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'm The Only One :(

fisharefriendsnotfood

Recommended Posts

fisharefriendsnotfood Apprentice
fisharefriendsnotfood
Posted

There is NO ONE in my whole family that knows they have celiac disease. I found out it was a genetic disease a few weeks ago, and was like, then how do I have it? I suspect it's from my dad's side of the family, because my aunt has stomach problems but has never been tested for celiac disease. I really think she has it though.

And then, my uncle on my mom's side is "allergic to wheat". I don't think he's been formally tested to a wheat allergy, it just "bothers him". He's not even wheat-free though; we had my family over for a family member's birthday and he ate the white birthday cake, which is obviously not wheat-free.

But I still think it's from my dad's side.

BUT, neither of my parents have it I think, because they have NO symptoms of Celiac at all. I don't think they've been tested though; but still, they're both tall and at normal weight.

WHERE DID MY celiac disease come from???

Thanks,

Jackie

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

Celiac.com Sponsor (A8-M):


skoki-mom Explorer
skoki-mom
Posted

I got tested because my sister was diagnosed last winter. Like your parents, I don't have any symptoms, never have, maybe I never would have become symptomatic, who knows. Our parents have also tested negative, but they both have bowel "issues". In fact, I am the only member of the family that is normal in that department, go figure!!! What I have learned so far is that it seems to be a recessive gene, so both parents must carry it, but a recessive gene is needed from both of them for us to have celiac disease. I read an article that says family members should be tested for antibodies througout the course of their life because the celiac disease could become "active" at any time. I think a lot of family members avoid screening because they just really don't want to know. I admit I have had many a moment when I wish I'd never had that blood test, even though I know it was the "right" thing to do. Sometimes being responsible really sucks, lol. Chances are if your siblings (if you have any), aunts, uncles and cousins were tested, someone else would have it too.

KaitiUSA Enthusiast
KaitiUSA
Posted

Some people do not get symptoms with celiac so you can't tell with symptoms. You have to get a full celiac panel to detect it. Allergy tests will not pick it up because it is not an allergy. It is genetic but it could be traced back generations..your parents do not necessarily have to have it but they have the gene for it. If they have the gene then it can be activated at any time so they really should be tested every so often to make sure.

I can tell you now...throughout your families history...someone had it along the way...probably a few people...even if they did not know it.

jams Explorer
jams
Posted

Am I understanding it right that BOTH, mother and father must have the gene? I think mine is from my dad's side. My mom was tested but was negative. I am not sure what they tested either. I am having detailed test results sent to me from my last test. They just said it was "normal". I am not sure what they all test for where we go to the doctor. We go to the same clinic just different doctors.

My dad will never get tested. He loves beer too much and hates the doctor. I have read a lot about celiacs, but this part has always been a little hazy for me.

Thanks to anyone that can help clear this up!!

skoki-mom Explorer
skoki-mom
Posted

Try this link! I thought it did a good job of explaining the genetics behind celiac disease.

www.uchicagokidshospital.org/pdf/uch_007936.pdf

newo ikkin Rookie
newo ikkin
Posted

I'm not sure where mine came from either only because no one in my family wants to get tested. My mom and 2 of my siblings got bloodwork done but that all come back negative. So unless some others in my family suck it up and get tested I won't know.

Guest nini
Guest nini
Posted

no one else in my family is willing to get tested... my dad is the only one who was willing to "try" the gluten-free diet and see if it helped him (it did)... I think both of my parents have it, and my sister, and there's and aunt I'm really sure has it, but NO ONE is willing to get tested. I wonder why this is...

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

Celiac.com Sponsor (A8-M):


skoki-mom Explorer
skoki-mom
Posted
no one else in my family is willing to get tested... my dad is the only one who was willing to "try" the gluten-free diet and see if it helped him (it did)...  I think both of my parents have it, and my sister, and there's and aunt I'm really sure has it, but NO ONE is willing to get tested. I wonder why this is...

<{POST_SNAPBACK}>

Because they don't want to know, they don't want to go on the diet. I have often thought I wish I didn't get tested because I'm not *sick*, as in I don't have symptoms, but I do know it is better in the long run for me to know. But, that is why they won't get tested, they are scared it will come back positive.

bluelotus Contributor
bluelotus
Posted
Try this link!  I thought it did a good job of explaining the genetics behind celiac disease. 

www.uchicagokidshospital.org/pdf/uch_007936.pdf

<{POST_SNAPBACK}>

thanks for the great pdf. others were talking about the inheritance of this disease a week or so ago and I tried to explain that most genes, and most diseases, are not inherited in the typical recessive fashion (very different from what they tell you in high school bio.) and that even having a gene for something doesn't mean you will get it. genes don't act/work in solice and instead work together with many others, which is why genetic counseloing is never exact (except for maybe blood type or color blindness).....and then you have to take the environment into account in addition to other genes. all of this together is why things like genetic disease and cancer are so difficult to predict. we have around 30,000 genes, imagine designing that algorithm to predict inheritance.....!!!

Guest gfinnebraska
Guest gfinnebraska
Posted

I don't know where mine came from either. My brother doesn't want to "know" ~ he would never switch to a gluten-free diet. Neither one of my parents "seem" to have it. My other relatives all live in Sweden, so no way of knowing! I just pray that I don't pass it on to my sons. :(

tarnalberry Community Regular
tarnalberry
Posted

Well, not only do you not need both parents to give you the gene, but having the gene doesn't mean you will definitely get celiac. It has to be triggered. Many more people carry one of the genes without developing celiac disease or gluten intolerance.

nettiebeads Apprentice
nettiebeads
Posted

I'm the only one in my immediate family and don't know of any aunts, uncles, grands or cuz that have it. But it's probably from my mother's side (100% Swede and as stubborn as they come)

Guest gfinnebraska
Guest gfinnebraska
Posted
(100% Swede and as stubborn as they come)

<{POST_SNAPBACK}>

LOL ~ Same here, Nettie! I'm 75% Swede and just about as stubborn (or so my family says...)

ponita Newbie
ponita
Posted

Since my dx, I found that I have celiac disease on both my mother and father's side. On my mother's side, my grandmother, aunt and 2 cousins have it, on my father's side it's 2 cousins. No one discussed it until I was dx'd which I think finally put a name to all the symptoms others were having.

Hey, look at this the bright side, I can go to family reunions with 'safe" foods!

Gotta laugh!

Interesting note: my mother's side of family is swedish, fathers side Czech.

Melissa

luvs2eat Collaborator
luvs2eat
Posted

I'm the only one in my family... altho my brother or sister refuse to be tested. They have, I'm sure, the derm part of celiac and because they can take meds (for eczema, etc) they're not willing to give up their yummy breads.

My daughter was just diagnosed.

fisharefriendsnotfood Apprentice
fisharefriendsnotfood
Posted
  • Author

Thanks everyone for all the great replies!

My sister had the blood test when she was really little, but it came back negative. I thought that meant she doesn't have it; she could have it even if it came back negative???

I asked my dad about it yesterday but he said maybe someone had it, like a great-grandparent or something.

Thank you!!!!!!!!!!

-Jackie

KaitiUSA Enthusiast
KaitiUSA
Posted
Thanks everyone for all the great replies!

My sister had the blood test when she was really little, but it came back negative. I thought that meant she doesn't have it; she could have it even if it came back negative???

I asked my dad about it yesterday but he said maybe someone had it, like a great-grandparent or something.

Thank you!!!!!!!!!!

-Jackie

<{POST_SNAPBACK}>

If someone has the gene then it can be triggered at any time in life. So just because you test negative younger does not mean you do not have it now- it just means at that point it was not triggered. If there is people in the family with it, everyone should be tested every 2-5 years(sooner if symptoms appear) to make sure it has not activated. Symptoms doesn't really matter with celiac though...they may have it and not even realize it...or maybe theirs just was not triggered.

Guest BellyTimber
Guest BellyTimber
Posted

Their symptoms are nerve, bone, skin, etc symptoms, even heart.

Just about every part of the body.

Also overweight.

If you include these there will be less people without symptoms of celiac disease and equivalent but the principle still applies, it just hasn't expressed itself in these ways yet.

If you put suitable words in the serahc faciliy you will come up with the list of 200 symptoms someone posted a few months ago

.

dogear Rookie
dogear
Posted
Because they don't want to know, they don't want to go on the diet.  I have often thought I wish I didn't get tested because I'm not *sick*, as in I don't have symptoms, but I do know it is better in the long run for me to know.  But, that is why they won't get tested, they are scared it will come back positive.

<{POST_SNAPBACK}>

People can be stubborn. Personally though, I'm glad enough not to have the medical risks associated with celiac. But I would RATHER DIE THAN NOT BE gluten-free. I would rather be tortued the same way people were at Abu Gharib than intentionally cheat on my diet.

If I ever ended up intentionally eating wheat, I would probably feel as bad about myself as a born again Christian would about going into prostitution six months before her wedding.

Archived

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

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


  • Member Statistics

    • Total Members
      131,180
    • Most Online (within 30 mins)
      7,748
    Ruby B
    Newest Member
    Ruby B
    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

    • Jane878
      My mo,ther married a bread making when I was 4

      By Jane878 · Posted

      By the time I was 5 I had my first auto0immune disorder, Migraine headaches, with auras to blind me, and vomiting, sensitivity to light and sound. I was 5 years old, and my stepfather would have pizza night, milling his own flour, making thick cheesy gluten pizza, that I would eat and the next day, I would have serious migraines, and my mother & stepfather did nothing about my medical problems. When I was 17 in my first year at college, I was diagnosed with my 2nd known auto-immune disorder, Meniere's disease. I was a elite athlete, a swimmer, and soccer player. And once again my parents didn't think anything of understanding why I had a disorder only older people get. Now after my mother passed from Alzheimer's disease she also suffered with living with gluten. She had a rash for 30 years that nobody could diagnose. She was itchy for 45 years total. My brother had a encapsulated virus explodes in his spleen and when this happened his entire intestines were covered with adhesions, scar tissue and he almost lost his life. He has 5 daughters, and when I finally was diagnosed after being pregnant and my body went into a cytokine storm, I lost my chance to have children, I ended up having Hashimoto's disease, Degenerative Disc disease, and my body started to shut down during my first trimester. I am 6ft tall and got down to 119lbs. My husband and I went to a special immunologist in Terrace, California. They took 17 vials of blood as we flew there for a day and returned home that evening. In 3 weeks, we had the answer, I have Celiac disease. Once this was known, only my father and husband made efforts to change their way of feeding me. At the family cabin, my stepfather & mother were more worried that I would ruin Thanksgiving Dinner. It wasn't until one of my cousins was diagnosed with Celiac disease. They finally looked into getting Gluten Free flour and taking measures to limit "gluten" in meals. He did nothing but ask for me to pay for my own food and wi-fi when I came to the cabin to stay after our house burned down. When he informed my mother, they proceeding to get into a physical fight and she ended up with a black eye. The is just more trauma for me. Sam had no interest in telling the truth about what he wanted. He lied to my mother that he had asked my husband if I could pay for "food" when he asked Geoffrey if I had money to pay for my wi-fi. My mother hates when he spends so much time on the computer so he lied and said I could pay for my own food. I will remind you I weighed 119lbs at this time. (At 6ft) that is a very sick looking person. Neither parent was worried about my weight, they just fought about how cheap my stepfather was. As my mother was diagnosed with Alzheimer's disease in 2014. He had her sign over the will to a trust and added his children. He had no testimonial capacity at the time, so she signed without proper papers. Making this Trust null and void. When I gave my brother my childhood home, my mother stated I would be getting an equal part of inheritance to the house on Race. It currently worth 2.0 million $. I got nothing, and my stepfather has since disowned me b/c of my claim and he knows that my mother would never have left it uneven between my biological brother and myself. She sat me and my husband down, as we lived at the Race Street house and treated and took care of it as our own. My brother took over b/c he was going through a horrific divorce and needed a home so he could get a better custody deal with his soon to be ex-wife who was a Assist DA for Denver. She used the girls against him, and he & I were the primary caregivers. We, Judd and I spent the most time with them pre the divorce. Once Judd moved into the house, he threw all of my mother, grandmother and my family heirlooms out to the Goodwill. Nobody told my mother about this as she was going through cancer treatment and had Alzheimer's disease in her mother and her sister. My stepfather and biological brother took advantage of this matter, as I called a "family council" that my brother just never could make it to at the last moment. All of the furnishing, kitchen ware, everything was in the house my brother just moved into. He had had 2 weddings, I chose to elope b/c my stepfather ruined my brother's first wedding by talking about his relationship with my brother in front of my dad and his entire family, insulting him and having my grandfather leave the ceremony. It was a disaster. My stepfather just plays dumb and blames my father for the slight. I was the only child not to have a wedding. So, my mother and stepfather never had to pay for a thing. My mother had had an agreement with my father he'd pay for college and all medical issues with their kids, myself and Judd. So truly my mother never had to pay for anything big for me in her entire life. I am looking for anyone that has had a similar story, where they grew up in a household that had a baker that regularly milled flour and ate gluten. What happened to you? DId you suffer from different auto-immune diseases b/c of living with a baker using "gluten" Please let me know. I have been looking into legal ways to get my stepfather to give me what my mother had promised, and he erased. Thank you for listening to my story. Jane Donnelly  
    • trents
      Blood results

      By trents · Posted

      Possibly gluten withdrawal. Lot's of info on the internet about it. Somewhat controversial but apparently gluten plugs into the same neuro sensors as opiates do and some people get a similar type withdrawal as they do when quitting opiates. Another issue is that gluten-free facsimile flours are not fortified with vitamins and minerals as is wheat flour (in the U.S. at least) so when the switch is made to gluten-free facsimile foods, especially if a lot of processed gluten-free foods are being used as substitutes, vitamin and mineral deficiencies can result. There is also the possibility that she has picked up a virus or some but that is totally unrelated to going gluten-free.
    • Sheila mellors
      Is Toblerone Gluten-Free?

      By Sheila mellors · Posted

      I asked about the new fruit and nut one and the Dietician said yes I could eat it safely. Hooe this helps
    • Heatherisle
      Blood results

      By Heatherisle · Posted

      Daughter has started gluten free diet this week as per gastroenterologists suggestion. However says she feels more tired and like she’s been hit by a train. I suggested it could be the change to gluten free or just stress from the endoscopy last week catching up with her. Just wondering if feeling more tired is a normal reaction at this stage. I suppose it’s possible some gluten might have been present without realising. Have tried to reassure her it’s not going to resolve symptoms overnight
    • DAR girl
      Celiac and allergic to common subs and adds in prepared foods

      By DAR girl · Posted

      Looking for help sourcing gluten-free products that do not contain potato or corn derived ingredients. I have other autoimmune conditions (Psoriatic Arthritis and Sjogrens) so I’m looking for prepared foods as I have fatigue and cannot devote a lot of time to baking my own treats. 
×
×
  • Create New...