If Both Your Kids Have Celiac, Does That Mean A Parent Has It?

[chisket]

Hi there,

I posted about three weeks ago when my youngest daughter had a celiac panel show positive. Since then she has had a biopsy that reveals she indeed has celiac disease. I went on the gluten free diet with her last week because two years ago I was tentatively diagnosed with Dermatitis Herpetiformis from a skin biopsy, but then they dismissed it because both my blood test and stomach biopsy showed negative. My daughter's gastro suggested I revisit my diagnosis.

Last week I had my husband and oldest daughter screened via bloodtest. My husband's came back perfectly normal, but my daughter's test came back positive. Now they want her to do a gluten challenge for one month and then retest the blood work. If it comes back abnormal again, they want to do a biopsy to confirm celiac (which they suspect she has as well).

Here's my question (and sorry for the long-windedness): Should I go back on gluten and get retested in a month, or should I assume if both of my daughters have celiac and my husband does not, then I do?

I have been trying to find out the answer to this basic question, but can't find an answer anywhere. I see lots of responses to people who ask if they have it then do their kids have it? My question is if my two kids have it, then would a parent have it?

Thanks for your help.

Mary

[GlutenFreeManna]

Hi there,

I posted about three weeks ago when my youngest daughter had a celiac panel show positive. Since then she has had a biopsy that reveals she indeed has celiac disease. I went on the gluten free diet with her last week because two years ago I was tentatively diagnosed with Dermatitis Herpetiformis from a skin biopsy, but then they dismissed it because both my blood test and stomach biopsy showed negative. My daughter's gastro suggested I revisit my diagnosis.

Last week I had my husband and oldest daughter screened via bloodtest. My husband's came back perfectly normal, but my daughter's test came back positive. Now they want her to do a gluten challenge for one month and then retest the blood work. If it comes back abnormal again, they want to do a biopsy to confirm celiac (which they suspect she has as well).

Here's my question (and sorry for the long-windedness): Should I go back on gluten and get retested in a month, or should I assume if both of my daughters have celiac and my husband does not, then I do?

I have been trying to find out the answer to this basic question, but can't find an answer anywhere. I see lots of responses to people who ask if they have it then do their kids have it? My question is if my two kids have it, then would a parent have it?

Thanks for your help.

Mary

If you have DH then you have celiac. It does not matter what the other tests said. I also don't understand why your doctor would want MORE testing after your daughter got a positive test. The blood tests are very, very very rarely false positive. It just does not happen. People get a lot more false negatives (which means your husband is not completely ruled out just because he had a negative). A good dr would either diagnose her based on the positve blood work and response to the diet or do the endo with/biopsy right away (and she would still be diagnosed if the biopsy was negative). It makes no sense to torture her with a high gluten diet for a month for a re-test of the blood work. IMO, you should get a new dr and consider yourself to be diagnosed based on having DH.

[chisket]

Thanks for your response. Actually, our primary care first called to tell me that my oldest (who is asymptomatic) had it because her TT number came in just over normal and since my other daughter had full blown celiac, he concluded so did she. Then he called me back to say that after conferring with the pediatric gastro doc, they want to make sure of that by doing a challenge (which doesn't cause her discomfort), they can confirm with confidence it's celiac and not an anomoly. Since my initial diagnosis was later changed because of lack of blood/internal biopsy evidence (only punch biopsy at the rash site), I wondered if I needed something more conclusive as well.

It sounds like you're saying that I needn't bother with additional tests and should assume we're all celiac, correct?

I'm also very curious to know if there's research out there that suggests if you have two kids with celiac, then they must have received it from their parent. (In other words, their parent ALSO has celiac.) Is this true, or just coincidence?

Thanks again. M

[rosetapper23]

Yes...what GlutenFreeManna said.

[GlutenFreeManna]

Thanks for your response. Actually, our primary care first called to tell me that my oldest (who is asymptomatic) had it because her TT number came in just over normal and since my other daughter had full blown celiac, he concluded so did she. Then he called me back to say that after conferring with the pediatric gastro doc, they want to make sure of that by doing a challenge (which doesn't cause her discomfort), they can confirm with confidence it's celiac and not an anomoly. Since my initial diagnosis was later changed because of lack of blood/internal biopsy evidence (only punch biopsy at the rash site), I wondered if I needed something more conclusive as well.

It sounds like you're saying that I needn't bother with additional tests and should assume we're all celiac, correct?

I'm also very curious to know if there's research out there that suggests if you have two kids with celiac, then they must have received it from their parent. (In other words, their parent ALSO has celiac.) Is this true, or just coincidence?

Thanks again. M

Celiac disease is genetic if that is what you are asking, so yes. Your daughters got this from somewhere. It could have come from you or it could have come from both sides of the family. It is most common in people of Northern European descent (especially Irish/Scottish/English) although they are finding more and more that any ethnicity can have it. It's also possible your parents or grandparents had it but back then they did not have the testing and knowledge they have today.

As far as you daughter is concerned, I can understand why you would want to do all the additional testing to be sure. If she doesn't have symptoms then it won't be so bad, however if she ends up having a negative biopsy, just remmember that that does not mean she doesn't have it. Make sure the doctor takes 8-10 biopsies from different areas of her intestines, not just one or two. It's impossible to tell whether the villi is damaged during the endoscopy so the dr will just be guessing about where to biopsy. The endscopy also will not be able to physically reach every part of her intestines. That's why it's possible to miss the damage (if any) during endoscopy. Also she could just be in the early stages with positive bloodwork and not have any villi damage yet. So negative endoscopy does not mean no celiac. The positve blood test and response to diet should trump that. I know you said she has no symptoms, but she will still have a response to diet in that her blood antibodies will decrease when she is retested after being gluten-free. Like I said before, a good doctor will know this and diagnose based on the positive bloodwork and subsequently negative bloodwork once she has been gluten-free for several months.

[Takala]

You need to emphasize to whatever doctor you end up with that you had a positive biopsy for the DH, which IS the way celiac is diagnosed externally. Be sure to get a written copy of that test result. It's just a huge pain in the ***, when doctors attempt to go on "fishing expeditions" when they ignore symptoms and test results.

If a blood relative child has celiac it is because it inherited the genes predisposing one towards it from at least one parent. About 30% of the population carries the genes, but there needs to be some sort of trigger event and environmental impact (say, you're stressed, you ate a lot of gluten, your intestinal flora were damaged by antibiotics, you took a lot of aspirin, you were exposed to some toxins, then you got a bad infection) on the person to start the process up, and then roughly 1% of the general population gets it. However, most people with celiac are not diagnosed. Most don't get diagnosed until there is so much damage that the symptoms are causing major problems and/or other associated diseases.

If you are a parent with a diagnosed child, that means you're a first degree relative with a higher probability of being a gene carrier and that means a higher probability of developing it, but it doesn't mean "for sure" you have it. However, that, AND a positive biopsy for DH.... hello !

Now, about the husband... he's not completely off the hook. You can develop celiac at any age, and some people go through most of their adult lives without knowing that they have it. But he also could just be a "donation" to the gene makeup, because more women than men develop auto immune diseases.

DQ2 Open Original Shared Link

DQ8 Open Original Shared Link (I like this link better as it talks about the different ethnic groups and the % of carriers, and as the joke goes, Irish - Native American - Northern European = "Golden Cross for Auto Immune Diseases" )

[Darn210]

If you had a positive DH biopsy done, then that is conclusive for Celiac regardless of the blood test and intestinal biopsy.

That being said, having children with Celiac does not mean that a parent has Celiac. It does mean that one or both parents carry a Celiac gene which they have passed down to their children. Many people, about a third of the population (at least in the US), carry one or both of the currently accepted Celiac genes. It makes them more susceptible but does not mean that they have it or will develop it.

I also have to mention that there is still work to be done in identifying the genetic components. There are some people that develop Celiac that don't have DQ2 or DQ8.

ETA: Dang, I'm a slow typer. Takala's post wasn't there when I started this ...

[lovegrov]

I'm pretty sure that a skin biopsy that's positive for DH means you have DH. My derm never even bothered with anything other than a diagnosis by sight -- not even a skin biopsy.

richard

[chisket]

Thanks to all of you for your responses. I guess I'm the lucky winner of celiac. I appreciate your time and wisdom.

[kareng]

Thanks to all of you for your responses. I guess I'm the lucky winner of celiac. I appreciate your time and wisdom.

Congratulations! Welcome to the club!

Too bad it doesn't come with the Prize Patrol & a big check!

[maximoo]

Yeah we need the big chk to afford all this gluten-free food!