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Member Since 17 May 2009
Offline Last Active Apr 13 2011 03:13 PM

Posts I've Made

In Topic: Does Anyone Else Have Other Auto Immune

15 July 2010 - 11:18 AM

I have Hashimoto's Thyroiditis too...probably caused by my gluten sensitivity

In Topic: Celiac Diesease Without Classic "celiac" Genes?

15 July 2010 - 10:58 AM


I seriously could have written the same post. I've gone through exactly the same symptoms, tests and experiences, except I haven't been put on thyroid meds yet (my T3 hormone fluctuates from being low to low normal.

I also have the exact genes you do.

Iíve had blood tests and a biopsy (done one year after going gluten-free, so pointless) done but have never been diagnosed with Celiac. I canít tell you though how much better I feel since eliminating gluten, dairy, and soy from my diet.

I donít have any further advice, but I can tell you that Iíve given up on trying getting a diagnosis. What it really comes down to is that I feel horrible eating gluten and like a whole new person when I donít. So, eating it is and will never be an option. I recommend you read Dangerous Grains if you need more information. Very good read.

Also, itís very important (as you know) to get your vitamin D back up. Two suggestions: check out sublingual vitamin D (to bypass your stomach all together). I get mine from dr.mercola.com. However, the best way and most accessible way to get it is the sun. Iím very fair skinned and both my brother and sister have had skin cancer already (in their later 20ís) so I take sunbathing seriously. This is all explained on dr.mercola site for free, but here is roughly what he recommends. Go out into the sun at the highest points of the day 11-1, I believe, and lay out until you turn the lightest pink (longer if you arenít Caucasian, I am so itís easy for me to tell). I usually lay out for 7-10 minutes each side on my sun deck. Believe me this isnít enough to get tanned Ė Iím still pitch white. :blink: However my vitamin D levels are perfect!

Good luck

Thank you for replying! I work outdoors so I am in the sun although I wear spf 55 at least...and I don't have time to tan outside lol. I got to school full time, intern and work so I will have to resort to taking vitamin D but a version other than the high doses of D2 in Rx form because that clearly doesn't work for me.

I will check out that site though for sure, thank you again!

Hi, there. Stop eating gluten and stop worrying about pieces of paper and diagnoses. :)

There is not enough known about celiac disease and the genes to make ANY conclusions. For starters, HLA-DQ is definitely not the whole story. There are people of every HLA-DQ type that get sick from gluten. Most but not all celiacs are DQ2 or DQ8.

There is also some evidence for non-celiac gluten sensitivities of various types so you can't necessarily get hung up over whether you are celiac. If gluten makes you sick, it makes you sick.

As for the Enterolab stuff the Enterolab tests are interesting, but Dr. Fine has not done enough research to substantiate what he sends out with his test results. Just about everything you have underlined is the stuff I find particularly overstated and poorly substantiated in those reports. :lol: His interpretations are just not consistent with the published, peer-reviewed scientific literature.


Thank you as well for replying. It's not that I'm hung up on a piece of paper or a diagnosis....it's about wanting answers on whats going on inside my body. BIG difference. And I thought maybe by asking these type of questions in a place where other people experience what I do that someone may be able to point me in the right direction is all. I'm very new at this idea of gluten making people sick and causing other diseases, etc... It's insane!! *sigh* But I will stop eating gluten and stop chasing after a diagnosis. All i'm really after is information and support from people who have been through what I'm going through now.

In Topic: New To The Site...looking For Advice/input

14 July 2010 - 06:47 AM

Hello and welcome to the board. You do sound like you could be one of us. Do go ahead and get the blood work done for celiac your regular GP or even a clinic can order a celiac panel for you. Do not go gluten free until all your testing is done. It can cause a false negative and there is a risk of a false negative even while eating gluten.
Do as mentioned check out other posts on the board and feel free to post any questions you may have. Celiac can be hard to diagnose and even if your tests are negative you should give the diet a shot after testing is finished.


I just now saw that you wrote on here :-). I just sent you a message! A lot has gone on since I originally wrote this post. I have had negative blood tests for Celiac, but it was positive for Hashimoto's Thyroiditis. Stool and gene panel from EnteroLab dx'd me as having active gluten sensitivity that can be more severe due to a double copy of a gluten sensitivity gene (HLA-DQB1 Molecular analysis, Allele 1 0602 and HLA-DQB1 Molecular analysis, Allele 2 0602....Serologic equivalent: HLA-DQ 1,1 (Subtype 6,6) ), and immunologic reaction to casein as well as gluten. I do not have either of the two classic "celiac" genes but after reading many of people's stories, those aren't needed to develop Celiac...

I'm still searching and learning, trying to see what is what and trying to figure out the gluten-free diet and see if I can find a dr to retest me for celiac and such. I'm not sure that I'm negative for real. I had the same voice in my head telling me something wasn't right when I set out years ago for my thyroid problem, and it took me 7 years to get my autoimmune dx for that! I didn't give up because I know my body and knew something wasn't right.

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