My Health Story | FUN WITHOUT FODMAPs

My Health Story

Hey friends! Grab a cup of coffee (or tea) and settle in because this is going to be a long one. 🙂

Like many others, my health story has many facets. It’s kind of long and convoluted, semi-unsolved, and personal which is probably why I’ve waited so long to really talk about it on here.

My health story is not textbook and didn’t always stay neatly in the (evidence-based) lines. However, as anecdotal as it is, it’s my truth. It’s why I decided to start FUN WITHOUT FODMAPs and focus on this area of nutrition.

If I had known in my past what I know now, I would have done things differently. But, I can’t. I can, however, encourage you to be an advocate for your own health. Ask questions. Do research. Get a second opinion. Keep experimenting. Because nutrition and health are not one-size-fits-all.

The Beginning

It’s hard to pinpoint when my symptoms started. For much of middle and high school, I never felt “good”. Although I was active in sports and did well in school, I was frequently “sick to my stomach”, always felt tired, and had alternating bouts of diarrhea and constipation. 

My Health Story | FUN WITHOUT FODMAPS
Al (my now husband) and I after my graduation in (gasp!) 2007

Towards the end of high school, I started developing an interest in nutrition and began eating more “healthy foods” like apples, whole wheat toast, and plain yogurt. For whatever reason, I never made an association between these foods and the discomfort or belly bloat that I experienced on a near-daily basis.

I did, however, make an association with black beans. With my growing interest in nutrition, I had started incorporating more black beans into my diet. It didn’t take long for me to realize that every time I ate them, 3-4 hours later I would have intense pains in my right side. I can’t tell you how many times I told my family that I thought I needed to go to the ER because I thought my appendix had burst. 🙂

The pain would eventually go away in an hour or two, but this occurrence happened regularly enough that I finally saw my doctor to try and find answers. My doctor quite simply said, “You have IBS.”

And that was that.

That appointment was the first time I had ever heard of irritable bowel syndrome. At that time, I don’t remember receiving any advice other than “to avoid black beans” and underwent no further testing.

I do remember I left that appointment feeling like this was just something I was going to have to live with.

Just Living With It

For the next several years, I avoided beans and had fewer “appendicitis scares”, but I was nowhere near to feeling “good” when it came to my digestive system. With school, work, and an active social life, I had little time to think about it. So, I just lived with it.

During my senior year, I was finishing up my chemistry degree, applying to nutrition graduate programs, and working as a high school dance coach. I was stressed and probably over-tired, staying up late to study for exams and going out with friends.

My Health Story | FUN WITHOUT FODMAPS
Trying to enjoy myself on vacation, but always feeling sick.

I tried to base my diet on the then newly-released MyPlate recommendations, but my digestive issues started to get even worse. In addition to alternating diarrhea and constipation, I would feel nauseated almost every night and had near constant headaches.

Looking back, I’m surprised I accomplished what I did, feeling the way I did.

Intolerances

Around this time, I had started taking nutrition classes to prepare for graduate school and learned about food intolerances for the first time. Hearing about some of the symptoms, I made an appointment with my doctor to see if intolerances could be contributing to my symptoms.

My doctor reaffirmed my new found knowledge and suggested I eliminate lactose and “gluten” from my diet for a month to see if it helped.

It did. I went back a month later feeling so much better but didn’t know if it was the lactose, the “gluten”, or a combination of both. So, my doctor suggested that I reintroduce lactose into my diet for several days. Eliminate it again. And, then test “gluten” for several days before scheduling another appointment.

My headaches and nausea returned as soon as I reintroduced lactose. A week later, the reintroduction of “gluten” brought back abdominal pain, diarrhea, and lethargy. Neither reintroduction was fun, but I only made it a day and a half into the “gluten” reintroduction. It was awful!

It was only when I returned to my doctor with my findings that I learned I would have to reintroduce gluten for several WEEKS to get tested for celiac disease.

My older, wiser self is now kicking myself for not getting tested back then, but at the time I decided I was not going to go through the literal pain of eating “gluten” to get tested. Instead, I decided to just continue living without gluten-containing foods.

My Health Story | FUN WITHOUT FODMAPS
Visiting Seattle not long after removing dairy & gluten and finally feeling better

Please note: The current recommendation is to get tested for celiac disease BEFORE eliminating gluten from your diet.

Before I move on, I want to be clear that I do not advocate doing what I did. This part of my story happened years ago in a small, rural clinic where I can safely bet FODMAPs were unheard of and celiac awareness was just in its infancy. Please get tested for celiac disease before removing gluten from your diet, if you’re considering it for whatever reason. 

Also, I put “gluten” in parentheses, because I still don’t know if I have celiac disease, and whether or not “gluten” was the true culprit of my symptoms at that time. It might have been FODMAP-related or a reaction to another component in wheat.

After years of living this way, I personally feel better living without gluten-containing foods and have no desire, at least at this time, to change that aspect of my lifestyle.

Down the road, I may consider genetic testing for more concrete answers, but to date, it has not been feasible.

Now, back to the story. 🙂

A Year of Hives

After a year of successfully eating gluten and dairy-free (lactose-free dairy products didn’t work for me), I was feeling pretty good. I had just finished my first year of graduate school and was taking some summer classes to speed up graduation.

The Saturday before the end of summer classes, I started to get sharp pains in my lower abdomen every 5-10 minutes. Al and I were headed to a family wedding that I didn’t want to miss. So, I hoped it would just pass.

My Health Story | FUN WITHOUT FODMAPS
Trying to make the most of the wedding despite the pain.

I made it through the wedding and decided to hold out until the next morning. When I woke up, the pain was still there. So, I went to the ER and left with a diagnosis of gastroenteritis and instructions to drink lots of fluids and rest. Eventually, the sharp pain did go away, but …

A couple of days later, I was driving home from my last day of class and started to get really itchy. I looked down at my arms and saw tiny red bumps appearing before my eyes – hives! This marked day one of having hives every single day for almost a year.

My Health Story | FUN WITHOUT FODMAPS
One of many appointments to try and figure things out.

Over the course of the next year, I saw multiple doctors and had numerous tests with no real answers or solutions for my hives. It was during this time that I started keeping a food and symptom journal as I had started to see patterns when I ate certain foods.

I found that my hives appeared to get worse after eating or drinking different things, like coffee, peppers, tomatoes, and eggs. Journaling was helpful in recognizing certain patterns, but it also kind of made me feel like I couldn’t eat or drink anything fun.

One thing I didn’t eliminate was black pepper. Instead, I was using it like crazy to add (“healthy”, non-salt) flavor to the things I could eat. The last doctor I saw, a specialist in food allergies and intolerances, suggested I cut out black pepper. I did and the hives disappeared. Hallelujah!

To this day, I avoid black pepper. I’ve found that I’m able to tolerate it in small, infrequent doses. So, I don’t really stress about it if I’m eating out and something happens to have black pepper on it. However, I have noticed that if I’m around it too long (making recipes for others) or eat it too frequently (traveling), I start to get itchy and on occasion, it triggers my hives.

My Health Story | FUN WITHOUT FODMAPS
Had a lot of fun making pierogi with my family.
The hives after … not so much.

More recently, I’ve also developed hives on several occasions after working with wheat flour (even though I don’t eat the final product) leading us to believe that wheat may be another trigger for my hives.

FODMAPs

After grad school, I started my dietetic internship at the University of Wisconsin – Hospital and Clinics in Madison. It was an intense clinical-focused internship and I learned a lot about nutrition therapy for a variety of very complex medical conditions. This internship also allowed me the opportunity to select an elective rotation at the UW Digestive Health Center where I was first introduced to the low FODMAP diet.

In 2014, I trained with a dietitian who primarily saw patients with IBS and utilized the low FODMAP diet with her patients on daily basis. I learned so much and started to see potential associations between FODMAPs and symptoms I had experienced in my past. Just seeing how helpful the low FODMAP diet could be for those with IBS, I quickly realized that this was the area of nutrition I wanted to specialize in.

Today

Fortunately, as I’ve continued to learn more about FODMAPs and nutrition, I’ve been able to further manage my IBS symptoms. Today, I follow my own personalized low FODMAP lifestyle (which includes small amounts of garlic and avocados. YAY! 🙂 ) and continue to live without gluten, dairy (except ghee/clarified butter, which I tolerate), and black pepper.

My health story | FUN WITHOUT FODMAPS
One of several days, I’ve woken up with my eyes swollen shut (angioedema). Luckily, medication helps bring down the swelling enough so that I can get on with my day. 🙂

Although my IBS symptoms are pretty well managed, I’ve had a few flare-ups of hives/angioedema over the past couple years. And, I have since been diagnosed with “idiopathic urticaria” which essentially means hives with no known root cause.

As stress can play a factor in both hives and IBS symptoms, I have really started to focus on incorporating stress management techniques, like yoga and meditation into my everyday lifestyle. So far, so good, but only time will tell. 🙂

Even though it’s been a 10+ year process and not completely solved, I finally feel pretty happy with the balance of foods I can eat with my overall symptom control. 🙂

My Health Story | FUN WITHOUT FODMAPS
Happy and living pretty much symptom free – 10+ years later 🙂

Thank you!

“Uffda” (said in my full-on Minnesotan accent). Still with me? I know that was long! Thank you so much for taking the time to read my health story. I appreciate you and am so glad you’re here! If you feel called to share your own health story, I’d be honored to hear more about your journey!

You can connect with me in the comments below, email, or find me on the ‘gram:  @funwithoutfodmaps.

I'm a foodie and dietitian living with IBS who loves creating easy and delicious low FODMAP recipes for you (and me)! I've been trained on the use of the low FODMAP diet for IBS by Monash University and create my recipes based on their (green) low FODMAP serving sizes.

12 Comments

  1. Thank you sharing your journey Emily! Is it safe to follow a low fodmap diet for long periods of time? I’ve been on a journey since a September trying to figure out my sudden stomach issues but my GI doc suggested to follow a low fodmap diet while we figure it out. I get occasional heart burn flare ups, upset stomach, nausea or stomach pain but the diet has been helping manage it. I have a lot more energy and don’t feel “bloated” as I did since for as long as I can remember however I have lost at least 10 pounds since adopting this new diet and wondering if that’s “normal”

    1. Hi Jessica, Thanks for sharing! In general, it is not recommended to follow a “strict” low FODMAP diet long-term (more than 6-8 weeks) without reintroducing each FODMAP group individually to test your tolerance. The low FODMAP “diet” is not meant to be a weight loss diet, however, some people do experience weight changes. Following this “diet” long-term can increase the risk of nutrient deficiencies, decrease the amount of fiber in our diet, and decrease the amount beneficial bacteria in our gut. Many people find they are able to tolerate at least some FODMAPs, so going through the reintroduction phase is really important to help increase the variety of foods we, as individuals, can eat without triggering symptoms. Hope that helps!

  2. Thank you for sharing. I’ve recently been diagnosed with IBS. Add kidney issues and my list of approved foods is small. It’s extremely frustrating to find comfort in something like potatoes only to be told by my kidney doc to eat less potatoes. This should be a fun journey.

    1. Hi Danielle, Thanks for sharing a bit of your story. I can only imagine how frustrating it feels. Are you working with a dietitian as part of your care team? Sometimes when facing additional health challenges, a modified FODMAP approach is recommended as it’s less restrictive but can still help with IBS symptoms. Wishing you the best on this journey.

      1. I am not. My doctors don’t believe I need help from a dietitian and the two I did manage to see didn’t give me much help. The constant you can’t eat this, you can’t eat that has been a bit much so I tossed the kidney diet and I’m focusing on low fodmap. Heal my tummy first then I’ll get back to my kidney.

        1. Hi Danielle, I’m sorry to hear that. I do think a dietitian could help, but at the very least, I’d recommend checking with your doctor before changing anything with your kidney diet. Kidney health might trump GI health in your situation. Ultimately, the FODMAP diet can help many people manage their symptoms but it, unfortunately, won’t “cure” IBS.

  3. Hi Emily. It’s really interesting reading your words and realize that are others with the same kind of fight. We still go to doctors and sometimes they look at us like we are aliens. I’m from Portugal and Low Fodmap diet is still not a familiar kind of diet, so for the last 4 years i am “walking” alone, reading, and cooking, and writing and i still feel like i have 1 day good and all 6 bad. It’s a looong way!! Thanks for your time, story, recipes and sharing your “life”.

    1. Hi Rute! Thank you for taking the time to leave a comment. I appreciate you! The low FODMAP diet is pretty new to the area of the US where I live, too. So, I hear your struggle and frustration of not having adequate resources or support and I’m sorry you’ve had to “walk” this journey alone. Please know that I’m here and let me know if we can do anything to support you!

  4. Thank you for sharing your story Emily. I found it very similar to mine, although it took me nearly 30 years to get an IBS diagnosis. I love reading your recipes. It’s difficult to find truly FODMAP friendly recipes on the web that use the Monash information. Thank you for all your hard work and your kindness in sharing all this information with us. 🌻

  5. Thank you for sharing your story Emily. We “low to no FODMAP people” need to find each other, and I feel better after finding your blog. I’m glad I’m not alone with my strange diagnosis (microscopic lymphocytic colitis), negative for celiac (yes I went through the testing) and so little support from the medical community who try to lump me into the IBS bucket. I am encouraged now that I’ve found your blog, and if I find a particularly good recipe that works for me, I’d love to share it if you are agreeable? Keep up the good work, you are helping people in ways you cannot imagine.

    1. Thank you, Mary! I appreciate your kind words and support! I agree we “low FODMAP people” do need to band together. 🙂 I know that not everything I share will work for every person, but you are more than welcome to share anything if you find helpful! Thanks again!

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