Re: HELP! Repeat endoscopy results

[Guest guest]

Hi Jessika,

I didn't have a repeat endoscopy, but my blood antibody tests took a long time

(several years) to revert to normal. My GI (Dr. Mahadevan at UCSF) said that

that was normal and that it can take a long time for our bodies to heal

completely.

Also, you might want to double check your diet to make sure you're not

accidentally ingesting gluten (using wooden spoons or a collander previously

used for glutinous pasta; using a toaster that has toasted glutinous bread,

etc.).

--lp

________________________________________

From: [ ] On Behalf Of

tunibell [jessika.welcome@...]

Sent: Wednesday, January 20, 2010 3:16 PM

Subject: [ ] HELP! Repeat endoscopy results

I just got my repeat endoscopy results back. After 8 months on the diet, my

biopsy revealed " partial healing. " My doctor seems to think the celiac should

have totally reversed at this point, and now wants to send me for a CAT Scan to

rule out lymphoma. I am, naturally, freaking out. Anyone go through something

similar???

[Guest guest]

8 months is a relative time block. I was very damaged in Fall

of ’04 when I was diagnosed. 2 years later in Fall ’06 I had

an upper endoscopy that showed I was fine (however I wasn’t feeling

fine). My doc gave me a capsule endoscopy and it showed “spotty”

areas in the lower part of my small intestine where I hadn’t healed.

Even after 2 years of “THINKING” I was living a gluten free

lifestyle I wasn’t really “LIVING” a GF lifestyle. I had

not really learned about cross contamination both in the household and eating

out. I hadn’t learned that I could be intolerant of other food

groups while I was “damaged” that would irritate my digestive track

not letting me heal. I didn’t know about cleaning products or

beauty products etc. All in all it took me 3 years to really know how to

label read, figure out what I needed to eliminate out of my diet besides gluten

and brush up on CC (cross contamination.)

I don’t think you should be freaking out. It’s

bold of your doctor to say you should have totally been reversed at this

point. There’s not a set timeline that says if you cut out gluten

you will be healed. Some people actually never heal (as in the GF diet

does not fix the problem) that is a small percentage of people, but it’s

still a possibility. Are you confident enough to say you’re

100% gluten free and have not ingested hidden gluten? We’re

you severely damaged when you were first diagnosed? Have other food

groups bothered you?

From:

[mailto: ] On Behalf Of tunibell

Sent: Wednesday, January 20, 2010 3:16 PM

Subject: [ ] HELP! Repeat endoscopy results

I just got my repeat endoscopy results back.

After 8 months on the diet, my biopsy revealed " partial healing. " My

doctor seems to think the celiac should have totally reversed at this point,

and now wants to send me for a CAT Scan to rule out lymphoma. I am, naturally,

freaking out. Anyone go through something similar???

[Guest guest]

As others have said,

1) I hear that some people never heal completely, even with a completely GF diet. For some people, that's due to age and general health or another illness that prevents healing. Others have a variant called refractory sprue.

2) Tiny amounts of gluten may be creeping in from sources you haven't thought of. Medications, hair and skin products, shared toasters, crumbs in the flatware trays, non-GF (old, contaminated) teflon and iron pans, shared cutting boards -- many possibilities for gluten intake exist.

Here is an excerpt from http://www.celiac.com/articles/741/1/Causes-of-Non-responsive-Celiac-Disease---More-than-50-Continue-to-Ingest-Gluten-Unknowingly/Page1.html

"According to researchers at the Mayo Clinic in Rochester Minnesota, the main causes of non-responsive celiac disease are:

1) gluten contamination is the leading reason for non-responsive celiac disease;

2) of non-responsive celiac disease cases, 18% are due to refractory Sprue; and

3) alternative diseases or those coexistent with celiac disease and gluten contamination should be ruled out before a diagnosis of Refractory Sprue is made."

Another article at celiac.com listed bacterial overgrowth as a possibility.

You might want to go to celiac.com and search for "non-responsive".

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

From: Palmer, <palmer@...>

< >

Sent: Wed, Jan 20, 2010 3:23 pm

Subject: RE: [ ] HELP! Repeat endoscopy results

Hi Jessika,

I didn't have a repeat endoscopy, but my blood antibody tests took a long time (several years) to revert to normal. My GI (Dr. Mahadevan at UCSF) said that that was normal and that it can take a long time for our bodies to heal completely.

Also, you might want to double check your diet to make sure you're not accidentally ingesting gluten (using wooden spoons or a collander previously used for glutinous pasta; using a toaster that has toasted glutinous bread, etc.).

--lp

________________________________________

From: [ ] On Behalf Of tunibell [jessika.welcome@...]

Sent: Wednesday, January 20, 2010 3:16 PM

Subject: [ ] HELP! Repeat endoscopy results

I just got my repeat endoscopy results back. After 8 months on the diet, my biopsy revealed "partial healing." My doctor seems to think the celiac should have totally reversed at this point, and now wants to send me for a CAT Scan to rule out lymphoma. I am, naturally, freaking out. Anyone go through something similar???

------------------------------------

[Guest guest]

Hi Jessika,It took FOUR YEARS for my very high antibodies to go down to normal!Take care,CarynOn Jan 20, 2010, at 5:12 PM, Harper wrote:As others have said, 1) I hear that some people never heal completely, even with a completely GF diet. For some people, that's due to age and general health or another illness that prevents healing. Others have a variant called refractory sprue. 2) Tiny amounts of gluten may be creeping in from sources you haven't thought of. Medications, hair and skin products, shared toasters, crumbs in the flatware trays, non-GF (old, contaminated) teflon and iron pans, shared cutting boards -- many possibilities for gluten intake exist.Here is an excerpt from http://www.celiac.com/articles/741/1/Causes-of-Non-responsive-Celiac-Disease---More-than-50-Continue-to-Ingest-Gluten-Unknowingly/Page1.html"According to researchers at the Mayo Clinic in Rochester Minnesota, the main causes of non-responsive celiac disease are: 1) gluten contamination is the leading reason for non-responsive celiac disease; 2) of non-responsive celiac disease cases, 18% are due to refractory Sprue; and 3) alternative diseases or those coexistent with celiac disease and gluten contamination should be ruled out before a diagnosis of Refractory Sprue is made." Another article at celiac.com listed bacterial overgrowth as a possibility.You might want to go to celiac.com and search for "non-responsive".-----Original Message-----From: Palmer, <palmersmccd (DOT) edu> < >Sent: Wed, Jan 20, 2010 3:23 pmSubject: RE: [ ] HELP! Repeat endoscopy resultsHi Jessika,

I didn't have a repeat endoscopy, but my blood antibody tests took a long time (several years) to revert to normal. My GI (Dr. Mahadevan at UCSF) said that that was normal and that it can take a long time for our bodies to heal completely.

Also, you might want to double check your diet to make sure you're not accidentally ingesting gluten (using wooden spoons or a collander previously used for glutinous pasta; using a toaster that has toasted glutinous bread, etc.).

--lp

________________________________________

From: [ ] On Behalf Of tunibell [jessika.welcomegmail]

Sent: Wednesday, January 20, 2010 3:16 PM

Subject: [ ] HELP! Repeat endoscopy results

I just got my repeat endoscopy results back. After 8 months on the diet, my biopsy revealed "partial healing." My doctor seems to think the celiac should have totally reversed at this point, and now wants to send me for a CAT Scan to rule out lymphoma. I am, naturally, freaking out. Anyone go through something similar???

------------------------------------

[Guest guest]

Ditto eveyone else. Please don't freak out. Get another opinion. Get a copy of your test results (for your files anyway) and ask another doctor for an opinion.

My daughter's gastroenterologist, Dr. Aron (whom many of you know or have heard of) says healing can take YEARS....

Please don't sign up for an unnecessary CAT scan...not just yet anyway. Why not be bold and ask your doctor to consult with some of his colleagues and get back to you? Is your bloodwork abnormal (ie. white cell count)?

Healing may take a very long time. Be patient. Don't be afraid. Get another opinion.Good luck.Melis B----- "tunibell" <jessika.welcome@...> wrote: >

> > > I just got my repeat endoscopy results back. After 8 months on the diet, my biopsy revealed "partial healing." My doctor seems to think the celiac should have totally reversed at this point, and now wants to send me for a CAT Scan to rule out lymphoma. I am, naturally, freaking out. Anyone go through something similar???>

>

[Guest guest]

Yes, you can always get a CAT scan after you've determined whether it's really necessary. Rule out other possibilities first -- unless your doctor has a strong suspicion that there's a reason to get one right away. Perhaps there is, perhaps not. Ask lots of questions. Get answers. It's you're body.

H.

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

From: melbatavia@...

Sent: Wed, Jan 20, 2010 7:33 pm

Subject: Re: [ ] HELP! Repeat endoscopy results

Ditto eveyone else. Please don't freak out. Get another opinion. Get a copy of your test results (for your files anyway) and ask another doctor for an opinion.

My daughter's gastroenterologist, Dr. Aron (whom many of you know or have heard of) says healing can take YEARS....

Please don't sign up for an unnecessary CAT scan...not just yet anyway. Why not be bold and ask your doctor to consult with some of his colleagues and get back to you? Is your bloodwork abnormal (ie. white cell count)?

Healing may take a very long time. Be patient. Don't be afraid. Get another opinion.

Good luck.

Melis B

----- "tunibell" <jessika.welcomegmail> wrote:

>

> > > I just got my repeat endoscopy results back. After 8 months on the diet, my biopsy revealed "partial healing." My doctor seems to think the celiac should have totally reversed at this point, and now wants to send me for a CAT Scan to rule out lymphoma. I am, naturally, freaking out. Anyone go through something similar???

>

>

[Guest guest]

Eight months is a really short time for your body to heal. Is your doctor a

general physician, GI specialist, etc...? I have found that not all GI

specialists really understand celiac disease. My doctor told me that it would

take at least 2 years for my body to start to heal properly. And, he told me I

should not expect it to be completely healed for a while after that.

Now that your doctor has introduced the scary idea of lymphoma, you may want to

do the CAT Scan. You will then be able to rule it out so you do not have to

worry about it. That way it will not be in the back of your mind anymore,

wondering. Once you have the result, you will know for certain that you need to

make immediate changes to your gf lifestyle. I really hope things going well

for you!

>

> I just got my repeat endoscopy results back. After 8 months on the diet, my

biopsy revealed " partial healing. " My doctor seems to think the celiac should

have totally reversed at this point, and now wants to send me for a CAT Scan to

rule out lymphoma. I am, naturally, freaking out. Anyone go through something

similar???

>

[Guest guest]

Hi Jessika,

The latest issue of Gluten Free Living (4/2009) quotes Green, MD, who is

probably the foremost expert on celiac disease. He says, in part, " A follow-up

biopsy should not be performed too early after diagnosis. We would perform

biopsies after 12 months have passed, frequently at about 2 years. The

antibodies have to be normal. There is no point in doing it too early if people

are doing well clinically and the antibodies are still elevated. . . . It has

been reported that the small intestine eventually returns to normal but in my

experience, it rarely does in patients who are diagnosed as adults. " (pages

49-50)

I think you should share this information with your doctor, and take heart.

--lp

palmer@...

________________________________________

From: Palmer,

Sent: Wednesday, January 20, 2010 3:23 PM

Subject: RE: [ ] HELP! Repeat endoscopy results

Hi Jessika,

I didn't have a repeat endoscopy, but my blood antibody tests took a long time

(several years) to revert to normal. My GI (Dr. Mahadevan at UCSF) said that

that was normal and that it can take a long time for our bodies to heal

completely.

Also, you might want to double check your diet to make sure you're not

accidentally ingesting gluten (using wooden spoons or a collander previously

used for glutinous pasta; using a toaster that has toasted glutinous bread,

etc.).

--lp

________________________________________

From: [ ] On Behalf Of

tunibell [jessika.welcome@...]

Sent: Wednesday, January 20, 2010 3:16 PM

Subject: [ ] HELP! Repeat endoscopy results

I just got my repeat endoscopy results back. After 8 months on the diet, my

biopsy revealed " partial healing. " My doctor seems to think the celiac should

have totally reversed at this point, and now wants to send me for a CAT Scan to

rule out lymphoma. I am, naturally, freaking out. Anyone go through something

similar???

[Guest guest]

>

> Hi Jessika,

>

> The latest issue of Gluten Free Living (4/2009) quotes Green, MD, who is

probably the foremost expert on celiac disease.

green was my late sister's celiac doctor.

Lori