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PLEASE HELP!: Mastocytosis, Celiac, Endometriosis?!

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Old 07-28-2008, 11:04 PM   #1
Join Date: Jul 2008
Location: Cincinnati, Ohio
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wilsjel HB User
PLEASE HELP!: Mastocytosis, Celiac, Endometriosis?!


I have been having issues with my stomach- basically my whole life (always have had a hard time digesting...) - but now my problems are getting worse and I still don't have answers!

I just wanted to post to see if you all could share thoughts / similar stories / what you think.. etc.

So, where to start? ... First off, if this matters - I'm a 19 year old female (:

In 2006, I was diagnosed with PCOS due to bloodwork and irregular periods. Since, I’ve been on birth control and have had absolutely no problems or really even symptoms – besides the irregular periods when I am not on birth control.

So, fast forward. March of this year. One weekend, I just got this horrible pain in my lower back. I went to the ER, thinking it may be kidney related (it was in the “kidney area”) and all bloodwork / urine came back normal. The doctor there seemed to think it was muscular (which I KNOW it was NOT) and gave me an injection of anti-inflammatory which did not touch the pain one single bit. A CT scan was also done which was normal.
After that, I was on the couch for about 2 weeks with excruciating pain in my back area.
It eventually went away, being constant but with much less intensity. Now, it comes every once and a while and does hurt, but not like it did in March.

So – I went to my doctor and she suggested it was colitis or diverticulitis (my dad had diverticulitis and had part of his colon removed). She scheduled me for a colonoscopy with a gastroenterologist.

Colonoscopy was completely normal except for a spot of irritation which the GI doctor said would heal itself and was already on the road to recovery… The tissue taken was also completely normal.

After the colonoscopy, I was still in a lot of pain, my stomach hurt constantly. My gastroenterologist then ordered an ultra-sound. Once again, completely normal.

Then, I started having blood in my stool. I had blood in my stool about a year or two ago – at that time, I called my doctor and he did not seem worried at all. Well, this instance of blood- there was a lot. And I was worried. I called the gastro and he didn’t seem to be concerned, just to keep an eye on it (I kept reiterating there was a lot of blood, but no one seemed concerned).

So, I had large amounts of blood twice in my stool in less than two weeks apart. It concerned me, but as a gastroenterologist, I assume he heard it all of the time and wasn’t concerned.

He decided to do a lower flex sigmoid after the blood, to make sure my colon was indeed ok. That was also normal- the irritation found in the initial colonoscopy was also gone. (He had been relating a lot of my problems to that “irritation”- that miraculously disappeared?). The tissue taken during that scope was also normal.

I went to my gyno, suspecting something like endometriosis of my bowels. He doubts it because I am not having rectal bleeding when I am on my period (2 of the 3 instances, I WAS on my period). So, he ruled that out and does not wish to do a laproscopy in order to find anything because he does not think it's necessary. Then, he suggested I have Celiac's disease. I just don't think I do. After hours of research, I really don't think that that is my answer. I am scheduling a blood test with my gastro this week just to be sure.

So. Then. My best friend was watching Mystery Diagnosis and she told me to google Mastocytosis. And I've come across Systematic Mastocytosis but it is SO rare that I can't find much information. Any ideas on this one? The symptoms listed DO sound like mine; but would it cause blood in my stool? Is it really likely that my symptoms are from a very rare disease?

Also- just some additional notes: I constantly feel bloated and like my stomach is "swollen". It usually hurts all of the time, especially after I eat. The pain in my lower left back comes back every now and then, sometimes more often than others but is not near as severe as when everything first started. Also, my stomach is EXTREMELY sensitive to beef. And it is not a good story when I eat it..

I also sometimes have pain that will begin in my lower back and radiate to my hips and pelvic area. This isn't constant but does happen every so often (I would say at 2-3 times a week at least, but sometimes daily).

So basically.. what I'm looking for is something that would cause abdominal cramps / discomfort, rectal bleeding (large amounts), flank pain, radiating pain, perhaps a misdiagnosis of PCOS?, negative CT scan, negative biopsies from scopes, negative scope findings...

I honestly was convinced I had endometriosis of the bowels because all of my symptoms match up. But the gyno shot those ideas down so I'm possibly looking to someone for a bit of insight or if anyone could further educate me / let me know if they think it could possibly be mastocytosis.

Thanks to all for any responses in advance! I appreciate ANY input! (=

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Old 07-28-2008, 11:11 PM   #2
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Join Date: Sep 2006
Posts: 1,491
k2626 HB User
Re: PLEASE HELP!: Mastocytosis, Celiac, Endometriosis?!

When was your scope? I would have said it sounds like colitis from what i know of it....The blood, could it be a fissure from straining or a "hard" bowel? Was it bright red blood or dark?

Old 07-29-2008, 03:38 AM   #3
Join Date: Jul 2008
Location: Cincinnati, Ohio
Posts: 4
wilsjel HB User
Re: PLEASE HELP!: Mastocytosis, Celiac, Endometriosis?!

My first colonoscopy was April 21st. My flex sigmoid was July 11th. Both biopsies showed no signs of colitis....

The blood is not bright, bright red but it's also not a dark brown. It'd almost look like if you were bleeding a good amount from your skin. If that makes sense?

I just cannot believe how much blood there was. Especially my latest episode.. It makes me worry! (=

Thanks for your reply.. do you think colitis would still be an option to explore even if both biposies were negative?

Old 12-05-2009, 12:07 PM   #4
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Join Date: Aug 2008
Location: tuscaloosa,al usa
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marlee16 HB User
Re: PLEASE HELP!: Mastocytosis, Celiac, Endometriosis?!

Hello, any one from Alabama with Mastocytosis ? any information would be greatly appreciated ! This is a rare disease with many symptoms.
We should all help one another about this with what we know.

Old 12-07-2009, 05:25 AM   #5
Join Date: Nov 2009
Location: Philadelphia, PA
Posts: 8
SpottedFoxx HB User
Re: PLEASE HELP!: Mastocytosis, Celiac, Endometriosis?!

Wil - do you have any other symptoms not related to your stomach? Spots (like salmon colored freckles that turn bright red when you scratch them), rashes, hives. Do you get a foggy feeling, like you are walking with your head in a cloud? Allergy type issues?

Your mast cells, in addition to releasing histamine, also release heparin which is why bleeding can be a sign of mastocytosis. Mastocytosis is incredibly rare. If you want to start down this road and see if it leads anywhere, I'd suggest asking your doctor for a serum tryptase level and 24 hour urinalysis to check your histamine levels and see what that shows. If they are elevated, you'd need to have a bone marrow biopsy.

I'm sorry you are going through this.


Last edited by moderator2; 12-29-2009 at 09:28 AM. Reason: please do not post websites except as described in the Posting Policy

Old 12-26-2009, 01:56 PM   #6
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Join Date: Aug 2008
Location: tuscaloosa,al usa
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marlee16 HB User
Re: PLEASE HELP!: Mastocytosis, Celiac, Endometriosis?!

Hi and Thanks Julie, I haven't found anyone in Alabama with this so far.
Dr's say my daughter's case is most unusual,

Last edited by moderator2; 12-29-2009 at 09:28 AM.

Old 01-14-2010, 02:54 PM   #7
Join Date: Nov 2002
Posts: 3
fduran2848 HB User
Re: PLEASE HELP!: Mastocytosis, Celiac, Endometriosis?!


I am in Birmingham. I have an absolutely wonderful allergist/immunologist that manages my condition. I would be happy to talk to help you in anyway I can, although I have been dealing with this diagonsis less than a year.

Last edited by moderator2; 01-14-2010 at 03:00 PM. Reason: posted contact info - please read the posting rules

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