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

I Made An Interesting Discovery Today!

justlisa

By justlisa
in Coping with Celiac Disease

Recommended Posts

justlisa Apprentice
justlisa
Posted

For reasons I won't get into here, my full brother and I did not speak for a very long time (family dynamics...sigh). However, approximately 4 years ago, he found me on facebook and sent me a friend request... We've been friends on Facebook ever since...

So, lately, I've been posting a LOT about celiac/gluten intolerance/gluten free/etc. Today, I posted about how my dogs went gluten free when "mom" did.

My brother posted a very long comment about celiacs and how HE was dx 3 years ago... Blew me away!

I mean...once I started figuring out what my problem was (because the docs couldn't), I could easily see SO MANY "gluten" connections with my dad, grandmother, aunt, cousin, etc... (IBS, thyroid, etc, etc).

To hear about his dx...well, it just hit me, you know? I mean I can't tell you how many times I've heard, "there aren't any celiacs in the family"...yada yada yada.

Anyway, I just had to share this...

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

Celiac.com Sponsor (A8-M):


icm Apprentice
icm
Posted

Lots of people are in denial about it. They often don't "want to know". (sigh)

squirmingitch Veteran
squirmingitch
Posted

Wow. What a surprise Lisa. I too see celiacs but they don't want to know about it. When I found out about myself I did look up my nephew sort of long lost b/c of my sister & my horrid relationship. I wanted to let my nephew know especially as he has a child of his own now. I can only give the information & then hope they have enough sense to watch for signs & heed them when/if they come.

When I contacted my nephew, he informed me my niece had died a few months prior. I loved her & we got along very well but she was having a "rough life" & it was hard to get in touch with her. All things considered when everything came to light --- I have no doubt my niece was a celiac.

1desperateladysaved Proficient
1desperateladysaved
Posted

I think it is our responsibility to inform family. However, they may not believe us. So, please if you don't talk with your extended family let them know. I sent e-mails to some and papers to others. They might be suffering too. They may have no reason to check for Celiac.

moose07 Apprentice
moose07
Posted

Not that I would wish celiacs on anyone but it would be kind of nice to have a family member that unerstood my plight. But like other responders said my family is denial. I'm pretty sure my mom has it but she won't get checked for it. That is a neat discovery for you though!

frieze Community Regular
frieze
Posted

For reasons I won't get into here, my full brother and I did not speak for a very long time (family dynamics...sigh). However, approximately 4 years ago, he found me on facebook and sent me a friend request... We've been friends on Facebook ever since...

So, lately, I've been posting a LOT about celiac/gluten intolerance/gluten free/etc. Today, I posted about how my dogs went gluten free when "mom" did.

My brother posted a very long comment about celiacs and how HE was dx 3 years ago... Blew me away!

I mean...once I started figuring out what my problem was (because the docs couldn't), I could easily see SO MANY "gluten" connections with my dad, grandmother, aunt, cousin, etc... (IBS, thyroid, etc, etc).

To hear about his dx...well, it just hit me, you know? I mean I can't tell you how many times I've heard, "there aren't any celiacs in the family"...yada yada yada.

Anyway, I just had to share this...

And the neuro/psych aspects of celiac may account for some of your relationship issues....

kittty Contributor
kittty
Posted

I have a cousin who was constantly sick with stomach problems when we were little. She was always going in for medical tests, and going on restricted diets. I don't think they ever found the cause, or if she feels any better today (we live in different countries so rarely talk). My mom has had many medical issues, including hyperthyroid where she lost an extreme amount of weight, but she hasn't had the stomach issues.

I've also been posting articles and things on Facebook, so hopefully they'll see and possibly a lightbulb will go off. If 1 in 100 Caucasians has Celiacs, then statistically there must be at least one more person on my friend list with the illness.

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

Celiac.com Sponsor (A8-M):


Sunny600 Rookie
Sunny600
Posted

I think my son, who is 19 years old, struggling with ADD and depression, neither going to school not able to bring himself to apply for jobs, constantly on the toilet and suffering from stomach aches, has it too, but he refuses to be tested. He say s that if he finds out he does, then he'll start thinking he has problems when he really doesn't (yeah, right, like he doesn't already have problems) and he doesn't think he could live without eating gluten. I want to ask his doctor to test him anyway the next time he goes in for ADD meds, but I don,t know if I can do that since he is legally an adult.

I also wonder if my dad, who died of Alzheimer's at the age of 67 might have had it.....but I don't know.

IrishHeart Veteran
IrishHeart
Posted

I could easily see SO MANY "gluten" connections with my dad, grandmother, aunt, cousin, etc... (IBS, thyroid, etc, etc).

I can't tell you how many times I've heard, "there aren't any celiacs in the family"

Once I was DXed, both my parents' health histories made sense. My Mom went gluten-free at age 84 and is doing very well! She has more energy than I do. Off 9 years of GERD meds, no need for medications except a low dose of thyroid med. No more heart palps or high BP.

Sadly, it's too late for my Dad. He was a walking celiac if there ever was one.

I wrote to my entire extended family about celiac and gluten intolerance and how it was connected to all of their various AI diseases and depression and anxiety, etc. No takers. They saw me almost dying from this thing for 3 years, but I do not think they want to give up gluten, period. I begged my siblings to be tested. Nope. I have stopped nagging.

As for the "there aren't any celiacs in the family!!" line?

Well, SOMEONE has to be DXed first for that to be a valid issue in a family's health history. I was first, but I am not the last, I have no doubt.

Archived

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

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


  • Member Statistics

    • Total Members
      130,930
    • Most Online (within 30 mins)
      7,748
    Sheila Johnson
    Newest Member
    Sheila Johnson
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Heatherisle
      Blood results

      By Heatherisle · Posted

      Her result for the TTG Ab (IgA) was 19. Lab range 0.0 - 0.7. U/ml. 
    • trents
      Should I be screened for celiac disease?

      By trents · Posted

      TTG would refer to a blood antibody test. Not valid if you are already eating gluten free or mostly so. DQH would refer to a genetic test to see if you possess either or both of the two genes that have been connected most strongly to developing active celiac disease. The genetic test is more of a rule out measure than a diagnostic test as about 40% of the general population have one or both of those genes but only about 1% of the general population develops active celiac disease. If you don't have the genes but gluten causes you issues then the conclusion is NCGS (Non Celiac Gluten Sensitivity) as opposed to celiac disease. So, the genetic testing helps with a differential diagnosis. I don't know about the 2P. 2 Pairs of genes?
    • Scott Adams
      gluten-free Canada finds

      By Scott Adams · Posted

      Tell him to get me a case...just kidding! I wonder why they are not labelled gluten-free here in the USA? They don't have gluten ingredients.
    • Pamela Kay
      Diagnosed gluten allergy but not Celiac

      By Pamela Kay · Posted

      Glad this helped. There are lots of alternative breads out there, so someone has likely made some sort of paleo bread with no grain. And if you bake, experiment with some of the alternative flours to see what you can come up with. If you commit to the gluten-free diet 100%, you may want to do a bit of research on some of the tricker aspects of getting gluten out of your diet, such as cross contamination in the home kitchen (pots and pans, cutting boards, toaster, airborne flour). Don't feel you have to do everything at once, or let this overwhelm you. I've always said that going gluten free is a process, not a moment. The reason I mention this is that, if you think you are gluten-free, but still having symptoms, you may realize that even minute amounts of gluten cause a reaction for a while. Let me know if you have any questions.  Pam
    • Scott Adams
      Should I be screened for celiac disease?

      By Scott Adams · Posted

      The doctor was correct--if you are gluten-free the blood panel for celiac disease will not work, you would need to go on gluten challenge in order to be tested. Here is more info about how to do a gluten challenge for a celiac disease blood panel, or for an endoscopy: and this recent study recommends 4-6 slices of wheat bread per day:   This article might be helpful. It breaks down each type of test, and what a positive results means in terms of the probability that you might have celiac disease. One test that always needs to be done is the IgA Levels/Deficiency Test (often called "Total IGA") because some people are naturally IGA deficient, and if this is the case, then certain blood tests for celiac disease might be false-negative, and other types of tests need to be done to make an accurate diagnosis. The article includes the "Mayo Clinic Protocol," which is the best overall protocol for results to be ~98% accurate.    
×
×
  • Create New...