How Common Is This In Families? Should I Tested?

[wahoo]

Hi. I am new here. My father was diagnosed with celiac in his early 70s after years of digestive issues. He ended up getting cancer in his intestines and is unfortunately no longer with us. Right after he was diagnosed, all of us children got tested, and the blood tests came back negative. However, lately I have been having terrible gas, bloating and diarrhea. It all started during the holidays, when of course I was eating lots of cookies, etc. I am wondering if I should get the blood tests done again to be sure.

Is this the kind of thing that skips a generation, or do the children of celiacs have a high likelihood of developing symptoms? What about my children? Every time one of them has tummy trouble I watch them like a hawk to see how long it lasts, etc. What are the typical symptoms in children?

Thanks in advance.

[Viola 1]

From my experience fairly often. My mother, myself and our eldest daughter all have it. The rest of my family hasn't been tested, but I suspect a newphew has it and a neice.

I wished all would be tested so that the damage is kept to a minimum if they test positive.

My doctor and one of his family also have it. It's very good for me, I don't have to explain much

[par18]

Hi,

You actually have a couple of options. One is to get gene tested. If that is positive you could opt for the other tests (blood, biopsy) or if you are familiar enough with the diet you could initially try the diet to see if your symptoms improve. A word of caution and that is to not try the diet if you want to do any testing other than the gene test as it may cause you to get an incorrect diagnosis. The diet does not effect the gene test. How long have you had the symptoms and how severe are they?

Tom

[Guhlia]

From the research I've done, it appears as though there is approximately a 1/20 chance of first degree relatives of a Celiac developing Celiac at some point in their lives. My doctors told me that my daughter should be tested every five years, even if asymptomatic, just to catch it early. Take that for what it's worth. I would definitely recommend getting retested since you're having symptoms. You've seen first hand what undiagnosed Celiac can do to a person's body. (I hope that didn't come across too harsh. I'm so tired I can't think.)

[TriticusToxicum]

My mom has the gene, but no symptoms. My older sister also has celiac disease. My dad and younger sister have no symptoms and haven't been tested. It looks like it "runs" in my family . My girls (2 & 5) have no symptoms so we haven't tested them ...yet.

[wahoo]

Yes, I have seen what it can do and it isn't pretty, which is why I am concerned.

From the research I've done, it appears as though there is approximately a 1/20 chance of first degree relatives of a Celiac developing Celiac at some point in their lives. My doctors told me that my daughter should be tested every five years, even if asymptomatic, just to catch it early. Take that for what it's worth. I would definitely recommend getting retested since you're having symptoms. You've seen first hand what undiagnosed Celiac can do to a person's body. (I hope that didn't come across too harsh. I'm so tired I can't think.)

[wahoo]

How do you get gene tested?

Hi,

You actually have a couple of options. One is to get gene tested. If that is positive you could opt for the other tests (blood, biopsy) or if you are familiar enough with the diet you could initially try the diet to see if your symptoms improve. A word of caution and that is to not try the diet if you want to do any testing other than the gene test as it may cause you to get an incorrect diagnosis. The diet does not effect the gene test. How long have you had the symptoms and how severe are they?

Tom

[happygirl]

Wahoo:

Celiac experts (Dr. Green, Dr. Fasano, et al) recommend that ALL first degree relatives of Celiac are tested, even if they do not exhibit symptoms.

Request that the full Celiac blood panel is run, which includes the tTG tes (which doctors often don't run).

You can also ask at the same time to be tested (often through Prometheus Lab) for the two main Celiac genes: HLA DQ2 and HLA DQ8. If you don't have the gene, you have a very low probability of ever having Celiac (about 2 percent or so of Celiacs don't have one of the above mentioned genes). About 30-40% of the population has one or both of the genes, so just having the gene does NOT mean you have it, or will have it. (1 in 133 Americans has Celiac, which is less than 1%, versus 30-40%). But, if you have the gene, you will know if you *could* at one point have Celiac (i.e., you might not have it now, but you could have it at another point.) Testing at one point in time does not rule out that you won't have it later....people are diagnosed at ALL stages...from babies to the elderly, and everyone in between.

Both the gene testing and blood panel are simple blood draws, and results usually take a couple of weeks.\

Laura

[Nancym]

One thing to be aware of, and few doctors are, you can have a positive biopsy and a negative blood test. So if you're having symptoms, don't stop at just blood testing. Insist on a biopsy. And even if the biopsy is negative try the diet, but not until you're done with the testing. Meanwhile, eat lots of gluten so you don't have healing before the biopsy.

[amybeth]

It certainly seems that there is a tie in, although no one in my immediate family (siblings and parents) tested positive.

At my doctor's suggestion, they were all tested within 2 years of my diagnosis.

Although, my father did have slightly raised levels when he was tested. I believe he may have an intolerance to wheat but not full-blown celiacs. He, of course, is in denial and continues to suffer from some of the symptoms that led to me being tested.

I believe my paternal grandfather suffered from celiacs, as well, but that was not confirmed before his passing.

Both my general practitioner and my Gastro strongly urged all family to be tested - if nothing else, to rule out.

I wish I had known. I ignored symptoms for many years because I knew nothing about gluten - and my body went through a lot of unnecessary stress as a result.

If it's not celiacs maybe you should see an allergist - some of your symptoms may be from other foods, too.

Good luck.

[tarnalberry]

As a first degree relative, you're chances are about 1 in 20 that you'll develop it. As it can be triggered environmentally, if you have the genes for it, a negative test one year does not absolutely mean that you'll never develop it. So if you're experiencing symptoms, I'd suggest: 1) getting a complete blood panel done, 2) following up with a biopsy if it's positive and you want to go that route, 3) trying the diet if the results are inconclusive, negative, or positive and you opt not for a biopsy.

[lovegrov]

Wahoo, are you a U.Va. fan?

If you're having celiac-like symptoms you should be tested again. Many folks carry the celiac gene and never develop celiac, while others carry it for years and then develop celiac because of some unknown trigger (pregnancy, severe illness, severe stress, and so on). So you can test negative and still develop celiac later.

richard

[sailorjo]

I agree with others that you should definitely be tested. I was diagnosed in 2000, the doctor recommended my siblings be tested but they did not feel it was necessary since they had no symptoms.

In 2005, my older brother was going through testing and being treated for anemia with no improvment. Finally, they sent him for an invasive testing of the bones and found no iron in his system. After that test, he mentioned that I had Celiac was then tested and found positive for Celiac. Since living gluten free, his blood levels are good. My sister has since been tested and it was negative.

In hindsight, I believe my mother must have had it since she and I had very similar 'gastro issues'; she died of colon cancer in 1985.

Get tested!

[wahoo]

Yes, I am a wahoo fan, and went to UVA.

I was initially tested almost 10 years ago (Dr. Peter Green was my father's doctor and advised us to do it at the time), but it came back negative. Plus, I didn't have any symptoms then.

I made an appointment with my PCP, and will get the blood tests next week. Does anyone have further information about the gene test?

Thanks, all, for your thoughts and advice!

[happygirl]

wahoo,

I'm not sure what else you would like to know about the gene test (see my response above)? All that will be required is for you to ask your doctor to order the gene testing for you. It will be a blood draw. They send it out to a lab and your results will come back to a doctor. I have the genes, etc. listed above, including the lab that they often use.

Laura

[CMCM]

My mom has celiac disease. I got gene tested and found that I not only got the celiac gene from her, but a gluten sensitive gene from my dad (who died in 1989 of cancer, and in retrospect, he had some related symptoms, although not the same ones as my mom).

I just had my son tested, and he got my celiac gene AND a different gluten sentivite gene from my husband.

I think my daughter has symptoms too....we plan to get her tested too.

If it's in your family, I'd say get tested, just so you'll know in case something come up in the future. The scary thing is that SOMETIMES a person has no really identifiable symptoms and don't find out about this until they are diagnosed with some sort of cancer. Scary.

[chocolatelover]

I, too, have to wonder if it runs in my family. My grandmother died of colon cancer and my mother has had GI issues for years. I plan to be gene tested and also have my kids tested. It can't hurt, but it certainly can help prevent future problems...