• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Dilated lymph vessels in gut

Dmitri

Senior Member
Messages
219
Location
NYC
When I had a upper GI endoscopy done earlier this year, there were some abnormal findings, but none of which could explain the full extent of my symptoms. The findings were gastritis, duodenitis, duodenal ulcer and "dilated lacteals". The latter discovery led to an immediate suspicion of celiac, which was later dismissed after the biopsies were shown to be negative for it, and it was later forgotten about. I also tried gluten free diets in the past to no benefit.

There isn't much published anywhere about it, and it appears to be better documented in dogs https://en.wikipedia.org/wiki/Lymphangiectasia

Is anyone familiar with this condition and what other possibilities it suggests besides celiac? I only found one other article, where it's reported in a case of lupus https://www.ncbi.nlm.nih.gov/pubmed/2220736
 

Research 1st

Severe ME, POTS & MCAS.
Messages
768
Hello. This might be useful, or might not be in relation to dilated lymph glands in stomach, which is apparently said to be a condition called Lymphangiectasia. E.g. something like....

Primary intestinal lymphangiectasia (Waldmann's disease)
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2288596/

Protein Losing Enteropathy (PLE)
http://emedicine.medscape.com/article/182565-overview

If so, and it's 'unexplained' in your case, I'd go for chronic infection as the cause, infection mediated chronic inflammation. Perhaps bacterial translocation is involved. Look up Dysbiosis/Lyme disease/Mast Cell Disorder/HIV so many people all have gut problems under the confusing label of the dead end road of 'CFS'.

If you can unravel certain elements of why you are sick, such as your finding, you might be able to fix zones of organic dysfunction, try and repair this (such as by trying to heal your gut) and your core disease may improve.

Hope that helps, and sorry if i'm incorrect, just had a guess at what might be wrong.
 

Research 1st

Severe ME, POTS & MCAS.
Messages
768
Was thinking of tests for you, and this is all I can come up with for now, as I have limited knowledge.

Tests that may help to build a picture to demonstrate leaky gut/dysbiosis in an ME CFS Chronic Lyme type presentation are:

Blood tests:
D-Lactate

Stool tests (inflammatory markers):
Lactoferrin:
Calprotectin
Beta Defensin
Eosinophil Protein X (EPX)
Zonulin
Secreatory IgA, aka sIGA - this can be abnormal in stool, and normal in saliva. Blood IgA can be normal too.

Non stomach specific wider autoimmunity:

If possible do a full blood investigation to rule out SLE, CTD, Sjrogren's Antibodies. If these disease panels are too expensive to fund all at once, in a flair up do an ANA (Antinuclear Antibodies) with pattern distribution first, double stranded DNA (DS-DNA) and ENA and take it from there.

Cheers.
 

Dmitri

Senior Member
Messages
219
Location
NYC
Was thinking of tests for you, and this is all I can come up with for now, as I have limited knowledge.

Tests that may help to build a picture to demonstrate leaky gut/dysbiosis in an ME CFS Chronic Lyme type presentation are:

Blood tests:
D-Lactate

Stool tests (inflammatory markers):
Lactoferrin:
Calprotectin
Beta Defensin
Eosinophil Protein X (EPX)
Zonulin
Secreatory IgA, aka sIGA - this can be abnormal in stool, and normal in saliva. Blood IgA can be normal too.

Non stomach specific wider autoimmunity:

If possible do a full blood investigation to rule out SLE, CTD, Sjrogren's Antibodies. If these disease panels are too expensive to fund all at once, in a flair up do an ANA (Antinuclear Antibodies) with pattern distribution first, double stranded DNA (DS-DNA) and ENA and take it from there.

Cheers.

The only stool tests I received were for parasites, unfortunately. Thanks for listing the other potentially useful stool tests, I had no direction whatsoever on that before and never had a more extensive evaluation. I also have blood in stool almost all the time, sometimes with bowel movements entirely of mucus and blood.

I had an ANA test come back 1:160 with speckled pattern. It was followed up by ENA which was negative for everything, so the ANA was later dismissed. I still believe that an autoimmune cause is the likeliest given my symptoms, ANA and familial history of Sjogren's, RA and MCTD or lupus. Two tests that were missing from the ENA were anti-centromere and anti-chromatin, which I'm trying to get.

I forgot to mention that the stomach/duodenum biopsies were tested for mast cells (stain CD117). I requested it after reading Lawrence Afrin's commentary on the high rate of positives in his MCAS patients. Biopsy testing for mast cells and eosinophils were both negative for me.

Do you believe that the best way to repair leaky gut is through dietary means?
 

Dmitri

Senior Member
Messages
219
Location
NYC
@Dmitri What's your protein level like? If it's on the deficient side, as in Protein Losing Enteropathy, consider doing the equivalent of the Mayo PAVAL (paraneoplastic syndrome) panel as b-cell Lymphoma can be another finding with lymphangiectasia. It's not unusual then to have a positve ANA with this.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3046182/

My protein levels were normal on the tests I had the past year, 7-8 g/dl range. Creatinine levels can be slightly lower than average, and albumin slightly higher. If protein levels aren't low, I'm guessing that's supposed to discount the possibility of PLE and it's of a less typical presentation?
 

kangaSue

Senior Member
Messages
1,849
Location
Brisbane, Australia
My protein levels were normal on the tests I had the past year, 7-8 g/dl range. Creatinine levels can be slightly lower than average, and albumin slightly higher. If protein levels aren't low, I'm guessing that's supposed to discount the possibility of PLE and it's of a less typical presentation?
Can't say I know for sure but I would assume the same myself.