I'm The 1st Diagnosed With Celiac

[RVluvin]

It's been about a month now of knowing I'm celiac. I'm 46 yrs old, but can remember having restroom issues, and always needing to go to the nurses office as far back as 6th grade. It was just this past year that it got unbearable. I traveled back to my home state last weekend, and spoke to family members from both sides of my parents and no one can recall anyone with digestive issues. If this is a jean passed down, I puzzeled why I'm the only one?

This disease is finally an explaination as to why my body build is so small. I come from a father that was 6' very large man and both grand fathers who where also 6'+ large men. Even my sister towers 4"-5" over me. It's a possible explanation anyhow.

If anyone can shed some insight as to why I'm the first and only one, I would appreciate it.

[psawyer]

The genetic predisposition for celiac disease is inherited. But having the gene alone does not cause the condition. Only about ten percent of those having the gene develop celiac disease. There are cases of identical twins where one has celiac disease and the other does not.

[luvs2eat]

I was the first and only in my rather small extended family. My doc told me that celiac was common in Irish people... the whole family came from Ireland in the mid 1920s. Since then, all three of my daughters have been diagnosed, but none of my siblings have, altho I believe they could benefit from being on a gluten-free diet.

[AVR1962]

I too am the first and only person in my family to be diagnosed. However, my mother has all kinds of food and skin allergies. 2 of my 3 daughters, and all 4 of my grandkids are on a gluten-free diet and have been for much longer than myself. I don't know about connections to our heritage but my family roots are from Sweden. The whole family is either blonde or red heads and we are all fair complected.

[Kimbalou]

I am the first diagnosed too. It is a strange disease to figure out, in my opinion. Nobody in my family has it. My 3 daughters are negative...and I'm glad.

[ElseB]

I'm the only one with Celiac and my sister is the only one with Crohn's. Both genetic diseases. And no one else in the immediate or extended family has anything.

[ravenwoodglass]

I am the first one diagnosed but my children were tested after I was and my Mom was clearly celiac and my twin brother may have been also. I have an aunt who also was likely celic and chances are we had many more family members who were and are but are undiagnosed.

[T.H.]

Studies are showing that 4 times more people are having their 'triggering' event than 50 years ago, so the population with the genes (that never would have developed the disease) are now developing it more frequently.

However, you may not be the only one, even if you are the only one with gut issues. Experts recommend that all your family now get tested for this disease, symptoms or not. Many of us have 'silent' or asymptomatic celiac disease - no gut symptoms, in other words. 1 in 133 of the population test positive for this disease in random studies. If there is a distant relative with it (you, now), aunts, cousins, and such move to the 1 in 56 category. Those who are very closely related to you, parents, children, and siblings, are now in the 1 in 22 category.

The disease can trigger at any time, too, so it's recommended that not only does your family get tested, they get retested every few years to make sure it hasn't triggered. How many years that is seems to depend on which doctor recommends it, although I believe every 5 years was common for adults, in the recommendations I come across.

Most doctors aren't aware of this, or the recommendation. They will often tell relatives that they shouldn't get tested because they 'couldn't possibly' have the disease because they're overweight, they don't have gut pain, etc....

This is based on outdated information about the disease symptoms which we now know to be completely inaccurate. So if you can, really, see if your relatives will get blood tested.

We had one celiac in our family and didn't know to test. No one else had gut issues. 9 years later, I got diagnosed and then we finally tested everyone. We had two more pop up, one being my daughter, who had nothing we or the doctors recognized as celiac symptoms. It's amazing where this disease can be hiding, truly.

[pricklypear1971]

I'm the first, that I know of. Evidently I have a cousin with Crohn's, other family members with thyroid issues....

Have the lab sheet to have my son tested and I am working up the nerve to do it. For some reason I just want to get through the holidays before finding out....

[jswog]

I'm the only one with Celiac and my sister is the only one with Crohn's. Both genetic diseases. And no one else in the immediate or extended family has anything.

That is very close to my situation. I'm the only one with Celiac and my sister is the only one with Crohn's. But my mom has thyroid problems and fibromylaga (sp?). Her mother was dx with Lupis. My aunt (father's sister) had a great many problems (none of are still quite sure which were real and which were imagined) including GERD and other auto-immune issues (and I'm now wondering if she possibly had Celiac also). My uncle (father's brother) has been dx with bipolar disorder.

Jen

[mushroom]

My aunt (father's sister) had a great many problems (none of are still quite sure which were real and which were imagined)

Jen

She sounds like the kind of woman that gives alll female patients in a doctor's office a rough ride (or maybe they were all real and you all gave her a rough ride )

[jswog]

She sounds like the kind of woman that gives alll female patients in a doctor's office a rough ride (or maybe they were all real and you all gave her a rough ride )

Honestly, could go either way. She passed away at 44, so we'll all likely never know. But, then again, she was also EXTREMELY morbidly obese (would have put a lot of the Biggest Loser contestants to shame), so then, even assuming that they were all real, it still leaves one to wonder how much to attribute to that.

[RVluvin]

I was the first and only in my rather small extended family. My doc told me that celiac was common in Irish people... the whole family came from Ireland in the mid 1920s. Since then, all three of my daughters have been diagnosed, but none of my siblings have, altho I believe they could benefit from being on a gluten-free diet.

I'm 1/8 Irish, my grandfather was 1/2 Irish.

[Bubba's Mom]

I'm the only one DXed in my family, and I have a sister with Crohn's. We are the only ones with official DXes and find it odd that we are the only ones with genetic diseases in the family.

However, there are Aunts and Uncles, Parents, Grandparents,(all gone now) and cousins with symptoms that would be consistant with Celiac. They were never tested and had secondary issues like other auto-immune diseases, which may have explained away any Celiac symptoms?

As I think back, many had symptoms that were called IBS,ulcers, GERD, etc. I think if you come from a family that has GI issues, you may think those symptoms are "normal" and never think to be tested?

I *think* both of my grown sons have Celiac, but both refused to be tested. One even agrees he probably has it!

I see symptoms in my hubby too, and his family has a long list of other auto-immune diseases. He had a brother with type 1 Diabetes. There's Hasimoto's, Reynaud's syndrome, Rheumatoid Arthritis, Osteo Arthritis, Fibromyalgia, heart problems, hiatal hernia,GERD,and type 2 diabetes is rampant in his family. He has several of those and refuses to be tested for Celiac.

Sooo..my point is..you may not be the only one. You are the one that's lucky enough to have a DX so you can now find relief from your symptoms.

[Skylark]

The incidence of celiac and autoimmune disease is rising, particularly in the US, Scandinavia, and Europe. Nobody is clear what's going on but it means there are a lot of people like you, who are the first celiac in the family.

[Celtic Queen]

I'm the first diagnosed one in my family, but I see possible signs of it throughout the family tree. My grandmother was hypoglycemic, had thyroid issues and was hospitalized for depression. She also had breast cancer. My mother had hair loss, undiagnosed depression issues, and died of cervical cancer.

My grandfather had severe environmental allergies and was an alcoholic. One uncle is a recovering alcoholic. Makes me wonder about the connection between Celiac and alcohol. Could one of the contributing factors of alcoholism be issues with digesting gluten or an addiction to the gluten in many alcohols?

One nephew has been diagnosed with "failure to thrive." He tested negative for Celiac but I'm encouraging his parents to remove wheat from his diet anyway. All of this is just on my mom's side of the family.

On my dad's side there is diabetes, high blood pressure and depression. Then there are the whole list of people not related to me by blood who show signs. My uncle's wife has autoimmune Hepatitis, her son has colitis, her mom has diabetes, and her daughter in law has Celiac's Disease. My step mother is schizophrenic. My best friend has fibromyalgia and thyroid issues. Sometimes I feel like I'm gluten paranoid, but I keep seeing all these signs of people around me with the disease.

The point of my long story is perhaps others in your family have gluten issues, but they're masquerading as other issues. Plus not all gluten issues are digestive in nature. Do your family members have other autoimmune diseases? High incidences of cancer? Diabetes? Rhematoid Arthritis? Mental health issues? Those could all be related to the gluten.