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seattlejoy

Member Since 30 Apr 2012
Offline Last Active Jan 31 2013 08:26 PM
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Posts I've Made

In Topic: Why Has My Gliadin Igg Raised After 7 Months Gluten-Free?

31 January 2013 - 08:28 PM

That is interesting. Since both IgA tests went down substantially -- it is puzzling.

Did they run a tTG IgG? Any change there?

Since it is a surpising number - I think I'd have it re-run to make sure it was an accurate result.

Looks like you are doing well on removing gluten, otherwise the other numbers would not have fallen so.

How about symptom improvement?

Are you feeling better?



Thanks for asking! I don't see a tTG IgG. I feel better than I did before diagnosis but I definitely don't feel great. I have had all my food sensitivities and allergies ran (IgG and IgE). I am seeing a specialist, Dr. Wangen next month.

In Topic: Real Celiac Specialist In Seattle?

07 January 2013 - 12:56 PM

Hi, Does anyone know of a 'real' celiac specialist in Seattle? I know about Driscoll... and he's not what I'm looking for. He told me not to worry about my Celiac because I had a biopsy after a month on GFD last year and it was clear. I had records in my hand from Columbia 2004-2006 (from when I lived in NYC) which stated a Celiac diagnosis (although 'mild' compared to a lot of people here). I used to see Suzanne Lewis at Peter Greene's office, but now that I'm in Seattle, finding someone with that level of expertise is tough. There are many GI specialists who list Celiac in their areas of expertise, but they really aren't. My biopsy was done at Polyclinic and then I saw Driscoll as a backup. The doctors in both of those places told me I didn't have to be eating gluten since it had only been a month on GFD. I need someone who is well-versed on the neuro symptoms because my gut symptoms had faded over the years and all I had was neuro (BAD) when I saw these docs. They really didn't know anything about it.

My primary is a great ND and she seems to know a lot, but I much prefer my experience at the Celiac Disease Center at Columbia. <spoiled>

Any recommendations would be great. Or maybe some great doc can move to Seattle and start a research center! Posted Image

There is actually this guy here, Dr. Wangen, http://ibstreatmentcenter.com/ - but he doesn't take insurance and I'm hoping to find an MD to compliment my ND.

Thanks!



Did you ever make any progress on this? I am still searchin for someone that is better educated to help me navigate getting my body back on track. Would you mind sharing names of any MD or ND that you may have come across?

Of course, anyone else that might be able to share their pracitioners would be appreciated as well!

In Topic: Real Celiac Specialist In Seattle?

07 January 2013 - 12:54 PM

I missed this post earlier this year. Thanks for that advice. I will try that.
Most of what she gave me is liquid or powder- liquid vitamin D, calcium and fish oil, powdered probiotics, powdered L-glutamine, vitamin b injections....

But I do have a few other capsules for iron and such.

In Topic: Exclusive Breastfeeding For 12 Months?

29 July 2012 - 10:08 PM

I believe they suggest holding off on gluten now till 12 months minimum. Dr. Fassano is currently researching the time it is best to introduce it but in the small study, the later the better.



Where can I get information about the small study? I have a 10 month old and am terrified to ignite this disease in her so I haven't introduced gluten. I don't know what to do.

In Topic: Real Celiac Specialist In Seattle?

29 July 2012 - 09:07 PM

Wouldn't it be AMAZING to have a research center started here? I am in the same boat as you. I had my biopsy at Eastside Gastro and wasn't impressed with what followed my diagnosis- 3 sheets of paper. One with a list of gluten foods, one page printed from the internet with Celiac Disease Foundation's website (I think), and the last was a small list of gluten-free food. Basically- "Good luck with your Celiac! See you in 6 mos to retest your levels!"

No care whatsoever for repairing my gut, supplements, testing for other conditions and deficiencies, etc. Thankfully I have an ND who tested everything I asked for and helped get me on thyroid and a bunch of vitamins and supps. Now I need someone who will take care of me and tell me what the next step is instead of me doing hours of research and taking it to my ND. I know there are still things that aren't right because I still feel horrible.