Importance of knowing your genetics?

[mnms]

*Disclosure* my Fiance does not like to be vocal about concerns/questions so I created this forum to hopefully gain good insight to support him and inform him of any topics which may come up. (I do not have Crohns but he was diagnosed 7 years ago) He was on Remicade from 18-23, but he started changing his diet as I kept a log on food/flare ups and has been in remission besides a few flare ups for 2 years. We got levisin prescribed from his doctor for small flare ups, which helps a lot. Remicade never helped his symptoms, luckily he has no scarring right now in his colon and we hope to keep it this way.


However, my whole reason for this forum is because he does not know his father. His maternal grandfather died from colon cancer in his early 70's, but as far as they know no one suffered from crohns. His biological father on the other hand--we have no clue. He does not wish to meet him, but I think it could be beneficial to at least get medical history..if not do a full genetic run up? *We do not have a name or phone number or any information on his father, but his mother does.
What do you think..are genetics a must know?
He is in remission now, but I want to help him make adjustments to stay this way and eliminate the potential for secondary diseases .

 

[DougUte]

There are definite genetic factors in Crohn's disease. I don't think the disease is entirely genetic, but there is a component that is. A full genetic run up would be quite expensive. If your fiance does not want to meet his biological father there may be another approach that works. I would consider searching for death certificates on his paternal line. Death certificates provide at least the medical conditions that contributed towards that persons death. You can order copies of death certificates from each state's health department. Just need some basic information such as the name, birth date, death date, place, etc...

 

[mnms]

Thank you! I agree it is important to know genetics, unfortunately he does not want to even know the name of his father. I think it may be too much to go behind his back to his mother..

How extensive is a full genetic run up?

 

[ronroush7]

In some cases, Crohns can be genetic but not always. Is he on anything besides the levsin right now? If not, there is a possibility of the disease doing invisible damage. Consult his doctor if he is not on any medication.

 

[mnms]

He has been back to the doctor, for all checkups, along with a colonoscopy a year ago just to be sure there was no invisible damage being done. He is just on immodium and levsin as needed. His diet has changed tremendously and we have included vitamins as well as specific foods/herbs which help his digestive tract. As of right now everything looks good, except his liver enzymes have been high for a while. He is awaiting new blood test results to make sure they are okay.

I am worried about potential for other disease, colon cancer risk (on top of maternal grandfather and having crohns), and anything which could make crohns worse.

Is a genetic work up worth it?

 

[DougUte]

Thank you! I agree it is important to know genetics, unfortunately he does not want to even know the name of his father. I think it may be too much to go behind his back to his mother..

How extensive is a full genetic run up?

I would not go behind his back either. It's too bad he really does not want anything to do with his father.

Anyway, I thought you might want to look at this site. www.ghr.nlm.nih.gov/condition/crohn-disease#sourcesforpage

 

[mnms]

Thank you!

It's a tricky situation (his biological father gave up his rights at my Fiance's birth and has never tried to contact or be in his life 25 years since)
I will check it out

 

[ronroush7]

I am so sorry that his father has acted like that.

 

[mnms]

Thanks ..it comes with its own barriers

 

[Scipio]

IMO you do not need to contact his father at all. You can get a better idea of his genetic susceptibility to Crohn's disease and his genetic predisposition to either severe or mild disease with genetic testing than you can with a family history. Family members often don't know or have only very hazy knowledge of what medical conditions various ancestors may or may not have had. Plus ancestors by definition lived in the past, when state-of-the-art medical diagnosis may not have been all that good. You may find out that grandpa or great-grandma had "stomach trouble," but it may be impossible to determine whether they had IBD, or celiac, or IBS, or something else entirely.

Since your husband has already been diagnosed with Crohn's his genetic susceptibility to coming down with the disease is kind of irrelevant at this point. He's already crossed that bridge. A more important question might be does he have genes that predispose him to more severe or more aggressive disease. The key gene for that is certain alleles of the NOD2 gene. Knowing his NOD2 status might be useful in terms of estimating what the future might hold and thus how aggressively the doc may wish to treat him and how often to follow-up.

You can find out his NOD2 and other related genes from several sources. 23andMe offers a full genetic analysis. However, they are a not a clinical lab and won't interpret the NOD2 status or other Crohn's genes for you. However, you can submit the 23and Me data to other interpretive services that can spell out his NOD2 status and other relevant genes. Or you could ask your doc to prescribe a Prometheus Crohn's Prognostic Test, which is focused only on Crohn's related genes and factors, including NOD2. And since they are a clinical lab they will provide some interpretation of the results.

 

[my little penguin]

I agree
Ds has no family history but was Dx at age 7
We did 23&me as well
Lots of crohns genes in there
Hasn't changed his treatment though

 

[mnms]

IMO you do not need to contact his father at all. You can get a better idea of his genetic susceptibility to Crohn's disease and his genetic predisposition to either severe or mild disease with genetic testing than you can with a family history. Family members often don't know or have only very hazy knowledge of what medical conditions various ancestors may or may not have had. Plus ancestors by definition lived in the past, when state-of-the-art medical diagnosis may not have been all that good. You may find out that grandpa or great-grandma had "stomach trouble," but it may be impossible to determine whether they had IBD, or celiac, or IBS, or something else entirely.

Since your husband has already been diagnosed with Crohn's his genetic susceptibility to coming down with the disease is kind of irrelevant at this point. He's already crossed that bridge. A more important question might be does he have genes that predispose him to more severe or more aggressive disease. The key gene for that is certain alleles of the NOD2 gene. Knowing his NOD2 status might be useful in terms of estimating what the future might hold and thus how aggressively the doc may wish to treat him and how often to follow-up.

You can find out his NOD2 and other related genes from several sources. 23andMe offers a full genetic analysis. However, they are a not a clinical lab and won't interpret the NOD2 status or other Crohn's genes for you. However, you can submit the 23and Me data to other interpretive services that can spell out his NOD2 status and other relevant genes. Or you could ask your doc to prescribe a Prometheus Crohn's Prognostic Test, which is focused only on Crohn's related genes and factors, including NOD2. And since they are a clinical lab they will provide some interpretation of the results.

Thank you so much! We will try 23&me