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

I Made An Interesting Discovery Today!


justlisa

Recommended Posts

justlisa Apprentice

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

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

squirmingitch Veteran

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

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

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

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

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

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

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.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - Wheatwacked replied to Heatherisle's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      34

      Blood results

    2. - Known1 replied to xxnonamexx's topic in Gluten-Free Foods, Products, Shopping & Medications
      6

      FDA looking for input on Celiac Gluten sensitivity labeling PLEASE READ and submit your suggestions

    3. - Wheatwacked replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      31

      results from 13 day gluten challenge - does this mean I can't have celiac?

    4. - Wheatwacked replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      31

      results from 13 day gluten challenge - does this mean I can't have celiac?

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,411
    • Most Online (within 30 mins)
      7,748

    EBeloved
    Newest Member
    EBeloved
    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

    • Wheatwacked
    • Wheatwacked
      Celiac Disease causes more vitamin D deficiency than the general population because of limited UV sunlight in the winter and the little available from food is not absorbed well in the damaged small intestine.  Taking 10,000 IU a day (250 mcg) a day broke my depression. Taking it for eleven years.  Doctor recently said to not stop.  My 25(OH)D is around 200 nmol/L (80 ng/ml) but it took about six years to get there.  Increasing vitamin D also increases absorption of Calcium. A good start is 100-gram (3.5-ounce) serving of salmon,  vitamin D from 7.5 to 25 mcg (300 to 1,000 IU) but it is going to take additional vitamin D supplement to be effective.  More importantly salmon has an omega-6 to omega-3 ratio 1:10 anti-inflammatory compared to the 15:1 infammatory ratio of the typical Western diet. Vitamin D and Depression: Where is all the Sunshine?
    • Known1
      Thank you for sharing your thoughts.  I respectfully disagree.  You cherry picked a small section from the page.  I will do the same below: The agency is seeking information on adverse reactions due to “ingredients of interest” (i.e., non-wheat gluten containing grains (GCGs) which are rye and barley, and oats due to cross-contact with GCGs) and on labeling issues or concerns with identifying these “ingredients of interest” on packaged food products in the U.S. “People with celiac disease or gluten sensitives have had to tiptoe around food, and are often forced to guess about their food options,” said FDA Commissioner Marty Makary, M.D., M.P.H. “We encourage all stakeholders to share their experiences and data to help us develop policies that will better protect Americans and support healthy food choices.” --- end quote Anyone with celiac disease is clearly a stakeholder.  The FDA is encouraging us to share our experiences along with any data to help develop future "policies that will better protect Americans and support healthy food choices".  I see this as our chance to speak up or forever hold our peace.  Like those that do not participate in elections, they are not allowed to complain.  The way I see it, if we do not participate in this request for public comment/feedback, then we should also not complain when we get ill from something labeled gluten-free. Have a blessed day ahead, Known1
    • Wheatwacked
      Here is a link to the spreadsheet I kept to track my nutrition intakes.  Maybe it will give you ideas. It is not https so browsers may flag a security warning. There is nothing to send or receive. http://doodlesnotes.net/index3.html I tracked everything I ate, used the National Nutrition Database https://www.foodrisk.org/resources/display/41 to add up my daily intake and supplemented appropriately.  It tracks about 30 nutrients at once.
    • Wheatwacked
      Hello @catnapt, That's so true.  Every person with Celiac Disease has different symptoms.  There are over 200 that it mimics.  Too many still believe that it is only a childhood disease you outgrow.  Or it's psychosomatic or simply a fad.  Idiots.  It's easy to get angry at all of them.   You just have to pick at the answers until you find the ones that work for you.  I too suffer from not being able to take the drugs that work for "everyone else".  SSRIs make me twitch ane feel like toothpicks are holding my eye open, ARBs cripple me.  Statins cause me intestinal Psuedo Obstruction.  Espresso puts me to sleep.  I counted 19 different symptoms that improved from GFD and dealing with my nutritional defecits.  I couldn't breath through my mouth until I started GFD at 64 years old.   My son was born with celiac disease, biopsy diagnosed at weaning.   So why are we the one-percenters.  Why, after being silent for so long, does it suddenly flare? There is the possibility that you have both Celiac Disease and Non Celiac Gluten Sensitivity.  NCGS was not established as a diagnosis until 1980.  NCGS is diagnost by first elimating Celiac Disease as the cause, and showing improvement on GFD.  Nothing says you can't have symptoms from both.  Wheatbelly: Total Nutrition by Dr. Davis was helpful to me. We come to the forum to share what we've learned in dealing with our own symptoms.  Maybe this will help someone. Speaking of which if you don't mind; what is your 25(OH)D vitamin D blood level?  You mentioned a mysterious Calcium issue. Vitamin D, Calcium and Iodine are closely interactive. It is not uncommon for postmenopausal women to have insufficient intake of Iodine.   (RDA): Average daily level of intake sufficient to meet the nutrient requirements of nearly all (97%–98%) healthy individuals; often used to plan nutritionally adequate diets for individuals You are a one-percenter.  You may need higher intake of some essential nutrient supplements to speed up repairing the damages.
×
×
  • 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.