Crohn's Disease Forum » Support Forum » Undiagnosed Club » New and had to fire my ex GI doc over Prometheus test... Help!

12-13-2014, 08:06 PM   #1
zHunt's Avatar
Join Date: Dec 2014
New and had to fire my ex GI doc over Prometheus test... Help!

Hi everyone, I'm new to this forum but have been watching for a while. I really need some guidance at this point.

I'm 28/F, and for all of my life I'd had very mild gut issues pop up from time to time, but in late 2012 I got c. difficile infection. It was found my gastroenterologist in Feb 2013, treated with a round of vanco and I did okay until I relapsed for seemingly no reason exactly a year later, Feb 2014. More Vanco and a couple rounds of Dificid later, I ended up getting a fecal transplant with an Infectious Disease doc.

While I am still testing negative for c. diff (thank goodness!) I have severe cramping and mucus diarrhea and/or loose stools several times a day on a daily basis 2-3 weeks out of the month and just generally feel like I have c. diff all the time again, but I don't. These "flares" tend to happen most frequently at the onset of my menstrual cycle, and my mouth gets full of ulcers a couple days before it happens.

I had dealt with my (now ex) gastroenterologist all summer about this, and she is pretty much afraid of me. She at first wanted to scope me until I had the transplant with the Infectious Disease doc. Now she says she thinks it's all in my head and gave me the Prometheus IBD SGI test, which came back as totally normal, also checked my CRP, and by my request I asked for a fecal calprotectin stool test. All came out perfectly normal. She said based on those labs,(especially the Prometheus test), there is no reason to get a scope. Told me I must have some mental issues and need psychiatric meds. It was outrageous.

Found a gastroenterologist I am comfortable with. We were going to go forward with upper and lower scopes, but the bloodwork I had just prior to those tests found that I was severely hyperthyroid. I was then admitted to the hospital and put on meds for that in October. Now that this thyroid issue is getting settled, I'd like to figure out what is wrong with my gut. I'd had thyroid tests earlier in the year and they were fine, so this thyroid issue is actually new and likely not related to my gut issues. My gut calmed down quite a bit for a few weeks but of course, by the second day of my menstrual period, I'm back to square one with diarrhea all day, cramping/pain with it, sometimes it really burns on the way out like battery acid, nausea, ulcers in my mouth, and a stabbing pain in my sigmoid colon. Dehydrated a lot.

Oh, my bloodwork recently has indicated that I am very anemic too.

Needing some help, support, guidance, anything here. I guess it's worth it to note that back in 2006, I had a c-scope for unintended weight loss that looked great but biopsies revealed active cryptitis with focal acute cryptitis. I wasn't having any diarrheaor anything though, so I shrugged it off.

I am wondering, despite all the blood work and stool tests I've had coming back normal, is it possible I could still have IBD?
Is the Prometheus and calprotectin test really that reliable at ruling out IBD?
Should I look into endometriosis since the onset of my flares start with my menstrual cycle?

At odds.
12-13-2014, 08:10 PM   #2
my little penguin
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Have you ask about bechets ?
It can mimic crohns
And has lots similarities
DS - -Crohn's -Stelara -mtx
12-13-2014, 08:14 PM   #3
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Clash's Avatar
Neither the Prometheus nor the fecal calprotectin are reliable as stand alone diagnostic tools. There can be false negatives for the FC and it can be less reliable for the small bowel. The Prometheus can also have issues as a stand alone dx tool.

If you could move forward with the scopes you may get further answers but sometimes and MRE or pill cam is also needed for the small bowel.

It might be a good idea to keep a symptom journal and to track your bms.

Hope you find answers soon.
Mom to
C age 19
dx March 2012 CD

CURRENT MEDS: MTX injections, Stelara

Dx May 2014: JSpA
8/2014 ileocecectomy
9/2017 G tube

PAST MEDS: remicade, oral mtx, humira
12-13-2014, 08:17 PM   #4
zHunt's Avatar
Join Date: Dec 2014
Oh, wow, I had never heard of that before! I will ask my new GI about looking into it when we go ahead with the scopes. I've not had ulcers anywhere but my mouth and they pop up during my menses, then a few days later my gut just.... explodes... very painful. And it just lingers on, flares up again around midcycle/ovulation then usually settles for a bit until the process begins all over again.

I was brought here today because last night was totally sleepless. Had what felt like severe menstrual cramping in my colon with several bouts of the usual - burning pudding/mush stools. (occasionally it is pure watery D)-- and my last period was 15 days ago. I have 38 day cycles. but had eaten a clementine orange about two hours before it all hit me. Kind of burned my mouth, so thought, hmm, if it burned my mouth, wonder if it's flaring my gut issues... whatever they may be.
12-13-2014, 08:21 PM   #5
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Join Date: Dec 2014
Thank you Clash for that validation. I was thinking the same thing - that these tests can't be that reliable and that what I really need is scopes, possibly laparascopy for possible endometriosis if they don't find IBD.

I'm a bit nervous to have the scopes done as I'd heard it can disrupt gut flora and with the way my c. diff tore up my gut for a year, eek. My Infectious Disease doc who did the fecal transplant told me to wait at least 4 months before a scope, but it's been about 8 months. So probably okay.
I get my next round of thyroid labs on 12/18, so pending those results I'll go forward with the scopes. But just reaching out here and kind of confused about everything, especially the "other tests."

Currently feels like there's a shard of glass stuck in my low left sigmoid. That happens EVERY menstrual cycle with this stuff since last year and the c. diff.
12-13-2014, 09:10 PM   #6
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Muppetgirl's Avatar
Hi and Welcome. My two cents worth would be that you have / have had a lot going on. Ideally you need a whole picture approach as these things will all be influencing one another and that can make it very tricky to establish a new dx.

I have hashimoto's and was severely hyperthyroid to begin with. As you probably know too much thyroxine speeds everything up including metabolism, so while it may not explain your bowel probs, it will undoubtedly have had an impact. Add to this your transplant, c.diff and cryptitis and its less than straight forward. I would recommend encouraging your different doctors to talk to one another (if they aren't already) as I think a multi-disciplinary approach is most likely to get you answers. Make sure you remind your doc(s) of all your current and past dxs.

I also have bowel endometriosis. It is an uncommon diagnosis, usually made after someone presents with endometriosis elsewhere. Your symptoms don't sound typical of the dx. Hormone fluctuations affect lots of systems in the body which may be the link. Also the blood loss with your anemia. Perhaps get to the bottom of the other stuff and take it from there. Good luck.
12-13-2014, 09:28 PM   #7
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Clash's Avatar
I second what MLP said as well about looking into Bechets.

I'm not saying that it's not CD but there is no reason not to be looking into other things as well.

Also have you had your vitamins checked? B12, folic acid and so on?
12-14-2014, 03:25 AM   #8
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Join Date: Dec 2014
Yeah, my B12 is good. It as my iron and saturation? that was real low, and that could have been because I was literally starving to death from not being able to eat hardly anything for a month, I'm not sure. I don't have bloody stool, but during my period lots of blood is passed thru my colon and I get bleeding hemorrhoids a lot, too.

Muppet, gonna send you a PM regarding endo.
12-18-2014, 08:47 PM   #9
Join Date: Mar 2014
Location: Kansas City, Missouri
You need to rule out Bechet's. Also, endometriosis is lower on the list. You can get menstrual magnification of your medical symptoms; meaning they will get worse during your cycle.
01-15-2015, 09:36 PM   #10
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Yeah, my B12 is good. It as my iron and saturation? that was real low, and that could have been because I was literally starving to death from not being able to eat hardly anything for a month, I'm not sure. I don't have bloody stool, but during my period lots of blood is passed thru my colon and I t bleeding hemorrhoids a lot, too.

Muppet, gonna send you a PM regarding endo.
I have had Ulcerative Colitis since age 13 (now 62). Over the years it turned into Crohns Colitis or location I guess. My periods used to kill me. I had a few laparoscopic procedures by my OBGYN for adhesions from the colon to the ovaries or uterine wall. That helped a bit (I was in extreme pain). Later my periods used to throw my back out and have the worst cramps and cause me to have diahrhea. I ended up getting nerve blocks in my nerves that run from the back down around the hip to the groin. That worked well.

So not sure this answers any questions for you but I would definitely go to a good GYN and a good Gastro Dr. I found that my Newport Beach, CA doctors were good, but nowhere near as great as my Boston doctors (Relocated for colon cancer and to be near family... Dr was awesome.. name upon request).

Anemia and poor iron can be due to a blood loss in your body, from female causes or from cancer....have both the GYN and Gastro check everything.

Good luck.
01-19-2015, 03:39 PM   #11
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Many doctors seem to want their patients to have mental health problems - I'm sorry you were treated like that, though sadly it's all too common.

But while normal test results shouldn't be taken as evidence of psychological issues, scopes and other invasive tests are not risk-free, and doctors need to be able to justify doing them. Symptoms are one factor in this, results from initial tests are another. While faecal calprotectin and stool tests, blood tests, etc. can miss many things, having them come back negative is something your doctors have to take into account.

Personally, I've found it unhelpful to try to suggest to doctors what I think is wrong with me or what tests I need. Doctors do have to take patients' opinions into account, but they can't use that as the main factor in diagnosis. E.g. when considering whether or not to do scopes, your doctor should take into account that you are concerned and that you want further tests. But if a doctor is convinced there is no need, they're generally not going to change their minds because the patient wants them to. That's why it's important you've found a doctor who's on the same wavelength as you and shares your belief that things need further investigation.

So in that respect I think you've already made the best step you can in finding a good doctor. I wouldn't start trying to work out for yourself if you have Crohn's or not or trying to guess your diagnosis. If you have Crohn's, the diagnosis will be made by objective test results. As long as your doctor is carrying out tests, you don't need to be worrying about it yourself (I know it is always worrying, but try not to!).

That said, Crohn's or not, you can get good information and support from this forum, e.g. what the tests are like, which symptoms are potentially more serious, what you can do to try to manage symptoms (e.g. what foods can worsen diarrhoea, what over-the counter meds may help), ideas to improve communication with doctors, etc. Just try to keep an open mind about what's causing your troubles, make sure your doctor knows all your symptoms and concerns, and trust your doctor to keep trying to figure it out.

I hope you get some answers and relief from symptoms very soon.
01-19-2015, 04:51 PM   #12
Join Date: Jan 2015
Just found this site. Basically looking for diet info since an Ileocecectomy last week. Saw this post and the thyroid jumped out at me. I have Hashi. I highly recommend you read Stop the Thyroid Madness. There is a web page, 2 books and a few FB pages. Hands down the best info I have ever seen and I am a nurse. Learned more on that site then I did in nursing school. Good luck!
01-19-2015, 05:06 PM   #13
Join Date: Jan 2015
Grave's can do a job on your digestive system BTW.
02-24-2015, 07:06 PM   #14
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Join Date: Oct 2013
Location: Florida

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Hi, I have been Undiagnosed most of my life. I'm 42 and started having problems as a freshmen in college (at age 18).

Is it Crohn's or endometriosis on the bowel? No one knows, and sometimes I feel like no one cares. OB sends me to Gastro....Gastro throws me back to OB/GYN. Maybe I have both!?

I think mostly Crohn's. It is frustrating, so sorry.
Mild Crohn's 1997-2004
Bloody diarrhea, Pain in lower right stomach

Remission 2005-2013
Felt great for many years...Married and had two kids during remission!!

Symptoms, No Treatment 2013-2015
Occult blood in stool, Joint pain, Anemia, Fatigue, Pain in upper right stomach

Currently Flaring 2016
Bloody diarrhea, Pain, Elevated liver enzymes, Hip/back pain

Crohn's Disease Forum » Support Forum » Undiagnosed Club » New and had to fire my ex GI doc over Prometheus test... Help!
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