Life with IBS

Living with IBS #4 – What if you keep having symptoms?

I thought it was time for another “Living with IBS”. Blogs where I tell you more about my experiences and issues in living with IBS. Today, I want to talk with you about symptoms: what if you keep having too many IBS symptoms, even though you are sticking to the low FODMAP diet? 

Let me say first, that there are few people that are completely symptom-free after they have followed the low FODMAP diet. The diet helps for many people to minimize their IBS-symptoms. But they hardly are completely symptom-free. You have a sensitive gut that reacts to many different things and situations and therefore it is hard to completely eliminate symptoms.

But it is also not good when you keep having too many symptoms and that is something that I have been going through in the last few months. In general, the low FODMAP diet has made a very big difference in my IBS complaints. However, I always felt like I still had quite some symptoms and that I have a very sensitive gut.

Two glasses of wine on one evening? Stomach pain. Eating out in a restaurant and picking a low FODMAP option? Still bloated and stomach pain. Fries for dinner? Stomach pain. Ate a little too much sugar? Stomach pain. Sitting still for too long? Stomach pain. 

This is something that really frustrated me. Because it made me very strict towards myself. After a dinner in a restaurant I often felt angry with myself I made a certain dinner choice, fries with meat for example. I ended up thinking “Why did I not pick the salad, that would probably have been a less fatty and thus safer choice”. If I had a glass of wine with a friend, I felt guilty about that because not drinking wine would have been better for my stomach. I saw people around me enjoy very normal things, such as a drink with some potato chips in the weekend, and all those things gave me stomach pain. I felt that my IBS started to control my life again more and more. 

Life with IBS

A good dietician who knows the low FODMAP diet

Something that has been very valuable for me in the last month was finding a good dietician. In the past, I have visited several dieticians and they usually had some knowledge about the low FODMAP diet. But I often noticed that I, with the knowledge that I gained about the diet in the past years, knew more about the diet than they did and I didn’t feel like I gained anything from my visits. 

Some time ago, I found Manon te Linde, a Dutch dietician who focuses on IBS, the low FODMAP diet and other nutrition-related gut issues. She caught my interest because she also has a blog, Positive Gut, where she shares very interesting articles about gut health and IBS. It looked like Manon really knew a lot about this topic and that’s why I took several consults with her. 

These consults were very valuable to me. The dietician didn’t only look at what I was eating and if we had to make adaptations to the things I ate to diminish my symptoms, but she looked further than that. 

She also helped me with eating enough fiber, something that is very important for your gut health and she asked me a lot of questions about my eating habits. Whether I sometimes ate without thinking, if I eat in front of the tv or if I check how often I chew on my food. These were things that I had never connected to IBS complaints. 

But you know what? When I focused on eating more slowly and mindfully, it had a positive effect on my symptoms. When I ate quickly, I got stomach pains more often than when I ate slowly and chewed carefully. 

Life with IBS

Going to the doctor

I have worked with the dietician for a few months and even though I noticed improvements, for example because I ate more mindful, my symptoms didn’t calm down enough. The last few weeks were really bad. I had diarrhoea quite often and when we went skiing two weeks ago, I had to take diarrhoea pills daily to even be able to go skiing. After talking with my dietician, I decide to go to the doctor again. Because it looks like something more is going on. 

The doctor did a blood- and stool test, but all the results came back good. Of course, I am happy that the results were good, but I also hoped that they would at least find an explanation for the problems I am having. Because the GP couldn’t help me further, he advised me to make an appointment with a gut doctor in the hospital and I have my appointment in a month. I hope that they can help me in the hospital to discover the cause of my issues. 

I really want to advise you to not wait too long to go to a specialist again when you keep having heavy stomach issues. Don’t blame yourself when you still have too many symptoms, but go talk to a good dietician or your doctor. I have been guilty of this in the past too. I didn’t feel like the hassle of going to doctors again or to pay the healthcare costs, while these symptoms really have a big impact on my life. It is about your health and your happiness in life and that is really important!

How is that for you? Do you have your IBS complaints under control or do you think you still have to many IBS symptoms too?

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  • Camilla Stenhaug Pedersen says:

    Have you been checked for SIBO?
    Your story sounds a lot like mine, and I have both celiac disease, ibs, leaky gut and SIBO.

    • Karlijn says:

      I have been tested on it. I have no bacterial overgrowth in my gut, everything looks fine. So I’ll just go see the gut doctor now to see if they can help me with anything and otherwise I’ll have to try a different route.

      • Kerry Davis says:

        Thank you for sharing. Ive been “sick” frogger more than 20 years. I’ve never had anyone who understood and could help. I gift diagnosed with a pretty serious case of Barrett’s. Everything is dro overwhelming. I cry because of what I cannot have grocery shopping sucks and I get depressed. Seems even even when I follow it, I’m still feeling crappy. I started fiber but then I have more issues. I just feel like it’ll never be better. I have had zero luck with dietitians and throwing money away with no better feeling after. Your blog gives me some hope but the struggle is so difficult. Thank you

        • Karlijn says:

          I am so sorry to hear that! And I can really understand how you feel, it is so upsetting sometimes. I really hope that you can find a solution for your issues and feel better soon!

      • Amanda says:

        Something recently that has helped a friend of mine with bad ibs is rice water. Just boil rice till till its mush, strain and drink. It helps a lot with diarrhea.

  • RENEE JONES says:

    I appreciate you sharing your story….my 15 year old daughter is struggling with getting her IBS symptoms under control. She has been following a strict the low, she was two weeks in and feeling good. Then she started having pain and not being able to go to the bathroom ( which is usually not her problem). My thoughts were is she having enough fiber? Eating too gluten free products? I am besides myself as to what to do…..your post hit home more then you know….what you said about about dietitians…..i.finally found one that knew about the mosh university low fodmap diet but I felt I knew more……but dont know enough to help my daughter. Thanks for sharing you gave some helpful tips…feel well.

    • Karlijn says:

      Adding a bit more fiber is something you could definitely try. I recently shared a post about this topic, with some helpful tips: Maybe that will help!

      I personally notice that when I eat a lot of gluten-free breads and other special gluten-free products, that does have some impact on my stomach. So I try to not eat them too often, just now and then. Instead of gluten-free bread, I for example make my own salads or take some left-over dinner with me to work and I try to add veggies to my lunch, so I get about 200-300 gram of veggies with both my lunch and my dinner.

      I hope you can find out soon what causes the issues for your daughter!

  • Linda Suffield says:

    I am so glad that you mentioned your current difficulties. I have IBS and I also have additional difficulties that are bowel adhesions left from major colon surgery. The Diet has helped,(with your cookbook)….but it took me six full weeks of strict dieting before improvement. I also just found a dietician….to help with the reintroduction phase. I have been gluten free as well…and I did not realize that the bread factor(which I love) is an issue. unfortunately, I must be very careful of too much fiber…kind of catch 22 for me. I have an appointment with GI doctor in early April…he originally suggested the diet…with no information
    I hope that you can find the roots of your current distress. I will keep working toward improvement. Any suggestions would be appreciated.

    • Karlijn says:

      Hi Linda, the elimination phase is usually considered to be 2 to 6 weeks, so it is not weird that it took 6 weeks to improve your symptoms. Don’t feel discouraged by that! It really is a puzzle, so also along the way you might find things that still give you issues, I have experienced that too. For the fiber, I was eating a relatively low amount of fiber per day and I have been trying to increase it. I also noticed that I have to be careful with the amount of fiber that I eat, so I try to spread it over my meals and I have been raising the amount very slowly.

      I hope your GI doctor can provide you with some more useful information!

  • Elizabeth says:

    Thank You so much for this post. I have been trying to eat more slowly and mindfully as well and have noticed an improvement in my symptoms. I have found a good dietician and I see my GI Dr. regularly. I kept getting symptoms even on the LOWFOD MAP diet. My Dr. ordered a Berium Enema test and found that I have a very spastic colon. Medication and the LOWFOD MAP diet together has helped tremendously!

  • Janiece Coate says:

    Hi Karlijn. It is a losing battle at times. I’ve been to a dietician. She prints out information that I already have. I feel I know more about IBS and Fructose Malabsorption than she does. I went again for help in my second course of lunch – usually two biscuits. Her advice, keep on with the biscuits and add a snack mid-afternoon. She printed out 5 snacks! So as well as feeling hungry after lunch, I am putting on weight.
    I find sour dough bread suits me. G/F does not. I have to eat G/F pasta. I have minimal fruit, so do not get much fibre from vegetables. It is just too frustrating.

    • Karlijn says:

      I am sorry that you have that experience! I know how frustrating it can be πŸ™ If you search on my blog for snacks, you’ll maybe be able to find some inspiration. I have made several lists with low FODMAP snacks:

      I am not sure if you can eat them all, with your other intolerances, but maybe you can get some inspiration from it!

  • Janiece Coate says:

    Hi Karlijn.
    I have printed out several pages of your snack ideas and am finding some of them very helpful. Thank you for that advice. Keep up the good work.
    Regards Janiece Coate

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