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

Celiac In Families?


Kasey'sMom

Recommended Posts

Kasey'sMom Enthusiast

Hi, I'm trying to get some information in how celiac disease runs in families. My dd has celiac disease and I just found out that I have celiac disease. My father and his mother have both been tested and had negative tests. I have two cousins on my father's side the have celiac disease as well.

My mother has not been tested yet and my husband and his family haven't been tested. I'm really hoping that they will all get tested.

We saw my dd Dr. today and he said that the celiac disease is a recessive gene. He said that my husband's family probably has the celiac disease gene as well.

For those of you that have a family history of celiac disease, was it on your mom's, dad's or both sides of the family?

Thanks for the insight! :)


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



Celiac.com Sponsor (A8-M):



MySuicidalTurtle Enthusiast

It is from my Mothers side of the family.

lovegrov Collaborator

Probably both. Definitely on father's.

richard

Kasey'sMom Enthusiast

Thanks for the information. I was really confused after my dd appointment yesterday. From what I've read the celiac disease does not follow the "typical" recessive gene pattern and can be passed on be mother and/or father. The gene can be from both sides of the family, but it's not required. Does this sound correct? :unsure:

mommida Enthusiast

My daughter has both DQ2 and DQ8. That suggests it was from both mother and father doesn't it? You only need to have one gene to be diagnosed.

Laura

frenchiemama Collaborator

My dad and his first cousin have it (who knows who else). I'm sure my brother has it, but he's young and stubborn and doesn't want to get tested. My sister tested negative but feels better on a gluten-free diet. My mom has severe symptoms and tested negative, but her doctor (also my doctor) says that she should try the diet anyway. My mom's (late) sister had a "grain allergy" and severe "eczema" which I think was celiac disease and DH (like me). My mom's side of the family also has a large amount of type 1 diabetes and mental illness, which I am convinced are related to gluten intolerance in some cases.

bluelotus Contributor

Hi,

I study population genetics and most genes don't follow that "typical" recessive path that we are taught in basic bio....very few do. Most genes interact with one another, exacerbating or negating various conditions. Certain conditions aren't determined by one gene either, but by the presence/absence of many. That is why things like cancer are so hard to predict genetically..... (remember, we have over 30,000 genes, try predicting that one, yikes!!)

That said, I have come across some information on the inheritance. It said that with one first degree relative (full sibling or parent) with celiac disease, you have a 10% chance of having it. Also, I've read women are more likely to develop it than men. The only people in my family that have been diagnosed are my mother and I (I am female, hence the name), but there are plenty of suspects in my family...then again, they don't want to hear about, but we've all been there.

Anyway, hope the info helps.


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



Celiac.com Sponsor (A8-M):



sb4480 Newbie

Hmmm....lets see....we have a long family tree of celiac disease

On my father's side:

My paternal grandmother was diagnosed as an adult but probably had it ages before then. She also had alzheimers. Does anyone know if there's a link between the two?

My father suspects he might have it. He's constantly in the bathroom.

My older brother has severe celiacs

I have it

I don't know much about that side of the family, most of my grandmothers siblings passed away before i was born. I don't think there's a link on my grand father's side but I don't know them well

On my mom's side

My grandfather was never diagnosed with celiac disease but he died of colon cancer

My mother's 1st cousin has celiac disease and DH

His brother has celiac disease

I suspect my mom has celiac disease.

There's definitely a familial link here.

Stephanie

Kasey'sMom Enthusiast

Yes this does help. My dad has classic celiac disease symptoms but his panel was negative. I think I convinced him to do the gene test since several others on his side of the family have it. My mother may get tested as well because she has un-explained pain etc. My mother-in law also has classic symptoms but I'm not sure she would ever commit to the gluten-free lifestyle even if she was positive. :blink: My husband said he would be willing to do the test as well.

I thought the Dr. was incorrect.. Thanks for the the insight!! :)

I would love start a support group in my area and I needed to get my stuff straight. :)

hez Enthusiast

For me there seems to be evidence that the celiac disease comes from my Mom's side of the family. My Mom might have celiac disease but does not want the endoscopy so she is just gluten-free. My maternal grandma has "stomach issues" and I suspect it is celiac disease.

I am not sure on my Dad's side but there are other auto immune diseases there.

I think it is very possible both of my parents carry the gene.

Hez

luvs2eat Collaborator

Maybe both, but definitely from my mom. I think my sister and brother had the DH form, but are not interested in being tested as there are meds for skin stuff... even tho I've explained the small intestine damage, they're not interested. Yikes!

Guest BellyTimber

"C(o)eliac disease" is a construct based on procedures and an arbitrary form of phenomenon in the intestine.

In real life there are so many forms of variation on the symptoms, intestinal and non-intestinal, of gluten and wheat sensitivity, and also more people will not be diagnosed with the immense range of relevant conditions than diagnosed, and in most cases a diagnosis of a relevant condition will not be linked to this sensitivity.

On that basis I see it on both sides of my family tree with my dad's side having more emphasis on intestinal symptoms.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,827
    • Most Online (within 30 mins)
      7,748

    Rebecca Hurst
    Newest Member
    Rebecca Hurst
    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

    • Colleen H
      Hello  I'm not sure what to think . Seems no matter what I do I get sick. I had some yogurt with only 2 grams of sugar and is labeled gluten free ...the strawberry version seemed to really set me off My jaw is burning as well as my stomach and my feet.  Horrible pain..plus acid reflux and nausea... sensitivity to touch pain. ..yikes !! I don't know if it's from the lactose in the yogurt or if I'm getting an ulcer  This condition can make you question yourself quite a bit.  Then if you are not sure the anxiety comes 😞 Does any of these symptoms sound familiar to anyone? The neuropathy is quite intense.  What do you eat or drink after this happens  Open to suggestions  Thank you 
    • sleuth
      Of course my son is on a 100% gluten free diet.  I wish his symptoms were not debilitating as there are right now.  He cannot work, even when a miniscule of cross contamination occurs.  It's not just GI distress, but intense fatigue, brain fog, depression, anxiety, insomnia, etc.  It's literally neurological inflammation.  Not to be taken lightly here.  We have sought out many other possible ways to cope during this window of time (8 months!!!!)  without success.   AN-PEP does not help and seems like studies on this are not well researched.  So, we are trying this out because research shows some promising results.  And, all participants showed no cravings afterwards, no signs of addiction.  The patch is different than the oral route such as smoking, vaping, gum, pouch, etc. 
    • Scott Adams
      Have you tried AN-PEP enzymes, for example, GlutenX (who is a sponsor here)? A lot of research has shown that it can break down small amounts of gluten in the stomach, before it reaches the intestines. It might be a better approach than risking nicotine addiction, and the questionable research around this. I also hope that he’s trying to be 100% Gluten-Free.
    • Me,Sue
      Hi all  I was diagnosed Coeliac a few years ago and follow a gluten free diet. The list of foods that I can eat without a problem grows shorter on a weekly basis. [I also have diabetes and asthma also].  BUT the reason I am posting this is because I seem to struggle with nausea quite a lot, which is really quite debilitating, and I was wondering if others suffer from nausea, even if following a gluten free diet. 
    • sleuth
      @fatjacksonthecat I have been doing some digging about the topic of nicotine and celiac.  I came across many studies that showed that the nicotine patch helped many with long covid and chronic fatigue syndrome.  I have a son who was diagnosed with celiac and his symptoms are severe when he is glutened.  He shows a lot of neurological inflammation and suffered with fatigue, brain fog, depression, anxiety and insomnia. There have been studies revealing that nicotine smoke actually masking celiac symptoms.  I also read that microdosing with a nictoine patch prevents one from addiction.  We are currently trying this out and so far it has lifted the brain fog and helped with anxiety and mood.  One of the studies I have read showed that it's not so much the dose, but the length of time a person is on the patch that showed improvements.  Many showed significant improvement as early as week 3 and continued through week 12.  We are taking 3 day breaks in between to make sure we don't down regulate the nicotine receptors.   How have things been for you?  Are you still chewing nicotine gum?  Perhaps, try the patch?  And how long did it take to ease up on your symptoms when glutened?
×
×
  • 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.