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Gene Test Results

goodnews

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goodnews Apprentice
goodnews
Posted

So they said I was "very high" risk...but got the results back. I don't quite get it but maybe someone can enlighten me. Here is the data of what they found

DQ2.5 (HLA DQA1*05, DQB!*0201)

DQ8 (HL DQA1*03, DQ8B1*0302)

Also it says that I am at 14X greater risk. What exactly does that mean....14X more likely then someone in the general population? And is there any way of telling if I got something from 2 parents or just one? I have negative bloodwork and negative biopsy and the secretary reported that the dr. said that even though it could develop he "doesn't think that you will ever have to worry about getting celiac in your lifetime." I thought that was quite comical. How on earth could he ever know. Anyhow, I am still waiting to get my gallbladder removed and then see if things improve. But also want to get my daughter tested for celiac with her symptoms.

Thanks!

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sb2178 Enthusiast
sb2178
Posted

Both genes are associated with celiac disease, so each parent has one. DQ8 is more commonly recognized. If you want to read more about HLA, Wikipedia's not a bad source.

Exactly what that high risk # means.

So, I'd recommend starting and maintaining a gluten free diet for at least 3-4 weeks, preferably 2 or 3 months. Try some gluten, see how you feel. If gluten-free helps, you are one of us lucky folk who don't have clear diagnosis but are *much* better off of gluten. If you choose to return to it, periodic testing or at least testing upon any symptoms is a conservative approach.

cassP Contributor
cassP
Posted

Both genes are associated with celiac disease, so each parent has one. DQ8 is more commonly recognized. .

really? i thought of course 2 & 8 were the "classic" genes, but everything ive read said that something like 90 to 95% of Celiacs are DQ2. and only like 5% are DQ8. those arent the exact numbers, but close.

of course that's just the official in the box statistic, cause we all know that Celiacs are being diagnosed with other DQ#s.

goodnews Apprentice
goodnews
Posted
  • Author

really? i thought of course 2 & 8 were the "classic" genes, but everything ive read said that something like 90 to 95% of Celiacs are DQ2. and only like 5% are DQ8. those arent the exact numbers, but close.

of course that's just the official in the box statistic, cause we all know that Celiacs are being diagnosed with other DQ#s.

On my results near the bottom it says that 85% of Celiacs have DQ2 and 5% have DQ8...of course the combo makes the risk go up higher.

ravenwoodglass Mentor
ravenwoodglass
Posted

On my results near the bottom it says that 85% of Celiacs have DQ2 and 5% have DQ8...of course the combo makes the risk go up higher.

Of course that is only the diagnosed celiacs that they have gene tested. It isn't routine to gene test all when they are diagnosed and then there are the 10% that have a different associated gene. As for yourself if you have symptoms with the results of the gene tests you should be sure to do at least a couple months strictly gluten free no matter what the other test results were.

goodnews Apprentice
goodnews
Posted
  • Author

Of course that is only the diagnosed celiacs that they have gene tested. It isn't routine to gene test all when they are diagnosed and then there are the 10% that have a different associated gene. As for yourself if you have symptoms with the results of the gene tests you should be sure to do at least a couple months strictly gluten free no matter what the other test results were.

Absolutely. I plan on doing it after the I get my gallbladder out if I still have these same symptoms (or if any of my symptoms don't clear up). And getting my daughter tested too with all her symptoms. Is there any way from my results to see if they came from both or just one parent? I want my mom to get tested too. She has a bunch or symptoms. We have a history of colon cancer in our family as well as very early arthritis and osteoporosis. Lots of other cancers too...but more of the intestinal kinds overall. She has all sorts of stomach issues. Will have to check it out.

domesticactivist Collaborator
domesticactivist
Posted

Even one of the genes you have is enough to raise risk. That means both your parents and your children all have elevated genetic risk. Another thing to think about is that the diagnostic tests show damage that has *already* been done. Seems to me if there are symptoms that show bad digestion or inflammation or neurological stuff, it's likely going gluten-free will help and it would be silly not to try. Even without symptoms, going gluten-free could prevent future problems if the risk factor is there.

I'm no dr but I wonder why you at having your gall bladder out before trying dietary changes. I've seen people post about regretting that decision. The gall bladder is essential to digesting fats, and it's being increasingly shown that fats are essential to our health. If i were in your position I would do everything in my power to keep all parts of my digestive system, adopt a diet that will heal the potential celiac disease, and then, after a year or two make decisions about something as drastic as permanently removing part of my digestive system.

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ravenwoodglass Mentor
ravenwoodglass
Posted

I'm no dr but I wonder why you at having your gall bladder out before trying dietary changes. I've seen people post about regretting that decision. The gall bladder is essential to digesting fats, and it's being increasingly shown that fats are essential to our health. If i were in your position I would do everything in my power to keep all parts of my digestive system, adopt a diet that will heal the potential celiac disease, and then, after a year or two make decisions about something as drastic as permanently removing part of my digestive system.

I agree strongly with this. The diet may resolve all issues and negate the need for surgery.

goodnews Apprentice
goodnews
Posted
  • Author

Even one of the genes you have is enough to raise risk. That means both your parents and your children all have elevated genetic risk. Another thing to think about is that the diagnostic tests show damage that has *already* been done. Seems to me if there are symptoms that show bad digestion or inflammation or neurological stuff, it's likely going gluten-free will help and it would be silly not to try. Even without symptoms, going gluten-free could prevent future problems if the risk factor is there.

I'm no dr but I wonder why you at having your gall bladder out before trying dietary changes. I've seen people post about regretting that decision. The gall bladder is essential to digesting fats, and it's being increasingly shown that fats are essential to our health. If i were in your position I would do everything in my power to keep all parts of my digestive system, adopt a diet that will heal the potential celiac disease, and then, after a year or two make decisions about something as drastic as permanently removing part of my digestive system.

I really am just not sure what to do. The one doctor said that at the low functioning level it is at no dietary changes would help heal it. And honestly, I have been searching all over the internet to hear a story about someone who had a gallbladder functioning at that level with pain that was somehow healed on a diet and have yet to find one. If you see one, please let me know. I am not eager to get it out, but eager to end the pain. I have constant stomach pain and feel like something is constantly poking under my ribs and have bouts of nausea and pain when I change positions (and had frequent painful esophagus spasms for days which thankfully I have only had one or two today which is good). So I guess at this point, I just haven't heard of a diet changing this. I would like to think it could.

goodnews Apprentice
goodnews
Posted
  • Author

I'm no dr but I wonder why you at having your gall bladder out before trying dietary changes.

Oh, and I probably should add that I am 33, eat a lowfat low meat diet already...with lots of fruits and veggies. I was vegetarian for 13 years of my life and eat quite healthy as it is. I am avg weight (maybe a little under) and in pretty good shape...although with the pain I have stopped running and working out. So...I don't see how much a dietary change would help. Like I said, maybe gluten free could help but the doctor does not seem to think it would heal my gallbladder at this point.

domesticactivist Collaborator
domesticactivist
Posted

I'm sorry to hear that you have been dealing with so much pain for so long. I imagine you'd want to be able to just finally get some relief!

I guess I'm just coming at it from a more holistic perspective than most people do. Over the years I have become increasingly skeptical of the approach of looking at problems as individual phenomena.

It's not that I think going gluten-free is the cure for gallbladder problems. It's that my personal approach is to heal as much as I can before doing anything so drastically life-altering as surgery. It's well-established and accepted by the mainstream medical community that gluten damages the intestines of celiac people. (Some doctors go further, and include all grains contribute to damaging the gut, for most people.)

Damage to the intestines is accepted by the mainstream medical community as causing other problems in the body resulting from the inability to properly digest foods and move nutrients into the rest of the body. (Some doctors go further, saying that not only do the right things not get done, the wrong things do - wrecking further havoc!)

What specifically is wrong with your gallbladder? I don't know if there are options other than surgery if it is full of stones, but there are other types of gallbladder problems as well - several are related to inflammation. Inflammation in the body is directly related to grain and sugar consumption, which is another reason I think trying dietary changes might help in the long term, and be something to try first - especially since many people who have their gallbladder out continue to have problems afterwards.

If it were me, I would think to myself "What is my primary problem?" and try to fix that first, then evaluate the situation. Yes - the gallbladder is giving you pain and may feel like the primary problem. But is it possible that the reason the gallbladder is functioning poorly is the result of the damage that has been done over the course of a life-time due to an undiagnosed and untreated underlying problem? It seems to me that the gallbladder is more likely to be a symptom than a primary cause of problems.

I know the gallbladder diet is low fat, and of course it is important to manage symptoms, but I wonder if that conventional wisdom that one should avoid fat for gallbladder health is really more about managing the symptom of a low-functioning gallbladder than about having a healthy gallbladder.

I'll keep an eye out for gallbladder related stories - honestly I haven't done much research or reading on it in ages. It just seems to me that the least invasive option should always be tried first.

goodnews Apprentice
goodnews
Posted
  • Author

Thanks so much for your input and thoughts. I too am a more conservative person and not a fan of surgery. My gallbladder doesn't have any stones, just not functioning right (functioning at 23%). I am guessing it is inflamed as they guy told me how it was a very big gallbladder. (or maybe it's just big and not inflamed, who knows). Please let me know if you know of any stories about it...I did search for a while and just found nothing. I don't know, I am thinking a lot more about it and will hopefully get another appointment to talk with my doctor about it as he referred me to surgeon but we never discussed the results.

mushroom Proficient
mushroom
Posted

I don't know of any stories about someone's gallbladder recovering after going gluten free, because things don't usually happen to people in that sequence. I read all the time about people having their gallbladders removed, there being no improvement in their symptoms, and then they are subsequently diagnosed with celiac disease. I think yours is the first I have read where the celiac was diagnosed prior to the surgery. So it really leaves (for me from what I have seen) the theory untested, that the celiac is causing the problem and the removal of gluten may cure it.

goodnews Apprentice
goodnews
Posted
  • Author

I don't know of any stories about someone's gallbladder recovering after going gluten free, because things don't usually happen to people in that sequence. I read all the time about people having their gallbladders removed, there being no improvement in their symptoms, and then they are subsequently diagnosed with celiac disease. I think yours is the first I have read where the celiac was diagnosed prior to the surgery. So it really leaves (for me from what I have seen) the theory untested, that the celiac is causing the problem and the removal of gluten may cure it.

That's just it...I haven't had celiac diagnosed at all. I just have strong genes for it and symptoms. Of course the symptoms could be related to the gallbladder. Or, the trauma of gallbladder surgery could cause celiac to start. Sometimes I wonder if that is why it happens in that order. gluten causes the gallbladder to fail...and then celiac starts later. Just a theory. Apparently the hormone that causes the gallbladder to contract comes from the intestine...so if it's not working right or inflamed or whatever...that could definitely cause the gallbladder to not contract right. But again, it's strange because maybe my symptoms are from my gallbladder. Too many questions and not enough answers. : )

sb2178 Enthusiast
sb2178
Posted

really? i thought of course 2 & 8 were the "classic" genes, but everything ive read said that something like 90 to 95% of Celiacs are DQ2. and only like 5% are DQ8. those arent the exact numbers, but close.

of course that's just the official in the box statistic, cause we all know that Celiacs are being diagnosed with other DQ#s.

yeah, that was a typo. A mjor typo.

yorkieluv Newbie
yorkieluv
Posted

I had the genetic testing done and I am double DQ 8. Does this mean that each of my parents have the genes? Several autoimmune diseases run in my family but I can't convince my parents to get tested.

mushroom Proficient
mushroom
Posted

Yes, each of your parents would have the DQ8 gene.

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