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Hello!
I had a full colectomy with ileostomy two years ago, and now the biopsy after an ileoscopy + upper endoscopy showed that I’ve likely become gluten-intolerant. They are still waiting for a blood test to confirm it, but I take it that the likelihood this diagnosis won’t be confirmed isn’t high.
I really don’t know what to do, because my diet is very restricted as it is. I eat about half a dozen foods, and bread and tea biscuits are a staple. My stoma has a tendency to sink if I eat “heavy” foods. I can’t eat potatoes at all and rice only in chicken soup in limited quantity. So I assume that gluten-free substitutes made from potato flour or rice flour are out for me. Whole grain bread is also out because of ileostomy.
Moreover I’ve read that gluten is what gives elasticity to dough. So I wonder if gluten-free bread will be heavy by definition.
I wonder if anybody has had such issues.
Do people with celiac disease have to cut-out gluten completely out of their diet, or one can get away with just reducing the gluten intake?
I understand that the problem is that the immune system of the affected individuals attacks the small intestine. This sounds like an allergy to me. So I wonder if there isn’t some medication that could stop the immune system reacting to gluten. For instance, I used to have shingles, but taking Allegra soon helped me get rid of it, and after three years or so I didn’t even need to take Allegra anymore.
Does anybody have any advice?
Gluten-intolerant with ileostomy and restricted diet – need advice
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Re: Gluten-intolerant with ileostomy and restricted diet – need advice
this is a good read on your questions, sorry i can not type all of it out but very informative..
Celiac Disease: When Cutting Out Gluten Doesn’t Cut It
https://thelivewellclinic.com/celiac-di ... nt-cut-it/
and
Treatment of Celiac Disease
https://www.cureceliacdisease.org/treatment/
Celiac Disease: When Cutting Out Gluten Doesn’t Cut It
https://thelivewellclinic.com/celiac-di ... nt-cut-it/
and
Treatment of Celiac Disease
https://www.cureceliacdisease.org/treatment/
Re: Gluten-intolerant with ileostomy and restricted diet – need advice
Thirty years ago I seemed to be intolerant to gluten - terrible, chronic hives, so I went gluten-free. I don’t think that I had celiac/sprue and, whatever it was, my problem gradually went away. My point is, I developed a lot(!) of experience with gluten-free foods, and the gluten-free options were limited and terrible. For example, I made my own bread because gluten free bread was so hard to find. Each loaf weighted about twenty pounds, and was wet, and went moldy in short order, and tasted bad, and the texture was nothing like decent bread. Then a gluten-free store opened in town, and their stuff wasn’t a whole lot better. It was slim pickens...
Gluten-free is now the rage. My daughter has gone gluten-free, so I am aware of some of the present day options. Night and day. It seems as though they still use a lot of the same ingredients, such as tapioca flour, potato flour, rice flour, etc. But there have been great advancements, and the gluten-free foods are so much better. And there are so many more options available. I eat her foods, and with some of them it is hard to tell that they are gluten free. Yes, it is gluten that gives elasticity to dough, but there are gums and other ingredients that can serve the purpose, albeit probably not as effecitvely as gluten.
If you have the condition, you will need to be a good detective, as so much of our food has wheat and gluten buried in the ingredients. And it will take some experimentation with various products. But there are actually some surprisingly good alternatives out there, these days.
Good luck!
Gluten-free is now the rage. My daughter has gone gluten-free, so I am aware of some of the present day options. Night and day. It seems as though they still use a lot of the same ingredients, such as tapioca flour, potato flour, rice flour, etc. But there have been great advancements, and the gluten-free foods are so much better. And there are so many more options available. I eat her foods, and with some of them it is hard to tell that they are gluten free. Yes, it is gluten that gives elasticity to dough, but there are gums and other ingredients that can serve the purpose, albeit probably not as effecitvely as gluten.
If you have the condition, you will need to be a good detective, as so much of our food has wheat and gluten buried in the ingredients. And it will take some experimentation with various products. But there are actually some surprisingly good alternatives out there, these days.
Good luck!
Re: Gluten-intolerant with ileostomy and restricted diet – need advice
I saw the gastroenterologist today, and she said the blood test confirmed that I have celiac disease.
@ Sassie
Thank you very much for the useful links!
Could you, please, tell me which gluten-free breads you found almost undistinguishable from the good ones made with wheat flour, light and with decent texture?
The gastroenterologist also told me that the low fiber diet I’ve been following ever since my colectomy operation was supposed to be for the months after surgery, and that now I can eat any high-fiber foods, even nuts and raisins. This really surprised me. I thought the low-fiber diet was for life with ileostomy. Do people really resume eating high-fiber foods sometime after this surgery with no ill-effects?
@ Sassie
Thank you very much for the useful links!
Thank you so much for your encouraging message!BillGK wrote: 2019-08-14 06:18:29 Thirty years ago I seemed to be intolerant to gluten - terrible, chronic hives, so I went gluten-free. I don’t think that I had celiac/sprue and, whatever it was, my problem gradually went away. My point is, I developed a lot(!) of experience with gluten-free foods, and the gluten-free options were limited and terrible. For example, I made my own bread because gluten free bread was so hard to find. Each loaf weighted about twenty pounds, and was wet, and went moldy in short order, and tasted bad, and the texture was nothing like decent bread. Then a gluten-free store opened in town, and their stuff wasn’t a whole lot better. It was slim pickens...
Gluten-free is now the rage. My daughter has gone gluten-free, so I am aware of some of the present day options. Night and day. It seems as though they still use a lot of the same ingredients, such as tapioca flour, potato flour, rice flour, etc. But there have been great advancements, and the gluten-free foods are so much better. And there are so many more options available. I eat her foods, and with some of them it is hard to tell that they are gluten free. Yes, it is gluten that gives elasticity to dough, but there are gums and other ingredients that can serve the purpose, albeit probably not as effecitvely as gluten.
If you have the condition, you will need to be a good detective, as so much of our food has wheat and gluten buried in the ingredients. And it will take some experimentation with various products. But there are actually some surprisingly good alternatives out there, these days.
Good luck!
Could you, please, tell me which gluten-free breads you found almost undistinguishable from the good ones made with wheat flour, light and with decent texture?
The gastroenterologist also told me that the low fiber diet I’ve been following ever since my colectomy operation was supposed to be for the months after surgery, and that now I can eat any high-fiber foods, even nuts and raisins. This really surprised me. I thought the low-fiber diet was for life with ileostomy. Do people really resume eating high-fiber foods sometime after this surgery with no ill-effects?
Re: Gluten-intolerant with ileostomy and restricted diet – need advice
Whatever was causing me a problem is no longer a problem. I was told by a specialist at Mayo, at the time, and this was a very long time ago,that my problem could possibly go away, and it did after a few years. So I eat things with gluten. I was never tested for sprue, but I must not have it, as it does not go away according to my understanding.
I asked my daughter what she likes, and this is what she wrote:
“I like Trader Joe’s store brand of bread—their whole grain sandwich bread and their plain bagels. Both better toasted. If she has no tj’s, Udi’s millet chia is very good also. Any Udi’s is acceptable and widely available. Check the freezer case of the grocery store.”
I asked my daughter what she likes, and this is what she wrote:
“I like Trader Joe’s store brand of bread—their whole grain sandwich bread and their plain bagels. Both better toasted. If she has no tj’s, Udi’s millet chia is very good also. Any Udi’s is acceptable and widely available. Check the freezer case of the grocery store.”
Re: Gluten-intolerant with ileostomy and restricted diet – need advice
Whatever was causing me a problem is no longer a problem. I was told by a specialist at Mayo, at the time, and this was a very long time ago,that my problem could possibly go away, and it did after a few years. So I eat things with gluten. I was never tested for sprue, but I must not have it, as it does not go away according to my understanding.
I asked my daughter what she likes, and this is what she wrote:
“I like Trader Joe’s store brand of bread—their whole grain sandwich bread and their plain bagels. Both better toasted. If she has no tj’s, Udi’s millet chia is very good also. Any Udi’s is acceptable and widely available. Check the freezer case of the grocery store.”
I don’t think that her breads are indistinguishable. I have had them and I thought that they were good, especially in comparison to what I used to have to deal with when I was going gluten free. And best toasted, as she notes. What I was referring to was other gluten free foods that she eats. Like donuts and other pastries. Actually, my wife often makes some gluten free pastry-type desserts when my daughter visits, and these are really good, too. Not quite as light and moist, but they work for me!
I asked my daughter what she likes, and this is what she wrote:
“I like Trader Joe’s store brand of bread—their whole grain sandwich bread and their plain bagels. Both better toasted. If she has no tj’s, Udi’s millet chia is very good also. Any Udi’s is acceptable and widely available. Check the freezer case of the grocery store.”
I don’t think that her breads are indistinguishable. I have had them and I thought that they were good, especially in comparison to what I used to have to deal with when I was going gluten free. And best toasted, as she notes. What I was referring to was other gluten free foods that she eats. Like donuts and other pastries. Actually, my wife often makes some gluten free pastry-type desserts when my daughter visits, and these are really good, too. Not quite as light and moist, but they work for me!
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To Dream a Dream
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Re: Gluten-intolerant with ileostomy and restricted diet – need advice
My favorite GF bread is Schar Gluten Free Artisan white bread. (They also make a whole grain variety I cannot tolerate due to its many sharp seeds.) Available at some of our larger, local grocery stores. Manufactured by Dr. Schar USA, Inc., Lyndhurst, NJ 07071 in Swedesboro, NJ.
Crohn's Dx '66 (perforated ileum)
Multiple Bowel Resections
Ileo '77 Revision '85
Celiac Dx
Multiple Bowel Resections
Ileo '77 Revision '85
Celiac Dx
Re: Gluten-intolerant with ileostomy and restricted diet – need advice
"The gastroenterologist also told me that the low fiber diet I’ve been following ever since my colectomy operation was supposed to be for the months after surgery, and that now I can eat any high-fiber foods, even nuts and raisins. This really surprised me. I thought the low-fiber diet was for life with ileostomy. Do people really resume eating high-fiber foods sometime after this surgery with no ill-effects?"
I've had my ileostomy for 45 years (since age 15)and I've been vegetarian or mostly-vegetables/fruits/grains (so high fiber) much of that time. I'm lucky in that I can eat most of what I want without problems. There area few things that I have to be careful with-- you will find things that give you problems and things that don't. One way is to add small amounts of new foods one at a time so that if you have a problem, you will know what caused it. I think a lot of people have a "watch-out-for" list. I can eat most veggies raw or cooked. Things that give me problems are fruit skins(especially apple), eating an apple and raw carrot in the same day, too many nuts at one sitting,and pineapple. I eat beans, raw and cooked broccoli and spinach, and salads without problems. Everyone is different though, so go slowly and add foods in a planned way.
I've had my ileostomy for 45 years (since age 15)and I've been vegetarian or mostly-vegetables/fruits/grains (so high fiber) much of that time. I'm lucky in that I can eat most of what I want without problems. There area few things that I have to be careful with-- you will find things that give you problems and things that don't. One way is to add small amounts of new foods one at a time so that if you have a problem, you will know what caused it. I think a lot of people have a "watch-out-for" list. I can eat most veggies raw or cooked. Things that give me problems are fruit skins(especially apple), eating an apple and raw carrot in the same day, too many nuts at one sitting,and pineapple. I eat beans, raw and cooked broccoli and spinach, and salads without problems. Everyone is different though, so go slowly and add foods in a planned way.
Re: Gluten-intolerant with ileostomy and restricted diet – need advice
I ate gluten-free for many years because I thought it'd help my overall health. I debate going back to it but find it challenging right now. There are several authors who promote this. One is Dr. Stephen Gundry but his "diet" has many restrictions. It's about avoiding "lectins" and that includes peas and legumes. https://www.familycircle.com/health/wei ... t-healthy/ Also look up Dr. Perlmutter who has books with recipes.
I like Sami's Gluten-Free bread the best. I don't see it in many stores. We have a local organic store called Mom's. They've changed the ingredients and added sugar or something like that so now I avoid it -- I try to avoid foods that cause inflammation and for me, sugar and dried fruits are culprits. Many like Udi's -- again, it has corn syrup or sugar or both. You can contact Sami's and see where their bread is sold. They have many assortments, bagels, etc.
It's a good question and I wish you much luck! Let us know what you find.
Diane C.
I like Sami's Gluten-Free bread the best. I don't see it in many stores. We have a local organic store called Mom's. They've changed the ingredients and added sugar or something like that so now I avoid it -- I try to avoid foods that cause inflammation and for me, sugar and dried fruits are culprits. Many like Udi's -- again, it has corn syrup or sugar or both. You can contact Sami's and see where their bread is sold. They have many assortments, bagels, etc.
It's a good question and I wish you much luck! Let us know what you find.
Diane C.
Diane C
2000 MACE
2002 Colostomy
2018 Above + anus removed; Ileostomy
2020 Scar tissue removed
2000 MACE
2002 Colostomy
2018 Above + anus removed; Ileostomy
2020 Scar tissue removed
Re: Gluten-intolerant with ileostomy and restricted diet – need advice
Thank you so much for your replies!!
I'll see what I can find in the local stores. It’s so helpful to have some pointers where to start. I’ll look into the ingredients of different products available and try several brands one at a time. I’ll let you know what I found once I have established a permanent gluten-free diet.
I’m inclined to be very careful about trying any fiber foods, but it’s very encouraging to know that one can try a little of some vegetables spaced out with softer foods.
Again many, many thanks!
I'll see what I can find in the local stores. It’s so helpful to have some pointers where to start. I’ll look into the ingredients of different products available and try several brands one at a time. I’ll let you know what I found once I have established a permanent gluten-free diet.
I’m inclined to be very careful about trying any fiber foods, but it’s very encouraging to know that one can try a little of some vegetables spaced out with softer foods.
Again many, many thanks!
Re: Gluten-intolerant with ileostomy and restricted diet – need advice
You poor thing figuring you had to eat low fiber for ever. It really is only while you are healing. I've had my ileo for 35 years and eat pretty much anything. Some fibrous things just aren't worth the hassle to me. Celery (only meant to stir Bloody Mary's anyway IMHO!), water chestnuts, most apples .... but if I really want something, I'll eat a bit of it to get the flavor. Chew very carefully and get enough fluid. Summer is fresh veggie and fruit (tomatoes are fruit) season and I'm not missing out while it tastes good! I do overcook some veggies to make sure they are digestible but small price to pay for the taste. I like spiralized squashes or sweet potatoes as a pasta replacement.
You've gotten good advice here. Just experiment a bit and see.
You've gotten good advice here. Just experiment a bit and see.
Re: Gluten-intolerant with ileostomy and restricted diet – need advice
Hello!
I have successfully established a gluten-free diet!
I buy Against the Grain baguettes made from tapioca flour. I find that they taste well, definitely don’t need toasting, aren’t moist or heavy. They are rather expensive, though, at $8 per baguette, and can become spoilt way before the sold by date, even if kept in the fridge. They also come in buns, but I only buy baguettes now because they keep much better. Of course, I also look at the date on each baguette (currently eat those with the 10/2020 sell by date, bought the first with the 11/2020 date today). I’ve also found that the store matters. One branch of the same supermarket chain has much fresher selection than another and keeps better in general!
I also like Snickerdoodle and Enjoy Life cookies. They are gluten-free, non GMO and made with all-natural ingredients. Moist, but not clammy or heavy, and taste nice.
However, as I did the blood tests ordered by the gastroenterologist, I discovered that while my transglut number has gone significantly down, I’ve become low on zinc and folate (B9), now that I no longer eat wheat-based bread and cookies. I’d prefer to adjust my diet rather than to take supplements, if at all possible, and it looks like walnuts are a first-rate source of both zinc and folate. I used to eat them every day before my ileostomy. I’ve tried successfully some high-fiber foods since first posting in this thread (raspberries, strawberries; skinned apples, pears, tomatoes and peaches – didn’t try unskinned). Still nuts differ a lot from those soft foods. I wonder if anyone tried them with ileostomy? Do you think I can try it if I eat just one bit by bit interspacing it with otherwise low-fiber dinner and of course chewing it thoroughly, or it’s too risky? My operation was 2 and ½ years ago.
What would you advise?
I have successfully established a gluten-free diet!
I buy Against the Grain baguettes made from tapioca flour. I find that they taste well, definitely don’t need toasting, aren’t moist or heavy. They are rather expensive, though, at $8 per baguette, and can become spoilt way before the sold by date, even if kept in the fridge. They also come in buns, but I only buy baguettes now because they keep much better. Of course, I also look at the date on each baguette (currently eat those with the 10/2020 sell by date, bought the first with the 11/2020 date today). I’ve also found that the store matters. One branch of the same supermarket chain has much fresher selection than another and keeps better in general!
I also like Snickerdoodle and Enjoy Life cookies. They are gluten-free, non GMO and made with all-natural ingredients. Moist, but not clammy or heavy, and taste nice.
However, as I did the blood tests ordered by the gastroenterologist, I discovered that while my transglut number has gone significantly down, I’ve become low on zinc and folate (B9), now that I no longer eat wheat-based bread and cookies. I’d prefer to adjust my diet rather than to take supplements, if at all possible, and it looks like walnuts are a first-rate source of both zinc and folate. I used to eat them every day before my ileostomy. I’ve tried successfully some high-fiber foods since first posting in this thread (raspberries, strawberries; skinned apples, pears, tomatoes and peaches – didn’t try unskinned). Still nuts differ a lot from those soft foods. I wonder if anyone tried them with ileostomy? Do you think I can try it if I eat just one bit by bit interspacing it with otherwise low-fiber dinner and of course chewing it thoroughly, or it’s too risky? My operation was 2 and ½ years ago.
What would you advise?
Re: Gluten-intolerant with ileostomy and restricted diet – need advice
I eat pretty much everything (nuts, popcorn, veggies, fruit with skin on it) including walnuts. Chew well, try a few things at a time and in small amounts (as others have said).
If you are eating nut butters (peanut, almond etc) then that isn't a whole lot different from chewing nuts really well. You could also put walnuts in a blender and create walnut butter.
I would suggest getting a referral to a dietitian to help you address your deficiencies. I'm not sure that you can overcome the deficiencies with diet alone if you are having trouble absorbing the nutrient. I was low on zinc and vitamin D when my CD was active, and had to take pretty high doses to get back to normal levels.
If you are eating nut butters (peanut, almond etc) then that isn't a whole lot different from chewing nuts really well. You could also put walnuts in a blender and create walnut butter.
I would suggest getting a referral to a dietitian to help you address your deficiencies. I'm not sure that you can overcome the deficiencies with diet alone if you are having trouble absorbing the nutrient. I was low on zinc and vitamin D when my CD was active, and had to take pretty high doses to get back to normal levels.
UC Diagnosis 1981
J-Pouch 1988-2002
Permanent ileostomy 2002-now
Crohn's Disease Diagnosis - 2015
J-Pouch 1988-2002
Permanent ileostomy 2002-now
Crohn's Disease Diagnosis - 2015
Re: Gluten-intolerant with ileostomy and restricted diet – need advice
I have had my ileostomy for nearly 9 years. My diet is significantly restricted and I have tried to slowly reintroduce some high fiber foods with disastrous results. I cannot eat vegetables, fruits, rice, pasta and beans. I have difficulty with bread products which makes me too thick. The hardest is thinking I may never have another salad with veggies. I have spent years vegetarian but no longer. I have experienced multiple blockages and total ileus. I hate living on TPN so I live with restrictions. I too was told in time an ostomate could eat everything. I only share this not to discourage you but to not disappoint you if it turns out differently. Life is still worth living!
Ileostomy: 2010, hernias 2011, 2012, revisions 2012, 2013, 2015, 2016-19 many blockages and ileus.
Ileostomy: 2010, hernias 2011, 2012, revisions 2012, 2013, 2015, 2016-19 many blockages and ileus.
Re: Gluten-intolerant with ileostomy and restricted diet – need advice
Thank you very much for your replies!
Yes, I understand that everybody is different. I’ll start very slow, with just one piece of a walnut spread throughout dinner, and then wait 48 hours before trying the same again.
(I don’t have trouble absorbing B9 or zinc. Before I switched to a gluten-free diet, I had normal levels of both. The problem is that since I no longer eat wheat-based products I don’t consume enough food rich in these substances.)
@ Lerbus
I hear you! My diet is also very restricted, in my case because many foods make my stoma sink below the opening in the wafer and cause leaks. But, yes, of course, life is still worth living!
Yes, I understand that everybody is different. I’ll start very slow, with just one piece of a walnut spread throughout dinner, and then wait 48 hours before trying the same again.
(I don’t have trouble absorbing B9 or zinc. Before I switched to a gluten-free diet, I had normal levels of both. The problem is that since I no longer eat wheat-based products I don’t consume enough food rich in these substances.)
@ Lerbus
I hear you! My diet is also very restricted, in my case because many foods make my stoma sink below the opening in the wafer and cause leaks. But, yes, of course, life is still worth living!