Brown Rice (was Refractory Celiac Disease]

[Guest guest]

Just a thought -- Brown rice is more complex than white rice and thus takes longer or is "harder" to digest than white rice - if someone is used to white rice, then switching to brown rice can take some time to get used to. I wonder also if because the intestine is damaged from celiac, it just takes until the intestines heal for brown rice not to cause digestion issues? I haven't personally had this problem, but brown rice has always been a larger part of my diet than any kind of wheat flour...

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

From: Pam Newbury <pknewbury@...>

Sent: Wed, Aug 26, 2009 11:39 pm

Subject: [ ] Refractory Celiac Disease

(My response to April follows.)

Just a thought, Lillyth, do you buy your rice from the bulk

bins? If so, cross contamination in the bins could explain why processed rice

products are=2

0OK but not what you make yourself. If you are buying packaged

rice, you might consider checking to see if contamination is possible where it

is packaged.

I haven’t seen any research about grains in general being

a problem, but I have heard of people being allergic to rice, so it could be a separate

allergy or just an autoimmune response to grains in general due to the body

having a hyper-sensitive autoimmune response to grain proteins as a result of

the celiac disease.

From:

[mailto: ] On

Behalf Of Lillyth Denaghy Keogh-Quillan

Sent: Tuesday, August 25, 2009 2:28 PM

Subject: RE: [ ] Refractory Celiac Disease

I wonder… If 20% of al

l celiacs have a “celiac

like response†to even gluten free oats – has there been any

research into the possibility of refractory sprue simply being an inability to

tolerate other grains as well?

certainly have met other celiacs who cannot tolerate ANY grain, and I myself

find that brown rice (whole, cooked brown rice) irritates my intestines.

I have no “messy†symptoms to speak of, but it *does* cause

me painful digestion. I can eat brown rice processed products with

impunity.

Does

anyone know if there is any research into this?

----- "ahpril8" <ahpril8hotmail> wrote:

>

Hi

all-

> I posted about hosting a san francisco dinner party group a few months ago

and then fell off the planet. (sorry!) My mom was sick w/ Non-Hodgkins lymphoma

and getting a bone marrow transplant (she doesn't have celiac, but lymphoma is

an auto-immune disease too) and then i also started not feeling well.

> I've been gluten free for a year and for 620months felt great, better than

i had in years, then started going downhill again. I dont feel as tired and

worn down as i did before diagnosed, but I want to feel as good as I did a few

months ago!

> 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 have heard many good things

about Dr. Aron; someone recently told me that when she went to see him he

answered all her questions willingly, but she did have to keep him on track and

be persistent about getting all the questions in.

> 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?

This

means your villi, the fingerlike projections that cover the surface of the

small intestine, are clearly flattened, in other words, signs of celiac disease

are obvious.

From

Wikipedia:

The classic pathology

changes of coeliac disease in the small20bowel are categorized by the

"Marsh classification":[31]

§ Marsh

stage 0: normal mucosa

§ Marsh

stage 1: increased number of intra-epithelial lymphocytes, usually exceeding 20 per 100 enterocytes

§ Marsh

stage 2: proliferation of the crypts of Lieberkuhn

§ Marsh

stage 3: partial or complete villous atrophy

§ Marsh

stage 4: hypoplasia of

the small bowel architecture

From

http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=1770677

:

stage 3 was split

further into 3a, 3b, and 3c, characterised by mild villous flattening, marked

villous flattening, and completely flat mucosa, respectively.

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

Refractory

means your gut is not healing from the damage done to it when you were eating

gluten. Before such a diagnosis is made, every effort should be made to make

sure you are not getting accidental gluten. Basically, the damage done to the

intestines is so severe that the body cannot repair it.

This

article has a good, detailed description of refractory sprue and a bit on how

to treat it.

http://www.celiac.com/articles/710/1/Refractory-Sprue-by--Melin-Rogovin-University-of-Chicago-Celiac-Disease-Program/Page1.html

> what is refractory mean?

> what do they do to fix=2

0it? Mostly steroids and immunosuppressants.

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

I

think this is an individual thing. If a second biopsy is done and shows normal

(or close to normal) villi, I think more biopsies would be unnecessary unless

further symptoms presented. If you continue to have symptoms, further biopsies

may be indicated. Some doctors will do blood tests instead. I doubt he meant

you to have endoscopy done every year forever, probably just until you are clearly

healed.

Just

a note about symptoms returning. I have noticed that many people will feel

better after starting a GF diet, then after a few months they start to experience

a renewal of symptoms and a much stronger sensitivity to gluten exposure. My

understanding of this is that when you remove gluten from the diet, the

antibodies don’t have anything to do, so they “rest upâ€, so

to speak; as long as gluten is completely excluded from the diet, the

antibodies will begin to fade; however, if gluten is ingested the antibodies

will remain active, and, rested and ready to go, they are on for the attack. Because

the antibodies are stronger, even the tiniest amount of gluten will activate

the immune response.&n

bsp; Most people I have seen this happen to will improve over

time (2-3 years). Things that can help are a very nutritious, easy-to-digest

diet, rest, and reduction of stress. For you, April, I note that you have been

under stress while dealing with your mother’s illness; it is possible

that this stress has impeded your healing and caused your renewed symptoms.

Determining

whether you have refractory sprue or not will take Dr. ’s expertise,

I am just giving you a few things to consider and discuss with him.

Let

me know if you need futher clarification.

Pam

Newbury