Jump to content
  • Join Our Community!

    Do you have questions about celiac disease or the gluten-free diet?

chrissy

How Many Family Members With Celiac?

Rate this topic

Recommended Posts

how many family members in your family have celiac. my identical twin 14 year old girls have it, and my 10 year old daughter also. as far as we know, no one on either side of dh's or my family have it.

christine

Share this post


Link to post
Share on other sites

My father and an aunt on my mother's side. All other first-degree relatives tested and none have it.

richard

Share this post


Link to post
Share on other sites

The only other person brave enough to have the blood test in my family is my sister and that test is negative. The brothers are too chicken.

Share this post


Link to post
Share on other sites

My youngest son has Celiac. My husband, older son and I have been tested. My Mom was tested. We four are negative. No one else has been tested. I imagine it's because they have no symptoms, and I haven't really reminded them (with the exception of my sister) that Ty didn't have any symptoms either. In fact, other than my Mom & sister, none of our extended family have even asked if it is genetic or hereditary or what.

Share this post


Link to post
Share on other sites

In My family:

Daughter: DX Coeliac

Me: Gluten sensitive - Enterolabs Dx

Father of DX daughter: Alopecia, GI symptoms. blood tests (Ema only I think) Neg (falsly I think)

Sister 1: Exactly same symptoms as Me, been gluten-free too long to get meaninful blood/biopsy.

her son: 'Hyper' floaters, allways hungry, strange vascular anomoly in bowel. Getting tested soon.

Sister 2: Younger but same symptom at same age as me and Sis 1. gluten-free for 3 weeks feeling better.

Mother: Thin as a rake, rheumatoid A. Milk intolerant. oestoporosis. won't test.

Father: Motor neuron D. died. had lots of fractures and gastric issues.

Also various aunts and cousins on both sides of my family either really skinny or really overweight with GI problems. We are English/some Irish & french way back.

Share this post


Link to post
Share on other sites

My grandmother has celiac disease and I suspect that my aunt also has celiac disease. I think my mom may be gluten intolerant since she has tested negative for celiac disease.

Share this post


Link to post
Share on other sites

I am the only one "officially" diagnosed, but I swear my sister has it also.

I actually finally talked her into going for the bloodtest, and it came back negative. I can't believe the GI didn't want to pursue it further though. She has everything the same as I do except she has the big C instead of the big D.

I believe it is on my mom's side extensively. Both her sisters died of gastro problems and were basically skeletons when they died (also had severe osteoporosis). My grandmother has always had gastro issues.

I have had the girls checked but not the boys yet. Both girls tested negative for celiac but I swear Rhiannon has it.

Karen

Share this post


Link to post
Share on other sites

My dad and brother have the same symptoms that I did but don't seem to interested in changing.

Share this post


Link to post
Share on other sites
Guest Viola

I have it and our oldest daughter has it. I suspect my mom has it as well, but will likely never be tested.

Share this post


Link to post
Share on other sites

I'm the only dx one. I have some cousins that are sick all the time like me, but they will not get tested. My mother said that her father could only eat milk and cornmeal - everything else made him sick. He died when I was a baby, all his photos make him look like a small walking skelton. All that to say I suspect that he had celiac disease.

Share this post


Link to post
Share on other sites
Guest Rad

My three sisters have had problems all their lives with dermatitis. Tried to tell them that new research regarding this skin disorder relates it to gluten intolerance. They did want to hear this.

My dear brother committed suicide in 1982 thinking he had cancer. One of his symptons was undigested food in his stools.

Had a great grandmother with osteoporsis. And an aunt that died of colon cancer.

Have a son that's been told he has Irritible Bowel. After reading this Board, recently sent him a letter highly recommending he get tested for C/D.

Dianna

Share this post


Link to post
Share on other sites

My mother-in-law was DX a few years ago. My husb and son just DX recently. My husb's 3 siblings were tested with negative results.My brother-in-laws autistic son was tested negative also.

Share this post


Link to post
Share on other sites

I am the only official one diagnosed but we think many people in the family have it. They just won't get tested but alot have the same symptoms I did!!!

Share this post


Link to post
Share on other sites
My dear brother committed suicide in 1982 thinking he had cancer. One of his symptons was undigested food in his stools.

Dianna

Dianna,

That is tragic. If only celiac disease was more well known back then......

Hugs.

Karen

Share this post


Link to post
Share on other sites
Sister 1: Exactly same symptoms as Me, been gluten-free too long to get meaninful blood/biopsy.

her son: 'Hyper' floaters, allways hungry, strange vascular anomoly in bowel. Getting tested soon.

What do you mean by "hyper floaters"? Do you mean something that looks like transluscent grey amoeba-like thingys that float around your eyes? And when you look quickly in another direction by moving only your eyes, they follow?

Sorry for the weird description, that's the only way I can describe it.

Share this post


Link to post
Share on other sites

Let's see... My Grandmother had is as does my mother and my 6 yr old son. DH's Grandmother had it and I suspect his mother has it, but she keeps *forgetting* to be tested. DH will be tested next Tuesday and hopefully DS #2 will be tested after that (he's almost 5). I had a blood test which came out negative as did my sister and her children.

Share this post


Link to post
Share on other sites

As far as I know, I am the only one with celiac disease. That includes distant relatives as well.

Now that I think about it, maybe I was adopted.

Share this post


Link to post
Share on other sites

There seems to be a lot of emphasis on "ethnic groups", such as irish or European descent in regards to Celiac Disease. I'm a bit new at this (three week into my research, and awaiting test results). But from my readings so far, the newer research materials indicate that older studies may be flawed. What I'm getting is that newer research shows that Celiac Disease is an "equal opportunity" disease - no racism involved, so to speak. Personally, I think that a lot of poor people in the U.S. (poor Whites, Hispanics, African Americans, etc.) die without ever knowing that they have the disease, partly due to lack of access to good medical care, and partly due to lack of education in regards to health care. I live in California, and very few doctors take the state medical insurance (Medi-Cal) due to the low reinbursement fees. A surgeon friend of mine performed an operation on a Medi-Cal patient, and after all of his overhead, etc. was paid, he made 85 cents for performing the procedure. True story, even he got a laugh out of it. I've also had dealings with the "low income" clinics who take Medi-Cal (state insurance), and they want those patients in and out, so that they can see as many as possible in the shortest period of time in order to make a profit. Do you think those type of doctors are going to take the time to diagnose such complicated illnesses as Celiac Disease, Lupus, or some of the other rare diseases? Sadly, no. There are some illnesses such as Sickle Cell Anemia that are specific to certain ethic groups, but I don't think Celiac has a preference. Just my opinion so far, after limited research/reading about such immune system disorders as Celiacs and Lupus.

Chap

Share this post


Link to post
Share on other sites

My brother and I both have it. My late father had an iliostomy for ulcerative colitis over 20 years ago. I wonder if he had been tested for celiac disease, the results would have been positive?

Share this post


Link to post
Share on other sites

I find it sad that none of my relatives- including my parents-WILL NOT get tested even though they all witnessed how sick I was and how healthy I am now. I'm sure aout half of them have it but, they keep their heads in the sand :(

Share this post


Link to post
Share on other sites

My younger sister is gluten intolerant but wasn't diagnosed with celiac and my older sister was tested and is negative, my mom is negative as well. We don't know about my dad's family since we aren't in touch with any of them.

Share this post


Link to post
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.

Guest
Reply to this topic...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.


  • Top Posters +

  • Upcoming Events

    • April 17, 2019 Until April 27, 2019
      0  
      April 17-27, 2020   For the past few years many of you have asked us to arrange a River Boat Cruise that will allow us to visit Amsterdam's famous Keukenhof Gardens at its prime time of the blossoming of the millions of Tulips and Hyacinths - alongside the windmills of the Netherlands.  With the participation of a minimum of 20 persons we have arranged an All-Inclusive Cruise from Antwerp to Amsterdam.  This cruise will not be offered to the public until January, 2019 and always sells out quickly.   THERE WILL BE NO MONEY REQUIRED NOR COMMITMENT FROM YOU until we have all the final costs and details.  If you are at all interested check out our website for as many of the details that we have as of this time.   We need your request to be placed on a list of interested participants so we can present that number to Uniworld to show we have the sincere interest in this All-Inclusive Bob & Ruth's Gluten-free Cruise.   PLEASE CHECK OUT OUR WEBSITE FOR THE DETAILED INFORMATION THAT WE HAVE AS OF THIS TIME.   http://bobandruths.com
    • April 24, 2019 04:00 PM Until 08:00 AM
      0  
       
       
       
      Celiac Emotional Healing Support Group
       
       
       
      Again you are invited to join Johnny Patout, LCSW for Baton Rouge's first emotional healing support group meeting to assist those living with celiac disease manage the emotional challenges so many of us face. Most often the emotional disturbances include depression, disinterest in normal activities, insomnia, grief, mood changes, anxiety, inability to concentrate, extreme concern about managing a gluten-free lifestyle and other emotional and behavioral challenges.
       
      The professionals at Jamestown Avenue Counseling Center created the emotional healing support group to give us a safe place to begin to process our emotions and support each other as we heal emotionally while managing celiac disease and the resulting autoimmune disorders.
       
      The emotional healing support group meets every Thursday, 6:00-7:00pm, at the Jamestown Avenue Counseling Center of Baton Rouge. Jamestown Avenue Counseling Center is located at 4637 Jamestown Avenue, Baton Rouge, Suite B-1. Suite B-1 is upstairs.
       
      The support group is free and open everyone managing celiac disease. For more information: emotionalhealingforceliacs@hotmail.com
    • May 04, 2019 Until May 05, 2019
      0  
      Nourished Festival is a family-friendly event with 10 locations across the US. Attendees will be able to sample food, health and beauty products, meet with companies, learn about the most current food lifestyles, receive coupons and attend educational sessions with industry experts. 
      Nourished Festival, managed by The Nourished Group and presented by Enjoy Life Foods, is the largest gluten-free, allergy-friendly and specialty diet event in the US, with 10 locations including.
      ABOUT THE NOURISHED FESTIVALS
      Managed by The Nourished Group, formerly The Gluten Free Media Group, The Nourished Festivals are the largest and fastest growing special diet consumer events in the United States. Started in 2007, the events have expanded from one to ten cities throughout the country. The festivals cater to anyone looking to lead a healthier lifestyle or those who follow a specialty diet due to autoimmune conditions, food sensitivities, allergies or intolerances. Offerings including Paleo, Keto, Plant-Based, Gluten-Free, Allergen-Friendly and Nut-Free products. The events provide the opportunity for attendees to sample and purchase new products, receive coupons, meet with brand ambassadors and attend educational classes with industry experts. For more information, visit http://www.nourishedfestival.com 
       
×
×
  • Create New...