Confused About Heriditary And Celiac

[Coolclimates]

I've been recently diagnosed with Celiac disease (through blood tests and a stomach biopsy). So natually my parents decided to get their blood tested. But both of them came out negative. Is this unusual? How common is it for the parents of a Celiac to have it as well? My mom was beginning to think that I was misdiagnosed but I did some research and apparently only a minority of parents have it (if their offspring has it). Now I'm wondering if their blood tests were inaccurate? I am a bit stumped. Anyone?

[Jestgar]

It's not clear what genes contribute to celiac disease, nor what triggers the disease in people that have the predisposition. It's not at all unreasonable for neither of your parents to show any signs of the disease.

[frieze]

apparently, the genes need an "instigating" event to cause the disease process to unfold......i would say that your parents are either in the 20% of false negatives, or, simply lucky and never had that "event"... perhaps they each have one gene and you inherited both???

[Coolclimates]

I did have a few traumatic events in my life. In March of 2001, I was in a horrible Amtrak train crash. Fortunately, I was not badly injured but there was someone who was killed in my car and it was extremely terrifying. Later that year, in August 2001, I was diagnosed with Lyme Disease. I had caught it while traveling in New Jersey. Fortunately, I caught it early on and took a month of antibiotics. But I'm wondering if either (or both) of those events contributed to the beginning of my Celiac.

I also heard that my parents can have a recessive gene for celiac disease, but not necessarly have it themselves. I'm really suspect of my brother and some of my cousins having it, though. They all have been diagnosed with IBS and have had issues for years. I would say at least 3 of my cousins have been diagnosed with IBS, as well as my brother, an uncle and most likely my grandfather (although he is not alive and was never diagnosed).

[Takala]

About 30% of the population carries the HLA DQ types of genes predisposing them to celiac or gluten intolerance, but only about .75 to 1%, or 1 in 100, per the newest research numbers, of the population actually goes on to develop the disease. Of those, the majority are not diagnosed because the disease mimics other diseases or causes other conditions or the physicians do not recognize the symptoms.

Lyme disease is a known trigger of gluten intolerance.

Other things which may help mask it are cigarette smoking.

[Skylark]

There is a strong celiac gene, DQ2.5 where you can get half from one parent (DQ2.2) and half from the other parent (DQ7.5). If this happened you had a much higher risk of developing celiac than either parent.

Your parents were right to get tested, as the highest risk of celiac disease is having a first-degree relative with it. Your brother should definitely be tested. And yes, trauma can supposedly trigger celiac, as can severe illness like lyme, or childbirth. The triggering is not well understood.

[modiddly16]

Neither of my parents nor my brother have it, however, on my Dad's side of the family...my grandmother, aunt and cousin (female) all had or have severe stomach issues. My cousin (male)is a doctor and tested them all posted for celiac disease, however, they've chosen to ignore the testing and despite my pleas do not follow a gluten free diet. We're all Irish....if that helps

[Coolclimates]

Interesting that you mention the Irish thing. I suspect that I got it from my mom's side of the family and they have Scots-Irish heritage. So I guess it's not unusual to have Celiac even though neither of my parents have it.

However, my mom is suspicious that her test results may have been wrong. She has goiter (severe hypothyroid), fibromyalgia and sleep apthenia (sp?). She also had a bout of breast cancer back in 2002. Fortunately she's been cancer free since then. But she feels tired a lot, has lots of muscular aches, sleeps poorly, etc. I'm wondering if she is IgA deficient and therefore did not get accurate results from her blood tests.

I'm urging my brother to get tested, but he seems to be kind of in denial about the whole thing. I really suspect that he has it, though, as he's had stomach problems all his life, plus muscle aches and other symptoms of celiac disease.

[Mari]

A good place to find information is the FAQ at Enterolab.com and Wikipedia for Celiac Disease. There are 4 online Labs which offer DNA tests for Celiac Disease. There is one Lab which offers a 'molecular' serology test for celiac disease, available through a Dr and it causes considerable confusion unless both you and your Dr are experts, and most aren't. I read a while back that a gastroenterologist who examined relatives of his patients wrote that all of them has some symptoms tho not serious - occasional gas & bloating, reflux problems.

[macocha]

also, I swiped this from the univ of chicago website, which tests did they have?

Which is the correct Screening Test?

Anti-Tissue Transglutaminase (tTG-IgA) -- A screening test is commonly used when an individual is in a risk group for Celiac Disease, whether or not he/she has symptoms. This test is usually the one offered for Celiac screening events, as it is the most sensitive test available.

Other Tests

Total Serum IgA -- This one tests for IgA deficiency, a condition which can affect the accuracy of an antibody test)

Anti-endomysial antibody test (EMA-IgA) -- EMA-IgA are very specific for Celiac Disease but they are not as sensitive as teh tTG-IgA.

HLA-DQ2 and HLA-DQ8 gene tests -- The "gene tests" are not antibodies. They can be used to exclude Celiac Disease (if negative) in doubtful cases

[mommyto3]

My mom has two celiac genes (just as I do) but she doesn't have it. And my father has at least one gene (he passed it to me) but doesn't have it.

I believe mine started after back surgery and then progressed after each of my 3 pregnancies. Or maybe it was just the pregnancies. Who knows.

My son also has two genes (like me) and he has it but he's only 6. No surgeries or anything so what triggered it for him? The workings of Celiac are just so confusing.

Funny thing is that my mom had 3 really major surgeries a while back but it didn't trigger. So strange. I guess if the docs can't figure it out, it's even harder for us!

I do suspect my Uncle had it though and he passed away from colon cancer 10 years ago. He had a lot of stomach problems and that's why I think he had it.