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Am I Doing The Right Thing!?

salexander421

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salexander421 Enthusiast
salexander421
Posted

My last GI visit went ok, they were really nice but the one thing that turned me off a little was that they wanted to scope me even though they knew I was gluten free. And, when I asked about genetic testing they said they couldn't do that there. Well, I did the genetic testing through enterolab and it came back positive for two copies of the DQ8 gene. I decided to put my self through a gluten challenge and find a different GI and redo the testing. Well, I started the gluten challenge at the beginning of Dec. I called the GI I wanted to see but they're first available appt isn't until March 18th. That just feels like SO far away considering how I'm feeling and that I'm not sleeping at all at night and tired all day. Not to mention, who knows how long it would be after that to get a scope.

So, I called the original GI back and they could get me in Wed. morning! So I made the appt. Do you think this is a good move? Also, do you think I've been eating gluten long enough? My girls are doing a 3 month challenge per their GI and my challenge has been just under 3 months. I'm just ready to get this process over with and get back to my gluten free ways and be healthy again!!

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shopgirl Contributor
shopgirl
Posted

Doesn't that give you your answer right there or do you absolutely need a diagnosis? When I hear someone say they can't wait to get back to being gluten-free, that seems like a pretty solid indication that you have no business eating gluten.

ravenwoodglass Mentor
ravenwoodglass
Posted

Since you have gone through the hell of the challenge you could go ahead and get the scope done now but it seems as the other poster stated that you already have the answer and you should keep in mind that whether you go ahead and have it done now or wait another month you could still have a false negative.

salexander421 Enthusiast
salexander421
Posted
  • Author

Doesn't that give you your answer right there or do you absolutely need a diagnosis? When I hear someone say they can't wait to get back to being gluten-free, that seems like a pretty solid indication that you have no business eating gluten.

Thanks for your reply! If I didn't have kids and didn't plan on ever having kids then I wouldn't feel so strongly about getting a diagnosis. But I do have kids, who both have the same symptoms and I feel like it's important for them to know where it's coming from. Plus, I feel like I've come this far I might as well go through with the testing. Otherwise I would feel like I put my self through this for nothing. I do know that I have no business eating gluten but I also would like to go ahead and get the testing done. Either way I will be gluten free when it's all over with.

cassP Contributor
cassP
Posted

i think you did the right thing- make sure they take @ 6 biopsies from different areas.. damage can be patchy.. no sense in doing the whole procedure if the doc is only gonna take 1 biopsy and call u a negative.

then i would just go gluten free right after the test- dont wait for any results! my blood tests werent a solid positive (even tho my EMA was- but my docs didnt notice that and i didnt understand it)... anyways- i had more than enough symptoms to convince me, but i still needed that "DX" to get motivated... i too got the enterolab genetics test- and i too got double DQ8... when i saw that- i thought to myself- ok, that's it- that's enough for me- my thinking was - CLEARLY, im double DQ8- if i dont have Celiac now- it's purely a matter of time... so i went 100% gluten free... then 3 weeks later- i got DH on my stomach- went to talk to my Gi-> and he agreed with my self diagnosis.

so you did well- and we all expect you to be gluten free right after the scope ;)

now go eat for all of us :( i was craving BK & McD's last night :(

salexander421 Enthusiast
salexander421
Posted
  • Author

now go eat for all of us :( i was craving BK & McD's last night :(

Thanks for the encouragement :) I have definitely eaten enough gluten for everyone on this board! :P It is nice to be able to give in to my cravings but I would much rather feel healthy :)

salexander421 Enthusiast
salexander421
Posted
  • Author

Had my appointment today and I'm glad I went back to this doctor instead of waiting another month to see the new one. I just saw the physician's assistant and she was very nice. She said that I was way more informed than most of their patients and they wanted to make sure I got everything I was wanting done, always nice to hear :)

Had my celiac panel done today and they said I should get my results back by fri (one benefit of going to a smaller practice in a smaller town rather to the one in the city:p). My appointment was early this morning and I forgot to eat before I left so hopefully I didn't mess anything up there, not sure how quickly your body stops producing antibodies. My endoscopy is scheduled for March 11th, so just a couple more weeks of eating this nasty stuff! I also asked about how many biopsies they take and she said they take several but to make sure and discuss it with the doctor the morning of the procedure so I plan on asking them to at least take 6.

I'm feeling much calmer about all this now, so glad I went this route instead of waiting another month to see a doctor I've heard is good for celiac but have no personal experience with. I also know that if I am iffy about the biopsy I can always get another doctor to look at it but it least it will be done!

Thanks everyone for your replies!!

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ILoveflowers74 Newbie
ILoveflowers74
Posted

Currently 20 days into my challenge . I really hope you get your dx it will give me hope. I feel terrible. I'm worried that the neuropathy will cause permanent damage. I need it in black and white ... I have no doubts about having the disease .. I feel like the docs don't care about what your going through while doing the challenge. Or they just don't think you really have the disease .

Please post when u get your results and how many days you did the challenge.

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    • knitty kitty
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      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

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      Contact them.
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