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Just Got A Call From The Doctor's Office...

MsCurious

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MsCurious Enthusiast
MsCurious
Posted

Just got a call from the doctor's office, and STILL no results! :( This waiting is killing me! I guess I'm getting a little impatient, because I KNOW I feel so much better when I don't eat gluten, but I can't go gluten-free until the results are back and we know what direction we're going in. I don't want to mess up the biopsy results if that's next. Its been two weeks since blood was drawn... I sure hope the results come soon. It will answer a LOT of questions. :) Have most of you had the genetic marker test? (HLA-DQ2, HLA-DQ8)?

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ravenwoodglass Mentor
ravenwoodglass
Posted

I had the gene tests done 5 years after my doctors finally diagnosed me. It was a long haul because I am seronegative. Interestingly both my kids did show up positive in blood tests. I am a double DQ9 which in this country is usually considered an RA associated gene but in other countries is considered a celiac associated gene. While gene testing is interesting it should not be relied on to totally rule out celiac.

If you feel better on the diet don't let possibly false negatives on testing talk you out of doing it.

MsCurious Enthusiast
MsCurious
Posted
  • Author

I had the gene tests done 5 years after my doctors finally diagnosed me. It was a long haul because I am seronegative. Interestingly both my kids did show up positive in blood tests. I am a double DQ9 which in this country is usually considered an RA associated gene but in other countries is considered a celiac associated gene. While gene testing is interesting it should not be relied on to totally rule out celiac.

If you feel better on the diet don't let possibly false negatives on testing talk you out of doing it.

Thanks for sharing your story... I'm definitely going gluten-free, I already know I feel 100% better, but I would like to find out if it is celiac or a non-celiac gluten sensitivity/intolerance. They both are awful to live with, same symptoms, but one damages your internal body, the other just makes you feel sick. If I'm non-celiac gluten sensitive/intolerant I won't worry so much about cross contamination. If it IS Celiac, I will be religious about it.

I'm also really trying to figure out if it is celiac, because my dad has a bunch of the symptoms, too, but doesn't really think its an issue. I think if I can tell him he needs to get tested because of genetics, he will. :) I just read another thing from Mayo Clinic that said, there are lots of false negatives, and they are learning so much just in the last year or so about non-celiac gluten sensitivity, but they say Celiac is four times more common now than it was 50 years ago, and they are finding it in older people like crazy. So, if you have symptoms and don't get a positive result, be persistent. I'm just really ready to find out what my markers say, and if they fall into the categories that are celiac related, that's really enough for me. There's enough "unknown" in the medical world about gluten sensitivity that if I have the genetic markers (which don't mean you have celiac, but that you could have it or develope it)and based on my symptoms, and positive response to gluten-free diet, I WILL go gluten-free, regardless of other test outcomes. There's still so much they DON'T know, but I know what my body is telling me. ;)

Oh, and another thing is, Celiac is so common in places like England and Ireland that they usually diagnose in under a year. In the USA it takes an average of ELEVEN YEARS to get a diagnosis!!! That is totally unacceptable in my opinion... not that I have an opionion or anything! LOL :P But that's just ridiculous. The medical community needs to educate their doctors who have been out of med school for more than five years! That's my story, and I'm sticking to it. ;)

ravenwoodglass Mentor
ravenwoodglass
Posted

Thanks for sharing your story... I'm definitely going gluten-free, I already know I feel 100% better, but I would like to find out if it is celiac or a non-celiac gluten sensitivity/intolerance. They both are awful to live with, same symptoms, but one damages your internal body, the other just makes you feel sick. If I'm non-celiac gluten sensitive/intolerant I won't worry so much about cross contamination. If it IS Celiac, I will be religious about it.

I'm also really trying to figure out if it is celiac, because my dad has a bunch of the symptoms, too, but doesn't really think its an issue. I think if I can tell him he needs to get tested because of genentics, he will. :) I just read another thing from Mayo Clinic that said, there are lots of false negatives, and they are learning so much just in the last year or so about non-celiac gluten sensitivity, but they say Celiac is four times more common now than it was 50 years ago, and they are finding it in older people like crazy. So, if you have symptoms and don't get a positive result, be persistent. I'm just really ready to find out what my markers say, and if they fall into the categories that are celiac related, that's really enough for me. There's enough "unknown" in the medical world about gluten sensitivity that if I have the genetic markers (which don't mean you have celiac, but that you could have it or develope it)and based on my symptoms, and positive response to gluten-free diet, I WILL go gluten-free, regardless of other test outcomes. There's still so much they DON'T know, but I know what my body is telling me. ;)

I have to note that I would by some doctors be considered to be gluten intolerant rather than celiac because I don't show up in blood tests and don't carry either of the two most common celiac related genes. As you can see from my signature gluten intolerance can also have really negative effects and is also an autoimmune condition. I also am more sensitive to CC than many that have had positive blood work.

yorkieluv Newbie
yorkieluv
Posted

Hi, I know it is so frustrating when you just want to know which one. I was recently diagnosed as having a problem with gluten and told by my doctor to go gluten free, she ran a celiac panel and sent me to a nutritionist. The blood test was negative but by the time I found out, I had been gluten free over a month and feeling so much better. Since I had been gluten free having an EGD w/ biopsy was useless and I didn't want to start eating gluten again to have the test. I went ahead and did the genetic testing with Enterolab which came back a double DQ8 gene. Mine could be just gluten sensitivity but I wanted to know first if there was even a possibility genetically to have Celiacs. I have seen a specialist who treats over 600 celiac/gluten sensitive pts. a year and she said she feels like it is Celiacs but officially diagnosing it as such really can't be done without positive blood test/positive biopsy. It really doesn't matter in the end to me which one it is now because as I understand it both have consequences if you eat gluten. I will say I was like you in the beginning, I wanted to know because if it wasn't celiacs then worrying about CC wouldn't be as bad. The doctor did tell me once you are gluten free and you are "glutened" your symptoms can be more severe.

Good Luck and I hope you find your answers soon!

Carolyn

MsCurious Enthusiast
MsCurious
Posted
  • Author

Hi, I know it is so frustrating when you just want to know which one. I was recently diagnosed as having a problem with gluten and told by my doctor to go gluten free, she ran a celiac panel and sent me to a nutritionist. The blood test was negative but by the time I found out, I had been gluten free over a month and feeling so much better. Since I had been gluten free having an EGD w/ biopsy was useless and I didn't want to start eating gluten again to have the test. I went ahead and did the genetic testing with Enterolab which came back a double DQ8 gene. Mine could be just gluten sensitivity but I wanted to know first if there was even a possibility genetically to have Celiacs. I have seen a specialist who treats over 600 celiac/gluten sensitive pts. a year and she said she feels like it is Celiacs but officially diagnosing it as such really can't be done without positive blood test/positive biopsy. It really doesn't matter in the end to me which one it is now because as I understand it both have consequences if you eat gluten. I will say I was like you in the beginning, I wanted to know because if it wasn't celiacs then worrying about CC wouldn't be as bad. The doctor did tell me once you are gluten free and you are "glutened" your symptoms can be more severe.

Good Luck and I hope you find your answers soon!

Carolyn

Thanks Carolyn for your kind words. If I had a double DQ8... I'd go gluten free so fast and never look back. If you're having symptoms and gluten-free is working... your doctor is probably spot on. Glad you at least got those results. I'd be pretty assured with that, and I wouldn't poison myself by going back on gluten to get the tests. In fact, if I have one of the markers...not sure I'll do the biopsy. The prescription is the same... gluten-free diet...and like you said, and I already know I feel so much better gluten-free. :) I don't know ...we'll see what the doctor says. I guess if he recommends the biopsy I would do it just to see the extent of the dmg if there is any.

ravenwoodglass Mentor
ravenwoodglass
Posted

I will say I was like you in the beginning, I wanted to know because if it wasn't celiacs then worrying about CC wouldn't be as bad. Carolyn

People need to be concerned about CC whether they are celiac or gluten intolerant. With both damage is being done. It is a common misconception that gluten intolerance is not as serious and that folks don't need to be as careful. They do need to be just as careful and in some cases are even more sensitive than people that are diagnosed as 'celiac'.

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MsCurious Enthusiast
MsCurious
Posted
  • Author

People need to be concerned about CC whether they are celiac or gluten intolerant. With both damage is being done. It is a common misconception that gluten intolerance is not as serious and that folks don't need to be as careful. They do need to be just as careful and in some cases are even more sensitive than people that are diagnosed as 'celiac'.

Oh, thanks...that's good to know! Honestly, there is so much the doctors DON'T know ...and it seems people that deal with this in their every day lives have a better handle on it. I can't believe how much research facilities are finding out that they didn't know just in the last year, from what I've read. That leads me to believe there is a boatload of very real ... very valid information that they haven't put together yet...at least "officially".

NancyL Explorer
NancyL
Posted

People need to be concerned about CC whether they are celiac or gluten intolerant. With both damage is being done. It is a common misconception that gluten intolerance is not as serious and that folks don't need to be as careful. They do need to be just as careful and in some cases are even more sensitive than people that are diagnosed as 'celiac'.

Wow, thank you for pointing that out. I did not know that. I was someone who thought that intolerance wasn't as "bad" as Celiac.

mushroom Proficient
mushroom
Posted

Wow, thank you for pointing that out. I did not know that. I was someone who thought that intolerance wasn't as "bad" as Celiac.

Don't feel bad, it is a common misconception. Celiac is also "intolerance", it just happens to be a diagnosable form of it.

yorkieluv Newbie
yorkieluv
Posted

People need to be concerned about CC whether they are celiac or gluten intolerant. With both damage is being done. It is a common misconception that gluten intolerance is not as serious and that folks don't need to be as careful. They do need to be just as careful and in some cases are even more sensitive than people that are diagnosed as 'celiac'.

Thanks Raven! It is so hard to know what is what at times, I have never seen such a medical problem that is so complex.

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    • trents
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      Welcome, @catnapt! The most recent guidelines are the daily consumption of a minimum of 10g of gluten (about the amount found in 4-6 slices of wheat bread) for a minimum of two weeks. But if possible stretching that out even more would enhance the chances of getting valid test results. These guidelines are for those who have been eating gluten free for a significant amount of time. It's called the "gluten challenge".  Yes, you can develop celiac disease at any stage of life. There is a genetic component but also a stress trigger that is needed to activate the celiac genes. About 30-40% of the general population possesses the genetic potential to develop celiac disease but only about 1% of the general population actually develop celiac disease. For most with the potential, the triggering stress event doesn't happen. It can be many things but often it is a viral infection. Having said that, it is also the case that many, many people who eventually are diagnosed with celiac disease probably experienced the actual onset years before. Many celiacs are of the "silent" type, meaning that symptoms are largely missing or very minor and get overlooked until damage to the small bowel lining becomes advanced or they develop iron deficiency anemia or some other medical problem associated with celiac disease. Many, many are never diagnosed or are diagnosed later in life because they did not experience classic symptoms. And many physicians are only looking for classic symptoms. We now know that there are over 200 symptoms/medical problems associated with celiac disease but many docs are only looking for things like boating, gas, diarrhea. I certainly understand your concerns about not wanting to damage your body by taking on a gluten challenge. Your other option is to totally commit to gluten free eating and see if your symptoms improve. It can take two years or more for complete healing of the small bowel lining once going gluten free but usually people experience significant improvement well before then. If their is significant improvement in your symptoms when going seriously gluten free, then you likely have your answer. You would either have celiac disease or NCGS (Non Celiac Gluten Sensitivity).
    • catnapt
      how much gluten do I need to eat before blood tests?

      By catnapt · Posted

      after several years of issues with a para-gland issue, my endo has decided it's a good idea for me to be tested for celiac disease. I am 70 yrs old and stunned to learn that you can get celiac this late in life. I have just gradually stopped eating most foods that contain gluten over the past several years- they just make me feel ill- although I attributed it to other things like bread spiking blood sugar- or to the things I ate *with* the bread or crackers etc   I went to a party in Nov and ate a LOT of a vegan roast made with vital wheat gluten- as well as stuffing, rolls and pie crust... and OMG I was so sick! the pain, the bloating, the gas, the nausea... I didn't think it would ever end (but it did) and I was ready to go the ER but it finally subsided.   I mentioned this to my endo and now she wants me to be tested for celiac after 2 weeks of being on gluten foods. She has kind of flip flopped on how much gluten I should eat, telling me that if the symptoms are severe I can stop. I am eating 2-3 thin slices of bread per day (or english muffins) and wow- it does make me feel awful. But not as bad as when I ate that massive amnt of vital wheat gluten. so I will continue on if I have to... but what bothers me is - if it IS celiac, it seems stupid for lack of a better word, to intentionally cause more damage to my body... but I am also worried, on the other hand, that this is not a long enough challenge to make the blood work results valid.   can you give me any insight into this please?   thank you
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