Gut Reaction- My GI Story

Introduction:

My name is Kelly and I’m an Occupational Therapist working in an industrial setting (folks working on a production line making cars) I’m married to my best friend and we have 2 beautiful daughters. My husband is the one who found the books, Breaking the vicious cycle (Gottschall) and Raman Prasad’s Colitis and Me, along with his SCD cookbook.

Symptoms:

Since I have been on the SCD, my symptoms have been greatly reduced. Before that, I would go to the bathroom between 3 and 6 x day (sometimes more depending on if something really tore me up), always loose (still are actually that hasn’t changed from being on the diet…yet), very urgent, tons of bloating and gas. I tell people, some know because they’ve been around me and have heard it themselves, but I would liken the sounds that my gut would make, to the sound of drain pipes with fluid running through them, like they just got unclogged! It sounded terrible! That has been gone since I have been on the Specific Carbohydrate Diet.

I was diagnosed with celiac disease and lactose intolerance in 2006 and UC in 2008.

My problems started around the age of 30, and were kicked into full gear after my pregnancies. I haven’t had the severity of some of the problems I have read about, like hospitalizations, steroids etc., I just was feeling pretty lousy and going to the bathroom WAY too much, I figured I needed to do something about it. Having both CD and UC, I could never tell what was bothering me, so the SCD sounded promising for that fact – it really helps with figuring that out.
I always thought when I was younger, please don’t let me have digestion(mainly poop) issues. :)   Well as life goes, you sometimes don’t get what you wish for. Now I am just wishing that I can stop this from getting any worse. My 2 biggest fears: colon cancer and having a colostomy bag!!
For the venting part of this forum, it sucks being limited in what we can eat! I mean you go to a grocery store and only about 10% of the food is ok for us to eat. (that’s a statement about all the crap that’s out there as well, but that is another story) I have found myself at times very envious of those who can eat whatever they want with no regard to their digestion, when EVERYTHING we eat we have to think how is that going to affect my digestion? It’s just a huge adjustment to get used to and I wasn’t even eating “bad”. The SCD has helped tremendously with frequency, urgency, gas, bloating and overall feeling blah in regards to digestion. It has also helped me to understand the digestion process and what is really going on, to understand that even some “good” foods aren’t good for people like us. Frankly, many foods people eat are not good for them either, they just may not have the symptoms that we have. The diet is very limiting but that’s kinda the point, to break the cycle by limiting the digestion process and I’m hoping for continued healing. It has not been easy, but I have been feeling much better on it.

Questions for Others -

1. Anyone else out there with both diseases?
2. Anyone on the SCD, if so, how long before you had normal BM’s? ( I know it’s different for everyone, but just some approximate range)
3. Anyone allergic to dairy? if so, how did you know it was dairy and not something else? is it the casein protein that people are allergic to?
4. On the diet, I have had a cup of tea, with lemon and honey – do you think that will affect things badly?

Where I’d Like to Be in 1 Year:

I’d like to be mentally adjusted to this lifestyle change and having normal BM’s
Colitis Medications:
No medications I ever took were worth a darn. I have taken Asacol, 400mg pills, 12 a day (I believe that is the max. dose) I have also taken the antispasmodics Levbid, Levsin (Hyoscyamine), and Dicyclomine HCl
I personally thought the asacol made my gas worse since it’s a time released pill, the coating had to make it’s way through your entire digestive system to be released in the colon, and it always ended up coming out the other end. That just did not seem right.
I feel lucky that I never ended up taking steroids, I think I was dead set against that. But had my symptoms been worse I don’t know.

written by Kelly

submitted in the Colitis Venting Area

Tags: celiac, lactose

24 Responses to “Gut Reaction- My GI Story”

  1. stephenMarch 25, 2012 at 10:28 pm #

    Ugh they say green tea is good for you
    I am still unsure about tea affecting UC
    Caffeine is supposed to be bad for UC
    I have cut it out of my life almost 100%

    There are some good teas at the tea shoppe that are supposed to be good for digestive issuesrl I know claims it has all but cured her, so perhaps its worth a try

    • KellyMarch 28, 2012 at 9:42 am #

      Thanks Stephen – I may have to branch out and try some other teas. I just like my tea black, strong with cream and sugar… I know that is now a dream… *sigh*

  2. MelissaMarch 26, 2012 at 3:19 pm #

    Hi Kelly,
    I am allergic anything with cow’s milk. I had testing done a few years back by my naturopath and it came up as reactive. He told me to avoid anything with casein. I do pretty well when I do avoid that, as well as the other things that came up as reactive… there were 12. Ugh… talk about a life change. And it was all the yummy stuff! lol
    Melissa

    • KellyMarch 28, 2012 at 9:46 am #

      Hey Melissa,
      Thanks for your comment – I need to get tested. It would be nice to know if that is an underlying problem of mine. How does a naturopath do the testing? I’ve never researched that at all. Of course isn’t it always the yummy stuff? sorry that you have 12!! Do you mind mentioning what they are?

      • MelissaMarch 28, 2012 at 5:51 pm #

        Kelly, the test my naturopath did was a blood test. The company that does the tests is called Better Health USA. Their email is betterhealthusa.com I believe they have section on their website that helps you find someone near where you live who does the testing.

        Let’s see… I came up reactive to: Alfalfa, cantaloupe, eggs, cow’s milk, mushrooms, oats, radish (which I NEVER even eat), sesame, sunflower, wheat, bakers yeast and brewers yeast. The thing that is hard of course is the wheat and the yeasts. It seems like wheat and yeast is in everything out there! It can get frustrating. It is also hard b/c I love wine, and I used to love good beer. Beer is obvious b/c of the wheat- but of course it has brewers yeast too. Wine has brewers yeast also. If I want to drink I am supposed to stick to gin or vodka. I can only handle vodka- I hate gin. It’s just not the same to sip on a vodka drink as it is sipping on a glass of wine (at least for me).

        I recently had a few months of not being so careful and eating things I shouldn’t here and there. Things slowly crept up on me and the last few weeks I’ve been feeling pretty bad again. That experiment sure turned out the wrong way for me. LOL

        Melissa

        • KellyApril 5, 2012 at 1:34 pm #

          Hey Melissa,
          Thanks for sharing that info on the tests for reactions to other foods. Yeah that does suck about not being able to drink wine or beer..:( You are right, there is nothing like sipping a glass of wine! I remember when I first started drinking beer and decided that microbrews were pretty tasty of course I thought wheat beer was the best!! then I found out I was gluten intolerant. That was a bummer. Since then I have realized how many more things I would say that about and I have to admit, I’m still pretty ticked about it! The one good thing about our situation is that we know what is causing us to feel bad, whereas others may never know b/c they did not invest in themselves to find out.
          Keep on keepin’ on!
          Kelly

  3. BevMarch 26, 2012 at 4:00 pm #

    Hi Kelly,

    I can only chime in on what you said about none of the UC drugs being worth a damn. You said it! I just stopped the asacol that I have been taking since my first diagnosis, in 1999. 13 freaking years! You know, you’re right…it never really did much for me, now that I look back on everything. But I kept taking it, sometimes a higher dosage during a flare, but always the ‘maintenance dose’ to retain remission. Ha! I will never take ANY medical drugs again. (FYI, I have a thing against presription drugs, as that’s how I got into this mess in the first place, having taken Accutane for acne, four times, shortly before I was diagnosed with UC. Accutane has been proven to actually CAUSE UC! Nobody told me that back in 1998, when I first took it. How do you like that?!).

    I too, have always turned down the steroids, Remicade, and immune suppressors like Imuran that the doctor has recommended I take, off and on, over the years. Every time the doctor tells me that they are safe, and that my immune systen needs suppressing in a flare, I don’t buy it! How can that be right, right? I figure that that is no way to treat a disease, or my body, by putting dangerous drugs in it, and feeling absolutely crappy while on them! Sheesh! I get so frustrated when I am called a difficult patient by different doctors, just because I no longer wish to ingest drugs that may hurt me…

    Right now, all I’m taking is probiotics, although they are making me nauseated (mind you everything makes me nauseated, prescribed, or natural…my body doesn’t tolerate anything, really), I figure this too, shall pass. Since starting the probitics, I have NO ulcerative colitis symptoms! No pain, no gas, no urgency, no blood!!! I have no idea why this has worked for me all of a sudden, but it has, so far, anyway. Maybe I just needed to get off the asacol once and for all after 13 years?! Who knows?

    Let’s keep fighting the good fight, thinking for ourselves, and saying yes or no to what WE want for ourselves…

    Cheers,
    Bev:)

    • KellyMarch 28, 2012 at 10:45 am #

      Hi Bev,
      Thanks for your comments. I have heard a lot about Accutane for acne causing UC (I think there was a class action lawsuit against them) Yeah, I’m figuring out that Drs don’t know a whole lot about what drugs actually do to the human body – they just want to be the one to “fix” your problem, if this drug doesn’t work try this next one. It is only recently that diet as a prescription has gained some acceptance and that is usually not from most MD’s (I’m trying not to make this a broad statement b/c I know not all drs fall into this category – some MD’s and DO’s are open to alternative treatments) just ones that I have come in contact with and from what I have read from many others. I trust the advice of pharmacists to give you the real deal about drugs, interactions and side effects.
      Wow, you took asacol for 13 yrs! I feel for you. ugghhh. We keep taking them b/c we’re scared of what will happen if we don’t! I just decided one day that I was no better for taking them so I was done. Of course too, I don’t seem to have the severity of symptoms as some of the stories I have read, at least it seems that way to me…maybe that made it easier for me to stop my meds??? IDK Yeah, they call you different b/c you’re proactive – what a load of bull!! I say keep on calling them out when needed. :)
      I am so happy to hear your symptoms are gone after taking probiotics! That is awesome! From what I have read, maybe it was just dysbiosis of gut bacteria and you needed to restore balance, by introducing more good bacteria. Maybe it was that simple, nonetheless, the results are fantastic. Thanks so much for your insight and thoughts. You keep fighting the good fight too :) Best of luck and I’ll keep up with you on this site along with all the other great people this has brought together. It is so helpful for me to be able to talk to people out there who understand.
      Take care!

  4. Shona
    ShonaMarch 26, 2012 at 4:46 pm #

    Hi Kelly
    Sorry to here you have both diseases. As if one wasn’t restrictive enough. I too have both celiac disease and UC. I am also lactose intolerant. I tried drinking lactose free cows milk but then spent the whole night in toilet. I drink soy milk and don’t have any issues with that. I was diagnosed with CD seven years ago and very recently with UC, 35cm of my large intestine has ulcers. Like you I don’t like the sound of steroid tablets but had to take it for 3 days and later on via IV while I was in hospital. This is my fourth week off work, i feel tired all the time and my bones feel a 100 years old. Yesterday my GI said I might have to go back on it for 12 weeks. I’ve asked to wait for 5 days as I would like to change my diet. I am already on a gluten free, no chillies/pepper, potato, tomato (foods from the Nightshade family). I come out in hives/rashes. I have heard a lot about the SCD diet here on this site, so will definitely look into that. Please do give us an update of any improvement on the SCD diet.
    We all are here for you as we all are affected by this disease one way or another.

    • KellyMarch 28, 2012 at 11:02 am #

      Hey Shona,
      Sorry to hear you have both too!!! Doesn’t it stink? From reading the BTVC book (Gottschall) I highly recommend it – it may give you insight into why even the lactose free milk was bothering you. It really made sense to me and I think the sugars were really exacerbating my isues. Since I have started the SCD diet and eliminated grains, dairy and most all sugars (honey is legal and grape juice with no added sugar) my symptoms have been greatly reduced and I feel better in general – gas and bloating gone, drastic reduction in urgency and trips to the bathroom! Hey sometimes you have to go on meds that you don’t really want to go on, I totally understand that and they have their place. I feel bad for you and all those that have been hospitalized b/c of these diseases. I feel lucky. Sometimes, steroids respond quickly to inflammation and can get things under control. I just don’t like that they ( and other meds) seem to be the only answer for most GI docs
      I appreciate your support and we’ll keep on being there for each other :) Take care and good luck with your diet! Give the SCD a try – it’s hard, but I think you will be better for it. Keep us posted on your progress. :)

  5. carmen spenceMarch 26, 2012 at 5:33 pm #

    Hi Kelly,

    i would like to know the brand of probiotics you are useing, and if i can purchase them in australia, also can you let me know what strains the are useing.

    thanks so much,

    Carmen

    carmwoman@gmail.com

    • KellyMarch 28, 2012 at 9:39 am #

      Hello Carmen,
      I just ordered my probiotics online from http://www.giprohealth.com. They were recommmended to me from the guys who wrote SCD Lifestyle – Surviving to Thriving (Jordan Reasoner and Steven Wright) because GIProHealth specializes in making SCD legal vitamins, enzymes and probiotics. Not sure how cost effective it would be as I don’t know what it would cost to ship to Australia?? sorry! It looks like Shona has a link to another site too. Best of luck to you! I will post my findings after I start taking them – I hope I have some luck with them.

    • KellyApril 5, 2012 at 1:49 pm #

      Hey Carmen,
      Sorry I forgot to mention what strains of probiotics I was using, I am taking GI Prohealth Scdophilus 10+ CFU’s of lactobacillus acidophilus (dairy free) This was recommended by the SCD lifestyle guys to stick with just the 1 strain to start off b/c some of the other strains while good for some, may not be good at first for CD and UC sufferers trying to heal. (may be introduced later like bifidus etc)I haven’t noticed a huge change or anything, but I am also phasing in foods, so it’s hard to tell with me??? :(
      Hope that helps and that you have found a source closer to you.
      Kelly

  6. AdamMarch 26, 2012 at 7:31 pm #

    Hey Kelly,

    I wrote this in our email, but I’ll put it down as well, for me, I stay away from honey as much as I can (and wooowie its awfully tough sometimes…:) when I’m in a flare up or if I am seeing/feeling some active symptoms, but when things are feeling good, I pretty much use honey freely and lemon and some herbal teas as well. I stay away from caffeine teas and coffee for that matter, since I’m trying to clear my body of that stuff, but lemon, honey and tea are all free game for me when I’m not seeing any symptoms.

    best of luck to you!!

    • KellyMarch 28, 2012 at 11:06 am #

      Hey Adam,
      It seems that staying away from ALL forms of sugar is the best bet, and yes that is extremely hard. Esp in this culture and if you haven’t done so before. It was a huge leap for me to switch to honey so… I know that may sound weird. Thanks for the info though regarding your personal experience – it always helps to know what others have tried and done.
      Take care!

  7. BlakeMarch 26, 2012 at 8:54 pm #

    Hey Kelly, I also have Celiac disease and had UC. I say “had” because I got my colon removed and don’t have UC anymore. I got tested for Celiacs at the age of 29, right in the thick of a major flare. I don’t know if this is true, but I find it hard to ignore, I think I had Celiacs way befoe I ever knew I had it. I’ve probably had it since high school, but I didn’t know any better so I spent my whole life eating gluten filled foods and I would have to think that probably started the whole UC thing for me. Anyway, I have been eating gluten free since I found out and I tried the SCD diet for about a month and a half during my worst flare that lead me to get rid of my colon. I really didn’t get any relief from the SCD, just lost a bunch of weight. You’re right, having to worry about what food you can eat truly sucks and you feel like you never know for sure anyway. I hope the SCD is what works for you, good luck!

    • KellyMarch 28, 2012 at 11:52 am #

      Hi Blake,
      I read your story – Wow! I think you are absolutely right. We probably have had CD for much longer than we realized b/c we may not have had as serious symptoms as we did when it was full blown. I am a firm believer too that the CD caused the UC b/c of all the time it went unchecked. I know sometimes people do not respond to the SCD and go on to do what you did for relief. You gotta do what you gotta do! Like I have said in other replies, I don’t think I have the severity like you have had. I am glad to hear you are doing well! Thanks for your support.
      Take care

  8. california karenMarch 27, 2012 at 9:08 am #

    diagnosed in january; ive done a lot of research, but havent found much food that dont give me intestinal cramps. Have you? sorry you have the same problems! does anyone have probs with cramps after going to the bathroom ; i have that prob. ? even when stools are semi formed and i also was told no tea!

    • KellyMarch 28, 2012 at 12:08 pm #

      Hi Karen,
      Maybe it’s a stomach issue, keeping a food journal may help in figuring out which foods cause cramps. Like I said before, it sucks to have to eliminate foods, but if it will make you feel better, it will be worth it. I think for anyone with digestive issues, just eliminating what the SCD Lifestyle guys call the 4 horsemen (dairy, eggs, nuts, sugar) will do wonders. I feel that until I got my system cleared out of the bad bacteria, I was just so messed up. You do that on the intro diet (I will not lie and say it’s easy – b/c it’s not, but now that I have done it, it’s worth it) I do not have cramps after I have gone to the bathroom. I used to have them before and during, but not after being on the SCD. No bloating, no gas, no cramps, and reduced urgency and frequency. Still working onthe not having loose BM’s, but hoping that will come and my probiotics will help. Check the diet out! Let me know what you think and if it worked. Best of luck to you and I look forward to seeing you on the site.
      Take care!

  9. Shona
    ShonaMarch 28, 2012 at 5:51 am #

    Hi Carmen,

    I too live in Australia. Certain probiotics are not sold in Australia but you can order them online for personal use. This site even mentions that these probiotics are helpful for chronic digestive diseases. Here’s the link below:
    http://www.return2health.net
    http://www.return2health.net/articles/candida/buying-threelac-in-australia/

    Hope this helps.
    Shona

  10. KrisMarch 29, 2012 at 1:56 pm #

    I started SCD on Feb 27 of this year so it’s been about a month. I have a bunch of great days in a row then a bad one or two but believe I am slowly moving in the right direction. Medicine does not work for me and there is not another reasonable option. (UC diagnosed 2008)

    • KellyApril 5, 2012 at 2:00 pm #

      Dear Kris,
      Good for you – that is tough to get throught the first month, so way to go! I’m super glad you have a bunch of great days in a row (do you mind expaining what “good days” mean to you?) I do think you are heading in the right direction. Keep it up and hope to hear from you again on this site. It has been a great place for me to find others to share this very personal information with, so thank you for sharing!

      Peace,
      Kelly

  11. KristyApril 10, 2012 at 11:04 am #

    Hi Kelly,

    I was diagnosed with UC 7 years ago during my first pregnancy. Since then I have taken many many drugs (Asacol, Hydrocort Enemas, Entocort, Lialda, Prednisone, and now finally Azathioprine due to my last flare that lasted 6 months) I can’t tell you how sick I am of being on these drugs and the effects that are taking a toll on my body. I have been exploring the SCD diet and have decided to give it a try. It is interesting that the 3 things that are eliminated from the diet (sugar, grains, and milk) are the 3 things I tried sporatically to stop during my last flare as my symptoms got much worse when I ingested those things. I am nervous though as I am cooking not only for myself but for my husband and 2 kids (ages 6 and 4). Have you found that you have had to make two different meals for each meal? I have never been one to write or read support groups and such but after this last flare this past summer I was so sick and no one really understood what I was going through. It has been nice to read others comments and know that I am not alone! Please take care!

    • KellyApril 10, 2012 at 3:24 pm #

      Hey Kristy,
      I know it sucks to have to be on all kinds of meds- esp when they don’t seem to work!! I always worried about that too – what affect is this having on my body? my liver? Regarding the SCD – I have found that at first, I needed to make 2 diff meals and that sucks too! But, once you get into the diet, there are things that all can eat, you just have to modify your portion of it. For instance, we make chicken sauteed with green pepper (or any kind of pepper) and onions almost like fajitas, and then I just eat the chicken along with whatever pureed veggie I’m eating at the time. The rest of my family can put the chicken etc into a torilla, put some cheese on it etc.
      Interesting that the 3 things you tried to eliminate were those that gave you problems prior – stick with the SCD, I think you will find some definite benefits from it. Add a probiotic as well. (see my other postings for suggestions) In the end, what you eat on the SCD is really healthy food that everyone should be eating. Just sometimes I don’t always want to have to cook everything I eat for every meal (I exaggerate a little, but you know what I mean) :)
      I have never been one to post on or read support groups stuff, but this one has been amazing(thanks Adam!) and it is really a relief to hear others stories and what they have experienced, what has worked for them and not worked. It just helps to know that people understand, and this is a place where we can talk about those not so nice subjects to talk about! So I offer that to you – I feel your pain along with all the other people out there. Hope to hear from you soon. You take care too and keep us updated on the diet experience.
      Love and Peace,
      Kelly

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