Re: Oats?

[Guest guest]

Re GF oats: I do just fine with Bob's Red Mill GF Oats, either steel-cut or rolled.

However, studies in Sweden? showed that some tiny percentage of people with CD react to any kind of oats. The testing used oats raised for the study, avoiding any contamination. Genetic thing.

H.

-----Original Message-----

From: cunninghamlynn68 <cunningh@...>

Sent: Sat, Aug 29, 2009 11:55 am

Subject: [ ] Re: Refractory Celiac Disease

According to Dr. Aron's own website, MIII damage can take up to 2 years to heal. Maybe your healing has just been disrupted by the stressful situation with your mom? And/or something glutenous has slipped into your diet.

I now notice that when I get accidentally glutened (I've been g-f for a year), I am *really* sick for a solid week (it feels like stomach flu, PMS, and a hangover all rolled into 1 -- joy). I have found that I just can't eat out at all anymore & I keep the processed foods to a minimum & only if they clearly state gluten-free. So, maybe there is something (like the oatmeal?) that you are now eating regularly that is keeping you in a glutened state.

Hope you feel better soon! Keep us posted!

Lynn

> I started seeing a new doctor (Dr. Aron) and he want to do another endoscopy (first one was 13 months ago, showed Level IIIB subtotal atrophy on the Marsh scale ?) to see if I'm healing or if i have refractory celiac. He says I should have and endoscopy every year.

> I didn't have much time with the doctor to ask all my questions so i thought i would pose them to you all before i started google-ing

>

> What is Level IIIB subtotal atrophy on the Marsh scale?

> I know refractory celiac means i'm not feeling better but why?

> what is refractory mean?

> what do they do to fix it?

> is it 'standard operating procedure' to have an endoscopy every year?

>

> ok thanks!

> /april

>

> p.s. I still hope to start a san francisco dinner pary group when i'm feeling better...

>