intestinal lymphangiectasia and crohn's

[Guest guest]

Has anyone been diagnosed with this ? I have recently been

diagnosed with this per a recent EGD and biopsies and also with

crohn's. I am concerned that Braden also has crohn's as well as the

lymphangiestasia because both are genetic (or at least the

predisposition for both is genetic..)

Crohn's is not why Braden has short gut he has it as a result of NEC.

The GI symptoms that Braden has been having have been attributed to short

gut..but I think there is more going on

he has

edema

low iron

hypogammaglobinemia (gets monthly IVIG)

hypoprotinemia

white nodules/xanthomas per endoscopy

nodular mucosa

lymphocytopenia

I don't know if theses are typically seen in short gut kids or not ???

Lori

lucky mom blessed with wonderfully wild triplets

[Guest guest]

Lori,

I read about this but still don't understand it - can you explain it

more clearly? Is it a leak of sorts?

[Guest guest]

Dear Lori;

The symptoms you describe for Braden do fit with intestinal

lymphangiectasia:

http://www.emedicine.com/MED/topic1178.htm

The symptoms in common with the list you provide are

- hypoproteinemia

- lymphocytopenia

- loss of certain components such as, iron and certain trace metals

- peripheral edema

- hypogammaglobinemia

- nodular protrusions in the small bowel

- white villi and/or spots (dilated lacteals), white nodules, and

submucosal elevations are observed during endoscpy

- xanthomatous plaques are often visualized during endoscopy

The article does state that this can be secondary to other causes;

they have a long list that includes Crohn's disease, but it does not

include short gut.

I hope that this information is of some help in figuring out what

might be going on with Braden's GI symptoms. Please write if you have

other questions or concerns, and I'll try to be of assistance.

Best regards,

Dave

(father of (22); PSC O7/03; UC 08/03)

[Guest guest]

>

> Lori,

> I read about this but still don't understand it - can you explain it

> more clearly? Is it a leak of sorts?

>

>

-

I don't know if I am the one to explain it more clearly- not my strong

point but this emedicine article is good. Braden has

hypogammoglobinemia (low IgG) that is not typical with autoimmune

disorders like PSC has been traditionally labeled. He has really done

much better with his monthly IVIG infusions. My theory on immune

mediated diseases is that with a compromised immune system there is a

trigger that causes it to go on overdrive and causes autoimmune

problems. Since the immune system is largely regulated by the gut with

a compromised gut/absorption you get a compromised immune system. I

think if you go to the root of the problem- the compromised gut then

maybe you can help the cascade of problems from getting worse KWIM ?

>

http://www.emedicine.com/MED/topic1178.htm

[Guest guest]

Thanks -

I am always in search of info and am intrigued about the genetic links

with certain problems. I am hopeful that finally getting myself

figured out will help Braden.

Lori

lucky mom blessed with wonderfully wild triplets

>

> Dear Lori;

>

> The symptoms you describe for Braden do fit with intestinal

> lymphangiectasia:

>

> http://www.emedicine.com/MED/topic1178.htm

>

> The symptoms in common with the list you provide are

>

> - hypoproteinemia

> - lymphocytopenia

> - loss of certain components such as, iron and certain trace metals

> - peripheral edema

> - hypogammaglobinemia

> - nodular protrusions in the small bowel

> - white villi and/or spots (dilated lacteals), white nodules, and

> submucosal elevations are observed during endoscpy

> - xanthomatous plaques are often visualized during endoscopy

>

> The article does state that this can be secondary to other causes;

> they have a long list that includes Crohn's disease, but it does not

> include short gut.

>

> I hope that this information is of some help in figuring out what

> might be going on with Braden's GI symptoms. Please write if you have

> other questions or concerns, and I'll try to be of assistance.

>

> Best regards,

>

> Dave

> (father of (22); PSC O7/03; UC 08/03)

>