Question regarding testing

[lilredhen]

I need to get my 10 year old son tested now that his older brother was diagnosed with Celiac. I plan to start with the genetic test because it’s the least invasive. Do you all recommend a certain test, or do I just order 23and me? 

[trents]

Does the 10 year old have the same set of parents? By that, I mean the two boys are not half brothers are they? If they are full brothers they would have the same gene combinations, wouldn't they?

Please realize that having the genetic potential for celiac disease is not a guarantee that you will develop active celiac disease. Many more people have the genetic potential than have active celiac disease. It is latent until activated by some stress event such as a viral infection and for most with the genetic potential that never happens. If the older boy has not had the genetic testing done then there might be some value in spending the money to find out the strength of the genetic potential. The other thing to realize is that about 44% of first degree relatives of those with active celiac disease will also develop active celiac disease. That is probably the most important genetic factor to realize.

I'm not sure what you mean by "invasive" but the first stage of diagnosis is not an endoscopy/biopsy but rather a simple blood draw to check for antibodies that celiac disease's damage to the small bowel lining produces. My advice would be to go for that before the genetic testing. More bang for the buck. I would ask our physician to have a "full celiac panel" done which would include the "other" in this article: https://celiac.org/about-celiac-disease/screening-and-diagnosis/screening/

Also, do not put the boy on a gluten free diet until after the testing is done. He must be eating wheat daily for 6-8 weeks before the antibody testing.

[lilredhen]

Yes, full brothers. No the older didn’t have genetic testing. There’s more to the story. I question my older son’s diagnosis. First he was gluten free when tested for antibodies. Second his doc was back and forth about whether he had celiac or not. Third he was scoped and diagnosed with celiac and Crohn’s at the same time. My understanding is the 2 diseases look the same in the gut. And fourth, his dad’s 23andme test was negative for celiac, as was my mom’s and my brother’s. I haven’t had mine done but it seems unlikely; never any symptoms or issues in my family.

My anxious 10 year old has never had a blood draw and would probably completely freak out. That’s why I would rather spend the money and hopefully rule out the possibility of celiac.

Thanks for the link. I was having trouble finding the information; the search box doesn’t seem to be working for me.

[trents]

Unfortunately, just as genetic testing cannot confirm celiac disease, neither can it completely rule it out. We are hearing of cases where the genes are not there but people do have celiac disease. I think there is a lot we don't know about the genetics of the matter. The current gene alleles associated with celiac disease are skewed toward the European/caucasian race subset and may not be as useful for assessing risk in other race populations.

Is your older son showing improvement on a gluten free diet?

[lilredhen]

He is doing well on the gluten free diet as well as the other dietary restrictions for the Crohn’s. However he is also on strong immune suppressing drugs. He is an adult who makes his own health care decisions and doesn’t question his diagnosis. I’m only trying to weigh the likelihood of his brother having Celiac. I was not aware that the genetic test can’t for sure rule out celiac. We are of Northern European ancestry. Does the Iga test have to be a blood draw or is there a finger stick version?

[trents]

Found this: https://www.clinicaleducation.org/news/is-a-fingerprick-bloodtest-for-coeliac-disease-sufficient/

[lilredhen]

30 minutes ago, trents said:

Found this: https://www.clinicaleducation.org/news/is-a-fingerprick-bloodtest-for-coeliac-disease-sufficient/

Thank you; that is helpful. I’ll order the Celiac Screening test from Imaware. $99 and includes a lot of letters:

DGP IgG

tTG IgG

DGP IgA

tTg IgA

[trents]

Many celiacs have few or no symptoms in the beginning phase of the active form. We call them "silent" celiacs. It's only after the symptoms begin to manifest themselves significantly that they seek medical help that leads to a diagnosis. By then, however, damage to the immune system, the bones and the neurological system may have already happened. The average age of dx is 50. Another issue is that without a confirming diagnosis, many people find it difficult to stick to a gluten free diet even though they feel better when doing so.