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

Where Did The Celiac Come From?

terob254

By terob254
in Doctors

Recommended Posts

terob254 Newbie
terob254
Posted

I was diagnosed 2 years ago with Celiac after being misdiagnosed for many years. I had gall bladder surgery with complications and was told that triggered the Celiac. My gastro doctor said it was the worst case of Celiac he had seen. All of my villi (sp?) were completely flat, not one left standing. Both of my parents have now had the blood test for Celiac and both were negative. Two of my children have tested negative. My brother and sister have yet to be tested. In my extended family (aunts, uncles, cousins), no one has had any symptoms, so no tests for any of them. If both of my parents have tested negative, where did the gene and disease come from? I would appreciate a response from anyone who could shed some light on this. And thank you in advance for your help.

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

Celiac.com Sponsor (A8-M):


psawyer Proficient
psawyer
Posted

Not everyone who carries the genetic predisposition actually develops celiac disease. I don't know the exact numbers, but the majority of people with the gene never develop the disease.

We are born with the genes, but it seems that a trigger of some kind is needed to "activate" the genes and begin the autoimmune response. The trigger is typically something that puts stress on the body. Surgery, childbirth, infectious disease and external stress such as divorce or loss of a job have all been reported.

Were your parents tested for the genes, or just for active autoimmune activity? The standard celiac test panel does not include genetic tests, only antibody testing.

cruelshoes Enthusiast
cruelshoes
Posted

Did your parents have the genetic testing done? Some 30% of people in possess the genetics most common for celiacs. Very few go on to develop the disease. There is not enough information in your post to know where the disease came from in your case. If your family has not had the genetic testing, some or all of them may have the celiac-associated genes, but not be celiac.

lizard00 Enthusiast
lizard00
Posted

My doctor did the genetic test on me, and we discovered that I carried a double copy of the gene most commonly associated with celiac disease. I, too, wondered why my mom (I'm actually wondering if my dad is just undiagnosed) has never developed it. She had 4 babies, has had 2 surgeries, and more than her fair share of stress. I think that if the gene were to be triggered for her, it would have been by now.

My personal theory, and remember, it is just that, is that perhaps she just carries one copy of the gene and therefore had less risk of it being triggered, thus she never developed celiac disease. Since I carry two copies, if one didn't get flipped on, there was still the other one. Just my thoughts...

ThatlldoGyp Rookie
ThatlldoGyp
Posted
I was diagnosed 2 years ago with Celiac after being misdiagnosed for many years. I had gall bladder surgery with complications and was told that triggered the Celiac. My gastro doctor said it was the worst case of Celiac he had seen. All of my villi (sp?) were completely flat, not one left standing. Both of my parents have now had the blood test for Celiac and both were negative. Two of my children have tested negative. My brother and sister have yet to be tested. In my extended family (aunts, uncles, cousins), no one has had any symptoms, so no tests for any of them. If both of my parents have tested negative, where did the gene and disease come from? I would appreciate a response from anyone who could shed some light on this. And thank you in advance for your help.

It is genetic, just like any disease you have to have the right matching set from mom and dad to have the 'right environment' for the disease to develop.

You do realize that even though the majority of your family has tested negative they have to continue being tested for the rest of their lives if they just do the blood screening testing? Just because they are negative NOW doesn't mean that celiac isn't lurking and can trigger at any time...

Personally, since I am a celiac and my husband is of european descent (scotch/ irish) we have decided to get the genetic testing for my son as to rule that in or out as a possibilty once and for all for him.

terob254 Newbie
terob254
Posted
  • Author
Not everyone who carries the genetic predisposition actually develops celiac disease. I don't know the exact numbers, but the majority of people with the gene never develop the disease.

We are born with the genes, but it seems that a trigger of some kind is needed to "activate" the genes and begin the autoimmune response. The trigger is typically something that puts stress on the body. Surgery, childbirth, infectious disease and external stress such as divorce or loss of a job have all been reported.

Were your parents tested for the genes, or just for active autoimmune activity? The standard celiac test panel does not include genetic tests, only antibody testing.

terob254 Newbie
terob254
Posted
  • Author
Not everyone who carries the genetic predisposition actually develops celiac disease. I don't know the exact numbers, but the majority of people with the gene never develop the disease.

We are born with the genes, but it seems that a trigger of some kind is needed to "activate" the genes and begin the autoimmune response. The trigger is typically something that puts stress on the body. Surgery, childbirth, infectious disease and external stress such as divorce or loss of a job have all been reported.

Were your parents tested for the genes, or just for active autoimmune activity? The standard celiac test panel does not include genetic tests, only antibody testing.

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

Celiac.com Sponsor (A8-M):


terob254 Newbie
terob254
Posted
  • Author

Thank you everyone for your information. I don't think gene testing was done. I will pass on the info to my parents and have my kids tested for the genes as well. I'm still learning so much about this disease. It's been a real learning experience for me and my doctor.

UnhappyCoeliac Enthusiast
UnhappyCoeliac
Posted

Hell? :rolleyes:<_<

ThePhilly's Newbie
ThePhilly's
Posted

Not everyone who carries the genetic predisposition actually develops celiac disease. I don't know the exact numbers, but the majority of people with the gene never develop the disease.

We are born with the genes, but it seems that a trigger of some kind is needed to "activate" the genes and begin the autoimmune response. The trigger is typically something that puts stress on the body. Surgery, childbirth, infectious disease and external stress such as divorce or loss of a job have all been reported.

Were your parents tested for the genes, or just for active autoimmune activity? The standard celiac test panel does not include genetic tests, only antibody testing.

I had bloodtests done because my son tested positive for celiac (he had classic celiac symptoms) and I tested positive, but do not have symptoms. If the bloodtests are positive, does that mean that it's "active" or am I a "carrier?" Not sure if that's a dumb question, but I'm still learning and with the fact that I have no symptoms it's harder to accept.

lizard00 Enthusiast
lizard00
Posted
I had bloodtests done because my son tested positive for celiac (he had classic celiac symptoms) and I tested positive, but do not have symptoms. If the bloodtests are positive, does that mean that it's "active" or am I a "carrier?" Not sure if that's a dumb question, but I'm still learning and with the fact that I have no symptoms it's harder to accept.

If you tested positive through the celiac panel bloodtests, that would indicate that you have active celiac disease. Some people have very high test results, but very little or no symptoms; "silent celiac disease."

Whether you are symptomatic or not, you should be gluten-free as well.

caek-is-a-lie Explorer
caek-is-a-lie
Posted
Whether you are symptomatic or not, you should be gluten-free as well.

Yes, I agree, because the disease doesn't just attack your intestines and increase your chance of certain cancers...it can attack other organs like your skin or brain. I'm pretty sure my Narcolepsy and gluten intolerance are inseparably linked...especially since when I eat gluten I get bad neurological symptoms. If you tested positive for the antibodies, I'd suggest not eating gluten ever again! Because some damage from the antibodies is irreversible.

ThePhilly's Newbie
ThePhilly's
Posted

Thanks for your help! I have gone gluten-free since the tests came back, but thought I'd ask!

Archived

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

Go to topic listing

  • 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. knitty kitty
      0

      My Story Chapter Two

    2. Known1
      - Known1 commented on Jefferson Adams's article in Gluten-Free Foods & Beverages
      10

      Blistex Medicated Lip Balm and Other Gluten-Free Brands

      Thanks for this article. I am finding a lot of very valuable information here on Celiac.com. All of my mostly used Carmex just went into the trash. I also just ordered a Blistex 3 pack from Amazon for 4 bucks. Amazon link: https://www.amazon.com/dp/B0044B4HSM
    3. Scott Adams
      - Scott Adams commented on knitty kitty's blog entry in Thiamine Thiamine Thiamine
      1

      My Story

      Thank you for sharing this—your story is heartbreaking, powerful, and, unfortunately, far too familiar to many in the celiac community. Being dismissed, misdiagnosed, and blamed for symptoms for decades, only to later discover they were all connected to untreated celiac disease and malabsorption, represents a profound failure of the medical system. The p...
    4. Scott Adams
      0

      Gluten-Free Chinese-Style Green Beans with Garlic and Peppers

    5. knitty kitty
      1

      My Story

  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,414
    • Most Online (within 30 mins)
      7,748
    Donna Shields
    Newest Member
    Donna Shields
    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

    • Haugeabs
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Haugeabs · Posted

      For my Vit D3 deficiency it was recommended to take with Vit K2 (MK7) with the Vit D. The Vit K2 helps absorption of Vit D3. Fat also helps with absorption. I take Micro Ingredients Vit D3 5000 IU with Vit K2 100 micrograms (as menaquinone:MK-7). Comes in soft gels with coconut oil.  Gluten free but not certified gluten free. Soy free, GMO free.   
    • trents
      FDA looking for input on Celiac Gluten sensitivity labeling PLEASE READ and submit your suggestions

      By trents · Posted

      @Known1, I submitted the following comment along with my contact information: "I have noticed that many food companies voluntarily include information in their ingredient/allergen label section when the product is made in an environment where cross contamination with any of the nine major allergens recognized by the FDA may also be likely. Even though celiac disease and gluten sensitivity are, technically speaking, not allergic responses, it would seem, nonetheless, appropriate to include "gluten" in that list for the present purpose. That would insure that food companies would be consistent with including this information in labeling. Best estimates are that 1% of the general population, many undiagnosed of course, have celiac disease and more than that are gluten sensitive."
    • Wheatwacked
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Wheatwacked · Posted

      That is the goal, after all.  
    • Wheatwacked
      Blood results

      By Wheatwacked · Posted

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

      By Known1 · Posted

      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
×
×
  • 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.