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em80

Member Since 30 Mar 2010
Offline Last Active Jan 22 2013 05:23 AM
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Posts I've Made

In Topic: Help?! For Post-Diagnosis: Mayo Vs Columbia Vs Chicago, Etc. - How Do Yo...

21 January 2013 - 12:46 PM

If I'm not mistaken, both soy and dairy can also cause atrophy. (Somebody correct me if I'm wrong.) If you are sure you aren't getting cross-contaminated, maybe these things are causing your problem? I would also go through the house with a fine-toothed comb, looking for possible sources of CC. Are you in a gluten-free household, or do other family members eat gluten? How about pets? Most pet foods contain gluten and it is easy to get glutened by dog kisses, or even petting your cat, then eating without washing your hands first. Cosmetics, shampoos, soaps, laundry detergent? All of these things MAY contain gluten.

Or you may be getting glutened at work. I actually got glutened once from someone either playing my guitar with gluteny hands, and then I forgot to wash them before eating, or it was from cookie crumbs left on my table. There are SO many possibilities for CC!


Wow - I've been pretty anal about checking for hidden sources, but the guitar is a new one! Yikes!!! Also hadn't looked into laundry detergent and will check on that now. Thank you!

In Topic: Help?! For Post-Diagnosis: Mayo Vs Columbia Vs Chicago, Etc. - How Do Yo...

21 January 2013 - 12:44 PM

I've heard all three doctors speak numerous times at conferences and workshops, and I believe that the specialist who may be able to help you the most is Dr. Murray, because he specializes in identifying other foods and factors that may be causing your distress. He believes in cross-reactivity (which, I know, a number of people on this forum do not believe in), but he has convinced me that this can be a real concern when a person is unable to heal properly after strictly following a gluten-free diet. Try contacting him first to see if he can help--he's very approachable and compassionate.


Thank you so much! That's something I've been looking into as well, and it definitely makes sense to me that it could be an issue. I've tried elimination diets with some success (I now avoid most soy), but they can be pretty overwhelming and I also felt like it made sense to take some time with just the regular gluten-free diet and see how well things healed on that without getting overly-complicated.

Are you able to eat out at all, or is the risk of CC just too severe? I'm afraid that's the reality I may have to accept! Either way, I'm so glad Dr. Murray was able to help you - thanks for your input!!!

In Topic: Help?! For Post-Diagnosis: Mayo Vs Columbia Vs Chicago, Etc. - How Do Yo...

21 January 2013 - 12:38 PM

I'll be blunt here.....perhaps you should stay home and be really careful about eating gluten free for 3 months. Then re- test to see if your blood tests for Celiac go down. If they are going down, you have found your culprit. Easier and cheaper than traveling to specialists.
If they don't go down, then you could try a Celiac center.


Thanks for your input - I'm definitely considering that option, but I want to think ahead about appointments because it seems like all of these places having 3-4 month waiting lists.

Also... How common do you think it is to have to literally completely eliminate eating out? I feel like I've been super, super careful about CC and I've never knowingly cheated... I've check my medications, supplements, cosmetics, etc. I know the only way to know for sure is to do whole foods at home and see if things improve, which is why I'm going that route now, but I still feel like I should've seen more improvement based on how careful I've already been. I suspect you're going to say I'm foolishly optimistic? Sigh! ;)