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Focal Intestinal Lymphangiectasia

D

DanceMom

I mentioned in my other thread that A's biopsy report stated "small intestinal mucosa with focal lymphangiectasia". I seriously cannot even pronounce that, lol. I wanted to start a new thread with the hope that someone somewhere who has experience with this will chime in. CarolinAlaska I also thought of your daughter when reading about this. A's follow-up appointment is next week and I want to be prepared with arguments (if this gets blown off as a variant of normal....our kind of luck) and questions (if this becomes a new diagnosis).

In my reading I keep finding that a diet low in fat but high in protein should be followed. TPN and EEN is often used, especially at diagnosis. Are the formulas you use low in long-chain-fatty-acids? I tried to find a list of acceptable/exempt foods but was unable to. At the very least I'd like to try this diet to see how it works for her.

I'm at one of those points where I can't stop reading and searching for info. This just sounds so much like A that it is incredible. And the saying, "A worried mother does better research than the FBI" keeps popping into my head and making me chuckle because it is so true.
 
Farmwife

Farmwife

I've never heard of this dx but what I read is it "could" be associated with ibd.
So does this damage like an ibd disease?
Sorry, learning something new everyday.
 
D

DanceMom

Farmwife said:
I've never heard of this dx but what I read is it "could" be associated with ibd.
So does this damage like an ibd disease?
Sorry, learning something new everyday.
Click to expand...
It can be primary or secondary. Seems like the primary type is extremely rare (which I've always thought A was, lol).
 
CarolinAlaska

CarolinAlaska

Holding It Together
Dancemom, I think we're still a few steps behind you. I got the same feelings reading about hypermobility syndrome for my daughters. I haven't read much about what you're researching, but will probably look more into it if Jae ends up having immunodeficiency. I did finally get appt made for that workup anyway in March.
 
D

DanceMom

The main features seem to be low lymphocytes, low IgG, low albumin/globulin, diarrhea, growth retardation, and swelling. A only has issues with her eyelids swelling, but I thought I remembered your daughter having leg swelling (which seems to be more textbook). So many of these things overlap though which makes diagnosis so difficult. This one just seems to fit for A and I'd love for our search to finally come to an end.
 
CarolinAlaska

CarolinAlaska

Holding It Together
Interesting. I'll have to keep this one in mind. I think that low albumin and swelling are cause and effect. I wish I knew what Jae's albumin was last summer. I'll have to look it up.
 
J

juma

There's a website called Little Leakers with intestinal lymphangiectasia information and a helpful FB group as well- feel free to join the group with any questions you have! Our child has the condition. It's very rare, difficult to diagnose, and every case is so different. MCT fats are the best tolerated. Diet is very important. A higher protein diet to manage the protein loss and medium chain triglycerides as fat sources. Often, immune deficiencies occur as well as the antibodies leak with the protein. Immune replacement therapy is often used for these cases. Some swelling is normal (the more severe the albumin loss, the more severe the swelling).
 
D

DanceMom

I found the Little Leakers site and found it very helpful. What's the name of the FB page?

I'd love to hear more about your child's case and diagnosis if you're willing to share! And any diet tips would be appreciated too.
 
J

juma

It's just called "intestinal lymphangiectasia". I'd post a link but can't post links yet. The second word is pronounced lymph-anj-ee-ec-tasia. Kind of a mouthful the first few months but it gets easier to say. The first little hurdle. :)

I'd love to PM information back and forth if/once you do join!

Low albumin, low IgG, and abnormal immune panels are often seen in labs.
 
D

DanceMom

Thank you! I sent a request to join. We do not have a diagnosis other than Hypogammaglobulinemia yet, but none of the PIDs seem to fit. Just trying to find answers for my girl.
 
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