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Crohn's Disease Forum » General IBD Discussion » Mast cell inflammation/ Mastocytic Colitis


11-17-2016, 11:54 AM   #1
charlottem
 
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Mast cell inflammation/ Mastocytic Colitis

Hi there!
I've been posting a lot recently (im sorry)

Basically my story is quite complex but as well biopsies showing possible crohns they have also shown a high number of mast cells. But I do not eat so I cannot cut out histamine from my diet. I am also on sodium cromoglicate but they repeated biopsies and found it had not reduced the mast cell numbers in the stomach. Wondering if anyone else has been in the same position? My biopsies showed:
Small bowel: There is patchy mild acute inflammation

Ileum: Fragment of granulation tissue. Shows an area of active chronic inflammation with ulceration. There is patchy mild-moderate inflammation.

Colon: focal cryptitis

comments: features are those of a patchy mildly active ileocolitis. The appearences are non-specific

Gastric: focal mild increase in inflammatory cells within the lamina propia with occasional intraepithlial neutrophils and a single crypt abscess. The features are those of a focal active chronic gastritis suggestive of upper GI tract involvment by crohns disease

Mast cell numbers exceeded 30.
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Diagnosed with:
EDS, Mast cell problem, POTS

Unknown:
Stomach Inflammation, Ileum Inflammation, Ileum Ulceration

PEGJ Tube- using the jej part for feeding and the gastric port for draining.
Elemental extra 028

11-17-2016, 12:03 PM   #2
my little penguin
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https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3033552/
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3346686/


Two articles

Inflammation leads to increased eosinophils and mast cells
This is also true for Crohn's disease
Have they ruled out mastocytosis ??

http://www.mastocytosis.ca/2011%20MS...h%20Slides.pdf
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11-17-2016, 12:12 PM   #3
charlottem
 
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https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3033552/
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3346686/


Two articles

Inflammation leads to increased eosinophils and mast cells
This is also true for Crohn's disease
Have they ruled out mastocytosis ??

http://www.mastocytosis.ca/2011%20MS...h%20Slides.pdf
Thank you. Well they said they had but I think they didn't do the test right (didnt keep the urine in correct conditions) and this is the same hospital who said I definitely didn't have crohns when their own pathologist thought it was. Also they didn't do a bone marrow biopsy like they said they would. What is worrying me is that the nalcrom should lower mast cell numbers and it really hasn't done that at all.
11-17-2016, 12:26 PM   #4
my little penguin
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Ketiferin (so) ? Has worked for some woth mcas disorder .
If the container wasn't chilled prior to collection
Not kept cold during collection and in the dark (covered by a bag )
And tranported cold then the urine test can be off

We had trouble with the lab running Ds urine properly they let it sit for 24 hours
And had to redo the test -still not sure it was done right
11-17-2016, 01:16 PM   #5
charlottem
 
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Ketiferin (so) ? Has worked for some woth mcas disorder .
If the container wasn't chilled prior to collection
Not kept cold during collection and in the dark (covered by a bag )
And tranported cold then the urine test can be off

We had trouble with the lab running Ds urine properly they let it sit for 24 hours
And had to redo the test -still not sure it was done right
Ketotifen? I cant' have that unfortunately due to interactions with other medications. Nope it wasn't I heard the nurses discussing how it wasnt and they just said 'oh just send it off anyway'. Ridiculous isn't it! I might ask for a bone marrow biopsy if we don't seem to get anywhere. I mean i dont want one by any means but maybe will provide answers?
11-17-2016, 01:17 PM   #6
charlottem
 
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I'm on fexofenadine and ranitidine too so on quite a lot of mast cell suppressing medication but doesnt seem to be working and I still quite frequent problems with rashes etc
11-17-2016, 01:32 PM   #7
my little penguin
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Have you tried singulair as well ??
Ds has lots of allergy issues possible mcas
Takes singulair (leukotriene) ,Zyrtec and Zantac plus dymista to calm his system
11-17-2016, 01:48 PM   #8
charlottem
 
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Have you tried singulair as well ??
Ds has lots of allergy issues possible mcas
Takes singulair (leukotriene) ,Zyrtec and Zantac plus dymista to calm his system
A professor diagnosed MCAS about a year ago but it doesnt account for the raised mast cell biopsies as with MCAS the number of mast cells are normal its the way in which they work.

I havent tried leukotriene actually. I have tried Zrytec (thats cetirizine to me here in the UK) and im on high doses of zantac (ranitidine here)

Maybe try sodium cromoglicate/nalcrom/gastocrom and see if that helps him?

Thanks for your replies though
11-18-2016, 03:18 PM   #9
wnorm
 
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Hi. I am 64 and have collagenous colitis and mastocytic enterocolitis and numerous food and medication allergies and intolerances. Long story short, after experimenting with various meds and diet plans for years, filtering advice from a multitude of medical specialists, I found the best drug regimen for me is :

Aerius (5m) 3x/day
Ketotifen fumarate tabs (3 at bedtime because it can make you sleepy)
Gastrocrom 100 mg -8 capsules/day

If the nighttime itching is totally unbearable, then I may take the odd Zyrtec. However, Zyrtec can cause loss of cognition in older folks and is terribly constipating. One of my doctors used to tell me : "Drugs that make you sleepy can make you stupid."
11-19-2016, 06:22 AM   #10
charlottem
 
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Hi. I am 64 and have collagenous colitis and mastocytic enterocolitis and numerous food and medication allergies and intolerances. Long story short, after experimenting with various meds and diet plans for years, filtering advice from a multitude of medical specialists, I found the best drug regimen for me is :

Aerius (5m) 3x/day
Ketotifen fumarate tabs (3 at bedtime because it can make you sleepy)
Gastrocrom 100 mg -8 capsules/day

If the nighttime itching is totally unbearable, then I may take the odd Zyrtec. However, Zyrtec can cause loss of cognition in older folks and is terribly constipating. One of my doctors used to tell me : "Drugs that make you sleepy can make you stupid."
Oh ok thank you. I'm on a few antihistamine but they dont really seem to be having too much of an effect so I think theres maybe something else going on
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