Intestinal biopsy?

[Guest guest]

In a message dated 12/6/2004 7:22:36 PM Pacific Standard Time, laumann@... writes:

Now the doctor wants her to get a biopsy (she’s still on a regular diet).She’s only 13 and I’d prefer not to put her through a biopsy.I’d rather just get her on the gluten free diet

You're already aware that testing/biopsy results aren't reliable once one has started a GF diet. The biopsy is (should be!) done under sedation. I've had two, and I awoke each time with no memory of the process, feeling rested and well. I had no after effects.

Following a GF diet for CD is a life-time, serious commitment. I think one must be fully convinced that it's completely necessary to follow it. Assuming she has CD, imagine her saying, when she reaches college age, that she thinks the CD diet isn't needed, that she plans to drop it because she never should have followed the diet? Or, if she doesn't have CD, what a pity it would be if she ate GF for a lifetime unnecessarily.

Also, having that official diagnosis can be a great benefit; it helps to convince hospitals, schools, relatives, etc. recognize the importance of the diet. I can't say what the insurance ramifications of diaganosis might be.

Harper

[Guest guest]

In a message dated 12/6/2004 7:37:39 PM Pacific Standard Time, stephenrider@... writes:

If she does in facthave celiac disease - then the sooner you know, the better.

And if she does NOT have CD -- then the sooner you know, the better.

Harper

[Guest guest]

Hi all,

My son, 16 years old, was recently diagnosed with celiac disease.

It’s a long story so I won’t go into details but he didn’t have the biopsy because he had already started on the GF diet.

His genetic blood test were positive for the genetic marker for the disease and the GF diet has proved to be a god send.

He feels so much better.

Our doctor recommended that all of us (in the nuclear family) be tested.

My daughter’s blood work just returned and she showed a deficiency in the

IgA antibodies so her initial screening was negative but she also has the genetic marker for celiac disease.

She also has elevated thyroid antibodies indicating hypothyroidism which is a related disease to celiac.

Now the doctor wants her to get a biopsy (she’s still on a regular diet).

She’s only 13 and I’d prefer not to put her through a biopsy.

I’d rather just get her on the gluten free diet and treat her thyroid issue.

Any advice out there?

Thanks,

[Guest guest]

Hi

I'd suggest that your daughter should have the biopsy. If she does in fact

have celiac disease - then the sooner you know, the better.

I had a biopsy and it really was not all that unpleasant, as nearly as

I can recall. They gave me something to " help me relax " , and I really

did relax.

I think the benefit your daughter might gain might well outweigh the

discomfort of an endoscopy.

Best Wishes

Steve

On Mon, 06 Dec 2004 19:20:35 -0800, A. Haumann

<laumann@...> wrote:

> Hi all,

> My son, 16 years old, was recently diagnosed with celiac disease.

> It's a long story so I won't go into details but he didn't have the biopsy

> because he had already started on the GF diet.

> His genetic blood test were positive for the genetic marker for the disease

> and the GF diet has proved to be a god send.

> He feels so much better.

> Our doctor recommended that all of us (in the nuclear family) be

> tested.

> My daughter's blood work just returned and she showed a deficiency in the

> IgA antibodies so her initial screening was negative but she also has the

> genetic marker for celiac disease.

> She also has elevated thyroid antibodies indicating hypothyroidism which is

> a related disease to celiac.

>

> Now the doctor wants her to get a biopsy (she's still on a regular diet).

> She's only 13 and I'd prefer not to put her through a biopsy.

> I'd rather just get her on the gluten free diet and treat her thyroid

> issue.

>

> Any advice out there?

> Thanks,

>

>

>

>

>

[Guest guest]

From what I’ve read about CD, she may

test negative for it right now, but since she has the genetic marker, she may

have it at some time in the future. That gene can get turned on at any point in

her life. The only way to avoid problems in the future if you have the genetic

marker is to eat a gluten free diet. I’ve seen several experts recommend

that anyone with the genetic marker eat a gluten free diet. It certainly can’t

hurt her to eat the gluten free diet, even if you do the biopsy to determine if

she has CD right now.

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

From: A. Haumann

[mailto:laumann@...]

Sent: Monday, December 06, 2004

7:21 PM

Subject: [ ]

Intestinal biopsy?

Hi all,

My son, 16 years old, was recently diagnosed with

celiac disease.

It’s a long story so I won’t go into details but he didn’t

have the biopsy because he had already started on the GF diet.

His genetic blood test were positive for the genetic marker for the disease and

the GF diet has proved to be a god send.

He feels so much better.

Our doctor recommended that all of us (in the nuclear

family) be tested.

My daughter’s blood work just returned and she showed a deficiency in the

IgA antibodies so her initial screening was negative but she also has the

genetic marker for celiac disease.

She also has elevated thyroid antibodies indicating hypothyroidism which is a

related disease to celiac.

Now the doctor wants her to get a biopsy (she’s still on a regular diet).

She’s only 13 and I’d prefer not to put her through a biopsy.

I’d rather just get her on the gluten free diet and treat her thyroid

issue.

Any advice out there?

Thanks,

[Guest guest]

Concerning the need for an absolute diagnosis, as I see it, their are two reasons that matter. One is that you need to convince yourself. To me, this is the most important one. My personal observation is that the people who are "mostly" gluten-free or that go on and off the diet trying to decide if they have CD are the very sickest ones. Because of the continued impact of repeated gluten exposures, they don't recover effectively when they "go off gluten for a few weeks to see if it helps." For someone who is really sick before starting the GF diet, it can take up to two years to completely recover. In fact, I have noticed a trend recently in people with severe symptoms; after they stop eating gluten they feel better for a few months, then they start to feel sick again, even though they are extremely careful about avoiding gluten. This period of regression can last for several months before they start feeling better once again (I am guessing that this may be some sort of detoxification process). Many people who are uncertain of their diagnosis don't stick with the diet long enough to make it through this period of renewed symptoms, and they assume that since they have started feeling sick again, they must have something other than CD. Confirming the diagnosis with biopsy would be very important for anyone who feels that they cannot commit to the GF diet for the rest of their life unless they know for certain that they have CD. I think this is even more important with a teenager. Some teens have problems following the diet, others do fine. It is the social implications that are hardest throughout the teen years. Kids starting the GF diet during their teens often have a hard time adjusting to feeling "different."

The second reason is to convince others. Some people need to convince schools, nursing homes, doctors, family, draft boards, etc. of the need for a GF diet. For some, this is not important, but for others it is very compelling or necessary. All of the docs who specialize in CD insist that a biopsy is necessary to consider yourself as having CD. This seems to be in part because they believe that no one in their right minds would want to be on a GF diet unless they had absolute proof (note: this is NOT my personal opinion!) I noted that the new celiac treatment center at Stanford is to be open only to biopsy-diagnosed celiacs. I think this is sad, since many people have the blood test and are told by their doctors to start the diet without having a biopsy.

As to insurance, a CD diagnosis "should" not affect the cost of health or life insurance, since the disease is completely treatable with diet compliance. I emphasize the "should" part because not all insurance companies understand this. If an insurance company charges more based on having CD, I think that it would be worth fighting. You would certainly have the support of celiac organizations and any medical professional who understands CD.

Regarding the issue of anesthesia during a biopsy, I think this is something that would depend on the needs and desires of the individual and the opinion of the doctors involved. My husband's biopsies were done without general anesthesia on an outpatient basis.

Please note that I am not a medical professional and these are my personal observations based on years of talking to other celiacs.

I know that this is a tough decision to make. I had to make it for my two kids. Neither one has been officially diagnosed, but my husband has. When my oldest son was little and I suspected him of CD (already knowing my husband had it), the doctors insisted he was too healthy and strong to have CD. My experiences continued to tell me otherwise, and I finally committed to the GF diet for him, even though the doctors insisted that the vomiting, diarrhea, and pain he was experiencing were because he was just colicky (one even suggested he was manipulative). After many difficult months, I finally became convinced that he had CD; since the doctors disagreed and he was so young, I never had any tests done; I decided that if he wanted to try gluten again when he was no longer living with me and I didn't have to deal with the results, he could do that (this was 12 years ago and I didn't know about the effects of gluten challenge then). His reactions to accidental gluten since then have convinced him, and I don't think he would touch gluten now if you paid him. I am really hoping that at some point they will be able to pin it down genetically and we won't have to suffer such dilemmas.

Pam Newbury Santa Cruz Celiac Support Group 831-423-6904 pknewbury@...

-----Original Message-----From: A. Haumann [mailto:laumann@...]Sent: Monday, December 06, 2004 7:21 PM Subject: [ ] Intestinal biopsy?Hi all, My son, 16 years old, was recently diagnosed with celiac disease.It's a long story so I won't go into details but he didn't have the biopsy because he had already started on the GF diet.His genetic blood test were positive for the genetic marker for the disease and the GF diet has proved to be a god send. He feels so much better. Our doctor recommended that all of us (in the nuclear family) be tested.My daughter's blood work just returned and she showed a deficiency in theIgA antibodies so her initial screening was negative but she also has the genetic marker for celiac disease.She also has elevated thyroid antibodies indicating hypothyroidism which is a related disease to celiac.Now the doctor wants her to get a biopsy (she's still on a regular diet).She's only 13 and I'd prefer not to put her through a biopsy.I'd rather just get her on the gluten free diet and treat her thyroid issue.Any advice out there?Thanks,

[Guest guest]

Hi

My daughter had the biopsy done in Canada when she was 5 1/2 and it was

fine. She didn't find it traumatic and it was a relief to know what was

causing her problem and know definitively.

Sabreena

& gt;From: Steve Rider & lt;stephenrider@... & gt;

& gt;Reply-

& gt;

& gt;Subject: Re: [ ] Intestinal biopsy?

& gt;Date: Mon, 6 Dec 2004 19:33:37 -0800

& gt;

& gt;Hi

& gt;

& gt;I'd suggest that your daughter should have the biopsy. If she does in

fact

& gt;have celiac disease - then the sooner you know, the better.

& gt;

& gt;I had a biopsy and it really was not all that unpleasant, as nearly as

& gt;I can recall. They gave me something to & quot;help me relax & quot;, and

I really

& gt;did relax.

& gt;

& gt;I think the benefit your daughter might gain might well outweigh the

& gt;discomfort of an endoscopy.

& gt;

& gt;Best Wishes

& gt;Steve

& gt;

& gt;

& gt;On Mon, 06 Dec 2004 19:20:35 -0800, A. Haumann

& gt; & lt;laumann@... & gt; wrote:

& gt; & gt; Hi all,

& gt; & gt; My son, 16 years old, was recently diagnosed with celiac

disease.

& gt; & gt; It's a long story so I won't go into details but he didn't have

the biopsy

& gt; & gt; because he had already started on the GF diet.

& gt; & gt; His genetic blood test were positive for the genetic marker for

the disease

& gt; & gt; and the GF diet has proved to be a god send.

& gt; & gt; He feels so much better.

& gt; & gt; Our doctor recommended that all of us (in the nuclear family)

be

& gt; & gt; tested.

& gt; & gt; My daughter's blood work just returned and she showed a

deficiency in the

& gt; & gt; IgA antibodies so her initial screening was negative but she also

has the

& gt; & gt; genetic marker for celiac disease.

& gt; & gt; She also has elevated thyroid antibodies indicating

hypothyroidism which is

& gt; & gt; a related disease to celiac.

& gt; & gt;

& gt; & gt; Now the doctor wants her to get a biopsy (she's still on a

regular diet).

& gt; & gt; She's only 13 and I'd prefer not to put her through a biopsy.

& gt; & gt; I'd rather just get her on the gluten free diet and treat her

thyroid

& gt; & gt; issue.

& gt; & gt;

& gt; & gt; Any advice out there?

& gt; & gt; Thanks,

& gt; & gt;

& gt; & gt;

& gt; & gt;

& gt; & gt;

& gt; & gt;