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Gene Results Question

shezatrip

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shezatrip Apprentice
shezatrip
Posted

Hi,

This is for all of you experts on Celiac. I have had symptoms for years: painful bloating, mouth ulcers, diziness, fibromyalgia, gassy, etc...

However, I started on semi-gluten free..so couldn't take the blood test unless i loaded up again.

I did take the Gene test however: tested negative for DQ2...tested positive for DQ8/DQB1*02.

What do you think that means? I know it means i carry one gene that can activate celiac, however it doesn't mean that I am

have it right?

Should i load up on gluten for a few weeks and take the other tests?

What would you do?

Thanks so much,

Tina

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beebs Enthusiast
beebs
Posted

Thats right. You have one of the celiac genes - same one as me, but that doesn't mean you have it- just that you can potentially get it...although with your symptoms I would be asking for celiac testing. When you say low gluten - how much gluten do you eat do think?

shezatrip Apprentice
shezatrip
Posted
  • Author

Thats right. You have one of the celiac genes - same one as me, but that doesn't mean you have it- just that you can potentially get it...although with your symptoms I would be asking for celiac testing. When you say low gluten - how much gluten do you eat do think?

Thank you so much for writing me back :-) I started going gluten free to test the waters...so I am about 70% gluten free 30% not. I don't have the classic bending over in pain after being glutened. i also don't have diarrhea. What I do have is

muscle aches/fibro, ulcers, vocal chord swelling, headaches and the intestinal flares (which feel like ulcers) are once every 3 months or so.....

Should I start glutening up to take the blood test? how long will it take before I can take it?

Again, thx for your quick response...just got the results and needed to chat with someone :-)

JoshB Apprentice
JoshB
Posted

I don't think that being 70% gluten free is going to help you any. It might affect your tests. The official answer is that to get an accurate test you should be eating at least four pieces of bread for three months. The "real" answer is "nobody knows".

shezatrip Apprentice
shezatrip
Posted
  • Author

I don't think that being 70% gluten free is going to help you any. It might affect your tests. The official answer is that to get an accurate test you should be eating at least four pieces of bread for three months. The "real" answer is "nobody knows".

3 months :( **SIGH** I don't know. I want to quit gluten all together, however without the test I will never really

know for sure for my son and he is experiencing some symptoms.

Did you get the other tests or did you stop at just the gene test?

Can you tell me what your symptoms were and what went away/how long?

:)

beebs Enthusiast
beebs
Posted

3 months :( **SIGH** I don't know. I want to quit gluten all together, however without the test I will never really

know for sure for my son and he is experiencing some symptoms.

Did you get the other tests or did you stop at just the gene test?

Can you tell me what your symptoms were and what went away/how long?

:)

Hi, I didn't get the biopsies and really wish I had. Even though everyone is sure I have it I can't get an official diag and I hate that! If I had my time over I wouldn't have just gotten the endo and be done with it. My symptoms have turned severe and I can't do a challenge even though I want to. Doh!

shezatrip Apprentice
shezatrip
Posted
  • Author

Hi, I didn't get the biopsies and really wish I had. Even though everyone is sure I have it I can't get an official diag and I hate that! If I had my time over I wouldn't have just gotten the endo and be done with it. My symptoms have turned severe and I can't do a challenge even though I want to. Doh!

Beebs,

I completely understand how you feel..It's as if you are in limbo..yet, to do all the tests take time, energy, money..

and having to regluten yourself for months :-( Def. a catch 22.

Did you do the blood tests. trans. glut?

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beebs Enthusiast
beebs
Posted

Beebs,

I completely understand how you feel..It's as if you are in limbo..yet, to do all the tests take time, energy, money..

and having to regluten yourself for months :-( Def. a catch 22.

Did you do the blood tests. trans. glut?

I did them years ago - they were negative and I was also told that I was negative for the celiac genes therefore case closed, done and dusted as far as Drs were concerned. The I started getting intussusception and I was referred to a Gastro and everyone was a bit like WTF...I was also seeing a rheumy for other autoimmune symptoms. Anyhow I became pregnant and decided to go gluten free and immediately my GERD resolved which I had really severely for years and I was thinking - thats weird. I had all kinds of other symptoms that resolved as well that were not common celiac symptoms but I still didn't actually believe that it was gluten. And then about 6 weeks later I went to a restaurant with 6 friends - we were all going to share our food (vietnamese) and I couldnt' be bothered with the whole gluten-free thing so I ate gluten. I started to feel really bad about 45 mins later. Started projectile vomiting and then the intussusception started again and I ended up in hospy. My Drs were 'don't ever eat gluten again (as itussusception is a life threatening medical emergency ). In the end I found out my genes test was never done - so I have the same as yours, my mother is celiac and based on the severity off my symptoms they all are positive thats what it is. Specially as I haven't had any episodes since

I went gluten-free and this is by far the longest time in between. But I will still never get an official diagnosis...boohoo

shezatrip Apprentice
shezatrip
Posted
  • Author

Amazing everything disappeared :D I need to be more committed. It seems as though I start, and don't see huge differences..

so I stop. I either need to gluten up and test/or stay strict :P

beebs Enthusiast
beebs
Posted

Amazing everything disappeared :D I need to be more committed. It seems as though I start, and don't see huge differences..

so I stop. I either need to gluten up and test/or stay strict :P

I hear ya, I wouldn't have stuck with the diet unless I had the intussuception - seriously. All the other symptoms I could deal with - now I'm just too plain scared to eat gluten again.

shezatrip Apprentice
shezatrip
Posted
  • Author

I hear ya, I wouldn't have stuck with the diet unless I had the intussuception - seriously. All the other symptoms I could deal with - now I'm just too plain scared to eat gluten again.

Beebs,

if you don't mind me asking, what were all your other symptoms that disappeared? Also, how long did it take?

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