What Does "very High Risk Of Celiac" Really Mean?

[goodnews]

Just curious what this really means. I have to have a repeat endoscopy as they only took one sample last time that showed signs of celiac. They are doing it again next week because my gene results reflected "VERY high risk" (the person who told me accentuated the word very when she said it) of celiac.What does that even mean?

[kareng]

Just curious what this really means. I have to have a repeat endoscopy as they only took one sample last time that showed signs of celiac. They are doing it again next week because my gene results reflected "VERY high risk" (the person who told me accentuated the word very when she said it) of celiac.What does that even mean?

Forget the genes, let's look at the rest of this info. The first endo they screwed up and only took 1 sample? The sample showed Celiac's? The GI doc has a kid at an expensive college? (OK that part is just implied by the fact that he/she wants to do another endo for no reason).

The small intestine is 16-20 feet long. It would be easy to take 10 samples and have only one show damage. It is a hopeful finding. Maybe your damage isn't so bad that everywhere you look it is damaged.

[goodnews]

Forget the genes, let's look at the rest of this info. The first endo they screwed up and only took 1 sample? The sample showed Celiac's? The GI doc has a kid at an expensive college? (OK that part is just implied by the fact that he/she wants to do another endo for no reason).

The small intestine is 16-20 feet long. It would be easy to take 10 samples and have only one show damage. It is a hopeful finding. Maybe your damage isn't so bad that everywhere you look it is damaged.

Actually I think he is a great doctor for even looking into this. After all, my blood test was negative and for a lot of doctors that would be the end all right there. He only took one sample because he wasn't even looking for celiac and the sample showed inflammation and signs that could be from celiac. He said it wasn't definitive or conclusive. When they found out my gallbladder isn't working right I thought he would just bypass this whole celiac thing but he actually wants to check it out first, so I am supportive. Do I wish they took more samples in the beginning? Yes...but can't change that. Yes, they may not find more damage at all.

I am just curious what would make them say "very high risk" does that mean I got it from both sides, or what?

[kareng]

Actually I think he is a great doctor for even looking into this. After all, my blood test was negative and for a lot of doctors that would be the end all right there. He only took one sample because he wasn't even looking for celiac and the sample showed inflammation and signs that could be from celiac. He said it wasn't definitive or conclusive. When they found out my gallbladder isn't working right I thought he would just bypass this whole celiac thing but he actually wants to check it out first, so I am supportive. Do I wish they took more samples in the beginning? Yes...but can't change that. Yes, they may not find more damage at all.

I am just curious what would make them say "very high risk" does that mean I got it from both sides, or what?

I don't know much about the genetics of Celiac. From what I have gathered from people in the genetic world, they look for 2 different genes. Each parent gives us a copy of that gene so they are really looking for 4 gene pieces. The presence of 1 is enough for you to someday, maybe develop Celiac. If you have 2 matching pairs, maybe he thinks your chances are greater. I'm not sure that that is actually supported by science.

I have also been told that those 2 genes that they look for are probably not the whole picture. I know there is an ongoing study that is looking at genetics in Celiacs.

Just because you have 1 or 4 of the genes doesn't mean you will ever develop Celiac. It isn't as straight forward as you have a pair of genes for a white flower & you get a white flower.

Jess, check me & correct if wrong. or expand on this

[sb2178]

Yes, it probably means you have two DQ8 genes, which means you have something like a 40 or 50% higher chance of developing celiac than the rest of the population. Get a copy of the results if you want to know exactly which ones you carry.

As always, the genes merely mean it is possible and more likely but not that you have it. Not having the main genes merely means that it is unlikely but not impossible.

[mushroom]

Actually, the fact that your gallbladder is not working well is for us on the board a flag for celiac and should have alerted him to check for it. So many posters on here have gallbladder problems with pain, have their gallbladders removed and the pain remains because it is coming from the celiac which precipitated the gallbladder problems. This is not a medical statement but what I have observed from maybe 100 posts on here from different posters. However, doctors may not recognize the connection because they haven't been taught much about celiac in medical school.

I hope he takes a few more samples next time.

P.S. On rereading this, I am sorry for the somewhat snarky tone. It's just that sometimes I get so mad at doctors, and today's one of those days.

[Jestgar]

I don't know much about the genetics of Celiac. From what I have gathered from people in the genetic world, they look for 2 different genes. Each parent gives us a copy of that gene so they are really looking for 4 gene pieces. The presence of 1 is enough for you to someday, maybe develop Celiac. If you have 2 matching pairs, maybe he thinks your chances are greater. I'm not sure that that is actually supported by science.

I have also been told that those 2 genes that they look for are probably not the whole picture. I know there is an ongoing study that is looking at genetics in Celiacs.

Just because you have 1 or 4 of the genes doesn't mean you will ever develop Celiac. It isn't as straight forward as you have a pair of genes for a white flower & you get a white flower.

Jess, check me & correct if wrong. or expand on this

I'd buy this, although I disagree with the doc's phrasing of "very high risk".

You probably have 2 copies of one of the genes associated with celiac disease. More people with celiac disease have these genes, but having these genes does NOT mean you will necessarily get celiac disease. Just like having blue eyes puts you at a high risk for being Scandinavian. Most Scandinavians have blue eyes, but having blue eyes does not necessarily mean you are Scandinavian.