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Is it possible to be the only one in my family?

mewnicorns

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mewnicorns Apprentice
mewnicorns
Posted

Not sure if this is the right place to ask this question, but no one in my family has been diagnosed with celiac (which I realize does not mean they don't have it), and yet I know it's strongly hereditary. My grandparents all lived to old age and my parents are approaching their 70s. Obviously my grandparents have passed away, so they can't get tested, but I'm wondering if it's possible they lived that long despite being undiagnosed. I'm not asking this question to make any excuses for cheating or anything like that. I am just scared of all the information I'm reading about how celiacs tend to have higher mortality rates. My mom has had lifelong GI issues, and my dad has thyroid disease (although I don't think he has autoimmune thyroid disease). They will be getting tested soon so I'll know more then. For now I'm just wondering...is it possible I'm the unlucky first n my family?

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LCGraham Newbie
LCGraham
Posted

Have you talked with other family members, aunts, uncles, cousins nieces and nephews to ascertain if they have been diagnosed or have similar symptoms. 

In my immediate and extended family, me, my sister and brother have celiac disease, as well as my mother, her younger sister and at least one cousin; also included are my brothers daughter and grandson.  We all have some degree of thyroid issues.  Cousins on dads side of the family deny any issues as well as the rest of moms side.

cyclinglady Grand Master
cyclinglady
Posted
2 hours ago, mewnicorns said:

Not sure if this is the right place to ask this question, but no one in my family has been diagnosed with celiac (which I realize does not mean they don't have it), and yet I know it's strongly hereditary. My grandparents all lived to old age and my parents are approaching their 70s. Obviously my grandparents have passed away, so they can't get tested, but I'm wondering if it's possible they lived that long despite being undiagnosed. I'm not asking this question to make any excuses for cheating or anything like that. I am just scared of all the information I'm reading about how celiacs tend to have higher mortality rates. My mom has had lifelong GI issues, and my dad has thyroid disease (although I don't think he has autoimmune thyroid disease). They will be getting tested soon so I'll know more then. For now I'm just wondering...is it possible I'm the unlucky first n my family?

Did you know that once on a gluten free diet, all the horrible statistics diminish for celiacs?  So, I would not worry.  

Celiac disease is genetic, but it is some environmental trigger that sets it off.  So, it is perfectly reasonable for you to be the only known celiac in your family.  I am.  A few of my family members have tested negative.  A few went gluten free prior to my diagnosis and there is no way they would do a challenge.  And there some that just are not willing to get tested.  Just the thought of giving up gluten horrifies them.  We probably had a few relatives in the past who had celiac disease, but they mysteriously died of some “wasting disease”......

I try to encourage testing, but I realize that you can lead a horse to water, but you can not make him drink.  

RMJ Mentor
RMJ
Posted

I’m the only one in my family.

mewnicorns Apprentice
mewnicorns
Posted
  • Author
10 hours ago, LCGraham said:

Have you talked with other family members, aunts, uncles, cousins nieces and nephews to ascertain if they have been diagnosed or have similar symptoms. 

In my immediate and extended family, me, my sister and brother have celiac disease, as well as my mother, her younger sister and at least one cousin; also included are my brothers daughter and grandson.  We all have some degree of thyroid issues.  Cousins on dads side of the family deny any issues as well as the rest of moms side.

That's complicated because I don't really know my extended family. My parents immigrated here in the 70s so my cousins and aunts stayed behind. My uncle passed away either last year or the year before of some kind of liver issue, but he wasn't related to me (he was my mom's sister's husband). 

My mom has previously been diagnosed with IBS and has been complaining about digestive ailments, fatigue, and general aches and pains for as long as I can remember. However, she does not have thyroid disease. My dad does. I don't know who is more likely to have celiac. They are both getting tested. Not sure if my brother is or not. I think he should since he also inherited thyroid problems, but I think he's too scared to right now (probably my fault for the way I've reacted to the whole thing). 

Aisling Eldridge Rookie
Aisling Eldridge
Posted

It’s a auto immune disease but it’s also genetic, maybe one person of your extended family may have it ? But it is completely normal to be the only one out of my family (apart from getting into 5th cousins or what ever) I’m the only one so your not the only one !!!

  • 2 weeks later...
Gail W Newbie
Gail W
Posted

I am the only one in my immediate family (out of my 3 siblings and both parents) to have celiacs even thought I inherited the autoimmune thyroid issues from my parents, but have a second cousin who was diagnosed 8 years ago and that’s it.  

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ksymonds84 Enthusiast
ksymonds84
Posted

I am the only one in my immediate family, meaning my parents and sister.  In my family now, only 1 of 3 of my children tested positive for celiac.  My son is relieved every time he tests negative and celebrates with a beer. Haha.  He has no symptoms but tests anyway after all I went through.

exshuffleskater Rookie
exshuffleskater
Posted
On 1/9/2018 at 10:18 PM, mewnicorns said:

Not sure if this is the right place to ask this question, but no one in my family has been diagnosed with celiac (which I realize does not mean they don't have it), and yet I know it's strongly hereditary. My grandparents all lived to old age and my parents are approaching their 70s. Obviously my grandparents have passed away, so they can't get tested, but I'm wondering if it's possible they lived that long despite being undiagnosed. I'm not asking this question to make any excuses for cheating or anything like that. I am just scared of all the information I'm reading about how celiacs tend to have higher mortality rates. My mom has had lifelong GI issues, and my dad has thyroid disease (although I don't think he has autoimmune thyroid disease). They will be getting tested soon so I'll know more then. For now I'm just wondering...is it possible I'm the unlucky first n my family?

I have suspicions that other people in my family are also Celiac.  I'm afraid that until I have a positive diagnosis, they may have a hard time getting properly tested.  And diagnosis isn't easy.  You're over the hard part re the diagnosis.  (the diet is of course also difficult, not minimizing it)

 Anyway it's likely diagnosis just didn't happen for families whose kids were not having obvious sprue at a young age.  I kind of, did have obvious sprue, now that I look back, but at the time, other illnesses happened at the same time, so they followed those leads and not this one.  When I got really sick around age 40, that's when I started researching why... and eventually it led me to Celiac and Thyroid issues. I don't have a diagnosis yet, but I'm working on it as best I can. 

Was it a general practitioner / family doctor who diagnosed you, or were you sent to a Gastro clinic?  I'm asking because I'm not sure how to pursue my own diagnosis.

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    • trents
      Autoimmune Reaction to SO many foods

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    • Maura Gissen
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      By Maura Gissen · Posted

      They did. I was doing a lot better on the AIP diet. However, I was unable to do the full reintroduction process because I went off the AIP diet when I got pregnant and was experiences chronic nausea. This is what makes me believe it's food related.  I do check all of my food products and supplements and I am very careful about them being gluten free and trying to stay away from corn starch etc. However, I am eating gluten free breads that sometimes have rice flour, yeast, etc. - I seem to do fine with these breads/bread products some days, but then am sick other days.  I have never really had any GI symptoms outside of bloating. My symptoms are dizziness, brain fog, and a general feeling of unwellness or malaise, sort of like when you're going to get the flu.  I have had a lot of bloodwork done over the last three years, but I don't recall doing the CBC, CMP, or a celiac-specific test recently. That's helpful so that could at least provide some insight to see if I'm still being exposed.  Do you see most individual with celiacs having to take a period of time away from even gluten free breads and other cross-reactive foods to let their guts heal? I'm not sure how restrictive to get with my diet again since it's so challenging. 
    • trents
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      Did the symptoms commence after you discontinued the AIP diet? Have you checked all nutritional supplements and oral hygiene products for possible gluten content? Have you recently checked all the labels of purchased processed foods in your pantry to check for formulation changes that might have introduced gluten? Historically, when "glutened" did you have GI symptoms or were you a "silent" celiac whose symptoms were non GI. Is what you are experiencing now like what you were experiencing at the time of diagnosis? Have you had recent blood work done (CBC and CMP) and if so, were there any parameters out of norm? I know you have Hashimoto's but you say that is well controlled now? It certainly wouldn't hurt to get celiac antibodies rechecked. Because you are essentially gluten free I would not expect to see any big departures from normal levels but if there are even weak positives it could indicate you are getting glutened from some unexpected source.
    • Maura Gissen
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      Hi Trent! Thanks so much for your warm welcome and questions! They do, but these symptoms have been ongoing for a long time before the pregnancy. However, it's hard for me to know what's a celiac response vs. a Hashimotos one. I haven't, maybe it's worth getting those checked again? 
    • trents
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      Welcome to the forum, @Maura Gissen! Don't those same symptoms often come along with the territory when pregnant? And then throw in Hashimoto's.  Have you had your celiac antibody levels checked recently?
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