Parents With Celiac

[linsmad]

I am so confused. My DH has had celiac for 5 years. At the time he was diagnosed I mentioned it to my children's pediatrician who wasn't in favor of blood testing unless we were comfortable continuing on to an endoscopy. He said that the blood tests are not that reliable, and the only way to know for sure would be through endoscopy. My children (ages 6 & 3) show no signs of celiac. Another pediatrician advised that unless the children show any signs of celiac, again advised against blood testing. I have heard much information contradicting this. I met someone recently who was advised not only to have her children tested, but her immediate family as well. My DH has four siblings, and none have considered being tested either?? What have you done? What should I recommend to in-laws as well? Are the blood tests more reliable with adults? Can they get a simple yes/no from a blood test, and then test again later if it showed nothing? Any advise would be much appreciated!

[Guest j_mommy]

I had my child tested right away after I was diagnosed. The blood tests are unreliable for young kids. From what I understand they are more reliable for adults and older kids. It is atleast a place to start. I am sure that it was passed from my dad's side of the family. My paternal gma and my father refuse to get tested but my siblings have been tested.

[cruelshoes]

From University of Chicago Celiac Disease Center

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When an individual is diagnosed with celiac disease, the entire family learns that they must be tested on a regular basis for the condition. First degree relatives (parent, child, sibling) have a 1 in 22 chance of developing celiac disease in their lifetimes; in second degree relatives, (aunt, uncle, cousin, grandparent) the risk is 1 in 39.

Dr. Green recommends that first degree relatives be tested every 2 years, more often in the event of symptoms. While tests can be unreliable in the very young, positive results are not unheard of. I know of several diagnosed celiacs (bloodwork and biopsy) that are under 2 years of age. The most important thing to remember is that a negative bloodwork result does not clear one for life.

We had both our children tested immediately after I was diagnosed. One was positive and one was negative. I want to stress that lack of symptoms does not mean lack of celiac. My son was completely asymptomatic when he was diagnosed, but his tTg and intestinal damage in the biopsy was nearly as severe as mine was. He was well on the road to being a very sick boy. Many celiacs have no outward symptoms yet have internal damage on the severe end of the spectrum.

If it were me, I would definitely get the kids tested, and encourage DH's parents to be tested as well. If the results are negative, you can play it by ear from there.

Hope this helps.

[Puddy]

From University of Chicago Celiac Disease Center

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Dr. Green recommends that first degree relatives be tested every 2 years, more often in the event of symptoms. While tests can be unreliable in the very young, positive results are not unheard of. I know of several diagnosed celiacs (bloodwork and biopsy) that are under 2 years of age. The most important thing to remember is that a negative bloodwork result does not clear one for life.

We had both our children tested immediately after I was diagnosed. One was positive and one was negative. I want to stress that lack of symptoms does not mean lack of celiac. My son was completely asymptomatic when he was diagnosed, but his tTg and intestinal damage in the biopsy was nearly as severe as mine was. He was well on the road to being a very sick boy. Many celiacs have no outward symptoms yet have internal damage on the severe end of the spectrum.

If it were me, I would definitely get the kids tested, and encourage DH's parents to be tested as well. If the results are negative, you can play it by ear from there.

Hope this helps.

[Puddy]

Hi CruelShoes,

When you said one of your children was positive and one negative and then you mentioned that your son was asymptomatic, was your son the positive one? I'm confused about the testing getting mixed information about whether I should have my children tested and which tests to have done. If they are asymptomatic (as they all are now), will they still get a positive blood test result if they have the disease? And if they come back negative, which I know means they still might have the disease, should they have the gene test so they will know whether they have to worry about the disease in the future? Thanks for your help.

[cruelshoes]

Hi CruelShoes,

When you said one of your children was positive and one negative and then you mentioned that your son was asymptomatic, was your son the positive one? I'm confused about the testing getting mixed information about whether I should have my children tested and which tests to have done. If they are asymptomatic (as they all are now), will they still get a positive blood test result if they have the disease? And if they come back negative, which I know means they still might have the disease, should they have the gene test so they will know whether they have to worry about the disease in the future? Thanks for your help.

Hi, Puddy. Sorry I wasn't clear. My son and daughter were both asymptomatic. My son's bloodwork was positive and my daughter's was negative. We proceeded with the biopsy on my son, and he had significant villi damage. We have not done any further testing on my daughter, but will have bloodwork done during her annual physical in a few months. If her bloodwork is negative, we will assume the position of watchful waiting and do it again in another 2 years. We also had our youngest tested at 9 months due to some constipation problems, but she was negative. We will test her again at 2, an age at which the testing becomes much more reliable. And so it will go every 2 years.

Many people with celiac never have any symptoms at all, even if they are positive on the bloodwork and biopsy. My son, although he had no symptoms before diagnosis, now reacts very quickly and strongly to the smallest ingestion.

I think the gene test is fine if you have the money and are interested. A genetic negative result can make celiac less of an issue to be concerned about. But, scientists have recently identified Open Original Shared Link that are responsible for celiac. Since most genetic testing is not going to involve all of those alleles (most test only DQ2 and DQ8), getting a negative gene test may not be a 100% negative forever. I do know of a handful of people who do not have the genes, but are biopsy proven celiacs. We have not had the gene testing done on our as-yet asymptomatic kids.

Hope this has helped and not made things even more confusing.

[Puddy]

Thanks so much, CruelShoes. No, that made things alot clearer for me. I will have them get the blood test as my GI doc said and then if they are negative, I'll just have them do it again in a couple years. I guess the gene test isn't necessary at this time and if they want to have it done themselves in the future, they can. My GI doc ran all the blood tests and the gene test on me the day I had my endoscopy. I just assumed the gene test was part of the celiac panel, but I guess not. Thanks again.

[linsmad]

Thank you all so much for your replies. Thank you especially cruelshoes. I will check out the link that you forwarded. I will do more research, but it sounds as if the bloods tests are a good starting point for us. I will recommend blood test for my husband's family as well. They are not a forever guarentee, but at least a good starting point!!

[cruelshoes]

More info about family members and testing:

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Q: Why do my family members need to be screened for celiac disease?

When the diagnosis is established in one family member, their first- degree relatives (parents, siblings and children) should have blood tests for celiac disease. This is because at least 10% of family members will have the disease, even if they are asymptomatic. Screening is also recommended for second-degree relatives (grandparents, grandchildren, aunts, uncles and cousins) as they are also at an increased risk for celiac disease. Family members who already have an autoimmune disease are at a greatly increased risk to have celiac disease (25%).

The reasons to diagnose family members prior to the development of symptoms include the prevention autoimmune diseases and malignancy.