Mastocytic Enterocolitis in Children

Hello everyone,
I am new to this forum and looking for other parents whose child(ren) have been diagnosed with Mastocytic Enterocolitis (ME).
My daughter (9) was recently dx and I am looking for more info.
There is little information about this disease and seems to be some confusion as to whether this is classified as an IBD or not. (I have read both, from reliable sources).
If you have a child with this disease, I'd love to hear more about it.
Thank you,
Melissa

Hi and welcome.
Sorry to here about your DD. Her condition is considered new to the IBD world. The way I understand it, is a form of IBD. I don't know of anyone on here the has that Dx yet. However I've only been around a few months. Sorry not of much help.
My 3 yr. old is going through the process of Dx right now.
She's had IBD symptoms since 6mo. old. It's been a long road.
I hope your girl is finding relief. Hang in there more poeple will be on there way.
Welcome aboard.


Farmwife

I have heard of it briefly.
I checked with our GI today to see if Ds's latest biopsy slides were stained for mast cells.
They were not.
No I am pushing for this as well since he seems to have more than one thing going on.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3033552/

Histologic evaluation, determination of enzyme activity, and allergy testing may aid in the investigation of conditions with a suspected mast-cell etiology. Endoscopic biopsies of the stomach, small bowel, and colon can help to determine whether the number of mast cells in the mucosa has increased. Except for urticaria pigmentosa (fixed reddish brown maculopapular lesions) and cutaneous mastocytosis, mast-cell biopsy findings are difficult to identify via standard hematoxylin and eosin staining (Figure 1), and in many cases, specific pathologic features such as crypt distortion, mucin depletion, cryptitis, abscesses, granulomas, thickened collagen bands, shortened villi, or excessive eosinophils/lympocytes are not seen in mast cell–related disease.6 Consultation with a pathologist is essential to ensure that an appropriate evaluation is performed. The excess of mast cells can be evaluated via immunohistochemical analysis for CD117, mast-cell tryptase, or Giemsa staining (Figure 2). We believe that many patients with mast cell–induced gastrointestinal disease may be missed if these stains are not used.

Click to expand...

So thanks
Hopefully our GI will listen and stain the slides.....:voodoo:

Hi Melissa and welcome

The best sources I've found consider ME a form of IBD. Of course, the people who originally coined the term never intended for it to be a diagnosis, just a descriptive term, so I think there's a lot of confusion surrounding it in all circles.

I do believe it is far more common than realized and now that they're starting to stain for increased mast cells, it won't be quite so "rare". However, you're the first I've seen on this forum describing a child with it. We've had a few adults diagnosed with it.

Hi Melissa and :welcome:

I am so sorry to hear about your daughter...:hug:

I too don't recall anyone with a child that has been diagnosed with ME. I know dannysmom had asked that her so be tested for it when he had his last colonoscopy. Perhaps she will know more about it.

Good luck hun.
Dusty. xxx

Mmmm, sounds like that covers just about everything my daughter gets (apart from diarrhea). Might be worth mentioning to the paediatrician! My daughter is 9 as well.

Hi -
I asked that my son's biopsies get stained, but the pathologist said he could see the mast cells were within normal limits so did not do the stain. How is your daughter getting treated?

Dannysmom-
you may want to forward the paper I posted to your GI.
Basically normal stain used during scopes will not pick up on the mast cells.
OUr GI first came back with -"mast cells would have shown up in large number if they were there".
After looking at the paper I have linked- He is now forwarding the info on to the pathologist to see if they can still stain DS's slides specifically for the mast cells. :dance::dance::dance:
HE is also reviewing the paper a little closer to see if it fits DS's symptoms.

I am hopeful at least.

Good afternoon everyone, and thanks for all the replies.
From what our GI told us, the mast cells need the tryptase (sp?) stain in order to determine elevation (more than 20 per high power field is indicative of ME), not just by sight.
Pill cam results come today, so hopefully that will show us any additional inflammation, damage, etc. Allergy test (blood) showed no food allergies.
We are seeing some improvement with the use of Cromalyn/Gastrocrom.
She is still losing weight, albeit at a much slower rate since the introduction of zofran around the clock.
I did exchange a few emails with Dr. Sarah Glover at Shands who was referred to us by 2 other adult ME patients. She did confirm that ME is in the IBD family. However, she doesn't see children, so she is checking around to see who we should see.
Knowing what we do now, I would encourage parents to push for the triptase stain.
The only major difference from typical ME symptoms and my daughters' is that we see more constipation (c) than diarrhea (d). But, from what I have read, gut paralysis is a side effect of ME (Haley was dx with delayed gastric emptying about a month ago.)
I am still searching to find other parents whose children have been dx with this as well.
~~Hopeful for rapid healing and a return to "normal"!!!~~
Again, thanks for all the feedback.
Also, someone asked what meds she is taking:
Reglan 3mL (4x/day)
Zantac 75mg (2x/day)
Periactin 5mL (2x/day)
Zofran 4mg every 6 hours
Gastrocrom/Cromalyn 10mL (3x/day)

Good luck...I hope all continues to improve for your daughter.

Dusty. xxx

I have a son with CD, but now I am thinking he may have a Mast Cell Disorder. I'm trying to find out more about symptoms/medications. Thanks!

Hello Melissa,
Since reading about Mastocytic Enterocolitis, I am convinced that this is what my son had when he was younger. The scope showed only nodular lymphoid hyperplasia, but the GI (second opinion) thought that he had a microscopic Mast Cell Disorder that was the cause. This was over a decade ago, so staining for the cells and looking for it in children was not the usual practice then.

He was also treated with Cromalyn, which he took for over a year. We knew the medication helped because if we were travelling and he missed a couple of doses his symptoms returned. After about a year our son told us that he didn't think that he needed it anymore. Hurrah! He was right. He had been ill for about three years before this.

So, as you know cure is possible with this particular IBD. Our son is almost 20 and has been well since then. May this soon happen for your child.

Hi. Do you remember much about the Cromolyn? I've read that treatment for Mast Cell disorders is an H1 and H2 antihistamine and a mast cell stabilizer, Cromolyn. We are giving our son the antihistamines- Claritin and Pepcid. I'm trying to learn more about the Cromolyn. Thanks and glad to hear your son's doing well!:soledance:

Hi Zinnia,
Here's some info about the specific medication that he was on, Sodium Cromoglycate (Nalcrom): http://products.sanofi.ca/en/nalcrom.pdf
You'll see that it is used to treat food allergy--our doc was using it as a mast cell stabilizer. The theory was that our son was reacting to something in the environment, but rather than a reaction in his lungs (asthma) he was having a reaction in his gut. The mast cell stabilzer stopped the over-reaction in the gut, and he got better. He never had any side effects from it.

Our son, who was then nine, mixed this up and drank it 20 min. before meals which was a really inconvenient. However, he did this by himself at school and while travelling for hockey tournaments. He set his watch to beep at the correct time, excused himself from class, went to his locker, got the medicine, went to the washroom, mixed it up, drank it, returned the stuff to his locker, and then returned to class. Of course he also had to keep up on anything that he missed in class. At the time, to me, it seemed this was all a bit much for him to be doing, especially because he had been ill for so long. However, I realize now how much he learned during that year. He certainly learned about the consequences of choice. If he chose not to take his medication at school he promptly got sick within two days. He learned to be responsible for the schoolwork that he missed every day, and he learned not to complain about the situation.

I remember the uncertainty and anxiety about choosing to treat his illness with this medication, especially without clear pathology on scopes that told us for sure what the diagnosis was. But, there was no easy access to info then and we had to trust the expertise of the doctor. I am so glad that we did. He has done so well since then.

Thanks! My son is 6 and was diagnosed with Crohn's at 2. He has failed on every strong IBD drug, including Imuran, steroids, Remicade and Humira. When I started to give him Pepcid (H2 inhibitor), within 2 weeks he went into remission for the first time in his life. We are in the process of trying to convince our doctors that something else is going on, possibly involving mast cell issues. We are trying to get his old biopsies tested with the special stain for mast cells. So, while I think he does have CD, I think it's just too much of a coincidence that the only drug he responded to is for mast cell disorders. Hope we find some answers soon!

Good luck. I sure do hope that you get some answers very soon!