OT- Should I try going gluten free?

Please feel free to read, share your thoughts, your stories and connect with others!
DarknessEmbraced
Posts: 3579
Joined: Sat Nov 01, 2014 4:54 pm
Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

OT- Should I try going gluten free?

Postby DarknessEmbraced » Thu Jul 14, 2016 5:47 pm

I'm not sure if I should try gluten free since I don't get diarrhea too often. My main symptoms are: Bloating, gas, cramping, pain and either multiple small bowel movements, constipation or diarrhea. It varies a lot. The biopsy results won't be back any time soon. I already limit my diet because I eat fish and seafood but no other meats and because of foods that make my symptoms worse. My Celiac Disease biopsy was negative. Everything else I try fails. I'm not sure what else to do.
Diagnosed 10/28/14, age 36
Colon Resection 11/20/14, LAR (no illeo)
Stage 2a colon cancer, T3NOMO
Lymph-vascular invasion undetermined
0/22 lymph nodes
No chemo, no radiation
Clear Colonoscopy 04/29/15
NED 10/20/15
Ischemic Colitis 01/21/16
NED 11/10/16
CT Scan moved up due to high CEA 08/21/17
NED 09/25/17
NED 12/21/18
Clear colonoscopy 09/23/19
Clear 5 year scans 11/21/19- Considered cured! :)

User avatar
mypinkheaven
Posts: 459
Joined: Fri May 20, 2016 4:29 pm
Facebook Username: Sally Cunningham
Contact:

Re: OT- Should I try going gluten free?

Postby mypinkheaven » Thu Jul 14, 2016 6:19 pm

DarknessEmbraced wrote:I'm not sure if I should try gluten free since I don't get diarrhea too often. My main symptoms are: Bloating, gas, cramping, pain and either multiple small bowel movements, constipation or diarrhea. It varies a lot. The biopsy results won't be back any time soon. I already limit my diet because I eat fish and seafood but no other meats and because of foods that make my symptoms worse. My Celiac Disease biopsy was negative. Everything else I try fails. I'm not sure what else to do.


I don't think going gluten free would help if you Celiac came back negative. Have your problems been going on since the resection in 2014 or the colitis in January?

What sort of foods agree with you? What foods cause problems?
MSS, KRAS Wild NRAS Mutated
9/2012 CRC IIB Lft Colectomy 0 lymph nodes 0 Chemo
10/2013 CT clear
11/15 CEA 2.7 to 4.6
11/15 Spread to uterus. Hysterectomy
2/16 Pelvic radiation 25, brachytherapy 3
4/16 - 6/16 Xeloda
6/16 CT Several lung nodules 5 mm
8/16 CT Nodules still present. Most stable. Some growth
11/16 Transfer to UCSD Moores
12/16 Folfox + Avastin failed
2/17 Folfiri + Erbitux
8/17 5FU+Erbitux No 5FU bolus
7/18 Spread to vagina
6/18 Folfiri + Avastin + Trametinib
6/18 CEA dropping

DarknessEmbraced
Posts: 3579
Joined: Sat Nov 01, 2014 4:54 pm
Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

Re: OT- Should I try going gluten free?

Postby DarknessEmbraced » Thu Jul 14, 2016 6:31 pm

I was just told on a board that someone can have a gluten allergy without having Celiac Disease. I'm not sure if it would help either but I don't know what else to try. I've had problems since my colon resection surgery. I used to have diarrhea all the time and would have accidents until I went on Dicetel(anti-spasmodic). Then I had issues with constipation and had narrowing at the anastomosis site so that area was stretched during a sigmoidoscopy. Since the ischemic colitis in January I have had more pain, more cramping, bloating, bowel issues and worse symptoms on my period. Not sure why ischemic colitis made everything worse. I haven't been able to eat broccoli, cauliflower, onions, leafy greens, popcorn, peanuts, sunflower seeds, certain soups, beans. lentils. Toast never used to bother me, nor did pasta, or anything breaded but since ischemic colitis everything bothers me.
Diagnosed 10/28/14, age 36
Colon Resection 11/20/14, LAR (no illeo)
Stage 2a colon cancer, T3NOMO
Lymph-vascular invasion undetermined
0/22 lymph nodes
No chemo, no radiation
Clear Colonoscopy 04/29/15
NED 10/20/15
Ischemic Colitis 01/21/16
NED 11/10/16
CT Scan moved up due to high CEA 08/21/17
NED 09/25/17
NED 12/21/18
Clear colonoscopy 09/23/19
Clear 5 year scans 11/21/19- Considered cured! :)

User avatar
mypinkheaven
Posts: 459
Joined: Fri May 20, 2016 4:29 pm
Facebook Username: Sally Cunningham
Contact:

Re: OT- Should I try going gluten free?

Postby mypinkheaven » Thu Jul 14, 2016 7:12 pm

You've had a lot done to your colon in a short amount of time. And all of it is emotionally difficult. It can take years to get back to "normal".

I've had trouble since my colon resection in 2012. What finally helped me, (I had daily symptoms like you) was using Metamucil smooth powder. I started out really slowly, using a very small amount and built up. Then I was able to add leafy greens and all the other foods you mentioned - not always with good results because they are hard to digest.

Are you still taking the Dicetel on a regular basis? The drug itself can exacerbate some of your symptoms. I occasionally take Bentyl - which is similar to Dicetel but works differently chemically. I'd rather try to ignore the discomfort (easier said than done) than take the Bentyl daily.

Feeling bad every day is very depressing. A short walk or cleaning the house get me moving around - that helps too. I also find that a heating pad on my abdomen helps too. You might even consider an anti-depressant for a while.
MSS, KRAS Wild NRAS Mutated
9/2012 CRC IIB Lft Colectomy 0 lymph nodes 0 Chemo
10/2013 CT clear
11/15 CEA 2.7 to 4.6
11/15 Spread to uterus. Hysterectomy
2/16 Pelvic radiation 25, brachytherapy 3
4/16 - 6/16 Xeloda
6/16 CT Several lung nodules 5 mm
8/16 CT Nodules still present. Most stable. Some growth
11/16 Transfer to UCSD Moores
12/16 Folfox + Avastin failed
2/17 Folfiri + Erbitux
8/17 5FU+Erbitux No 5FU bolus
7/18 Spread to vagina
6/18 Folfiri + Avastin + Trametinib
6/18 CEA dropping

kandj
Posts: 308
Joined: Sun Sep 27, 2015 11:29 am

Re: OT- Should I try going gluten free?

Postby kandj » Thu Jul 14, 2016 8:30 pm

DarknessEmbraced wrote: I have had more pain, more cramping, bloating, bowel issues and worse symptoms on my period.


Any chance you have endometriosis? A lot of your symptoms would fit that, especially the lack of anything definitive from a colonoscopy.
wife to DH, dx 8/15 stage IV @36, numerous unresectable liver Mets
resection and HAI placed 12/15
Liver resect 5/19/2016 15-20 mets (surgeon lost count, but it hopeful he got it all!)
Recurrence 7/2017 4 Liver mets and one possible lung met
Radiation on liver Mets 12/17
Lung met 10/18
VATS on lung met 11/18 started xeloda
Chemo break 6/19-11/19 lung/adrenal gland recurrence 11/19
Adrenal ablation2/20 Robotic Assisted VATS 3/20 Xeloda again
9/2020 SBRT on Adrenal Met 11/2020 New liver met to deal with

DarknessEmbraced
Posts: 3579
Joined: Sat Nov 01, 2014 4:54 pm
Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

Re: OT- Should I try going gluten free?

Postby DarknessEmbraced » Thu Jul 14, 2016 10:43 pm

I take Dicetel 3 times a day. If I forget to take it I have horrendous cramping and pain. I've never tried Bentyl. I tried metamucil in the beginning but no matter how little I used it gave me horrendous cramping and gas. When I wasn't on the Dicetel I would have diarrhea accidents all the time, even in bed and would have horrendous bowel spasms. Heating pad on my abdomen does help sometimes. It is hard being in pain daily and I do get frustrated sometimes. I don't really feel depressed though. I do appreciate all the advice. :) I walk to the grocery store and to do other errands or walk to catch the bus.


My GI mentioned possible endometriosis. Would my yearly cts show that since they do chest, abdominal and pelvic? I know the symptoms during my period fit endometriosis. I don't have heavier bleeding but I am on the Mirena iud which makes my periods much lighter. What's strange though is I never had period issues until after ischemic colitis but maybe that's a coincidence. He mentioned a gynecologist making an incision in my abdomen to place a camera in order to look around?
Diagnosed 10/28/14, age 36
Colon Resection 11/20/14, LAR (no illeo)
Stage 2a colon cancer, T3NOMO
Lymph-vascular invasion undetermined
0/22 lymph nodes
No chemo, no radiation
Clear Colonoscopy 04/29/15
NED 10/20/15
Ischemic Colitis 01/21/16
NED 11/10/16
CT Scan moved up due to high CEA 08/21/17
NED 09/25/17
NED 12/21/18
Clear colonoscopy 09/23/19
Clear 5 year scans 11/21/19- Considered cured! :)

Colon King
Posts: 52
Joined: Tue May 17, 2016 9:13 pm
Location: Canada
Contact:

Re: OT- Should I try going gluten free?

Postby Colon King » Thu Jul 14, 2016 10:54 pm

It's worth experimenting and seeing what affects diet changes have on how you feel. Treat your body like a science experiment as Tim Ferris would say. Maybe try to reduce gluten / dairy and see what happens.
Personally I notice like clockwork, if I indulge in pastas, flours, cakes, etc… I'll wait for the horrible bloating and expect to be out of commission. Sometimes it's just worth it though. Yum.
39 year old male, Canada.
Husband; father of 4.

5/16/16: 3cm x 4cm Intermediate Serrated Polyp found by fluke (elective colonoscopy)
5/20/16: CEA 1.7 (phew)
06/10/16: EMR complete
06/16/16: Biopsy result: Fragments of tubulovillous adenoma; negative for high grade dysplasia
09/08/16: Follow up Colonoscopy scheduled.

My blog: https://colonking.com

drw
Posts: 51
Joined: Sun Mar 30, 2014 4:43 am

Re: OT- Should I try going gluten free?

Postby drw » Fri Jul 15, 2016 5:58 am

You should try it and see if it helps. I had my reversal last March and was in pain most of the time. I told every doctor I saw and their only solution was pain pills....no, thank you. I was in agony every morning for about 3 - 4 hours after multiple bms and I was considering going back to the bag. My daughter told me multiple times to cut out gluten so I tried it. I dropped gluten that day, which was no problem because it was one of the days where I couldn't stop going to the bathroom so I didn't really eat. The next morning was good, but I just thought it was because of my previous day so I was happy that I was having a good day. The next day, still no pain. I waited every morning for a week....nothing. I still had some discomfort, but none of the pressure, spasms, and agony that was my usual day. Life changing! Of course, as I type this I am just recovering from my stupid decision of eating Tijuana flats on Sunday. I forgot how truly awful this pain was. I don't know why I felt better so quickly when I first started but now it has taken 5 days to recover from cross contamination. Live and learn....You should give it a go and just see how you feel. I hope you will be amazed too.
4/14 dx rectal cancer at 45 yoa
4/14 transanal excision
6/14 lar - 2 positive lymph nodes stage 3
8/14 started radiation and xeloda
1/15 completed chemo
2/15 Ned :)
3/15 reversal

DarknessEmbraced
Posts: 3579
Joined: Sat Nov 01, 2014 4:54 pm
Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

Re: OT- Should I try going gluten free?

Postby DarknessEmbraced » Fri Jul 15, 2016 7:41 am

I agree Colon King. I am trying gluten free starting today to see if it helps at all. If it doesn't help then I could try to cut out something else.

drw: I am trying it today and for a week or more. I'm glad it helped you so much! Sorry you are suffering from pain from cross contamination!*hugs* I hope it gets better soon! I feel like I have to try something since I have to wait so long to see my GI.
Diagnosed 10/28/14, age 36
Colon Resection 11/20/14, LAR (no illeo)
Stage 2a colon cancer, T3NOMO
Lymph-vascular invasion undetermined
0/22 lymph nodes
No chemo, no radiation
Clear Colonoscopy 04/29/15
NED 10/20/15
Ischemic Colitis 01/21/16
NED 11/10/16
CT Scan moved up due to high CEA 08/21/17
NED 09/25/17
NED 12/21/18
Clear colonoscopy 09/23/19
Clear 5 year scans 11/21/19- Considered cured! :)

drw
Posts: 51
Joined: Sun Mar 30, 2014 4:43 am

Re: OT- Should I try going gluten free?

Postby drw » Mon Jul 18, 2016 6:40 am

Good luck :)
4/14 dx rectal cancer at 45 yoa
4/14 transanal excision
6/14 lar - 2 positive lymph nodes stage 3
8/14 started radiation and xeloda
1/15 completed chemo
2/15 Ned :)
3/15 reversal

Pita
Posts: 637
Joined: Wed Feb 10, 2016 3:48 pm
Location: So Calif

Re: OT- Should I try going gluten free?

Postby Pita » Mon Jul 18, 2016 12:30 pm

Best to you DE, anything is worth a try to stop the problems you're having!
70yo Fem DX: 1/21/2016 RC Stage IV-Nodules lungs
MSS-Kras Wild-Lynch Synd Neg-Lung Biopsy 1/27/16-Port 2/19/16
MRI 7/7/16 Endometrial polyp found, watching LAR 7/19/16, No Ileostomy, Stage ypT3 N1
CT 11/7/16: Most mets stable,1 shrunk,1 new??
CEA Tests: 1/21/16=20, 12/22/16=5.3, 1/20/17=4.8, 2/15/17=6.2
9/20/16-1/24/17 Folfuri & Avastin
#10/10 Done
PET/CT 2/10/16-1/31/17=Some shrunk & growth to 2, Avastin failing ??? :evil:
2/21/17 Folfuri & Avastin

DarknessEmbraced
Posts: 3579
Joined: Sat Nov 01, 2014 4:54 pm
Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

Re: OT- Should I try going gluten free?

Postby DarknessEmbraced » Tue Jul 19, 2016 9:13 am

I have been having lots of cramping(menstrual, back, and abdominal), bowel issues, gas, bloating even worse than usual because I started my period. I am going to stay gluten free for three more days. Even before my period I noticed no difference.
Diagnosed 10/28/14, age 36
Colon Resection 11/20/14, LAR (no illeo)
Stage 2a colon cancer, T3NOMO
Lymph-vascular invasion undetermined
0/22 lymph nodes
No chemo, no radiation
Clear Colonoscopy 04/29/15
NED 10/20/15
Ischemic Colitis 01/21/16
NED 11/10/16
CT Scan moved up due to high CEA 08/21/17
NED 09/25/17
NED 12/21/18
Clear colonoscopy 09/23/19
Clear 5 year scans 11/21/19- Considered cured! :)


Return to “Colon Talk - Colon cancer (colorectal cancer) support forum”



Who is online

Users browsing this forum: No registered users and 7 guests