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scstampin

Member Since 17 May 2012
Offline Last Active Sep 14 2012 08:15 AM
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Posts I've Made

In Topic: Can You Help Me With My Gene Test Results?

26 June 2012 - 11:59 AM

Thank you SOO much for taking the time to help me understand all of this! ;)

In Topic: Can You Help Me With My Gene Test Results?

24 June 2012 - 10:52 PM

Kudos to all of you that "get" the gene stuff and have done the research! I have read and read and read about it over the last few weeks but it is SO confusing to me! So THANK YOU for all your help! :)

I have been back on gluten fully for about a week and a half, maybe 2 weeks. If I haven't eating much gluten during the day, I will eat a few pieces of toast before bed just to make sure I got enough. Before that I was gluten light. My poor husband...he turned 30 this weekend,so we got a sitter and went out to dinner and stayed at a bed and breakfast. I have been making sure to get enough gluten everyday, and didn't want to risk "messing anything up" with my challenge, so we went to dinner and I had pasta and some bread. I ate about 1/4 of it, and by the time we left the restaurant, I was so bloated I looked 5 months pregnant and just felt awful. We ended up going back to our room early instead of going out and just going to bed because I was so sick. :(

anyway, I am wanting a second opinion and had all my tests sent to Mayo in Rochester and am waiting to hear back from them to see what they say. We live about 2 hours from Rochester, and have family there, so I am hoping it works out for me to see the Celiac specialist there. I have not sent in my genetic test results, so I will probably call tomorrow to give them those.

I agree! 2 biopsies were def. not enough! And I was so upset with the GI nurse, when I asked her if they could take more biopsies again since they would be down there anyway for my endoscopic ultrasound, and she said "No". Frustrating! What would be the harm in doing a few extra biopsies!? Although since I wasn't eating lots of gluten then, it may not have been accurate anyway.

So I have half the DQ2.5 gene....Do GI's typically recognize that as a celiac risk?

And then the other gene is DQ 7 or is it DQ 1??? Sorry still a little confused? Beachbirdie said it looks like I have DQ7 and Nora said DQ 1, or do I have both of those? Where does the half gene fit in?

sorry for all the questions and thanks for all the help!

In Topic: Can You Help Me With My Gene Test Results?

23 June 2012 - 07:28 PM

Beachbirdie, thanks for your response! So is it the DQ alpha or DQ beta that looks like it is DQ7? Still trying to figure out the other gene. No CLUE how this stuff works!

Very interesting articles. Now that my daughter has been diagnosed, I am very curious to know what her genes are...if she has DQ2 or 8 or not.. we may get her tested just to know.

squirmingitch, yes I agree, I think the scope and blood tests were invalid, I kick myself for being gluten light before, even though it was unknowingly. But I feel like if I had been eating "normal" and not trying to lose weight I would have had accurate results.

As of right now, I am eating gluten....and not feeling very well, but I am hoping to get testing again. We'll see how long I can continue my challenge....

In Topic: Can You Help Me With My Gene Test Results?

21 June 2012 - 09:47 PM

Also, what genes does this mean I have? I see people posting I am DQ2 and DQ8 or whatever they are. I can't tell why my 2 genes are from these results. Can someone help?

Thanks!

In Topic: Can You Help Me With My Gene Test Results?

20 June 2012 - 08:25 PM

Also wanted to add... I do think I will go gluten free with my daughter anyway after exhausting my options with testing, but I would like to try to get a diagnosis if I DO have Celiac disease, because I feel that if I don't have that, I won't a basis to ask for other testing. I broke both of my femurs in a car accident 12 years ago, and my bones took years to heal and they did not know why. I had to have one leg re-rodded because they were worried the rod was going to break as it was bending because the bone wasn't healing around it as well as it should.

Now, I feel like maybe I need to have a bone density scan done, and maybe I wasn't absorbing nutrients (or the vitamins and calcium I was on at the time?) But I don't think I could just say "hey, I want this test done", unless I have a "reason" I guess. <_<