Hi Everyone! I know this is an old topic, but i want to see if ANYONE has the same experience as me. I had my jpouch surgery 13 years ago and thought having diarrhoea all the time and FOUL (and I mean FOUL as in, could have been a DEAD RAT inside me) smelling stools was completely normal for people with Jpouch procedure... I always had bad gas which was worse or better, depending on what I ate... 

Then 2 years ago I got a bad kidney infection and developed burning pain around my kidney area and blood in my urine (Microscopic blood)... So to cut a LONG story short, I saw 2 Urologists, my bowel specialist, 2 Gynaecologists, and a Nephrologist, ALL of which said I was 'fine'... 

Im STILL getting the burning back pain on and off (every 3-6 weeks), but i have basically CUT OUT Wheat/ Gluten 3 weeks ago and my bowel started actually becoming quite 'normal...' also VERY little gas...

I had a SMALL bit of wheat about 4 days ago and i have DESPERATE Diarrhoea the past 3 days and again, the burning back pain is back... 

Im beginning to think I must be SEVERELY Coeliac.... / Celiac.... ANYONE HAVE A SIMILAR EXPERIENCE?? Im so frustrated with the pain ! It's burning and burning and really getting me down!

PLEASE HELP or share your experience!! Thanks xxx

Hi,

I. Gluten free and dairy free as well and it makes a huge difference. I still have the off day where I still need to drink immodium but it's much better then it used to be. I am also waiting to do a test to find out if I have acid reflux or a bacterial infection. I have a lot o pain so that cuts out môre food. It makes it difficult sometimes but if it means I have no pain and less frequent trips to the loo I am willing to do it. I am still learning every day as well and some days suck and makes you wish you were normal. But you do what is best for you. 

I spent years (I mean from 1991-2005) practically gluten free (pretty hard to do in Paris!!!) and my body loved me...Then I got married and realized that French people consider gluten to be the basis of all food! They cannot have a meal without bread (granted their bread is great)...

Now I find it hard to kick the habit...I go for periods of a few days to weeks fully gluten free and love myself and my pouch then I fall off of the wagon and remember what hell is like....

For now, I am bloated, gassy, swollen etc...meaning I have been indulging...

I do not have celiac but do know that my pouch and body prefer me without the bread/pasta.

Experiment and see what works for you, in what quantities and how often...the nice thing about cooking and baking is that you can make anything that you like...and it is fun! (or disastrous...)

By the way, they have a sorghum cake/muffin to die for here...I will try to find the recipe for you if I can.

Sharon

Why is gluten free so expensive! 

A loaf of gluten free bread is almost four bucks.   And half the size of a regular loaf. I can't or couldn't afford it on a regular basis .  I don't know if other gluten free products are as much .  I do buy gluten free noodles.  It's a hard diet to follow.   Just one man's opinion . 

Richard . 

HI Richard, I am just starting a modified vegan diet. Right now, because I have access to fresh farm produce, its inexpensive but in the winter the price will go up.  I also see how expensive gluten free products are.  For me, feeling better physically makes me feel better emotionally and I've come to terms with the fact that spending more money on food is part of my self care.  I also feel that more good food means less medication.  I keep away from gluten and I rarely buy gluten free bread. I don't really like it that much.  I'm trying different recipes that eliminate the "forbidden" foods and I'm feeling significantly healthier.  I hope that my experience helps you in some way. 

All the best,

Joanne

Hello and oh my! I didn't read the whole thread.  Thank you everyone for your input on gluten free. I have been reading Robynne Chutkan's book, The MicroBiome Solution. I can't put it down.  It also recommends eliminating all processed foods, foods with gluten, and dairy (except goat or sheep).  I have had my pouch since 2001 - I am 71 years old - It rarely feels right and I've accepted that alcohol doesn't work for me, nor does chocolate, candy, ice cream, etc.  This book, and another one called The MicroBiome diet talks about the effect of "bad" bacteria in your digestive tract and how it can affect mood, digestion, thinking, inflammation, and a whole host of autoimmune diseases.  I have heard that after you have you pouch for a while, the cells begin to take on the characteristics of the cells of a colon and the pouch behaves more and more like a colon.  First, I wonder if that is indeed true. Second, without a colon, how do we take care of our micro biome, given it resides in the colon.  By the way, I am eating almost no cow milk products, minimal meat and tons of vegetables. My pouch has never been happier.

Joanne

Hey all. 

I could never be able to stick to a diet.  Even if it meant better health.   Just not able to do it.  And personally I was running out of time.  To do all the stuff you have to do while having a pouch means  sticking to your guns.  I tried while being sick with the pouch but it was too disabling and distracting.  Just not in the cards for me.  I applaud anyone who sticks with it and it works.  But it is hard work.  And neverending.  

Good luck.  Gluten free is out there if you seek it.  I still should stick to it because it still affects me even though everything is gone.  But I'm having too much fun making up for all the years I couldn't eat certain foods because of the effects.  Most of the time it has a short trip and not as much as an affect now. 

Richard . 

I am also gluten free for about 6 months and cannot BELIEVE THE DIFFERENCE IN MY BOWEL! I truely now believe UC and gluten intolerance/autoimmune diseases is definitely linked!

Richard, if you have gluten intolerance or sensitivity, it affects your entire small intestine, not just your ileal pouch. So, "everything" is not really gone, just your troublesome pouch. Not all gluten intolerance is the same as celiac disease, and there are varying degrees (just like lactose intolerance). You may tolerate small amounts and be OK, and that makes you fortunate.

However, if someone has celiac disease, continuing to consume gluten will damage more and more of the small bowel. This can potentially advance to being unable to absorb enough nutrients to survive. In this case, it is not a matter of being able to follow a diet. 

They used to think that you could only have celiac disease if you had it from a young age, but they now find you can develop (manifest) the disease later in life.

Jan

I have had the test for celiac and the results were inconclusive.  Recently, I was diagnosed with CLL, chronic lymphocytic leukemia. I have a regular and integrative oncologist. The integrative oncologist recommended a few books on the microbiome (The Microbiome Solution, The Microbiome Diet and Prime).  I started changing my diet by eliminating a lot, but not all gluten and all dairy. I also cut back dramatically on sugar.  I lost weight but feel so much better. My pouch has been more manageable, fewer accidents, less bloating and cramping; fewer bowel movements.  I have had moderate to severe pouchitis, Dx by Dr. Shen at CCF. My recent pouchoscopy showed no sign of disease and and am so grateful.  I attribute my improved health to cutting back on gluten, cutting out dairy (even with lactic) and sugar.  

Jan Dollar posted:

Richard, if you have gluten intolerance or sensitivity, it affects your entire small intestine, not just your ileal pouch. So, "everything" is not really gone, just your troublesome pouch. Not all gluten intolerance is the same as celiac disease, and there are varying degrees (just like lactose intolerance). You may tolerate small amounts and be OK, and that makes you fortunate.

However, if someone has celiac disease, continuing to consume gluten will damage more and more of the small bowel. This can potentially advance to being unable to absorb enough nutrients to survive. In this case, it is not a matter of being able to follow a diet. 

They used to think that you could only have celiac disease if you had it from a young age, but they now find you can develop (manifest) the disease later in life.

Jan

I think I am close to it or have it. Celiac disease. Really don't want to know. I have problems associated with it. My dermatologist suggested I do more tests but I didn't. 

A gluten free diet is an expensive diet. Check prices on bread that are gluten free. Over 4 bucks for a small loaf. And it's not very fresh. Soft. I just quit eating bread. Biggest contributer in my diet. 

Richard. 

I eat very little in the way of flour based products, rarely buy prepared or packaged foods and love to bake and cook...not everyone's case. I get good quality, cheap goat's and sheep's cheese here...just our culture..ditto for rye breads, sorghum breads and other unusual flours...our flour is different (both hard and soft flour) in France (5-9% gluten content) as opposed to American flour (up to 15%) so there are a lot fewer allergies here. It means that if you find a bakery in N.A. that makes French baguettes and pastries with 'real French flour' you may suffer less if you just have a sensitivity and not full blown celiac.

Stuff that is manufactured for a small or select group will always be more expensive due to production costs...until it becomes mainstream...And then the price will either go down thanks to offer/demand or it will stay high because the manufacturer is gouging and making huge profits off of you.

Write to them on their facebook page, send messages...your opinion counts these days.

The more people consume gluten-free products the more choices you will have...those industrial corporations are out to make money...So if you get consumer groups that make noise they will listen. (or drop the whole line because it is more trouble than it is worth!)

Farmers are sensitive too...see if a local sheep or goat farmer sells directly from their farm to the public...better quality cheeses, much cheaper than in stores...better for them and you. 

There are always ways to source products if you can get a like-minded group together to buy them.

Sharon

Richard, have you considered making your own bread/ goodies, I agree it's intimidating at first but I've actually never purchased any "marketed" gluten free products. The flour is super cheap and you can find it at Costco!! I bake while I watch TV and then freeze loaves for the upcoming week 

Whoa. No. I'm way too lazy. Truth be told. 

Gluten free for 6 wks and no antiibiotics or Imodium for 1 week! That’s the first time in 14 yrs!!!!!! I lost 15 lbs of bloat and my body feels risen from the grave. I’ve had chronic pouchitis since my j pouch creation and I was so uncomfortable and sick that o nearly threw in the towel and was considering reversal. No doctor told me to try it, I just decided to give at whirl. It’s crazy how much better I feel. I am so excited to hear that some pouchers are feeling better being gluten free❤️