in your own food, or eating out with special requirements, dietary restrictions, or extreme food allergies/intolerance.
  • Upcoming Events