The Summer Body Experiment, Part Deux

I had a gastro appointment this morning. My stomach’s been bothering me for the past few months, and I was hoping for some answers. I know so much of it is stress, and I’m trying to manage it as best as I can, but apparently I can’t fool my stomach.

He asked my symptoms (basically a lot of needing to run urgently to the bathroom), and immediately said, “Yup. Sounds like IBS.”

Um…I know. My bowels are clearly irritated. That’s why I’m here, buddy.

He’d tested me for celiac last year, and all tests (including the genetic one) came back negative. So when he said he was going to test the antibodies that indicate celiac and shoved a needle into my arm before I could ask why, I was clearly a little confused. When he had to switch arms to get blood out of a different vein, I was frustrated and confused. It turns out 1 percent of those who are not genetically predisposed to celiac still end up with it anyway. So, um, thanks for being so thorough? Or something?

“Is Immodium working for you?”

“Well, yes, but…” [this is where I would have continued “but I don’t want to live on a lifetime of choking back Immodium.]

“Great, then stick to that.”

“Um????? Is there anything else I can do?”

“You could try cutting back on wheat.

“Okay. Anything else?”

“Yeah. Don’t eat raw vegetables.

“Yeah, I don’t. Oh, and I’ve been drinking a lot less coffee and that seems to help.”

“Oh good! Yeah, caffeine is a stimulant to your digestive tract.”

So, needless to say, I was a little frustrated that I didn’t get more answers. I think I’m going to look for a second opinion (so if you know of a helpful gastro in NYC, I’m all ears), and also experiment on my own. I’m going to stick with no coffee and experiment with cutting back on gluten and see how those work out for me. I’m also going to try to eat smaller meals more frequently so that my body has less to digest.

coffee.jpg

But this may be me until I figure out how to go without coffee. I miss it like crazy, but I don’t miss feeling like I need to be around a bathroom 24/7.

40 comments on “The Summer Body Experiment, Part Deux

  1. Casey (The Hippie Health Nut)

    Sorry to hear about all your troubles. I know how frustrating that is. If you do see another doctor, you may ask them about other ways to test for celiac just to be sure. The blood tests aren’t very reliable. I’d definitely stay away from caffeine. If anyone tries to put you on antacids or something like that, you may want to do some research before making a decision. They can end up doing more harm than good. I had the exact same problem as you a few years ago and the doctors were worthless. I ended up having even more problems and have only recently found a doctor that gets it. Sending good thoughts your way!
    Casey (The Hippie Health Nut) recently posted..I Eat Slime

    Reply
    1. Theodora Post author

      He also did an endoscopy last summer. Well I’m glad you finally found a doctor who gets it, and hopefully I will, too!

      Reply
  2. Dori

    In my experience, gastros are the least knowledgeable doctors out there. Like I said, I recommend Ken Miller, but definitely curious to hear other suggestions you might get. I wish I knew how to handle my own situation better. But living on Immodium is not a solution and it is horrifying that any doctor would think it is.
    Dori recently posted..Marathon Training: Handling My Fear

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  3. katie

    I have been going through similar constant unending stomach problems and was also just at the gastro. I get migraines, so from years of more than the recommended dosage of advil I actually had given myself an ulcer (oops . . .) I’m on a limited list of ok foods, no dairy and no coffee at all (down from like 4 cups a day.) I have been surviving by making pitchers of unsweetened iced tea. I was afraid that it would still be hard on my stomach (it is still caffeine) but for me I haven’t had any issues from it after about 2 months of like 32 oz. a day! I use three tea bags of lipton and three tea bags of peppermint tea and put those in a pot of water that I boiled on the stove, pour it over a pitcher filled with ice (or just water, you need to dilute it some) and put it in the fridge to cool. I still miss coffee SO MUCH but this has been a good in between. The peppermint adds a great flavor and also makes it really easy on the stomach. It might work for you too!

    Reply
  4. Cait @ Beyond Bananas

    Stomach issues can be SO frustrating. I have the exact opposite problem as you.. have had many tests done, but still am struggling to find something that works! I did a two week trial of Attune Chocolate Probiotic Bars (giving them away on my blog, now) .. and it seemed to regulate me. I am going to experiment more with probiotics.. they can help regulate the digestive system (both ways.) Good Luck!
    Cait @ Beyond Bananas recently posted..How do you like YOUR eggs?

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  5. Jenna Peterson

    Hi Theodora,

    I’m sorry to hear that you are a bit sick. I think that one of its causes is stress. I mean, I have an officemate who basically goes through the same thing whenever she’s stressed. I’m not really sure if she took any meds but all she does was to take complete rest and avoid getting stressed again.

    Have you been too busy lately or are you working out too much? I suggest you relax for a day or two and see how it goes. I definitely would want you to seek for another opinion because basing from what you’ve read there, the doctor didn’t actually explain what’s going on.

    Get well soon!
    Jenna Peterson recently posted..Samantha Jones and Menopause

    Reply
    1. Theodora Post author

      @Jenna Peterson: Hi Jenna! Thanks for the comment. I am certainly stressed–I got laid off last month and am looking for a new job. I’m trying to manage the stress of it as best I can, but exercising definitely helps with that. I’m going to keep seeing how cutting out coffee works and then probably seek a second opinion.

      Reply
  6. Katherine

    The convo with your doctor made me laugh – its’s so typical! It reminds me of when I went to the doctor for my hip/butt pain and his “remedy” was to stop running all together. I seriously wonder sometimes what we pay them for.

    I’m sorry you’re having such digestive problems, it seems to be a theme amongst runners for some reason (or maybe we just realize it more because we’re out and about without a bathroom more often? And talk about it more because we’re used to gross things? haha).

    Anyways, don’t give up, I’m sure there’s a doctor out there who can ACTUALLY help you! I feel like the heat probably does help stomach problems this time of year either :-/
    Katherine recently posted..8 Mile and Muffin Monday!

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  7. Lizzy

    This may sound crazy… but my friend Nancy is a GI nurse and I swear she cured me. Not completely obviously (as evident by our weekend together last month) but I’m a strong believer in thinking/telling your stomach that you will be okay. Like talking to your stummy and saying things like “now is not the time to behave like this.” I know that sounds crazy, but a lot of IBS can be mental and I if you have a positive attitude about it, it can get better. I swear!
    Lizzy recently posted..Weekend & Running Thoughts

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  8. lauren

    I’m not sure the wait or cost to see Dr. Peter Green, but he’s worth it. He runs the Celiac Disease Center at Columbia and my family has been working with himn through our celiac foundation/seeing him as patients for 13 years. My best friend recently was diagnosed by him with small intestinal bacterial overgrowth after close to 10 years of running to a bathroom. She basically got the same bs IBS diagnosis as you from many gastro’s. Hope you get a proper diagnosis soon.

    Reply
  9. Stacey

    Has anyone testsed your gallbladder? It sounds to me like those are the same symptoms I had when I had a non-working gallbladder. They eventually removed it, and after about 6-9 months of my body getting used to, you know, NOT having a gallbladder at all, I haven’t had any other issues. I mean seriously, like, 99% of all stomach-related issues are gone. I’d venture to say that I have LESS stomach-related issues than a normal person now. IRON STOMACH.

    Reply
    1. Theodora Post author

      @Stacey: I have had so many tests I don’t remember what’s been tested for and what hasn’t, but I’ll ask about that.

      Reply
          1. Stacey

            @Theodora: Yeah, it’s a No Fun Test for sure. It’s basically, “If you puke, your gallbladder is broken. If you do not puke, we still do not know what is wrong with you, but we wasted a lot of your time.”
            Stacey recently posted..WIW

  10. ChristIne

    Hey, have you ever looked into getting an IGg and or IGm food intolerance test? It’s a blood test that can help you see what levels of food intolerances u may have. Sometimes even healthy foods can cause this and once u eliminate them, your symptoms go away. A lot of my clients have seen success going this route. And as for probiotics- you’re better off taking a capsule form rather than activia, and if u can find a multi probiotics, that would be even better.

    Reply
    1. Theodora Post author

      @ChristIne: Is that different from the food allergy test? I got the food allergy test last summer…

      As for the probiotics, I’ve been trying the Attune probiotics chocolate bars. Honestly, so far, coffee seems to be making the biggest difference. I’d say 95% of my stomach problems have gone away since eliminating it last week.

      Reply
  11. Juliette @ Finish Your Broccoli

    How frustrating. Have you looked into an alternative doctor that focuses on gastroenterology? Sadly, many “regular” docs out there aren’t into offering alternative therapies or even spending time to get to the root of the problem so they can offer you solutions. My mom is a family physician (based in Philly) who practices integrative medicine, so she combines traditional and alternative medicine, knowing that there’s use for both schools of thoughts. I’m sure there are alternative or integrative gastro docs in NY who could offer some alternative solutions for you. Wish I had some suggestions of docs in particular!

    Reply
  12. Averie @ Love Veggies and Yoga

    just read about your meetup at Pure..looks awesome

    what you are describing here..i lived for about 20 yrs in this state. Finally in my mid 20s I stopped eating gluten, dairy, soy, and went from veggie to vegan. Healed my gut with probiotics, fermented foods, laid off all allergens/trigger foods that made me feel awful from cayenne pepper to nuts to gluten and now, after about 7 yrs of really hard work, I can have trace gluten and dairy again.

    I have all this on my site but anyway. Just wanted to say…hang in there!

    Reply
    1. Theodora Post author

      @Averie @ Love Veggies and Yoga: It was pretty awesome πŸ™‚ And thanks for the comment…I’m definitely going to do some experimenting and see what works best. It’s crazy what a difference cutting out coffee has already made. If it’s as easy as that, I’ll be a very happy girl.

      Reply
  13. It's the gluten.

    Your story sounds almost identical to mine.

    My blood test and endoscopy came back negative for celiac disease, but I decided to give up gluten anyway. It was the best decision I ever made. I needed to really be committed to it for a several weeks before I saw results and started feeling better, which was tough, but it has been completely worth it.

    It’s been four years now and I don’t even miss wheat. There are so many great substitute products out there these days, and restaurants are starting to be really aware of gluten intolerance as an issue — especially in NYC, you lucky girl!

    I am lactose intolerant as well (sounds like you are too), and at the same time I gave up gluten I also started being much more strict about trace dairy intake.

    And finally, I can be a bit of a type-A stress case, too. A couple of years ago I went on a very low dose of an SSRI anti-depressant for anxiety issues and mild depression, and my belly issues VANISHED for good.

    All in all, it takes a bit of hard work but is by no means impossible and is worth it every single day. I’m happy to follow up with my favorite products and GF restaurants if it’s helpful.

    By the way, I’ve been a reader for forever and have really learned a lot from you. So thanks for putting it all out there!

    Reply
  14. Sarah

    I wanted to comment to let you know that I’ve had stomach issues (and migraines) my whole life…BUT after years of testing and non-conclusive results I had an MD in manhattan suggest I stop eating gluten and dairy. None of my tests suggested I was allergic to either but I decided to give it a go, but giving up all gluten and just backing off on dairy. It took a few weeks but 1.5 years later I’m still gluten free and have very few stomach problems or migraines. And when it worked so well for me, my mom tried it too, she’s also had chronic stomach problems her whole life and she is feeling a lot better too.

    Now that’s not to say that going off of gluten is the magic cure for everyone, it isn’t. But I just wanted to say that if there is nothing else “wrong” with you (clinically speaking) then figuring out if a food (or foods) is giving you trouble can be life changing. It was for me! If you’d like to know anymore about my journey to figuring it out I’d love to share. So sorry you are dealing with this, I know how awful it can be.
    Sarah recently posted..I Love the Shore

    Reply
    1. Theodora Post author

      @Sarah: Thanks for the comment! So far, it really seems like cutting back on coffee has made a GINORMOUS difference. I felt basically fine the days I didn’t have it. Today I’m working on a big project and had some and I don’t feel well again. I’m trying to be optimistic that it may be as simple as coffee πŸ™‚ But if not, I probably will try GF, and am going to try to get a second opinion. Have you found doctors in NY that you would recommend?

      Reply
  15. Megs

    Been a shy reader and havent commented before but love your blog. I too have been having similar issues. Just got blood work back from primary doctor and it was negative for Celiac. Yet when I did the elimination diet my issues went away. Its very frustrating πŸ™

    Keep your chin up!!

    Reply
  16. Sasha (Blueberry Dimples)

    I also went to a gastro last year and was having similar issues (due to stress) they also said IBS. I’ve started eating clean whole foods (smaller meals)usually 4-5 a day. I also don’t have much caffeine. I’ve also found it very important to stay active and fit because that’s a great way to manage stress before it starts affecting you in a negative way. I haven’t had many problems since!! I also tested negative for celiacs/all of it. I don’t abstain from wheat but I def don’t include it in every meal.
    Sasha (Blueberry Dimples) recently posted..Business Speak

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  17. Megan (Braise The Roof)

    You might want to check out a homeopathic dr! My sister had all kinds of GI issues (bloating, urgent bathroom runs, etc) for about a year and finally went to see a homeopath. She tested her for food intolerances and after doing some tests she feels completely better. It took a few weeks, but it’s much better than relying on Immodium! πŸ™‚
    Megan (Braise The Roof) recently posted..Roasted Cannellini Beans

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  18. Nancy

    Hey I’ve been reading for awhile and love the blog – I’ve had colitis forever and finally found a GI in the city who I love (and I’ve been to a ton) – Vinita Jacob at Cornell. Shes smart, thorough, explains everything, and super friendly. Also, not sure why, but b12 shots seem to help out with flares…

    Reply
  19. Britt

    I just thought i’d comment because I see a lot of the same types of comments above about testing negative for celiac but responding to reduced gluten intake…celiac disease and gluten sensitivity/intolerance are two different things. Just because one tests negative for celiac doesn’t mean you are able to tolerate gluten. It’s actually thought upwards of 20% (most studies stick around 10-15%) of Western society is gluten sensitive.

    Most folks seems to have the right idea, just because you test negative for celiac, you should still do a several week test run of gluten-free living and see if you notice a difference. If not, you can definitely rule out any type of gluten antibody reaction and move on to the next thing!

    Reply
  20. Heather @ Dietitian on the Run

    What a punk – I really hate that Drs seem to think “Celiac” or gluten intolerance is now the answer that everyone wants/expects to hear. It may help you to cut back on gluten (who knows), but there are SO MANY other things that could be contributing – sounds like he totally discounted anything else. Gah.

    I hope you find some helpful answers soon! I would try focusing on less-acidic foods (i.e. less coffee – which you know πŸ™‚ ). And only change one thing about your diet at a time, that way you can actually pinpoint what works/ doesn’t.
    Heather @ Dietitian on the Run recently posted..Hail, Ben & Five

    Reply
  21. michelle

    I’ve been having similar problems lately, and while I’m still waiting for my doctor’s appointment, I’ve been taking calcium citrate in the interim, aka Caltrate. Get the kind without magnesium (as that can make things more urgent). It is amazing – I can even have a small cup of coffee when I take it! You’ll notice a difference in one day.

    Reply

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