Am I The Only Gluten Girl?

[Melissaann829]

Weird. I got diagnosed with Celiac 11 days ago. No one else in my family seems to have this? I'm 36 yeras old and my mom and brother are both saying, "Wow, that sucks for you!" ... but shouldn't they get tested? What about my grandmother and her father who both died of a mysterious stomach cancer? Coincidence? I just don't know. I'm in a huge family and yet I am the ONLY person with Celiac.

[scarlett77]

You are likely not the only one in your family. Yes, everyone should get tested but that doesn't mean they will. This is one of those autoimmune diseases that if people aren't feeling sick they just don't want to know about it.

My nephew has had some extreme issues with bowels ever since I can remember. My SIL (his mom) and 2 more of her children also have some bathroom issues as well although much milder than the one son. When my son was diagnosed I thought that it would be a good idea for her and the kids to be tested. To this day she has not and it saddens me greatly. I am 99% convinced at least my nephew is Celiac too.

[Gemini]

Weird. I got diagnosed with Celiac 11 days ago. No one else in my family seems to have this? I'm 36 yeras old and my mom and brother are both saying, "Wow, that sucks for you!" ... but shouldn't they get tested? What about my grandmother and her father who both died of a mysterious stomach cancer? Coincidence? I just don't know. I'm in a huge family and yet I am the ONLY person with Celiac.

It's almost a sure thing that other family members of yours have Celiac also but many things come into play in why it may not seem so. Doctors are not very good at diagnosing this, except when patients have in-your-face symptoms. Then there is the biggest reason of all....denial on your family's part or them not knowing it's genetic and they should be tested also. You are correct to assume that your relatives deaths from stomach cancer may well be connected to undiagnosed Celiac. You will never know for certain but anyone who goes their whole life without being diagnosed for potential Celiac and then develops stomach cancer has a larger than normal chance of having had Celiac, and causing the problem. Intestinal cancers can be common for Celiacs who aren't aware of their condition and never go gluten free and heal.

I also have a large family and actually went so far as being genetically tested to see what side of the family it came from. Surprise, surprise! I have a double DQ2, which means it's on BOTH sides of my family. That caused quite a problem when I announced that piece of news. The denial came on strong and hard. My younger sister realized that she may have a problem, although her symptoms were not as severe as mine and her daughter, who is soon to turn 16, had bizarre behavior problems, along with intestinal symptoms so they both did a dietary trial. They are the only ones in my family who have taken me seriously and listened. My niece became a new person after going gluten-free and bless her smart little heart, she is adamant about not eating gluten and won't intentionally cheat. My sister tries but succumbs to temptation and pays dearly for it. She does recognize her problem with it, though. It's really funny because her kids rat her out for cheating!

The rest of my siblings, although they all have some symptoms and autoimmune related illnesses associated with Celiac, refuse to acknowledge this and won't go gluten-free so suffer from a myriad of health problems. Ditto for both of my parents also....I kid you not! It's so obvious too but they won't even entertain the idea of going gluten-free and are a mess as a result. It's sad but out of my control so I have learned to just shut up about it. They do not get a lot of sympathy from me with regards to their health issues so now do not tell me when they are having problems. Denial is a serious thing and runs very deep.

I would tell them what you learn from here and the let it go. Don't nag them about testing because it can cause a rift. You can only hope they will wise up and at least get tested. Remember that a negative antibody test does not rule out Celiac Disease and I think the recommendations are to be re-tested every 2-3 years, unless symptoms develop. Good luck and be thankful you have a diagnosis and can now move on to a healthy life. This is not too hard, really, and there are plenty of gluten-free supplies for cooking these days and restaurants with gluten-free menu's. You'll do fine!

[SaraKat]

This is similar to me. I just got diagnosed a few weeks ago and my parents cannot recall anyone that has had stomach issues in our immediate or extended families. My Mom and sister are getting tested, but get this- my Dad who has MS went to his Dr about getting tested for celiac and his Dr told him that it wasn't necessary. Isn't that weird!! I think I am the only "gluten girl" too! LOL

[jerseyangel]

My Mom and sister are getting tested, but get this- my Dad who has MS went to his Dr about getting tested for celiac and his Dr told him that it wasn't necessary.

Did you see this thread?

[SaraKat]

Did you see this thread?

I just read that. That is interesting. I don't doubt my Dad has MS. He is 63 and was dx'd at 35. He had the spinal tap and the lesions, etc. He is wheelchair bound now and has limited use of his hands. I don't think he has been misdiagnosed all these years.

I am just kind of surprised that when they say your immediate family members have a 1/22 chance of having celiac his Dr. wouldn't even run the test when he told him I was dx'd.

[cassP]

I just read that. That is interesting. I don't doubt my Dad has MS. He is 63 and was dx'd at 35. He had the spinal tap and the lesions, etc. He is wheelchair bound now and has limited use of his hands. I don't think he has been misdiagnosed all these years.

I am just kind of surprised that when they say your immediate family members have a 1/22 chance of having celiac his Dr. wouldn't even run the test when he told him I was dx'd.

i think our docs are too dismissive of us.. he should be tested.. more people have a few autoimmune diseases than just 1. it doesnt mean we all do, but its very very common for people to have a few.

ps- i have read many times that it's 1 in 10 for immediate family members, and 1 in 29 for extended family.

im trying to get my family tested too

even if your dad does NOT have Celiac.. there are studies out there that say that Gluten causes nerve damage, and aggravates MS.

[cassP]

Weird. I got diagnosed with Celiac 11 days ago. No one else in my family seems to have this? I'm 36 yeras old and my mom and brother are both saying, "Wow, that sucks for you!" ... but shouldn't they get tested? What about my grandmother and her father who both died of a mysterious stomach cancer? Coincidence? I just don't know. I'm in a huge family and yet I am the ONLY person with Celiac.

its genetic and very likely that you're not the only one.

if you're diagnosed, then technically, the docs should be testing your family (if they're willing... i know, i can totally relate)..

ALSO- remember only 1 in 6 celiacs reportedly have gut symptoms...

good luck

[jerseyangel]

I just read that. That is interesting. I don't doubt my Dad has MS. He is 63 and was dx'd at 35. He had the spinal tap and the lesions, etc. He is wheelchair bound now and has limited use of his hands. I don't think he has been misdiagnosed all these years.

I am just kind of surprised that when they say your immediate family members have a 1/22 chance of having celiac his Dr. wouldn't even run the test when he told him I was dx'd.

I just wanted you to see it --not that I doubted your dad has MS but that he still may be at greater risk for Celiac. It never fails to amaze me how doctors dismiss it out of hand as much as they do.

[glutenfreeinminnesota]

I am the only one in my family with Celiacs...I made my little sister get tested when I found out I had it. She does not have it (thank goodness ). But my mom has Addison's Disease...so apparently we just have auto immune diseases...just not the same one's.

[Melissaann829]

No one in my family wants to listen to me. My mom has a condition called "Derealization" -- where for some reason she feels like shes been living outside of her body almost.. She has had this condition for 20 years now. What are the chances that her condition is because of Celiac? I read a forum on here of others experiencing "Derealization" due to Celiac. Its a form of Dissociative Disorder. No doctor has ever figured out how to treat her for it. Coincidence? Perhaps.

[cassP]

No one in my family wants to listen to me. My mom has a condition called "Derealization" -- where for some reason she feels like shes been living outside of her body almost.. She has had this condition for 20 years now. What are the chances that her condition is because of Celiac? I read a forum on here of others experiencing "Derealization" due to Celiac. Its a form of Dissociative Disorder. No doctor has ever figured out how to treat her for it. Coincidence? Perhaps.

WHOA- first off- i have never heard of this before but it sounds fascinating!!! im gonna have to go look it up now

and you do know that Gluten can cause A LOT of neurological problems and illnesses, right??? another reason why i want everyone in my family tested!!! my dad's parents both had dementia... and i'd really really love for my dad to stay "with us".

[zero]

This is the data I collected a couple of years ago so it may be out of date,

1 in 133: for general population

1 in 40: for second degree relative (niece, nephew)

1 in 22: for primary relative (parents,siblings)

10%: for a twin sister

70%: for an identical twin brother

I am the only one in my family with celiac which is also likely given the probabilities.

[T.H.]

It could be...but if they haven't been tested, I'd say they aren't off the hook, yet. I believe it's 1 in 6 celiacs who are found to have 'silent' celiac disease, where there are no overt symptoms.

Some of the silent celiac symptoms that my family had were the following:

depression

exhaustion

mental confusion

getting sick often, or quirky/rare illnesses

getting injured a lot or clumsiness

insomnia or excessive sleepiness

constipation

excessive weight

aches and pains

joint pain

soft tissue problems - like carpal tunnel, plantar fasciitis

or nothing at all.

I'd recommend they get tested, in part because if you have it and you don't know it, it can really mess you up. I ended up with a nasty disease caused by a local fungus because I was immuno compromised with celiac disease. I can never get fully rid of it - no cure. My father had to have hips replaced and has permanent damage in his spine because of undiagnosed celiac disease. And no one knew of the problems until the damage was already done. That's the story for a lot of us.

When just one blood test could have prevented it, the small effort is totally worth it, you know?

[cahill]

My doctor never took me seriously until after BOTH my daughters were diagnosed with Celiac's ,,It took years for them to be diagnosed.They are in their 30's..Interestingly enough MS was one of the things they were tested for,,spinal tap...

My grandson,who is 13, is showing signs of celiac's but is resistant to eating 100% gluten free.My daughter has a gluten free home but he eats gluten at school,ect.....

My family,brothers and sisters, will not even consider testing