Thursday, July 12, 2012

Ongoing saga...

Back at the end of May I wrote about my relentless stomach/GI issues when I run, and my decision to try a gluten free diet.

After that post I continued on the gluten free diet. I educated myself about it and read labels like it was my job. If I wasn't sure about something, I erred on the side of caution and did not eat it. I was crazy careful.  My GI symptoms while running did not disappear. They improved somewhat, but were definitely not gone. I was/am still dealing with this on a daily basis and on most of my runs.

My doctor had me see one of his colleagues that is also a family practitioner but has more experience with GI issues, and he did some further testing, including a panel of blood tests that he was confident would tell us "yes Celiac's" or "no Celiac's". The blood tests came back "perfect". The doc said that with the results as good as they were, he was confident I did not have Celiac's and there was no reason for me to be on a gluten free diet. I asked if it was possible the blood tests looked good because I had been off of gluten for six weeks at that time, and he said that he would not expect my results to be as good as they were even after being off of gluten for six weeks if I had Celiac's. He also felt (because of the blood test results) that there was no reason for the endoscopy/biopsy. He thinks I just have a very severe case of exercise/running induced diarrhea.

So off I went on my merry way, relieved to not have Celiac's, to eat peanut butter and jelly on real whole wheat bread and to have a bowl of non-gluten free cereal (with almond milk - I am still avoiding dairy as I know that bugs me), and within a short period of time, I HURT. I felt sick. I felt awful. I didn't care what the tests said or did not say - I knew that eating gluten made me feel really bad. So I went right back to the gluten-free diet.

I did some reading about how inaccurate the testing is for Celiac's, and how gluten sensitivity has similar symptoms and would not produce the test results that Celiac's should. Honestly, I don't know if I have Celiac's or gluten sensitivity, but I am done with testing since it is inaccurate, expensive and not fun. I do know that I feel tons better not eating gluten, so I am not going to.

The new doc prescribed me an IBS medication to try called Bentyl. I do not even like to take Tylenol or Ibuprofen when I have a headache, so I am not a big fan of medication, but I told the doc I would try just about anything if it helped me run without the emergency pit stops.

And then I got the medication and started reading about the possible side effects. Drowsiness. Dizziness. Blurred vision. Inability to sweat and heightened risk of heat stroke. The directions said, "Avoid activities that might cause you to overheat (such as doing strenuous work/exercise in hot weather."

Seriously? Does this sound like something I should even try?

I get six hours of sleep most nights, I am the mom of 12, and I am training hours a day. I don't need any help being drowsy, I need to see straight, and I am not going to avoid strenuous exercise.

So yeah - the medication sits thus far untaken, and I am frustrated.

To recap, (despite hating to be high maintenance with my eating) I am eating gluten and dairy free. I eat small meals throughout the day instead of three bigger meals. I am well-hydrated. I do not eat anything before a run or during a run except for liquid fuel during long runs. I have tried peppermint oil, over the counter meds, and a prescription medication (and was referred another one I do not think I will even try). I know some foods that are likely to make things worse (broccoli, onions, etc.) and I avoid them before key/long workouts. I very rarely eat fatty foods.  SHEESH. What else is a runner to do?

I am hoping maybe more time on the gluten-free diet will just lead to continued improvement, even if it is slowly.

For the moment it seems I just have to deal with this as reality at this time and handle it the best I can. I am so used to it during training that even though it is frustrating, I just know all the possible pitstops on all my routes. I do not let this challenge affect my love of running, my goals, or my training. During races though it REALLY frustrates me. Chances are high I won't make it through the half on Saturday without having to dive into a portapotty, but I am trying not to stress about it (since that doesn't help!), and if I have to stop quickly I won't let it get me all stressed out. (Last year I lost a minute and a few seconds for this reason in this race and still won my age group).

Any advice out there? Am I missing anything? Would you try the Bentyl and just hope to not end up drowsy, blurry-eyed and dizzy, collapsing into a pile mid-run because of of heat-stroke?




31 comments:

Sybil said...

Two things (well, three):

first: big hugs! How frustrating. I am so sorry you are dealing with this.

second: I tested negative for Celiacs through a blood draw and on a biopsy, that said, my experience with eating gluten is that it made me feel bad, so I stayed away from it. I think you can react badly to it without it showing up on a test.

third: If you could, I would try the medicine to see if it helps, if you get the side-effects, then go off of it. Some meds you can't go on and off so willy-nilly, but if you are able to stop it at the first sign of trouble, it might be worth a try.

Good luck! I hope you get an answer. I know it can be so frutrating to go through all of this.

Suz and Allan said...

I'm so sorry to hear this. My dad has several things that his system just can't handle and as I get older I am the same way. Avoiding grease, fried foods, and sticking to things I know don't upset my system help. Hopefully the gluten free diet will continue to help you.

{lifeasa}RunningMom said...

I am so sorry but second maybe giving the med's a try. They have to list all the side effects and you may not experience one of them.

The only other thing is to watch preservatives or anything like that you may be getting. My mom is super sensitive to some and has learned which she can't tolerate without having her IBS act up.

Good luck!

portia said...

I too have a crappy stomach. :) I don't think my issues are quite as severe as yours, but I recently had a running "accident" so let's just say I'm experienced in this realm.

What works for me is to be completely emptied out before a run (and definitely before a race).

To do this, I do the same thing every morning before I run. I drink 8 oz of water as soon as I get up, with Vega Pre-Workout Energizer in it. It's a powder, kind of gritty. If I'm worried I'm a bit constipated, I drink a full glass of water first and then another glass with the Vega powder in it. For me, this usually causes a complete and total evacuation. (That sounds so lovely right?). It may take time, so I need at least 90 minutes - 2 hours before I can run.

After the bathroom trips start, I eat a light breakfast.

People say not to eat roughage before a race, but I do it anyway because I want to be completely emptied out before I run.

I haven't found anyone else for whom the Vega stuff works, but you might try it and see. You can get individual packets online and in some health food stores. It's not cheap but for me it's worth it. (I have no affiliation with them by the way.)

bobbi said...

This is something that I've been working on since I started running. It is so incredibly frustrating to have anything other than my LEGS take me out of a race. After speaking with a friend who struggles similarly, I took immodium for my last marathon and it made a world of difference. It was something I'd tried in the past, but like you, I loathe taking medication, and I relaized that I wasn't taking nearly enough. Something to think about, in case you haven't tried it, or teied enough of it...

Jill said...

This whole stomach thing seems to be a common occurrence amongst distance runner. I know 4 years ago I really had a difficult time and had to cut out all gels and resorted to b&j on white bread and that worked...but what a royal pain to carry that on a long run or marathon. I've had to play with many products and finally found a few that work for the most part - at least as long as I hydrate, hydrate, hydrate, hydrate and then hydrate!

As for GF, maybe you instantly felt bad because you had been off it for awhile and then went right back on it without easing into it. Maybe. You know, too, that there is a different between GF and a wheat intolerance. I went GF for awhile to help with my severe sinus issues but it didn't do anything and I wasn't get enough "fortified enriched" nutrients (Folic Acid)found in everyday bread. Now, I have a small piece of whole wheat bread (fortified, of course :)) before I run with a bit of PB&J and it seems to really work.

I know it's so frustrating...hang in there and I hope you find an answer. I'd at least start with a small part of the medication (a 1/3 to start, perhaps) and get your body adapted to it then maybe the side effects wouldn't be so bad (My daughter did this with her antidepressant). Also, my dear friend, Katie, had this very same problem and found things that worked for her. She doesn't blog anymore but here is her link, I'm sure you could read though some race reports as I think she gives a lot of clues in there...or send her an email, she is super sweet and would be glad to help!!

http://one-run-at-a-time.blogspot.com/

Terzah said...

I have this problem too. Finding a food that acts like a "voiding" mechanism is a good idea (the idea of Immodium scares me!), but I bet what works is different for everybody. For me, coffee can do the trick before a race. I don't usually drink it and that fact, combined with race nerves, is enough of a shock to my system that I get everything out before a race (training runs are a different story....). Good luck, Erin. I'm sorry you're still dealing with this.

proudpatriot07 said...

I just started reading awhile back and wanted to comment. I hope you feel better soon, I don't know a single runner who hasn't had GI issues and different things work for different people. I definitely drink coffee before I run and there are certain foods I avoid as well, especially dairy! So sorry you're having to deal with this during key training though, when minutes and seconds are so important. *hugs*

BabyWeightMyFatAss said...

Can you go to a homeopathic Doctor? Sometimes they are the ones with the tests that most MD's don't think of.

Jolene said...

Bentyl never helped me...I, too, was to the point of frustration (but have the opposite problem as you)...and meds never helped.

As for food allergies...the blood tests for Celiac can be very sensitive and pretty accurate but the only definitive way to check for sure is for you to consume the product regularly and be scoped after a period of time.

My kiddo is allergic to so many stinking things (soy is her big thing along with dairy, peanuts, tree nuts, sesame, etc). She was scoped and checked for celiac and thank goodness for that negative! Soy is bad enough to deal with!

Gracie said...

I don't think Bentyl is the most radical choice for you here, or even a viable long term solution, but I wouldn't be afraid to try it. I would try it before a medium-long run to see its effects. It can cause the listed side effects, but remember that most of those side effects are bunk because everyone is going to tell you they felt dizzy, got a stomach ache, had headache, etc.
Actually, as a very old and tested drug - and one based on nature - I think dicyclomine is safer than many newer meds. If you are going to try an anti-spasmodic, you would probably be safest with Bentyl. Just make sure you test it on a day when you don't have a lot of pressing activities in case you DO feel drowsy!

Anonymous said...

My nephews celiac's disease was only diagnosed with an endoscopy. Apparently it is the only accurate method. If someone has celiac's (it sounds like you do) they will react to all gluten. Opposed to an intolerance. It is hidden in many things ie it might be in your running fuel products. Just a thought. My sister found it very useful going to a celiac support group to learn more about the disease and hidden uses of gluten.

Beth @ Miles and Trials said...

Erin, I wish I had something to add or some helpful advice for you, but I'm sorry I don't. Best of luck at the race on Saturday, I'll be praying for a porta-potty-visit-free run for you. :)

Emma said...

I have to tell you that both a GI doc and a PCP have told me that my loved one needed to eat gluten for a MONTH prior to the Celiac test or it would not be accurate. That was fun.

It's true that the blood test isn't totally accurate, and that an endoscopy is. Celiac is an autoimmune thing as you know, and if you did have it the longer it goes undiagnosed the more damage it does to your gut. (I am not a doctor though!)

Best of luck!

Caroline said...

I am too familiar with GI issues..it.is VERY frustrating! I would try the med and cut the pill in 1/2 at first.

I would also take probiotics AND prebiotics. if you are not taking any yet start with just probiotics for a couple months and then add prebiotics EDEFEN)

Anonymous said...

I take immodium before any long runs and its just pauses things for a day which I really appreciate. I'd never run a longer run without taking it to be honest. Good luck!

Jen@runfortheboys said...

Boo hiss :-( but way to hang in there as you are on the path to discovering what works! You just keep on keeping on, friend! Hugs!!!

Rene' said...

My son does not have Celiac Disease (he had the biopsies and everything), but he was diagnosed with a gluten intolerance that we found through his naturopath. On gluten he is bloated sick and irritable, off gluten he feels great. Maybe your body just can't tolerate it. Good luck Erin.

Kelly said...

As another commenter said...try Immodium. I have a friend with your same problem. She takes Immodium on race day and it works great. She does not take it any other time because she doesn't like meds either.
Love you and your blog...thanks for taking the time to write.

Kelly in SC

Martha said...

You should eat and do what works best for you! I too never take medication if I can help it, and all the people on the paleo diet show that a gluten and dairy free diet can be incredibly healthy, especially for serious exercisers such as yourself. I would look into the paleo diet and find recipes and inspiration for eating and living there! (I personally am not on the paleo diet but I find it interesting)

Veganrocks said...

I have a niece who's "gluten intolerant" but has tested Celiac negative. That said, she has found GREAT relief by following a FODMAPs diet. Here's a link..
http://www.todaysdietitian.com/newarchives/072710p30.shtml

Just give it a look!

Jessica (Pace of Me) said...

oh erin, i feel like i could have written this post! it made me tear up reading it - because i can so relate to every single word. i have been through tests and they all come up negative too. i know i FEEL better when i avoid dairy and gluten, but the fact is i still deal with my issues even when those things are not in my diet for prolonged periods of time. i have just come to accept it as a part of my life, and like you i plan my routes so that i know there will be places to stop when i need to. i know i will have to deal with it at races. it is so frustrating, but i am not going to let it prevent me from doing what i love and living an active life!! xoxoxo and i am so so so excited for your race this weekend!!!

KaeBee said...

How frustrating! So, my 3 year old daughter is (obviously) not a distance runner :) but was having all sorts of stomach cramping and diarrhea. I would have never thought of testing for food allergies if our doctor hadn't suggested it. We had been going gluten and dairy free to see if that helped, but it turned out she was allergic to everything you eat when you're going gluten free (in addition to wheat). Corn, rice, oat, spelt...

She has to eat pretty much a grain-free diet. (Some people recommended I google "paleo diet") Her tummy troubles finally cleared up.

I hope you can find something that clears up your problems!!!!

Laura @ Mommy run fast said...

Oh man, that is no fun. Isn't it frustrating that even doctors don't have the right answers sometimes? Like you, I would avoid the medication and continue to experiment as much as you can, although it sounds like you've done just about everything. Do you drink coffee? Acids like coffee, tomatoes and oranges can sometimes upset me like that. I've had to give up coffee altogether. But there is probably no one magic solution. So sorry you're dealing with this!!

Emily said...

There are other reasons to not eat gluten besides having Celia's disease.
I am gluten, dairy, sugar-free due to the inflammatory effects of these foods. Gut restoration takes many months, however. I would also consider juicing and a really good probiotic.

Great book: The Anti-flammation Diet and Recipe Book. Excellent resource.

Keep it up! You will see improvements!

Gracie said...

Thanks for the email - I will get back to you ASAP but until then here is a link to my race review!

http://complicatedday.blogspot.com/2012/02/louisiana-marathon-race-review-and.html

Vicky Cook said...

This is possibly TMI and I'm sure you do this already but I get up a good half hour before I'm due to run, regardless of how early the start time is so that I know I will have time to 'go' before I....go. I think this has made the biggest difference to my stomach issues. I also avoid any and all 'sports' drinks, gels, beans etc etc. I've not run more than around 12 miles for ages though, so I'm hoping this (and no high fibre cereal or dairy 24 hrs before) will stand me in good stead for when it's time to hit some big miles. Good luck.

Anonymous said...

I don't have GI probs with running (thank goodness!), but I did pass out after my last race and need emerg iv fluids/ice blankets/etc, so I would personally definitely avoid any meds that might overheat you during a race because that is terrifying and dangerous and way worse than pitstops!

lindsay said...

Girl I feel your frustration with the "medical help"! I'm glad you noticed a difference with the gluten - it's nice to have that definite "sign" to avoid a food. Maybe there is yet something else in your diet that could cause the running poo? :-/ I know eating so limited is no fun, but personally I'd rather do that then take pills like you said. I probably wouldn't risk the med - unless you can experiment with Short runs in the AC? Tough call to make. Good luck

Anonymous said...

I have the same type of issues you have- horrible and painful tummy cramps after about 5-7 miles of running and needing a potty NOW!!! I was so afraid when running the Chicago 10 mile race, that I would need a potty and have to wait (15,000 runners)....for the first time that race, I took an Imoodium about an hour before I ran and IT TOTALLY WORKED ...I felt GREAT the whole time- had not one single stomach episode and didn't visit the potty one single time. Try it- 1 Immodium an hour before you run.
Kelly in Michigan

Anonymous said...

Just saw mention of this on msn fitness the other day about how all the sports drinks and gu's and such are not great for your GI and long time athletes get bad stomach issues. It had a link to this company for their natural products http://www.skratchlabs.com/pages/about-us but also recommends taking real food on runs such as pb&j since that is what your body is meant to digest.