Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

The Only One

Jo.R

By Jo.R
in Coping with Celiac Disease

Recommended Posts

Jo.R Contributor
Jo.R
Posted

My mom is 1 of 11 kids, my dad 1 of 5, all whom have had kids, grand kids, and for some, great grandkids. I am the only Celiac, the only one with any stomch problems. I thought this stuff ran in families, or is that only sometimes?

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


Kaycee Collaborator
Kaycee
Posted

Jo.

Coeliac does run in families. I am one of 8 children, my father one of 11 and my mum one of 3 children and all of those cousins etc of mine, and my four sons, and nobody but me has coeliac. It is probably no-one else except for about 4 people in my immediate family that have been tested and they all came back negative. But it is the others who have not been tested, who should get tested, but they are reluctant. I am so sure that if they were all tested, there will be at least one or two with this disease. But I can't force anybody to get tested as they are all adults. I am only thankful that I have got my answers and that I can take steps to ensure I continue to stay healthy.

Cathy

debmidge Rising Star
debmidge
Posted

You are the only one so far who is aware that they have celiac disease...

My husband's sister appears to have celiac disease but thinks that as long as she doesn't get tested and proven positive for it, she doesn't have celiac disease, yet she has a lot of symptoms of it.

happygirl Collaborator
happygirl
Posted

Jo:

Celiac is said to run in families because there is a genetic link to Celiac. There are two main genes that account for the majority of Celiacs. However, just having the gene doesn't mean that a person will have Celiac. About 30-40% of the American population has one or both of the genes, but only about 1 in 133 have Celiac (of which, 97% don't know it).

So, it may be that you are the only one who has it, or the only one who has it *now* (could be triggered in others later), or the only one who knows they have it.

For this reason, ALL first degree relatives should be tested for Celiac via bloodwork (according to celiac disease researchers and experts). First degree relatives have a higher chance of having Celiac than the average person.

Laura

Queen Serenity Newbie
Queen Serenity
Posted

Hi Jo,

Welcome to my world! ;) I am also the only one in a very large family who has celiac's. My mom is 1 out of 11, and my dad is 1 out of 6. I have a ton of cousins, nieces, nephews, etc... I was diagnosed 11 years ago. Since technology has grown, more and more doctors can make the proper diagnosis. I believe that people could not be diagnosed properly back in the day. So, it's likely that one of your ancestors carried celiac's. That's why we think that we are alone. But, more than likely, we were not!

Vicki

babygirl1234 Rookie
babygirl1234
Posted

i am the only 1 in my family that has celiac disease

Nancym Enthusiast
Nancym
Posted

I bet there are many more that have trouble with gluten but aren't even aware of it.

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


TinkerbellSwt Collaborator
TinkerbellSwt
Posted

I am also a loner in the celiac world in my family. I am sure there are others, my father and brother both have stomach issues, they got the blood test and swear that is enough to prove they dont have it.. anyone else, just wont get tested. oh well, its their lives and their bodies that they may be doing damage to. I just cant convince them. So, for now me and my son are alone, and we arent sure if my son has it. He is 21 months so we keep him gluten free.

kbtoyssni Contributor
kbtoyssni
Posted

It could be that your mum's side has one gene, your dad's side another so you've got two making you more suseptible to developing it. It's also possible that other members of your family have it, but they've got some non-traditional symptoms and don't realize it. Anyone have allergies, reoccuring headaches, joint pain, unexplained sore throats, depression? All these could be celiac-related but often not caught.

Archived

This topic is now archived and is closed to further replies.

Go to topic listing
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,243
    • Most Online (within 30 mins)
      7,748
    Maya Baum
    Newest Member
    Maya Baum
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • knitty kitty
      Accuracy of testing concerns

      By knitty kitty · Posted

      Welcome to the forum, @McKinleyWY, For a genetic test, you don't have to eat gluten, but this will only show if you have the genes necessary for the development of Celiac disease.  It will not show if you have active Celiac disease.   Eating gluten stimulates the production of antibodies against gluten which mistakenly attack our own bodies.  The antibodies are produced in the small intestines.  Three grams of gluten are enough to make you feel sick and ramp up anti-gluten antibody production and inflammation for two years afterwards.  However, TEN grams of gluten or more per day for two weeks is required to stimulate anti-gluten antibodies' production enough so that the anti-gluten antibodies move out of the intestines and into the bloodstream where they can be measured in blood tests.  This level of anti-gluten antibodies also causes measurable damage to the lining of the intestines as seen on biopsy samples taken during an endoscopy (the "gold standard" of Celiac diagnosis).   Since you have been experimenting with whole wheat bread in the past year or so, possibly getting cross contaminated in a mixed household, and your immune system is still so sensitized to gluten consumption, you may want to go ahead with the gluten challenge.   It can take two years absolutely gluten free for the immune system to quit reacting to gluten exposure.   Avoiding gluten most if the time, but then experimenting with whole wheat bread is a great way to keep your body in a state of inflammation and illness.  A diagnosis would help you stop playing Russian roulette with your and your children's health.      
    • trents
      Accuracy of testing concerns

      By trents · Posted

      Welcome to the celiac.com community, @McKinleyWY! There currently is no testing for celiac disease that does not require you to have been consuming generous amounts of gluten (at least 10g daily, about the amount in 4-6 slices of wheat bread) for at least two weeks and, to be certain of accurate testing, longer than that. This applies to both phases of testing, the blood antibody tests and the endoscopy with biopsy.  There is the option of genetic testing to see if you have one or both of the two genes known to provide the potential to develop celiac disease. It is not really a diagnostic measure, however, as 30-40% of the general population has one or both of these genes whereas only about 1% of the general population actually develops celiac disease. But genetic testing is valuable as a rule out measure. If you don't have either of the genes, it is highly unlikely that you can have celiac disease. Having said all that, even if you don't have celiac disease you can have NCGS (Non Celiac Gluten Sensitivity) which shares many of the same symptoms as celiac disease but does not involve and autoimmune reaction that damages the lining of the small bowel as does celiac disease. Both conditions call for the complete elimination of gluten from the diet. I hope this brings some clarity to your questions.
    • McKinleyWY
      Accuracy of testing concerns

      By McKinleyWY · Posted

      Hello all, I was diagnosed at the age of 2 as being allergic to yeast.  All my life I have avoided bread and most products containing enriched flour as they  contain yeast (when making the man made vitamins to add back in to the flour).  Within the last year or so, we discovered that even whole wheat products bother me but strangely enough I can eat gluten free bread with yeast and have no reactions.  Obviously, we have come to believe the issue is gluten not yeast.  Times continues to reinforce this as we are transitioning to a gluten free home and family.  I become quite ill when I consume even the smallest amount of gluten. How will my not having consumed breads/yeast/gluten for the better part of decades impact a biopsy or blood work?  I would love to know if it is a gluten intolerance or a genetic issue for family members but unsure of the results given my history of limited gluten intake.   I appreciate the input from those who have gone before me in experience and knowledge. Thank you all!
    • trents
      A little about me and my celiac disease

      By trents · Posted

      I know what you mean. When I get glutened I have severe gut cramps and throw up for 2-3 hr. and then have diarrhea for another several hours. Avoid eating out if at all possible. It is the number one source of gluten contamination for us celiacs. When you are forced to eat out at a new restaurant that you are not sure is safe, try to order things that you can be sure will not get cross contaminated like a boiled egg, baked potatos, steamed vegies, fresh fruit. Yes, I know that doesn't sound as appetizing as pizza or a burger and fries but your health is at stake. I also realize that as a 14 year old you don't have a lot of control over where you eat out because you are tagging along with others or adults are paying for it. Do you have support from your parents concerning your need to eat gluten free? Do you believe they have a good understanding of the many places gluten can show up in the food supply?
    • Peace lily
      Gluten Free Coffee

      By Peace lily · Posted

      Okay went online to check green mountain k cups .It was said that the regular coffees are fine but they couldn’t guarantee cross contamination.with the flavors. im trying to figure out since I eliminated the suyrup so far so good. I’m hoping. thanks it feels good to listen to other people there views.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.