Celiac Testing In Relatives And Children

[bincongo]

I am sure this has been discussed but it takes awhile to look through all the posts. I am newly dignosed with Celiac. Should my daughter and son be tested and what about my sisters and brother. Also what tests should they be given. My daughter was told if she didn't have symptoms that testing wasn't necessary. I have a sister who has auto-immune diseases but tested negative for Celiac on blood work. She also had symptoms of DH but I think the biopsy was negative. She just has to stay out of the sun. Since there are now 2 of us in one family that have auto-immune diseases I would think Celiac testing should be done on all of us. How do you approach a doctor to ask for tests.

By the way my children are young adults. I didn't have many symptoms and was diagnosed by accident when I had an endoscopy done for another unrelated symptom.

[kareng]

The univof Chicago celiac center has fact sheets. One talks about testing relatives. I printed and gave it To my kids doc. If you live anywhere near Chicago, they will be doing free testing soon. It will say on the website.

Www.Celiacdisease.net

[cassP]

kareng- thanks for the link

bincongo: concerning what your daughter heard- keep in mind that a recent study suggest only 1 in 6 Celiacs actually express gut symptoms. i, personally think everyone in your family should at least have blood panels done. just because you have it, doesnt mean you have to be alarmed and think everyone in your family has it- BUT- this is something everyone should be screened for- to keep an eye on it.

im trying to get an official diagnosis, so that my family will get tested. i wish our medical system took it more seriously. in Italy they genetically test you when you're an infant. if you have a predisposition, then you follow up later with antibody tests. wish it was like that here, would have saved me YEARS of physical & mental issues!

[ravenwoodglass]

It is advised that all first degree relatives of someone diagnosed be tested. For you that would include your sisters, brother, mother and father if you are the diagnosed one. For you DD that would mean her siblings and both you and her father. 6 months after I was diagnosed we tested my children and they both showed positive in blood tests that prompted testing of my exhusband who was also positive.

[sa1937]

  On 9/5/2010 at 1:48 AM, bincongo said:

I am sure this has been discussed but it takes awhile to look through all the posts. I am newly dignosed with Celiac. Should my daughter and son be tested and what about my sisters and brother. Also what tests should they be given. My daughter was told if she didn't have symptoms that testing wasn't necessary. I have a sister who has auto-immune diseases but tested negative for Celiac on blood work. She also had symptoms of DH but I think the biopsy was negative. She just has to stay out of the sun. Since there are now 2 of us in one family that have auto-immune diseases I would think Celiac testing should be done on all of us. How do you approach a doctor to ask for tests.

By the way my children are young adults. I didn't have many symptoms and was diagnosed by accident when I had an endoscopy done for another unrelated symptom.

My daughter was just tested. When she went to her endo for a normal follow-up for her thyroid, she came armed with my celiac panel test results plus a copy of the info from my endoscopy/biopsy (both positive) and basically insisted that he order the test for her. She had talked to him a couple of years ago about testing her and he told her that he was sure she didn't have it as it "very rare". Yeah, right! lol BTW, he's an excellent endocrinologist and has her thyroid totally under control...he is just old school and was taught that celiac is not the common disease that we know it is today.

Anyway, he agreed to send her for the test and sure 'nuff, it came back highly positive for celiac. No question in my mind that she has celiac...my concern was that she may not have been consuming enough gluteny foods to get an accurate reading on the test. (She had the newer DGP panel whereas mine was the older celiac panel.)

[T.H.]

So sorry that your daughter's doctor was not up to date on the disease.

I would say you definitely want to get them all tested, if they'd agree to it.

My father tested positive 8 years ago. We got no one tested - didn't even realize it was an issue. I asked for the testing myself during another procedure, like yourself, when I had no traditionally recognized gut symptoms. When I tested my kids, my daughter came back positive, also with not symptoms. My brother came back positive, and he had just started to have a bit of tummy trouble at the time, I understand. My son came back negative, but many health issues cleared up when the family went gluten free, so we're assuming he's a false negative and just moving on from there.

I even started calling up my first and second cousins. Out of nine relatives, three children have been having gut issues the last few years that the doctors never tested but simply labeled as 'anxiety related stomach pains.' Two other relatives have been having multiple health issues that the doctors wouldn't expect to see until decades later. They are all undergoing testing right now, and I wouldn't be surprised if we end up with more celiacs in the family by the end of the year!

For me, approach-wise, I armed myself with the statistics, printed out the ones that listed the likelihood of a close relative having the disease if I did, and what the prevalence of asymptomatic celiacs was, and then told the doctor that I (my kids, etc...) wished to be tested because I was in a high risk group for the disease. That worked for our doctors. I know some are more stubborn and might require more forceful speech, but one always hopes that this would be enough.

[Scatabrain]

Hello All. Great topic!

I am newly diagnosed (sort of by accident - my bloods were negative and they were doing the Endo for other reasons and voilla).

I am going to push to have both of my kids, my siblings and my parents tested. My son says 'my tummy hurts' a lot. I'm not a doctor of course and don't jump to conclusions but every time he says it I wonder...

In our case I use the same family practice as the kids so that will help quite a bit in communicating my diagnosis to the Docs.

It would be a great idea to compile a list of cited sources our families can bring to our doctors. That would have more weight then saying - I read it in this book that...

I am going to start collecting the info. From the post above here is the beginning of the list:

• - Www.Celiacdisease.net
  

If everyone is up for it why don't we expand that list to more specific printable material. Sound like a good idea?

Cheers!

[ravenwoodglass]

  On 9/9/2010 at 6:07 PM, Scatabrain said:

Hello All. Great topic!

I am newly diagnosed (sort of by accident - my bloods were negative and they were doing the Endo for other reasons and voilla).

I am going to push to have both of my kids, my siblings and my parents tested. My son says 'my tummy hurts' a lot. I'm not a doctor of course and don't jump to conclusions but every time he says it I wonder...

In our case I use the same family practice as the kids so that will help quite a bit in communicating my diagnosis to the Docs.

It would be a great idea to compile a list of cited sources our families can bring to our doctors. That would have more weight then saying - I read it in this book that...

I am going to start collecting the info. From the post above here is the beginning of the list:

• - Www.Celiacdisease.net
  

If everyone is up for it why don't we expand that list to more specific printable material. Sound like a good idea?

Cheers!

How about the National Institute of Healths Celiac Awareness Campaign, here's a link

Open Original Shared Link

[Scatabrain]

This document IMHO is outstanding material to bring to your child's doctor:

Open Original Shared Link

The page where this doc came from also contains lots of other good stuff:

Open Original Shared Link

[bincongo]

  On 9/10/2010 at 3:57 PM, Scatabrain said:

This document IMHO is outstanding material to bring to your child's doctor:

Open Original Shared Link

The page where this doc came from also contains lots of other good stuff:

Open Original Shared Link

Thank you, my children are age 33 and 30 so the decision is up to them but I will continue to send them information to convince them to do testing. So far I haven't had any luck but they are both busy parents. My daughter is 7 months pregnant so I worry about her the most. She has an adopted son and then got pregnant but was told she probably would never be able to. I strongly believe her infertility issures may be due to Celiac because she has for years been then one with "stomach" problems.

[YouCanCallMeCelia]

If you test an asymptomatic child can the blood test still be positive? Or do you have to wait for things to "build up" to have it show?

I am waiting on my biopsy report - not even sure I have Celiac yet but I am worried about my 9 yr old who is already so constipated she has to take stool softeners daily

She has been constipated pretty much since she started eating.

I didn't have the blood test because I was at the gastro for reflux...he only mentioned Celiac when I said I had unexplained low iron. Now that I've done a little research I have several more symptoms that could be explained by Celiac.

I just know my siblings will shrug it off and not get tested. sigh.

[ravenwoodglass]

  On 5/17/2011 at 2:47 AM, YouCanCallMeCelia said:

If you test an asymptomatic child can the blood test still be positive? Or do you have to wait for things to "build up" to have it show?

I am waiting on my biopsy report - not even sure I have Celiac yet but I am worried about my 9 yr old who is already so constipated she has to take stool softeners daily

She has been constipated pretty much since she started eating.

I didn't have the blood test because I was at the gastro for reflux...he only mentioned Celiac when I said I had unexplained low iron. Now that I've done a little research I have several more symptoms that could be explained by Celiac.

I just know my siblings will shrug it off and not get tested. sigh.

Yes asymptomatic people can show up in blood tests. However if your child is constantlyly constipated she isn't asymptomatic. Some of us have bad C for years before we develop D. Gut symptoms are also not the only symptoms of celiac, bone and muscle pain, headaches, moodiness, growth issues, weight issues (both to little and too much), learning difficulties, anemias and more can all be symptoms that doctors don't realize are celiac symptoms until after we go on the diet and they resolve.

[Debbie B in MD]

My sister is getting tested today. I just sent her the list of things to get tested for along with vitamin deficiencies too. I am so glad she is being tested. She doesn't have gastro symptoms, but she has others and she has hashimoto's. I just had blood work done yesterday for Vit d, B12, ferratin. and folate along with my thyroid stuff. I am really hoping the vitamins are low and that will be a big piece of the puzzle. I am still having burning muscle pain. I think it may be from soy. I had avoided it since Jan, but had chocolate and then gluten-free pretzels with soy. I then thought oh my miscle sburn, maybe it is the soy. Then I prompylt went and ate a gluten-free pizza. Bib boo-boo, I think. It has soy and my shin muscle is burning. Hopefully between being soy free and adding soem Vit D, that will improve. BTW, I love this board. Thanks for all the wisdom and support.

[Cara in Boston]

My son and I tested positive. He had ZERO gut symptoms (he was diagnosed first). I had lots of symptoms but never considered - or knew about - celiac disease until my son was diagnosed.

I was told that ALL first degree relatives should be tested automatically, regardless of symptoms. My other son tested negative on all the blood tests but is going (today) for further tests because he has an unexplained tooth enamel issue that the Dr. is just not convinced the bloodwork was accurate.

Second degree relatives should be tested if they have any symptoms.

Cara

[SaraKat]

I was diagnosed in the fall 2010 and my family all got tested. My dad and sister were negative, but my mom just found out she is positive. Her blood test was very positive and she is having the endoscopy in June. She has 0 symptoms and is 63 years old. She is in COMPLETE SHOCK!