Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Anyone With Ncgs & Ibs-C? How Are You Coping?


spirit22

Recommended Posts

spirit22 Newbie

I was diagnosed with IBS-constipation about 40 years ago. Last year, my bowels changed and I went from constipation to diarrhea. This May (2014) I underwent an endoscopy for celiac along with a 10-year re-check colonoscopy (my first one was normal except for evidence of IBS). The prep was agonizing for me and I've yet to feel healthy since those two procedures done in early May. Within a week after the procedures (and while being gluten-free), my bowels returned to constipation. I'm finding it extremely hard to find a good diet that is gluten-free while also having enough fiber in it to assist with the constipation. Is there anyone else who suffers with both of these situations? If so, what are you eating?

 

Any help is much appreciated!


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



cyclinglady Grand Master

I am allergic to dairy (mild) and as I have either aged or because of celiac disease, I am also lactose intolerant. Milk will mess with both my nose and gut. Constipation is one symptom of the intolerance. Are you consuming milk? Eating lots Fiber-filled veggies? I eat them for breakfast!

spirit22 Newbie

I am allergic to dairy (mild) and as I have either aged or because of celiac disease, I am also lactose intolerant. Milk will mess with both my nose and gut. Constipation is one symptom of the intolerance. Are you consuming milk? Eating lots Fiber-filled veggies? I eat them for breakfast!

Hi cylinglady ~

 

For the first three weeks of eating gluten-free, I wasn't aware that I was becoming badly constipated. :(  I found out the hard way that the rices have very little fiber in them & that was mostly what I was eating, along with rice pastas. This week, however, I have been eating tons of veggies & fruit, along with flaxseed & taking a probiotic that is supposed to be good for people with IBS. I'm also drinking a lot more water than normal, which I hope will also help in elimination. As for dairy, I haven't drank milk in years. Nor do I eat ice cream or yogurt anymore. Cheese is a downfall for me but I do not eat it often and when I do, I eat goat or sheep cheese instead of cow. I seem to tolerate that a bit better. But like I said, I don't eat cheese often. I am making sure to eat only good oils (olive & avocado). I'm trying to stay away from corn tortilla chips but have found some Kettle chips made with avocado oil. I may have eaten a few too many the other day because I some cramping going on. :(

 

Can you see anything in my diet so far that I should delete or anything I might need to add? I am not a big meat-eater, so my diet is pretty light.

 

Thanks so much for your post!

cyclinglady Grand Master

What does "often" mean, regarding the cheese? Milk proteins for cow, milk or sheep are very close. Stop all cheese for now.

I would suggest cutting out all grains temporarily and do not eat processed foods. Keep a journal to record foods and symptoms. Fill up on fats, proteins like eggs if you do not eat meat, veggies and fruit.

Good luck!

spirit22 Newbie

What does "often" mean, regarding the cheese? Milk proteins for cow, milk or sheep are very close. Stop all cheese for now.

I would suggest cutting out all grains temporarily and do not eat processed foods. Keep a journal to record foods and symptoms. Fill up on fats, proteins like eggs if you do not eat meat, veggies and fruit.

Good luck!

To answer your question, I eat a small amount of cheese once a week. Thanks for your suggestions. I've added in high-fiber, exercise, and tons of water over the past four days & it seems to be helping with the IBS-C problem. My stomach is feeling much better after having gone gluten-free, for which I am very thankful!

 

Again, thanks for your posts & suggestions!  

FruitEnthusiast Enthusiast

C is my problem too. Make sure you get enough insoluble fiber and not too much soluble fiber, big difference. I follow the drink half your weight in oz philosophy for water.

 

I would stay away from processed foods, especially potato chips - too hard to digest. Everyone's different, but they gave me a big problem when I tried them, of course I ate way too many...

 

Glad you're feeling better :)

spirit22 Newbie

C is my problem too. Make sure you get enough insoluble fiber and not too much soluble fiber, big difference. I follow the drink half your weight in oz philosophy for water.

 

I would stay away from processed foods, especially potato chips - too hard to digest. Everyone's different, but they gave me a big problem when I tried them, of course I ate way too many...

 

Glad you're feeling better :)

FruitEnthusiast ~

 

Thanks! I haven't heard about the water philosophy you noted but it sounds like something good to implement. Like you, I am staying away from processed foods & now know (experienced it the hard way) to stay away from the chips. I like salt better than sweets, so the chips have been hard to give up. Like you, once I start eating them I have no discipline. :( 

 

Thanks for posting your suggestions. I really appreciate it!


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



Sammykins Newbie

C is my problem too. Make sure you get enough insoluble fiber and not too much soluble fiber, big difference. I follow the drink half your weight in oz philosophy for water.

That's certainly the case for most people, but interestingly, some people with IBS/NCGS do better with soluable vs insoluble fibre. It's a matter of working out what's best for you!

I find certified gluten-free oats are really good. If I go too long without them, things get worse for me. Dried fruit is another good source of fibre, especially prunes (dried plums), figs, apricots and dates. Getting enough water, as others have said, is also a big one.

FruitEnthusiast Enthusiast

That's certainly the case for most people, but interestingly, some people with IBS/NCGS do better with soluable vs insoluble fibre. It's a matter of working out what's best for you!

 

Ah ha... good to know, thanks. I think it's interesting that in all the years I've had C, no doctors have ever discussed the importance of not just getting enough fiber, but the right kind, or the right balance of soluble and insoluble. All I've ever heard is get enough fiber! It's not that simple, I'm so glad to know that now. Until recently I didn't even know the difference!

spirit22 Newbie

That's certainly the case for most people, but interestingly, some people with IBS/NCGS do better with soluable vs insoluble fibre. It's a matter of working out what's best for you!

I find certified gluten-free oats are really good. If I go too long without them, things get worse for me. Dried fruit is another good source of fibre, especially prunes (dried plums), figs, apricots and dates. Getting enough water, as others have said, is also a big one.

Sammykins ~

Thanks so much for your post. It's interesting about the soluble vs insoluble fiber. I receive info from an IBS site & sometimes drink their fennel tea & also take their acacia powder (soluble fiber). The gal that runs the site swears that IBS people need soluble fiber and very little insoluble fiber. She's been purporting this for years. All docs I have been to (and most of what I've found online) purport the opposite, that we need more insoluble fiber. I've always wondered about this.

 

About a year ago, I changed my diet over to consume more soluble fiber, following that website's recommendation. About 3-5 months into eating that way, my bowel habits began to change and the constipation subsided. Yet at that point, I was having just as many abdominal issues but on the other side of the spectrum. That's when I became concerned that maybe something was going on that I wasn't aware of. I also started having pain around my small intestine area after meals and began to suspect celiac. Now that I am gluten-free (a little over a month now), I no longer have the small intestine pain but am having more problems with my bowel.

 

I agree with you that some people may feel better with more insoluble fiber and some may do better with more soluble fiber. Each person must try it out to see how they feel.  

 

The last few weeks, I've been consuming more insoluble fiber and am still having problems with constipation. It might be nice to work with a dietician but I can't locate one locally and my gastro's office is of no help (it takes over 3 months to get in for a consultation appt.). At this point, I'm wondering if I should add in more soluble fiber to see if that might help or hinder my constipation problems. It seems like a neverending quandry. :(

 

Thanks again for your post. I hope you continue to do well.

spirit22 Newbie

Ah ha... good to know, thanks. I think it's interesting that in all the years I've had C, no doctors have ever discussed the importance of not just getting enough fiber, but the right kind, or the right balance of soluble and insoluble. All I've ever heard is get enough fiber! It's not that simple, I'm so glad to know that now. Until recently I didn't even know the difference!

FruitEnthusiast ~

 

I agree with you wholeheartedly! The majority of the medical field is always touting "more fiber". One thing I wonder about doctors is how much training they receive (or how much they read) on nutrition. And dieticians/nutritionists seem to be a small crowd in the medical field. I truly wish we had more of them!

  • 2 weeks later...
Sammykins Newbie

I think what happens is that doctors these days are so used to seeing people who have constipation due to a poor quality diet (highly processed, low fibre, little fruit and vegetables) and a sedentary lifestyle. For these people, generic, simple-to-understand information does the trick. We however have more complicated digestive systems.

When I first saw my doc 10 years ago for digestive issues I received the same information despite clear evidence that there was a food intolerance issue going on. She didn't even bother to ask me about my diet (already high fibre) or lifestyle, yet alone run any tests. Hence suffering for years before realising what the problem was by myself! Now of course she wants me to do a gluten challenge, yeah, no thanks...

Anyway, I remembered one other thing that helps a lot. Make sure you are getting enough healthy fats in your diet - I've been told to shoot for 30% TDI. It's like a errr, digestive lubricant. Ok, crawling back under the covers now, blushing.

spirit22 Newbie

I think what happens is that doctors these days are so used to seeing people who have constipation due to a poor quality diet (highly processed, low fibre, little fruit and vegetables) and a sedentary lifestyle. For these people, generic, simple-to-understand information does the trick. We however have more complicated digestive systems.

When I first saw my doc 10 years ago for digestive issues I received the same information despite clear evidence that there was a food intolerance issue going on. She didn't even bother to ask me about my diet (already high fibre) or lifestyle, yet alone run any tests. Hence suffering for years before realising what the problem was by myself! Now of course she wants me to do a gluten challenge, yeah, no thanks...

Anyway, I remembered one other thing that helps a lot. Make sure you are getting enough healthy fats in your diet - I've been told to shoot for 30% TDI. It's like a errr, digestive lubricant. Ok, crawling back under the covers now, blushing.

Sammykins ~

 

I definitely understand your stance against doing a gluten challenge! From my experience, medical docs don't seem to know much at all about nutrition. I don't remember ever having a doctor attempt to discuss food with me. When I spoke to my primary this week, I let her know that I was experiencing constipation (again) after I had been gluten-free for a week. She moved on to the next issue and it was as if I hadn't mentioned it at all.

 

I don't know if this is a good place to mention (but of course, I will!) that I had been seeing something called a Squatty Potty being advertised on the internet. The graph on their website explains that we have a pelvic floor muscle that relaxes when we "squat" for bowel movements but it gets stuck if we're using the American "sitting" position. By this muscle relaxing, gravity helps to move things through the canal much easier. Becoming curious about this new information (and with nothing to lose since I was so constipated anyway), I decided to give the position a try. I turned my bathroom trash can upside down & put my feet onto it, thereby lifting my knees to an easy squatting position. To my amazement, it did make the process much easier! I suggested to my hubby that he give it a whirl and he reported better success, as well. So I went ahead and ordered the actual Squatty Potty, but one could easily just use a small stool to get the same results. Now I am the one heading back under the covers while blushing.....yet I must say that if even one other constipated person is helped by my frankness, then it will be worth it.

 

Oh, one more thing. I have tried very hard this week to balance my soluble and insoluble fiber intake and I think that is also helping to get me on the track. Drinking plenty of water, supplementing with acacia powder on fresh fruit for breakfast, moving my body more, and snacking on a few dried prunes before bed is proving to be beneficial.

GFinDC Veteran

Hi Spirit22,

 

You could go to a health food store and pick up store pysillum husks.  Then you can stir in a 1/2 teaspoon or so into whatever food you are eating. or just throw it on top.  They are tasteless so don't interfere with food flavors.  They do tend to thicken things because they absorb lots of water.  You should make sure to drink a glass of water whenever you take pysilllum.  Actually, that's another way to take it, just stir 1//2  a teaspoon into  a glass of water.  The nice thing about pysillum is you can dd it to any food and thereby increase the fiber  in the food.  I suggest you don't take a lot of at first tho.  Instead build up slowly over a few weeks and see how it goes.

 

Since you have only been gluten-free for a month, you shouldn't really expect your gut to be working correctly right now.  For some people it takes 6 months or more to recover from eating gluten.

 

Some starting the gluten-free diet tips for the first 6 months:

Get tested before starting the gluten-free diet.
Get your vitamin/mineral levels tested also.
Don't eat in restaurants
Eat only whole foods not processed foods.
Eat only food you cook yourself, think simple foods, not gourmet meals.
Take probiotics.
Take gluten-free vitamins.
Take digestive enzymes.
Avoid dairy if it causes symptoms.
Avoid sugars and starchy foods. They can cause bloating.
Avoid alcohol.
Watch out for cross contamination.

Helpful threads:

FAQ Celiac com
https://www.celiac.com/gluten-free/forum-7/announcement-3-frequently-asked-questions-about-celiac-disease/

Newbie Info 101
https://www.celiac.com/forums/topic/91878-newbie-info-101/

spirit22 Newbie

Hi Spirit22,

 

You could go to a health food store and pick up store pysillum husks.  Then you can stir in a 1/2 teaspoon or so into whatever food you are eating. or just throw it on top.  They are tasteless so don't interfere with food flavors.  They do tend to thicken things because they absorb lots of water.  You should make sure to drink a glass of water whenever you take pysilllum.  Actually, that's another way to take it, just stir 1//2  a teaspoon into  a glass of water.  The nice thing about pysillum is you can dd it to any food and thereby increase the fiber  in the food.  I suggest you don't take a lot of at first tho.  Instead build up slowly over a few weeks and see how it goes.

 

Since you have only been gluten-free for a month, you shouldn't really expect your gut to be working correctly right now.  For some people it takes 6 months or more to recover from eating gluten.

 

Some starting the gluten-free diet tips for the first 6 months:

Get tested before starting the gluten-free diet.

Get your vitamin/mineral levels tested also.

Don't eat in restaurants

Eat only whole foods not processed foods.

Eat only food you cook yourself, think simple foods, not gourmet meals.

Take probiotics.

Take gluten-free vitamins.

Take digestive enzymes.

Avoid dairy if it causes symptoms.

Avoid sugars and starchy foods. They can cause bloating.

Avoid alcohol.

Watch out for cross contamination.

Helpful threads:

FAQ Celiac com

https://www.celiac.com/gluten-free/forum-7/announcement-3-frequently-asked-questions-about-celiac-disease/

Newbie Info 101

https://www.celiac.com/forums/topic/91878-newbie-info-101/

Hi GFinDC ~

 

Thanks so much for the great info & links! I really appreciate it!

 

I'm a bit confused about the probiotics. There are so many out there & I've heard I should be taking one with at least 7 strains. My gastro's P.A. gave me samples of VSL#3 but warned me they are very expensive to purchase. I haven't taken any of them. I did try Farrow's IBS one. It was ok but it only has one strain in it (plantarum) that is supposed to be good for IBS (which I also have(. I used them for the first month but am wondering if I need a few more strains involved. Still pondering........

 

Any suggestions on a good one?

GFinDC Veteran

Hi GFinDC ~

 

Thanks so much for the great info & links! I really appreciate it!

 

I'm a bit confused about the probiotics. There are so many out there & I've heard I should be taking one with at least 7 strains. My gastro's P.A. gave me samples of VSL#3 but warned me they are very expensive to purchase. I haven't taken any of them. I did try Farrow's IBS one. It was ok but it only has one strain in it (plantarum) that is supposed to be good for IBS (which I also have(. I used them for the first month but am wondering if I need a few more strains involved. Still pondering........

 

Any suggestions on a good one?

 

I take Jarrow Formulas EPS.  But there are many others to choose from.  Some posters like Culterelle.

spirit22 Newbie

I take Jarrow Formulas EPS.  But there are many others to choose from.  Some posters like Culterelle.

GFinDC ~

 

Thanks for your reply. I ran out of the Jarrow IBS & need to replenish with something. I'll check into both that you posted.

Archived

This topic is now archived and is closed to further replies.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - lil-oly replied to Jmartes71's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Gluten tester

    2. - knitty kitty replied to JudyLou's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      11

      Seeking advice on potential gluten challenge

    3. - JudyLou replied to JudyLou's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      11

      Seeking advice on potential gluten challenge

    4. - knitty kitty replied to JudyLou's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      11

      Seeking advice on potential gluten challenge

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,156
    • Most Online (within 30 mins)
      7,748

    mike101020
    Newest Member
    mike101020
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • lil-oly
      Hey there, have you been tested for allergies? You may not only have celiac disease but be allergic. I have celiac disease and am allergic to Barley, wheat and rye. 
    • JudyLou
    • knitty kitty
      I have osteopenia and have cracked three vertebrae.  Niacin is connected to osteoporosis! Do talk to your nutritionist and doctor about supplementing with B vitamins.  Blood tests don't reveal the amount of vitamins stored inside cells.  The blood is a transportation system and can reflect vitamins absorbed from food eaten in the previous twenty-four to forty-eight hours.  Those "normal limits" are based on minimum amounts required to prevent disease, not levels for optimal health.   Keep us posted on your progress.   B Vitamins: Functions and Uses in Medicine https://pmc.ncbi.nlm.nih.gov/articles/PMC9662251/ Association of dietary niacin intake with osteoporosis in the postmenopausal women in the US: NHANES 2007–2018 https://pmc.ncbi.nlm.nih.gov/articles/PMC11835798/ Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet https://pubmed.ncbi.nlm.nih.gov/19154566/   Nutritional Imbalances in Adult Celiac Patients Following a Gluten-Free Diet https://pmc.ncbi.nlm.nih.gov/articles/PMC8398893/ Nutritional Consequences of Celiac Disease and Gluten-Free Diet https://www.mdpi.com/2036-7422/15/4/61 Simplifying the B Complex: How Vitamins B6 and B9 Modulate One Carbon Metabolism in Cancer and Beyond https://pmc.ncbi.nlm.nih.gov/articles/PMC9609401/
    • JudyLou
      Thank you so much for the clarification! Yes to these questions: Have you consulted dietician?  Have you been checked for nutritional deficiencies?  Osteoporosis? Thyroid? Anemia?  Do you take any supplements, or vitamins? I’m within healthy range for nutritional tests, thyroid and am not anemic. I do have osteopenia. I don’t take any medications, and the dietician was actually a nutritionist (not sure if that is the same thing) recommended by my physician at the time to better understand gluten free eating.    I almost wish the gluten exposure had triggered something, so at least I’d know what’s going on. So confusing!    Many thanks! 
    • knitty kitty
      @JudyLou,  I have dermatitis herpetiformis, too!  And...big drum roll... Niacin improves dermatitis herpetiformis!   Niacin is very important to skin health and intestinal health.   You're correct.  dermatitis herpetiformis usually occurs on extensor muscles, but dermatitis herpetiformis is also pressure sensitive, so blisters can form where clothing puts pressure on the skin. Elastic waist bands, bulky seams on clothing, watch bands, hats.  Rolled up sleeves or my purse hanging on my arm would make me break out on the insides of my elbows.  I have had a blister on my finger where my pen rested as I write.  Foods high in Iodine can cause an outbreak and exacerbate dermatitis herpetiformis. You've been on the gluten free diet for a long time.  Our gluten free diet can be low in vitamins and minerals, especially if processed gluten free foods are consumed.  Those aren't fortified with vitamins like gluten containing products are.  Have you consulted dietician?  Have you been checked for nutritional deficiencies?  Osteoporosis? Thyroid? Anemia?  Do you take any supplements, medicine, or vitamins? Niacin deficiency is connected to anemia.  Anemia can cause false negatives on tTg IgA tests.  A person can be on that borderline where symptoms wax and wane for years, surviving, but not thriving.  We have a higher metabolic need for more nutrients when we're sick or emotionally stressed which can deplete the small amount of vitamins we can store in our bodies and symptoms reappear.   Exposure to gluten (and casein in those sensitive to it) can cause an increased immune response and inflammation for months afterwards. The immune cells that make tTg IgA antibodies which are triggered today are going to live for about two years. During that time, inflammation is heightened.  Those immune cells only replicate when triggered.  If those immune cells don't get triggered again for about two years, they die without leaving any descendents programmed to trigger on gluten and casein.  The immune system forgets gluten and casein need to be attacked.  The Celiac genes turn off.  This is remission.    Some people in remission report being able to consume gluten again without consequence.   However, another triggering event can turn the Celiac genes on again.   Celiac genes are turned on by a triggering event (physical or emotional stress).  There's some evidence that thiamine insufficiency contributes to the turning on of autoimmune genes.  There is an increased biological need for thiamine when we are physically or emotionally stressed.  Thiamine cannot be stored for more than twenty-one days and may be depleted in as little as three during physical and emotional stresses. Mitochondria without sufficient thiamine become damaged and don't function properly.  This gets relayed to the genes and autoimmune disease genes turn on.  Thiamine and other B vitamins, minerals, and other nutrients are needed to replace the dysfunctional mitochondria and repair the damage to the body.   I recommend getting checked for vitamin and mineral deficiencies.  More than just Vitamin D and B12.  A gluten challenge would definitely be a stressor capable of precipitating further vitamin deficiencies and health consequences.   Best wishes!    
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.