Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

  • 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 Lone Mutant...

AmericanaMama
 Share

Recommended Posts

AmericanaMama Contributor
AmericanaMama
Posted

I have an interesting genetic predisposition. I have what I like to term "boutique" conditions. The thing is, none of my family members have ever seemed remotely interested in being tested for any of them. Early on, I did stress that these were genetic conditions and therefore they may be prone to them or at least carriers of them.

My husband and I are carriers of a condition that took the life of one of our children Just after turning a year old. Again, neither side of the family were inclined to ever check for this for themselves or their own children. Sometimes I feel like they are in denial. And just think that "well, it's just Robin and Tom , not us. They are the freaks", LOL.

Now that I know I have celiac disease and have the genetic component to it, again neither of my sisters seem to be even remotely concerned about being checked for it or their kids. Even though they both have autoimmune issues. One of my sisters said of her girls "well they do have their dads genetic material, so I'm hoping they get more of that". I give up.

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

Celiac.com Sponsor (A8-M):


RMJ Mentor
RMJ
Posted

I am sorry for the loss of your child due to a genetic condition.

I did the 23andMe genetic testing because I like to know what my genetics has in store for me.  Before I got the results, I asked my brothers if they wanted to know if I got any results indicating susceptibility to serious conditions.  Neither wanted to know.  

It is recommended that first degree relatives of those with celiac disease be tested for it.  One of my brothers has been tested (negative), the other has not. Some people just prefer to remain in the dark.

Scott Adams Grand Master
Scott Adams
Posted

I think you hit the nail on the head as I've also found the same thing among my extended family. Some also have celiac disease but won't go gluten-free, and others who I've recommended to get tested because they have obvious symptoms won't get tested. To me it's strange to not want to know if you might be prone to a serious heath issue, but some people prefer to ignore it, apparently even if they also suspect that they might actually have it.

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


  • Member Statistics

    • Total Members
      126,199
    • Most Online (within 30 mins)
      7,748
    johnkelley.kj
    Newest Member
    johnkelley.kj
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      120.9k
    • Total Posts
      69.2k
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • trents
      Celiac Maybe a Possibility?

      By trents · Posted

      Because you have significantly reduced your gluten intake over a considerable amount of time, it is likely that you will test negative on the antibody tests. However, if the $112 for the Quest test is not a burden, it wouldn't hurt to try. It tests for total IGA (to ascertain if you are IGA deficient) and tTG-IGA. If total IGA is deficient, it can result in false negatives in other IGA tests. The tTG-IGA is the single most popular test ordered by physicians. The Quest test is not a complete celiac panel by any means (refer to the linked article above) but it might be a good place to start. Personally, I think you know enough to conclude that you need to get serious about avoiding gluten, whether you have celiac disease or NCGS. Human nature being what it is, however, many people seem to need an official diagnosis of celiac disease in order to stay on the bandwagon. Otherwise, they seem to rationalize cheating on the gluten-free diet. And there is this misconception out there that NCGS is inconvenient and uncomfortable but not harmful so it's okay to cheat. The more we learn about gluten-related disorders the more they seem to not fit into our neat little black and white categories. By the way, celiac disease is not a food allergy. It is classified as an autoimmune disorder.
    • More2Learn
      Celiac Maybe a Possibility?

      By More2Learn · Posted

      These responses are all extremely helpful, ty.  Really good reminder about omega 6.  I also know I'm low in zinc; I took the zinc test where I drank it on a spoon and couldn't taste it.  To that end, I try to eat a lot of oysters.  I do think it would be a good idea to get the blood test.  Two questions: 1-  Is there any reason you wouldn't recommend that I just buy and take a test like this as a first step? 2- I've been somewhat gluten free since ~Jan 2023 (technically organic, gluten free, soy free, light on dairy).  I eat a lot of meat, vegetables, rice -- a common breakfast for me is three eggs and a sausage link, and I can't remember the last time I had a sandwich or bread.  However, because in my mind I didn't think I had an allergy, and I more was doing gluten free to avoid artificially iron-enriched foods, I do make exceptions.  I'll eat breaded calamari.  When my Dad visits, I split mozzarella sticks with him because he loves them so much.  I'll eat the "gluten sensitive" items at a restaurant and if they asked, "is cross contamination ok?",  I always said yes.  Based on that, since I never probably fully eliminated gluten, but it was significantly reduced... is that good enough to take the blood test?  Because the pain in my side gets SO bad (really sometimes I can't function, and I absolutely thought I was dying), I am hesitant to do the gluten challenge.  Would it make sense to take the test, and if it's negative, then consider doing the challenge and seeing if I can deal with eating the bread every day? Thanks again!
    • Yaya
      Muscle Twitching

      By Yaya · Posted

      For me, with osteoporosis, Celiac and more than 1 heart condition, the slower, safer route is preferable.  I'm on 5 meds per day.  Too much of anything can disturb absorption of this or that. Have a Happy Thanksgiving.  I'm gone for a few days.  
    • Wheatwacked
      Muscle Twitching

      By Wheatwacked · Posted

      It took me 2015 to 2021 at 10,000 IU a day to get to 80 ng/ml. In 2019 I was still only 47 ng/ml The highest it has reached is 93.  Tested every 3 months.     While a one time massive dose can be used to quickly raise vitamin D levels, its effects only last three months.  Because vitamin D is stored in fat, an obese person would require more to raise blood level.     Effect of High-Dose Vitamin D Supplementation on Volumetric Bone Density and Bone Strength   The point of higher vitamin D is for the mental health and immune system requirements.  Also this study included supplementing calcium.  "Research suggests that women with low levels of vitamin D have a higher risk of breast cancer. Vitamin D may play a role in controlling normal breast cell growth and may be able to stop breast cancer cells from growing." This information is provided by Breastcancer.org. https://www.breastcancer.org/risk/risk-factors/low-vitamin-d-levels Higher vitamin D levels have been consistently associated with reduced risks of colorectal cancer https://www.cancer.gov/about-cancer/causes-prevention/risk/diet/vitamin-d-fact-sheet  
    • RMJ
      Contaminated cooking oils

      By RMJ · Posted

      You can search here for certified gluten free olive oil GFCO productfinder
×
×
  • Create New...