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Gluten Free after ileostomy

Posted by rosebud621, on Fri Aug 21, 2015 4:19 pm
Do you think Gluten free helps after chronic and now an illeostomy . I have read they are seeing a connection with Wheat and IBS !< >
Reply by Van guy, on Mon Aug 24, 2015 11:25 pm

Hi Rosebud, I had a strong reaction to wheat show up after a Crohns flare-up 15 years ago, and I've stayed away from it since. The current gluten free craze is certainly an advantage for me. Quite a few of the people I'm close to are avoiding wheat as well. I don't know whether wheat exacerbates my Crohns, but I know it gives me bad gas, and now that I have an ostomy that's a dangerous thing to be avoided.   

Reply by pete b, on Tue Aug 25, 2015 2:56 am

Hi Rosebud......I've had an illeostomy, and have problems with my belly swelling every day and going flat again every night,  I tried a wheat/gluten free dieit for several weeks ......made absolutely no difference at all..

But everyone is different!

Pete b

Past Member
Reply by Past Member, on Tue Aug 25, 2015 8:19 am

Hi Rosebud, there is definitely a link between IBS and wheat.  I had surgery for cancer and a permanent urostomy in April 2015 and had so much trouble with my bowels handling the food I was eating that I went to a dietician to seek help.  She put me on the FODMAP diet that works really well for people with IBS.  There is lots on the internet about the FODMAP diet.  It was created out of the Monash University in Australia.  Although I don't suffer from IBS but I do have IBS-like symptoms to wheat (and so much more) this diet has at least allowed me to return to work.  Hope that you find some relief with it too.  Good luck!

Reply by california nurse, on Tue Aug 25, 2015 12:29 pm

I think it's worthwhile for all persons with CUC, Chrohn's, or IBS to be tested for celiac disease and wheat sensitivity; the crossover seems to be much higher than for persons who have no digestive disorders. However, I would NEVER recommend a true gluten-free diet without a strong indication that it was medically necessary. Not only is a GF diet quite restrictive, it's also expensive, and most gluten-free substitutes are neither as tasty nor as nutritious as their gluten-containing alternatives.

My husband who has an illeostomy as a result of CUC did not have any acute digestive symptoms of celiac disease. He requested to be tested for celiac because he has several relatives with the disease. I HAD noticed some  disconcerting signs that someting was wrong: primarily generalized fatigue and increased shortness of breath when hiking, especially at higher altitudes. Besides a definite positive for celiac disease, his labwork also revealed a  protein deficiency (pre-albumin is a better test than albumin) and anemia. 

Even though the family cook (me!) was a little slow to get the hang of a gluten-free kitchen, GF marketing, and GF cooking, he noticed a definite positive change in how he felt within 4- 6 weeks. GF eating is ESSENTIAL for those with celiac disease, but people who have a wheat/gluten sensitivity can be less vigilant about allowing small amounts of wheat/gluten in their diets. (much like people who are lactose intolerant can enjoy small amounts of dairy while controlling their symptoms.)

Hope this is helpful.



Reply by stillmovin, on Thu Aug 27, 2015 12:32 pm

Hello out there iliostomy friends,

After years of bowel issues...a colostomy in 2005...changed to an iliostomy in 2011, gluten free has given me a life that I never knew.  I can wake up in the morning, no headaches and just a feeling of better.  I no longer have bloating or pain.  I belive for me...if gluten would have been removed from my diet when I was younger, I might not have an ostomy at all.

I suggest anyone who is having stomach or bowel issues...get rid of the wheat.  It will take at least a year to rid your body and repair your gut.

Get yourself set up with a naturopath, if you can.

After 58 years of being ill, sick, vomitting, painful bowel movements, my life is healthy.  A feeling of well being is the most wonderful thing in life!

Life can be better...go find it.


Reply by ostomygirl207, on Fri Jul 20, 2018 6:54 am

Linda I agree with you....when I was a child they kept pushing BRAN CEREAL BRAN THIS AND THAT....OMG  I was killing myself trying to do what the doctors said....all the time I was CELIAC person.....I am gluten free now but the damage is already done...I have an ileostomy with severe Rectal stump disease....Colitis....with bleeding and pain every day....the younger you go GLUTEN FREE the better for your body......I have cheated here and there had a piece of cake or something.....and now I wonder if it takes a year to get over that cheat day......OMG.....well I will try not to do that again...

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