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My Experience with a Low FODMAPs Diet

In another post I’m writing (hope to post today), I intended to go on a slight tangent and say a few words explaining what a low FODMAPs diet is. It turned into a giant tangent and enough text to be its own post, so here it is.

I have a lot to say about a low FODMAP diet. First of all, it is not a nutrient/healthy type diet in its purpose. There are plenty of unhealthy, low FODMAPs foods and plenty of healthy ones; it is up to the person following it. Second of all, it is not based on a hypothesis or personal experiences (how diets such as the Paleo diet are). It is a diet based on loads of research and the science of how certain types of carbohydrates behave in your intestines. Third, unless you had a list, you’d probably never figure out the foods your intestines can and cannot tolerate if FODMAPs are your issue. It varies from person to person (FODMAPs is an acronym for the types of carbs, some people have to avoid all of them, some people only one type; you figure this out via an elimination diet). Examples of how it can be confusing to figure out without a guide include: apples are out, but blueberries are okay, 2 cups of blueberries is not okay, but 1/4 cup or so is, high fructose corn syrup isn’t okay, but small amounts of corn syrup is and white granulated sugar is okay. You get the gist. The researchers who did the research to gather data about this diet make an incredibly pricey app (search for “Monash University FODMAP”) to help dieters and also to fund their research.

I have made many dietary changes, all for different reasons, but FODMAPs was a change made because I had unpredictable bloating despite having identified many trigger foods. It has allowed me to predict my digestive system. I no longer have to plan outfits around my stomach bloating up. I know each day I will wake up with a flat belly, and if I don’t, it is because I chose to eat a food high in FODMAPs, misjudged a food, or I’m experiencinG gastroparesis, which is a completely different type of bloating.

It was the final key to the puzzle that was my grumpy digestive system and looking pregnant after I eat, which I wrote about before. Here is what used to happen:

food intolerance

When I went gluten, dairy, soy, egg free, the bloating decreased significantly, but still came around. Well guess what? This makes sense in the context of FODMAPs being my big bloating issue. Many grains which contain gluten (barley, wheat, rye) are high in FODMAPs. It is the reason many people who do not have Celiac benefit from a gluten free diet. Soy is high FODMAPs. Dairy contains lactose which is not advised during elimination. I have more than lactose/FODMAPs issues going on with dairy because casein and whey bother me, but still, it makes sense dairy free has helped me.

When I first heard of this diet from my fellow POTSie friend (FODMAPs is unrelated to POTS, we both just have silly intestines), I refused to try it because it was so difficult sounding and I’ve never been diagnosed with IBS (I probably could be, but it is a diagnosis of exclusion and I’m not interested in any IBS medications), but it turns out it helps me a lot.

“Some foods, from beans to sugar-free gum, contain carbohydrates called FODMAPs, which may trigger symptoms… When people have problems absorbing FODMAPs, extra water is drawn into their intestines…. In addition, these carbohydrates are fermented by intestinal bacteria, causing gas….. Individuals with IBS seem to be more vulnerable to the aftermath of poorly digested FODMAPs, perhaps because of the greater amount of gas produced in their intestine, or because the disordered movement of their intestine traps gas and fluid.”

Here is the article I quoted from and here is another favorite.

You may be like me and FODMAPs may not be enough in and of itself to get your gut to behave normally. Everyone varies on if extra measures need to be taken.

As far as I know, low FODMAPs is in no way related to Sjogren’s, EDS, POTS, etc. aside from if you have gut issues and it helps, it is one less thing for your body to deal with. I do feel like my gastroparesis (stomach not emptying properly due to Dysautonomia) has become more manageable since I went low FODMAPs and figured out which foods my digestive system as a whole does best with. I believe it is an indirect benefit. I am making the leap that a gut which doesn’t bloat almost every time I eat, and isn’t irritated, allows the stomach to more smoothly move food into it. I’d also think it is nicer on my body overall not to have this source of inflammation. Systemic Sjogren’s already effects the entire GI system through effecting the lining, so I think every little thing I can do counts.

So, that’s that. If you want to learn more, the links I provided are good place to start for some articles. After that, Googling should bring you all sorts of blogs and websites devoted to the topic, including recipes. Also, your gastro should be informed about this diet since it is a popular IBS treatment approach.

11 thoughts on “My Experience with a Low FODMAPs Diet

  1. Interesting! I was suggested to try the FODMAP diet after my hospital stay back in August to check for absorption issues. I’ve made some of the changes but didn’t take the time to try it full on. Maybe I should try a little harder to find more time. Thankfully the dietician at the hospital gave me information on it so I didn’t have to do too much research. I’ve been trying to get one issue under control at a time otherwise I get too flustered. Your information helps the process along. 🙂

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    1. It is intimidating at first because there aren’t obvious common threads to help with memorizing what you can have and what you can’t. Once I saw the improvements (I’ve been following it a year and a half), I was happy to go out of my way to be sure I was following it.

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  2. Whoop! So glad to hear you’ve found a diet to help you. I tried fodmaps a few years ago without any significant difference which in some respects was a relief because it was complicated and quite restricting! I think my issue was that like you I have issues with casein and whey so having lactose free milk (but not dairy free) as the fodmaps diet plan recommended made my symptoms worse not better. I should probably try fodmaps again without any dairy but not sure I want to! But glad to hear it’s helping you!

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    1. It definitely takes a lot of effort at the start until it becomes the norm. For me, if I wasn’t dairy, egg, and soy free (have been for 3 years), the FODMAPs diet wouldn’t make as noticeable of a difference with my bloating since those foods give me gastro issues in their own right. Whenever I try and reintroduce those foods, I get issues similar to FODMAPs and then some systemic symptoms. I really want eggs back someday!

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  3. Hi Jackie! Love to hear that low FODMAPS helped some! Wanted to comment a bit. Celiacs often don’t get better consuming grains because some of the proteins look the same to the body, like in corn and oats. So some celiacs just have to remove all grains. I’d disagree about the Paleo diet not having studies. There may not be studies about “Paleo diet” per se, but there are plenty of studies about some of its tenets. (Now I am not a Paleo person. There is NO diet which fits all. NONE.) I think that low FODMAPS are tricky because the lists aren’t all the same and quantity can matter so much for some people about the things on the list, so if people are looking for a “black and white list,” they may get frustrated . I know I have FODMAP issues, and avocado is on some lists but not others. It always gives me FODMAP symptoms. But certain things that are on the list give me no troubles. It comes down is it polyols causing symptoms? Fructose causing symptoms? And lastly, because I’m going to stop rambling, there was a study out about how “people getting better when they gave up wheat was due to FODMAPs.” That may be partly true for IBS type symptoms from wheat, but not for the other things like headaches, joint aches, rashes. I feel like they wanted to downplay wheat exemption success. Okay. Closing now.

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    1. Thanks for this. I agree about Paleo diet, I actually follow it to a large extent, and am happy you added this information.

      I think I worded poorly. What I was trying to convey is it wasn’t the case that certain people gave up FODMAPs (I don’t know how anyone would ever figure out all the foods on their own!), saw benefit, and then researchers developed the diet and theories about why the diet helps based on the results. Researchers developed their theory based on how certain carbs behave in the gut and people with fructose malabsorption, fructan sesitvity, non-celiac gluten intolance, etc. then tested food for FODMAPS then put people on the diet. It seems like Paleo, or even no grain diets, it has helped quite a bite of people and they are doing studies to find out why after the fact rather than before. Is my understanding of that right?

      FODMAPs is definitely a challenge. I follow the Monash University’s lists since they are the people who actually test the foods and break down how much of what it has in it, but it can be frustrating when there are foods they haven’t tested yet. As they test new foods, they post it on their website. I’ve had good luck eliminating all FODMAPs then trying one group at a time to see if I tolerate it or if I need to stay below a certain amount, but it takes A LOT of patience!

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  4. Yes. I guess you could say that as Dr. Cordain seems to have been the impetus, and all his studies would be anthropological. And now, they are doing small pilots and they are coming out as positive, like in MS and Alzheimer’s–although the changes are intense and some supplements are used too. But NOTHING that a normal person couldn’t do with good guidance and encouragement. Right?!

    Oops, now I can’t see the rest of the comment to finish replying. I’ll post this and see what I missed in the second part of your reply.

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  5. Oh, yes! Me too on the FODMAPS. Some I know I just can’t eat at all or I’ll suffer. Others I can have a little. Others I can eat just fine! Like, I think I do okay with a little fructose, but I do horrible with polyols. So now that I’ve done it awhile, I can just look at foods with polyols and avoid those mostly. It does take a LOT of patience, but with diligence the maze is traversed! Slow and steady wins the race! I hope the IVIG you just had went super! Fingers crossed. . .

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  6. Just found your blog after searching for Sjogrens and POTS. Hi fellow sufferer. I too have used FODMAPs to help deal with IBS. For me, watching out for insoluble and soluble fibers is also important. Many of the highly insoluble ones are very difficult for me.

    You say that you and another “just happen to have IBS as well”. IBS and other gastro symptoms are pretty common in autoimmune disorders. The mechanism isn’t clear, but it may have to do with autonomic dysfunction.

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    1. Welcome! I am happy you have been able to figure out your gut. I’m lucky to be able to handle any type of fiber as long as it comes from safe foods. It seems like each person has a unique combination of what they need to watch.

      I agree there is a correlation with autoimmune disease, but not causation with my specific AI issues. It makes sense to me it would occur in Sjogren’s due to how SS effects the GI lining.

      As for what I know about autonomic disorders: They are known to cause many GI issues such as speeding up or slowing down the system which results in all sorts of gastro symptoms, but when that’s the case, it isn’t actually IBS, it is just autonomic dysfunction. Like my autoimmune issues, as far as I know, like you said, no causation type data exists between the ANS malfunctioning and IBS now, so the most we can say is they sometimes co-occur.

      Once causation is established (if it ever is) then I’m unsure if it would be called IBS in cases of people with an autoimmune disease or autonomic dysfunction since IBS is a collection of symptoms with no other explanation such as a disease or injury.

      If you have any studies on these topics you find helpful, please feel free to share here!

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