Intolerance? Allergy? Can someone help clear this up?

February 19, 2005

So, I'm feeling somewhat frustrated...and confused. :/

I was diagnosed with CD a little over two years ago and have been

gluten-free ever since--and feeling great!! I feel that I've really

adapted to the GF lifestyle. Ever since I was first diagnosed I've

tried really hard to keep up with the latest news, recipes, etc, and

I really try to let people know that CD is out there (without

seeming pushy or anything, of course). I'm also very clear about the

fact that this is an intolerance, not an allergy (even though my

roommate still does not seem to understand the difference after 2+

years, and my family sometimes doesn't get it). Anyhow...we always

read that it's a gluten intolerance vs an allergy. So, now the

confusion...

Ever since I was diagnosed, I've been trying to get my family to get

tested. But they are all stubborn, despite the fact that my mother,

my brother and one of my little sisters all seem to have some sort

of a GI disorder. Now, two years later, my little sister is finally

getting tested. Her blood tests came back positive, so her doctor

sent her down to University of MD, where she just had her first appt

with one of the TOP CD doctors. And he had some interesting things

to say...

He told my parents that very few people actually have CD. In fact,

he told my parents that he could almost guarantee them that I do not

actually have the disease (after my parents told him all of my

extreme symptoms I had prior to going GF and the symptoms I have if

I accidently ingest gluten). He says that what all of us claiming to

have CD really have is an allergy to gluten. (He said that the test

to determine whether or not one really has CD or not is outrageously

expensive) He told my parents that if I really did have CD, my body

would not show any symptoms/I would not react to accidently eating

gluten. Rather, it would be a slow process and, eventually, symptoms

would show up and it would be apparent that I had ingested gluten.

The doctor told my parents that those of us with these types of

symptoms actually are allergic to gluten (that's why we have the

symptoms if we accidently eat it) and are not truly intolerant to

it. The doctor insists that with this " gluten allergy, " we could, in

fact, out-grown our sensitivity and be able to eat gluten once

again. The thing is--who really wants to try this intentionally?

(The doctor himself admitted this). So, my parents obviously told

him everything that I had told them from my " research " after being

diagnosed (how it's an intolerance vs an allergy, my symptoms, etc)

and the doctor now wants to meet with ME and talk with me. And I'm

just really confused about all the stuff he is saying.

To go along with that...

The daughter of a close family friend was diagnosed as

having " gluten sensitivity " and has been GF for the past 6 years.

She just recently re-introduced gluten into her diet and is

completely fine! The doctor told her that her sensitivity was caused

by stress, and she can now eat gluten again. My parents feel that

this case supports the " gluten allergy " belief/thought.

I'm just really confused because everything this TOP doctor is

saying seems to contradict everything I thought I knew about CD. I'm

really perfectly fine being GF because I know that I'm healthy now!

But this just throws me for a loop! Can someone help? Has anyone

else heard this?

I'd appreciate any comments on this!

Sincerely,

Gaines

February 20, 2005

ita-

My sister actually saw Swati Gadewar (a female dr). During their

visit, Karoly Horvath (a male doctor) came in to speak with my

sister and parents and told them everything I shared in my email.

Gadewar was in agreement with Horvath, who is the doctor who said it

isn't even worth it to get the genetic test done to see whether or

not you have CD b/c, as he says, he would bet money that you don't

( " you " meaning me, you, anyone with CD).Dr. Horvath is also the

doctor who said he would like to see me and he actually recommended

that I see Dr. Fasano, too. He seemed to give the impression that

the whole group of doctors-Fasano included- " preach the same thing. "

I appreciated your response, ita--exactly what I was thinking!

When my parents told me about their little excursion down to Univ.

of MD, I immediately went into a frenzy, going off about how they

saw one of those " bad " CD doctors who don't really understand, or

even believe in, CD! Aaagghhh! I'm so confused!

-

> Who was this " Top " doctor at the University of MD? Dr. Alessio

Fasano is

> the TOP doctor at University of MD and he would NEVER say those

things.

>

> ita

February 20, 2005

First, I am not a doctor, but this is the way I understand it. (I am a

biopsy and serologically diagnosed celiac.)

Celiac disease and gluten allergies are discovered by different tests.

Allergies are generally tested via " IgE " testing - classic allergy testing.

There are some who believe that IgG testing may further give information to

an " intolerance " that causes symptoms, but NO ongoing damage. Celiac

disease is investigated through anti-tissue transglutaminase IgA testing

(and anit-endomysial testing), and a small bowel biopsy showing flattened

villi and an increase in intraepethelial lymphocytes, and sometime crypt

hypoplasia. While allergies can cause GI symptoms, they are not widely

known to cause the specific intestinal damage that is associated with CD. I

have 1 daughter who is not celiac, but is gluten intolerant. (Her blood

work for celiac came back negative, and her biopsy was negative - she is not

IgA deficient.) She may grow out of this some day, but for now she reacts

quite negatively to any amount of gluten. I would hesitate to allow her to

try it again for some time. My other daughter and I are celiac.

You can get good informationm from the University of Chicago Celiac Disease

Program. I am sure they would be happy to provide you with some excellent

sources of good, reliable information that is up to date. You can do your