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I talked to a friend who happens to be a pathologist about my problems

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Ulcerative Colitis
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Posted 6/14/2013 2:34 AM (GMT 0)
My story is more convoluted than I have explained here, because UC has caused me the most problems, and more recent problems, I guess I identify with this group more.

2003 chronic heartburn that I could never get rid of.  Had endoscopy, dxed with gastric ulcer.  Rxed Nexium

2005 on followup for heartburn, doc noticed that I had lost a lot of weight. Another endoscopy this time with duondenal biopsies.  COMPLETE villous attenuation.  Dxed with celiac disease and confirmed with serology.  Phased in a GF diet.  STILL had painful heartburn.  GF diet was VERY difficult, especially when my symptoms (heartburn) did not improve.  Stayed GF for a year...gained a little weight, doubled the Nexium, saw a different doc who told me to go back to a regular diet if being GF was not helping.  So, I started eating gluten again although I avoid high gluten foods like bagels.

2009 massive D and bleeding about for a couple of weeks.  Colonscopy performed.  Pathologists debated whether it was UC or Crohn's.  Decided it was UC.  Highest lesion was 32 cm. Started Asacol and mesal suppositories. Flare lasted about a month

2011 Another flare, this time ended up in ER with pred IV, morphine.  GI switched to Rowasa instead of suppositories.  Flare lasted about a month

2013 Currently diagnosed with C diff.  Docs do not know if I am actually flaring or reacting to C Diff.  Doc has refused pred bc of the C diff.  Told to increase mesalamines.  After doing this the pain became unbearable so I quit taking them altogether.  Finished 10 days of vancomycin.  Still bleeding (worse than I ever have) and D.  Much left-side pain.  Anemic and dehydrated. . Week 6 of" flare" now Colonoscopy tomorrow.

HEREIN LIES THE RUB:  Pathologist friend suggested that I am "flaring" due to C diff and my gut probs are ALL celiac disease.  It's possible I do not have UC at all, but a C diff infection or INFECTIONS.  She will be reading my pathology. And looking for everything possibly to accurately diagnose me.  Could all my flares be C diff and not UC?  Or some crazy celiac reaction?

The fact remains that I am infected with C diff.  But I'm pretty sure I need to go back to being GF and maybe then I will get relief of this horror that my colon has become.

PS:  I stopped taking Nexium a year ago, and have had mild heatburn only two times.

(I also have Hashimoto's thypothyroid and have started having neuropathy in joints and skin)

 

Posted 6/14/2013 2:39 AM (GMT 0)
geeker, isn't is so stressful to just not know!! I hope your friend can figure some of your problems out.

at my last colonoscopy, my GI doctor said I had a perfect c diff colitis colon that he would use to show his students, BUT my c diff test was negative at the time.

did vanco help at all?? I haven't really noticed much of a difference this time being on it again. but I don't know what else to take besides flagyl and vancomycin. my doctor hasn't given me any other choices. I figure I will stay on it until I get 3 negative c diff tests. I have a 6 month supply of it- my cabinet is like a pharmacy.
Posted 6/14/2013 2:51 AM (GMT 0)
Vanco has not helped. 10 days at 250mg x 4. GI doc wants to "have a look" before furthering treatment. I have really been suffering.

The good thing is that he will do FMT if necessary.

Maybe going GF (and getting rid of C diff, of course) will be my "cure"
Posted 6/14/2013 2:56 AM (GMT 0)
Going GF and cutting out sugar in combination with the vanco ABX might get you some relief?
Posted 6/14/2013 3:59 AM (GMT 0)
You should look at h pylori.
www.naturalendocrinesolutions.com/articles/why-is-hpylori-more-prevalent-in-autoimmune-thyroid-conditions/

Yes I do think that c diff can be mistaken for UC.. Nexium set you up for c.diff to flourish
www.prweb.com/releases/2012/7/prweb9696785.htm
Posted 6/14/2013 4:18 AM (GMT 0)
PK my gastric biosies were neg for H pylori. Interesting articles!
Posted 6/14/2013 4:24 AM (GMT 0)
Yeah, and even so.. I'll direct you to
www.dramyyasko.com/resources/webisodes/h-pylori-another-piece-to-the-puzzle/ as to why that biopsy doesnt phase me with the history you have described.

Here is part 2
www.dramyyasko.com/resources/webisodes/h-pylori-another-piece-to-the-puzzle-webisode-part-2/
Posted 6/14/2013 4:31 AM (GMT 0)
I will give the lectures their due when I'm a little more awake.

Related...I have that MTHFR677 mutation that you advised me about a few days ago, and I had my Vit D level checked a few months ago and it was 9. So, marked deficiency there.

You are always so helpful; thank you PK!
Posted 6/14/2013 3:16 PM (GMT 0)
A quick literature search shows lympocytic gastritis is associated with celiac disease. That means you get an influx of T cells into the stomach, which causes damage/inflammation. Though if you have celiac, you really should not be eating gluten at all. =(

Though, the gastritis DOES make me suspect you were misdiagnosed and actually have Crohn's disease.
Posted 6/14/2013 4:24 PM (GMT 0)
geeker, you had a homozygous mutation, right? 9 would make me think you have a VDR Bsm or VDR Taq polymorphism as well.. I hope you are supplementing 3000-5000iui a day.

www.heartfixer.com/AMRI-Nutrigenomics.htm#MTHFR:%C2%A0%205,10-Methylenetetrahydrofolate%20Reductase%20%28%C3%9E%205-Methyl-Folate%29 This is good info for you.
Posted 6/14/2013 4:37 PM (GMT 0)
PK I am a heterozygous MTHFR677 mutant

And after next payday, I am going to 23 and Me myself, to learn as much as I can.

Post Edited (geeker) : 6/14/2013 10:47:01 AM (GMT-6)

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