Introduction:
42 year old business owner, wife & mother of two young girls. She spent 13 yrs working with physicians as an association executive and currently lives is West Sacramento, California.
Some more about me:
I have been practicing yoga for more than 20 years and recently started taking taekwondo with my daughters. I love bike riding, taking our Chesapeake Bay Retreiver on hikes and swimming & I enjoy traveling to see new lands, cultures and foods. I’ll be moving to Australia later this year to live on a farm and spreading the word about healing UC (assuming my recovery is successful). My friends love to tease me about my weak bladder and the many times it has embarrassed me – as well as the fact that I’m always willing to “give it a go” even when an idea or approach is untested or fails. I believe that innovation & learning is a key to growing and staying young. Mostly I try to follow a path & journey to keep my faith first & foremost as it has never let me down.
Symptoms:
When chronic or having a flare up I have bloody diarrrea & painful cramps that had me buckled over crying.
Diet to Help or Heal
I was diagnosed with UC in November, 2009 after a series of other diagnoses including fibromyalgia & c-deficile. Now those diagnoses were true, but masked my UC until a colonoscopy revealed bleeding, weeping ulcers 23cm up my large intestines. I was immediately put on a dosage of asacol – 3 pills/ 3x per day & some awful enema prescription that is only made in Israel. After about 6 weeks of nightly enemas the pills started to work and I was feeling better. Everything was ok, unless I missed a dose. Then I started to be bothered by the side effects o the asacol: tired, headaches & my eyeballs would rapidly wiggle from left to right making it difficult to read or concentrate for long periods of time. In October, 2011 I started eating Mila and between the nutrient density of this blend of chia seed, and the way it coated my intestines I noticed improvement in my energy and a decreased sugar craving. After 6 months of eating it dail y I gradually reduced my pills to 2 pills/2x/day. I was just over a year symptom free and no side effects. Then after the loss of both my grandparents withing 6 months, the flu (without taking any medication or Mila for nearly a week), and a cold over the holidays I started to relapse, just before an international trip. Needless to say that the lack of schedule & many meals eaten out further contributed to this relapse. Last month it was so bad that I was bleeding and curled up on the couch crying. I was sick & tired of this! About 6 months ago a friend mentioned that she knew a friend with a young son who had UC & that she went to an expert in SF (Dr. Cowan) who had her son on the GAPS diet. I called my friend and asked for her contact info & and after leaving a message I spent 4 hours straight researching GAPS. The next day I started the intro diet without completely knowing what I was getting into & literally within 24 hours of stage 1 I was not bleeding, no diarrhea or cramps. I was astonished and in disbelief. This rapid turn around was enough to convince me to see this through. I’m three weeks in and in stage 3. It’s not easy, it is boring at times & I was initially very tired, moody & headachy, but I felt good enough to walk the do over the weekend and work out and go to yoga today.
My question is has anyone on GAPS been drinking kombucha as it seems like it would qualify & does it matter whether you use raw or pasteurized organic milk for making yogurt?
I’d also like to know what has been the biggest challenge for folks and what helped them through it?
Medications:
Asacol – works to mask symptoms in high doses, but expensive and problematic side effects
Enema – life saver to calm symptoms within 10 days – not fun to implement
Mila – helps with energy & to coat intestines (helped me to reduce prescriptions)
Gaps diet – miracle within 24 hours. I don’t yet know if it will heal my UC, but I’m encouraged!
written by Rachel Smith
submitted in the colitis venting area
42 year old business owner, wife & mother of two young girls. She spent 13 yrs working with physicians as an association executive and currently lives is West Sacramento, California.
I love your attitude Rachel! I actually refuse to take meds for UC, as I feel the only way to manage it, is naturally. All of the medications have side effects, some even dangerous, and they all eventually stop working as well. We must HEAL our colon ourselves, by discovering a natural way to do so. It seems to be different for everyone, too, which makes it more trial and error than anything.
I have found MY ‘cure’…a GOOD probiotic, and L-glutamine. No symptoms for a full year, now, and I don’t plan on ever having a flare again, I can now say, quite confidently! I will NEVER take meds again. I’d rather get rid of my colon than take meds. They always made me feel awful.
You will get where you need to be, you will find out what works for you…it seems that you already have…you just have to do it every day…forever!
Take care, all the best to you,
Bev
:)
Hi Bev,
Can you tell me a bit more about the L-glutamine and how much you’re taking, what’s working best for you? I have a good probiotic but haven’t done the L-glutamine.
Thanks,
Chris
Hi Chris…
It’s unflavored fermented L-glutamine powder…available at all health supplement stores. I just mix some of the powder with a bit of juice, to taste. You can take anywhere from one to eight scoops per day. I took two at first, that’s all I seemed to need, and a year later, I now take only one scoop per day. It’s keeping me stable and in remission, along with a probiotic. (The scoop is included in the tub of it). You can get it in capsule form too, I have heard, but I have only tried the powder myself.
Apparently, it heals a lot of our bodies’ inner workings. Bodybuilders take it for muscle repair, and it heals the mucosa of the colon too! It really does, because two days after I started taking it, the bleeding stopped.
Cheers
Bev,
The first time I have ever heard about L glutamine , it was from you here in this blog. And I was wondering if it works that well how come non of my 12 doctors whom I consulted before even mentioned it, nevertheless , and as desperate and sick from asacol I am, I went and I bought my first L glutamine powder box. And I just want to tell you , THANK you and god bless you for introducing L Glutamine to me, it’s already one week and I am off Asacol, and I am feeling great , no flares and regular bowl movement!!
By the way L glutamine is also Cell volumizing , in English it means it will make you fat! So better to exercise regularly when taking it, and also do not mix with acidic juices as orange juice, for the best absorption just mix with room temp water.
Again really thank you and god bless you for sharing your L Glutamine secret with us.
Best regards
Riad
Hi Riad,
First, let me say how happy I am for you. I only wish everyone would at least try L-glutamine. It really is amazing stuff!!
Second…I am forever humble about my sharing the success I have had with what I am taking, with everyone on this site. It is not ‘bless me’,…I do not deserve the credit…it is more like thank goodness for the lovely clerk at the supplement store who recommended this wonderfully natural healing product to me!! I would have never known about L-glutamine, either. Just like you, my doctor told me nothing of any natural ways to manage UC. I was just so fed up with feeling absolutely awful on the asacol, that I decided to try and find some natural alternatives.
As for the cell volumizing property of L-glutamine…I have not noticed any weight gain, and I’ve been on it for over a year. I am an avid exerciser, though, which probably helps. Mind you, I needed a bit of weight gain, because I was so thin thanks to the UC and not absorbing any nutrients, including fats, for so many years. I attribute the healthy way that I look now, which may be a few pounds heavier, to the fact that the food that I am eating is not flying right through me any more! I am actually absorbing it these days. I think if there is any weight gain, it is because our bodies are doing what they are supposed to be doing….namely absorbing the nutrients and the fat of the foods we are eating.
Cheers, and again, how fantastic for you Riad!! Tell as many UCers as you can about L-glutamine!! It’s no secret that it works!! Oh…and thank you for letting me and everyone else know about your success with L-glutamine! More proof!!
Bev
:)
Hi Bev, I recently statred taking L-Glutamine in the capsule form(because of your suggestion on this site);)
Since I have been on it (and VSL#3) I have gotten off Prednisone and am on my way to getting off Lialda!! I am following SCD as well–although it is difficult! I am wondering if you have ever taken the capsule form of L-Glut? Is the powder form more potent? Also–do you alter your diet at all?
Thanks–
Natashia
Natashia!!
How fantastic for you!!! That is music to my ears. If only every single UCer could find relief in these things.
No, I have never taken the capsule form of L-glutamine. I’m not sure if either form is any more potent than the other. I do know this….if it is working for you, then don’t change a thing. That’s is my experience, anyway.
Please keep everyone posted on how you progress. It’s important that all of the successes are heard about, and told. That’s what this community is all about after all!
I could not be more pleased for you. You will feel so much better off of the meds. We all do!!
Bev
:)
:-) Way to go…a year and counting I’m so happy for you…keep it up!! :-)
You’re the best, Shelly…thank you:)
definitely stick to the GAPS diet if it is helping. i’m sure it will take a long time to heal.
as for yogurt, i’m pretty sure you have to heat the milk anyway so i doubt i makes a difference. the heating would kill the raw enzymes anyways. might as well get what you like or is cheaper.
Bev, When you first started with the L-Glutamine, were you in the midst of a flare? If so, how bad off were you? Also, when you started with 2 scoops, did you take them at the same time or separate them? Thanks for your help.
lynne
Well, Lynn, I was still bleeding when I started the L-glutamine. That’s why I took it…the clerk recommended it to stop the intestinal (colon) bleeding. However, the probiotic that I had started a month before the L-glutamine had taken care of all of my other symptoms already (cramping, urgency). Because I was still bleeding, that is considered ‘flaring’ I believe.
I always took and still do take the L-glutamine once a day…all at the same time. I’m not sure if that matters or not…I don’t see why splitting it up into two doses would hurt. I just like to get everything done and over with in the morning. Then, the rest of the day is mine…I don’t have to remember to ‘take’ anything else! If I want to go out for the afternoon and evening, I don’t have to carry pills or powder or anything with me…like the ‘old days’ when I was on UC meds…ugh…been there, done that…lol
:)
Hi Rachel and Gang – I am medication and flare free since February 14, 2013. I started taking evoo morning and night in February and L-Glutamine in am and after working out in pm in March. I used to be afraid to eat because I did not know what it would do to me once the food pushed through my system. I eat oatmeal for breakfast during the week and vegie omelets on the weekend, beans and cruch master cracker for lunch, yogurt for snack and a normal dinner meat/salad…I avoid starches like bread and potatoes…rice seems ok I even eat chocolate (Trader Joes has a great dark chocolate bar.) I’ve been in and out of flares and hospitals and medications since 1988. I am done with that now! I FEEL THE BEST I HAVE FELT IN YEARS!! CELEBRATE GOOD TIMES!! Good Luck Rachel with your diet curing your UC…there is hope, I am proof!
Yey Ann!!!
Wonderful!!!
:)
Rachel and all..
Ann and Bev, such positive stories… Another important UC lesson here appears to be remaining vigilant. The illness gets a bit forgotten once we have our “cure” so we must continue to turn the body the right way up (if we haven’t already). A personal tragedy and flu etc would set most of us back it seems but having the body optimised must help keep relapses away. Regular stress and the constant state of “fight or flight” is what I am working on now, I’ve been very calm for 3 weeks and hardly recognise this new outlook. It will be interesting to see how I deal with a big problem but I realise I’ve treated my body like a machine and this is no longer acceptable. Even if we only gain a few percent by taking action on diet and stress, aren’t these still big factors in what brought many of us here? Am I right in saying the gaps diet is helping the brain and central nervous system (CNS)? I like the sound of that after reading the CNS neglects or shuts down the digestive system when the body is in a stress situation. I don’t know how long it will take for these measures to undo some of the damage and have the desired prevention but its health and prevention 1st from now on…
Hi Graham, I also believe in having optimal health. Our systems are so fragile we are not sure when the bomb is going to go off. Eating a healthy diet, getting plenty of rest, exercise and monitoring stress levels can by like walking a tight rope. Even then there are not guarantees. I always keep my guard up but I know exactly what you mean about the illnes getting forgotten once we feel we have been “cured”. What is the gaps diet? I missed something. Are you in remission right now? Also, I sometimes think people are not sure how to use this website. We haven’t heard any responses back from Rachel…I know when I put my first post out there, where ever it is, I did not know I should be referring back to it. Rachel, are out out there?
Hi Ann,
Congrats by the way. Sounds awesome that all your hard work has paid off.
I agree, too that we get lax in our diets, but most of the time for me it is uncontrollable factors for what I’m sure is clearly a genetic case for me. I have found that over the years that my tolerances for food have changed, but since being off meds and doing SCD everything is completely different and I have to week quite a bit and can’t eat foods I used to. By the way, the SCD and gaps diet are very similar. You can look up a website that compares the 2 in a chart…remember finding that a long time ago.
Anyway, keep it up! :-)
Best, Shelly
Oh yeah, sometimes people forget to recheck or maybe they even use diff. Emails? It is frustrating, but somewhere down the line they usually realize it and check back in!
Hi Ann,
I am generally well but still frustratingly around 90%, some blood and some D. Working hard at the new regime.
I wonder if its still that time of year in the northern hemisphere, we still have temperatures around 0. Lots of bugs, viruses etc so maybe I’m still fighting something..
Love hearing how well you are..
Hi Bev and everyone,
Just got my L-Glutamine from Lucy’s Kitchen and took my first dose this morning. Bev, you say wait an hour after
taking on an empty stomach. I only waited about 20 minutes. Anyone know the minimum time you can wait until you
eat after taking L-Glutamine?
Also Vitamin D question – I have been taking 4000 mg a day and someone said that might be too much? Anyone out there with suggestions about how much D to take? It gives me great energy!
Also got probiotic from Lucy’s. Any suggestions on best time of day for that too?
Thanks guys.
…..OR, you can take the probiotic or L-glutamine at bedtime, as long as you haven’t eaten for a few hours! That would work too.
I don’t think taking 4000 units of vitamin D will hurt you, however, you may not need that much. You can get a blood teat to find out your D levels. You may be wasting it taking too much….but it won’t hurt you. I took 4000 until my levels got up, and now I take 2000 every day. I could probably just take 1000, but I never want my D level to go too low again. Inflammation and all that…
Hi Zanya,
You should have your vit d levels checked and your Dr. Should let you know. There is new evidence it is another key to helping with inflammatory diseases. I take 5000+ and after over 5 months in serious flare and consequently unable to get out in the limited northern sun…with taking the supplement my level stayed about the same!
Good luck with the regimen!
Best, Shelly
thanks Shelly! I’m in the Boston area so same lack of sun. Have a great Sunday.
Hi Zayna,
I take the probiotic when I wake up, on an empty stomach, and then don’t eat for an hour after because that’s when I normally exercise. You can always get up at 3 or 4 in the morning, take it, and go back to bed if you have to eat early in the am.
The L-glutamine I also take on an empty stomach around 10 or 11 am. I don’t think you necessarily have to wait a whole hour to eat…after 20 minutes, the L-glutamine will have reached your colon, I’m sure.
Cheers, and I hope this works as good for you as it has for me.
:)
Hi Bev,
thank you so much for answering me! I like the bedtime idea – it would be nice knowing that good things are happening while I am sleeping. I am very excited about starting this L-glutamine from what you have said about it. I will let you know how it goes – but may be hard to say because I am also on Prednisone and Lialda. If I don’t get sick when I taper I will know this is working.
Thank you!
Right on Zayna. Give it some time…we did not get sick overnight (although it sometimes feels like we did), and it can take more than a few days or even a few weeks for everything to get better. Hang in there, okay?
I think some people bail out too early, when they don’t see fast enough improvement. I’m a year in now, and I feel better now than I did even six months ago…something to really consider. I’m so happy I stuck with things as long as I did. Now, I will ALWAYS take my probiotics and L-glutamine. Forever! I never miss a day no matter what.
As for the L-glutamine…it states on mine that the dosage is anywhere from one to eight scoops per day. I played around with it at different times in my recovery. At first, I needed more than one scoop, like I took two heaping ones for awhile. Now, I’m only on one per day. You may need more than two, even up to the maximum, depending on how bad your colon is. Like, if you are bleeding a lot. Because you are still on meds though, especially prednisone, you probably aren’t bleeding too much, right? That may mean that you may only need one scoop per day.
Keep me (us) posted please!
:)
Bev, I don’t know if this is coincidence but after taking Glutamine yesterday morning per your instructions – at night I had a huge improvement in symptoms. I also have been back on Prednisone since Monday but I was super sick and losing weight before yesterday taking this supplement. Thank you for sharing your knowledge and experience with all of us. Hopefully I am on a roll here :-)
Wow, Zayna…I certainly hope the glutamine has something to do with it!
I am super sensitive when it comes to drugs and natural stuff, so things tend to work very fast for me, and the probiotics and L-glutamine did as well. I was feeling good within days. Perhaps you are the same? I sure hope so!!!
PLEASE keep us posted. That L-glutamine seems to be powerful stuff for the old body!
Bev
:)
I was recently so hopeful about trying aloe vera juice that put another uc patient into remission. Well, with this current flare, I seem to have developed a sensitivity to sulfites (or so it seems). Honestly, it pisses me off. I have never had food sensitivites before, and I do NOT want to be one of ‘those people’ who can’t eat anything. Sulfites seem to be in almost everything, including the mango flavoring in the aloe vera juice I was drinking. So, I got worse. My bathroom visits doubled & my bleeding increased. I’m now waiting for unflavored aloe juice to arrive, although it may contain a thickening agent that likely has sulfites, too. Ugh.
I’ve had the newly purchased North Coast Fermented L-Glutamine sitting on my counter but was waiting to start it. I wanted to work with the aloe first & not start too many things at once, so I can actually evaluate what helps & what does not. But, while waiting for the unflavored aloe, my flare seemed to be gaining too much control. So, I broke down & started the L-Glutamine with 2 heaping scoops on Saturday night. On Sunday morning, I seemed to gain back a little of the solidity I had lost due to the sulfites in the aloe. (North Coast specifically states on the container that it contains no sulfites! I’m lovin’ that!) My bathroom visits have not decreased, but my bleeding has. This morning I had even more solidity. Dare I become hopeful?? I’ve been taking 2 heaping scoops in the morning and at night before bed.
One thing I’ve noticed since taking the L-Glutamine is cramping. I haven’t had too much of that before & now I do. But, I wonder if I’m cramping because things are solidifying more & I’m still raw & tender in there. Make sense to anyone?
lynne
Lynne!
Yeah…the L-glutamine seems to be working for you!!! See everyone?! It is truly amazing stuff, me thinks. Keep taking it, and you should get less trips to the bathroom, I would hope. Are you also taking a good probiotic and some sort of natural anti inflammatory, like vitamin D or astaxanthin? Not sure about L-glutamine on it’s own, but the probiotic helped me with ALL of the other ‘classic’ symptoms of UC, including frequency, cramping, urgency, etc. The L-glutamine stopped my bleeding…the only symptom that the probiotic sis not seem to help with.
I did not experience any cramping with the L-glutamine…how much are you taking? It may not even be that that is causing the cramping…not trying to be a smart ass, but it isn’t near your time of the month or anything, is it? Or, perhaps you aren’t taking a probiotic?
Cheers for now…and keep us posted, please
Bev
Bev –
Yes, I’m currently taking six VSL#3 probiotics daily, which is a pretty powerful (& expensive) probiotic. My dr told me I was taking too much & said to drop down to 3/day. So, I did & got worse. :/ I also take vitamin D 2000 IU daily, iron, & a multi-vitamin. I tried the evoo for 3+ weeks & noticed no change, so I stopped. I’ve been taking two heaping scoops of the fermented L-Glut in the morning & again at night before bed. I am cautiously hopeful! :)
lynne
You seem to be doing everything right!
Are you taking the probiotics on an empty stomach as well?
Hi Lynne,
Sulfites are really bad for us uc’ers. Also, use an organic liquid aloe inner leaf and add it to my smoothie. Aloe can also cause some intestinal issues as well so use cautiously. I try and take a break from stuff to see if i notice any differences and also to mix it up a bit.
How much iron do you take? Extra plus your multi?? Iron can cause intestinal issues as well so be cautious. Don’t forget vitamins and supplements can interact and also with foods so be careful. We are like big science experiments!! :-)
Keep up the experimenting! Are you keeping track of everything? Very important! :-)
Best, Shelly
I also take a teaspoon of fish oil everyday. :)
Bev, Yes I take the probiotics on an empty stomach, but sometimes I eat shortly after. Do you think that’s okay? Also, I take all six at one time, but I wonder if I should split them up throughout the day. ?
I take mine as soon as I get up, and then I exercise, so I don’t eat for at least an hour afterwards. I’m not for sure on that it would hurt anything to eat shortly AFTER…although my method has worked for me. They digest into your colon within 20 minutes on an empty stomach, I would think, but eating too soon may mess with them a bit…I don’t know for sure.
You could always get up at 3 or 4 in the morning and swallow them with some water and go back to bed, but again, I’m not entirely sure that is necessary.
As for splitting the dosage up…then you will have to worry about an empty stomach two times per day!! What if you take them all at bedtime, providing you have not eaten for two hours prior?
Shelly & Bev,
Yes, I take an iron tablet in addition to a multivitamin w/iron. I saw my GI dr a few weeks ago. He told me to cut down on the probiotics & stop taking iron (because I wasn’t anemic). So, I did & got worse. I have indeed heard that iron can irritate the intestines, so I thought it would be a good thing when I stopped. However, I know that some people become constipated from taking iron and it tends to slow things down. Once I started getting worse, I needed to slow things down so I started taking the iron again. I don’t know if that is the right choice or not, but I get panicky when my flare seems to be getting out of control.
Also, I am taking Entocort. I got so bad after my colonoscopy, I broke down & agreed to take this expensive medication. It is a steroid that addresses only the colon (as opposed to prednisone). I honestly don’t know if it’s helping me anymore or not, but I’m afraid to stop taking it. I had d, some solids, & light bleeding before my follow-up dr’s appt, but when I took fewer probiotics & stopped taking iron (as advised), things started to deteriorate. Then, I excitedly started drinking the mango flavored aloe (knowing someone who went into complete remission from drinking it) & really got worse. Now, I’m trying to get back to where I was before the dr appt, which still wasn’t normal. I’m afraid that my flare will get out of control. My dr believes I would benefit from prednisone & then Imuran. I really, really, really don’t want to put those things into my system. Prior to this flare, I was in remission for almost 4 years w no meds at all. I could eat whatever I wanted, & my stools were worthy of framing. So, this is all very frustrating. :(
lynne
I also tried evoo for 3+ weeks with high hopes, but I noticed no change & stopped taking it. I am hopeful everyday that this will be the day that things improve. I’m tired of being disappointed & scared. As we all know, this disease (or whatever it is) gets very old.
Hi Lynne,
So here’s what helped me…after my allergy to remicade I pretty much resigned to trying natural, but started re-reading the surgery stories and had the conversations with my primary care and GI about the “S” word as I liked to call it! I have since been on humira and allergic and off meds for a year and 2 months (uc for 30+ yrs diagnosed-lifetime of symptoms!) I have had 2 major flares since being off meds and still battling out of this last one for 6 months…but know I have no meds left anyway…ironically there is some freedom in that and now trying everything naturally with that in mind and yes, still scary especially since my surgical options are limited up here. But you are in one of the best places for that!
Hope this helps….keep your fight up! Shelly
Shelly,
That’s awesome that you’ve been off meds for more than one year. I had a reaction to asacal about 7 yrs ago & have been off meds ever since until a mth & a half ago. I do think it’s the way to be, & I’m working hard to get out of this flare & get off the temporary meds I’m on now. And I’m happy to report that today has been a good day! First one in a long time. Bev will be happy to hear that the L-Glutamine really IS helping me. I can hardly believe that something is finally making a difference! Instead of my usual 6-7 bathroom visits, I’ve had only 3 today! And I’ve actually had energy this evening … I ran errands! (instead of laying on the couch afraid of standing up & activating my intestines.) Today I took 2 scoops of L-Glut first thing in the morning, 2 scoops at mid-day, & will take 2 scoops before bed. I have noticed some nausea, tho, which I didn’t have before the L-Glut. Tomorrow I might tweak the dosage a little to see if the nausea subsides. But, honestly, having a stable gut is worth a little nausea. Shelly, have you tried the North Coast Fermented L-Glut?
lynne
I feel like doing back flips (but it would probably kill this old girl) reading all of these positive results thanks to L-glutamine! There really is something to this!!
I never got the nausea…but I would take it over pain, urgency, and bleeding any day! Perhaps your body is just adjusting to the L- glut (love that shortened version:)). As you reduce the dosage later down the road, it will go away. I think that this is something that we have to keep taking….probably forever. I have never tried stopping it, because I am afraid to! It works so good, but I think we have to take it always. I’m okay with that!
Cheers everyone…luv you all…
:)
hi Lynne…sounds awesome and you know Bev is clearly happy! :-)
I have not yet tried the north coast because there is some glutamine in my spirutein and I am doing chinese herbs along with vsl 3 DS, vit d, lovaza(omega 3) so i know I have to be very careful. I also am doing SCD about 95%- the full SCD didn’t work for me. Also, I can’t seem to find anyone up here that carries the northcoast-which looks the best to me based on my research. I am just as careful as I can be about mixing and matching!
Congrats and keep us posted! Shelly
Help!!! I can’t find the L glutamine??? My flare up just started a week ago and I feel it getting worse each day I went on site where they had the fermented kind recommended by bev but says doesnt ship to my region. I live in Texas.
Hi Claudia,
Go to Lucy’s Kitchen online and call. They can get it to you right away. it helped me within a day. Good luck!!
Hi Rachel,
It has been a month since your original post. How are you feeling now? Have you seen improvement? Are you working with Dr Cowan?
All the best,
Jovana
i just saw this and am buying L-Glutamine and probiotics today. i am currently in a new flare up that bleeding just started today (i think) and cramps/mucous has been happening this week. the flare up is due to me letting Remicade get fully out of my symptoms. i just want to be med free and this is very hopeful news Bev. i will let you know how it turns out. thanks!
Nick,
Please let us ALL know how it turns out, okay? Remember as well, that it could take some time. Give things at least a month or even more. Always take the probiotic and the L-glutamine on an EMPTY stomach (I take the probiotic first thing in the am at about 6 and then don’t eat for at least half an hour, and I take the L-glutamine around 11am, an hour before lunch). Also, don’t be afraid to take more L-glutamine if necessary, to stop the bleeding. I took 3 scoops per day at first, and now that I am not bleeding any more, I take one per day.
Cheers,
Bev
:)
Bev can you tell me the brand and dosage of the L-Glutamine you use? i picked up the store brand last week and i would like to know what kind you get? i ordered the renew life probiotic already. thanks!
Hi All,
Per Bev’s regimen, my daughter has been taking L-glut, one scoop 2 g, a day ( recommended dose, from Jarrow). We’ve been seeing good results, together with probiotic, prebiotin, and Evo). Looking at the posts, it seems that people are taking higher doses, 5 g and up, I’m just wondering if we should increase it? Couldn’t find North Coast L glut locally, and when I went yo Lucy’s kitchen online, I didn’t find it there either. Where can order it online?
YES!! Most definitely, yes.
I up my dose ( one can take up to 40 g per day, apparently…not sure whether there is a difference for children) by a scoop, or even more, when things go ‘sideways’, which, by the way, is almost never, these days. Things DO get better even after a year!
Thanks, Bev!
It’s great to know that you are always here to give us encouragement and advice! By the way, do you know if it’s possible to do a word or topic search on the site?
Ana,
I order North Coast Naturals Fermented L-Glutamine (same that Bev uses) from Vitamart.ca. It does take awhile for it to get to the U.S., tho. I’m currently taking about 30-40 g per day, and I’ve read that people (adults) with uc or crohns often take 40-50 g … I’ve even read 80 g. I sure hope to lessen my dosage at some point, but I still have some bleeding (which is gradully decreasing, overall). Also, btw, when I don’t have the North Coast l-glut, I use the NOW brand. Honestly, I don’t notice any difference (good or bad) between the two. Not yet anyway.
lynne
Lynne, Thank you. We´ll try that. My daughter has been using the Jarrow formula but only the recommended dose, which is 2 g. So, we´ll increase that. We saw noticeable improvement in her stool after switching to Bev’s probiotic (while still leaving some VSL), adding olive oil on an empty stomach, and adding prebiotin that Lane is using (our daughter’s stools became more formed). So, good luck!
I don’t know if you can do a word search on this site…Adam? Can we?
A word search would be great here Bev, I presume you dont mean the ones you take on holiday though?
Lol…no…a topic search, I think I meant to say
:)
you can search in the search bar at the top…even on Google a lot of our stuff comes up when you search…that’s why you famously pop up!! :-)
Thanks Shelly!
:)
Bev can you tell me the brand and dosage of the L-Glutamine you use? i picked up the store brand last week and i would like to know what kind you get? i ordered the renew life probiotic already. thanks!
Hey Nick,
I use the fermented NORTH COAST NATURALS powdered L-glutamine. At the moment, I am taking one scoopful (5g), but when I was still bleeding a year ago, I took 3 scoops (15g). You can take up to 40 grams per day, or 8 scoops, apparently.
Nice I had that brand open on a tab and was debating if i should order it! thank you
Hey Bev,
With the astaxanthin, what fat-type meal do you typically eat with it? Do you think an egg with gluten-free toast would be enough fat to accomodate this supplement? This feels like a dumb question, but my food options are still pretty limited right now, unfortunately.
lynne
Any lunch that I eat…a bagel with whatever on it, tacos…
An egg has a certain amount of fat in it. If you’d rather take the vitamin D and astaxanthin at supper, when you may eat more ‘fat’, then you could always do that. They are just BETTER absorbed with fat. It’s not imperitave, I don’t think :)
There are no dumb questions!
:)
I also take the VSL#3DS (double strength). The directions on the box state that during a flare you can take up to 4 sachets daily (each sachet contains 900 billion bacteria). If you are still flaring I don’t know why the doctor would tell you to back off from a full dosage if it was giving you some relief.
Hi all,
Just wondering … has anyone researched and/or tried drinking raw cow’s milk? I know that dairy is considered such a big no-no for uc-ers, so I can almost hear the gasping. However, when I was first diagnosed 8 years ago, I learned about how valuable raw milk is and I drank it regularly. It was hard to come by, so I stopped. But, I have a source now (can only buy raw milk legally right off the farm in Minnesota), so I’ve been researching it again. Man, it IS a valuable food for the gut. It is loaded with digestive enzymes and good bacteria like nothing else … a living, healing food. Unfortunately, once pasteurized, all of its value is lost, and it becomes a dead food that is very hard on the body. Many people who are lactose intolerant do just fine with raw milk as it is so so much easier to digest.
I’ve also been studying up on ‘leaky gut’, which is when the intestines become permeable and undigested food & toxins seep through and enter the system through the bloodstream. Our immunities then attempt to fight off these toxins. Inflammation occurs, food allergies development, and many other things. I feel like I fall into this category, because I have other strange & sudden symptoms (like food sensitivities I didn’t have before, & weird sensations as my body digests) that all seem to tie together. Leaky gut can sometimes be the culprit behind uc and many other ailments. And the good news is that leaky gut can be corrected! Many have found relief and healing by drinking unpasteurized raw milk. It’s not nearly as scary as it sounds.
If anyone is interested, here is a very informative website on raw milk:
http://www.realmilk.com/
lynne
Hi lynee and Graham,
Dede may have some info on the cow’s milk thing.
Also, the leaky gut is basically the premise behind the whole SCD and gaps/paleo diet
So great info being shared. Almost time to give a new entry/story Graham, as some of this info we are “threading” will be lost to new views or those not linked to these threads!
Best, Shelly
Sorry typo Lynne
And that’s Dede Cummings who posts occasionally. She also wrote that book-Living with Crohn’s and Colitis and blogs as well.
Hi Lynne,,
Sounds interesting, isn’t that typical of our food though, by the time they have finished playing with it it has little little or no nutritional value?
The leaky gut thing sure makes sense, if I understand correctly the inflamed area of the gut has damaged mucosa so unwanted/un-digested bacteria enter through the gut wall triggering an immune response? No wonder we have problems, dealing with what started the inflammation in the beginning and then a comprimised immune system. Is this milk lining the stomach with a barrier, like cigarettes that produce mucas and EVOO possibly? I did read that milk restricts the absorption of vitamins and minerals but if real milk has these properties then great. Makes me wonder though, given a choice do we absorb our nutrients and everything else through our leaky guts or install a barrier to limit the bad getting through, possibly under nourishing ourselves? What we need could be a combination of a barrier and good clean organic type nutritional foods.
“Barrier” creating foods that are nutritional… We could be on to something here, I always found lactose free milk much better at protecting from flare beginnings. Was this because (as I imagined) just limiting the sugar reaction or as I now suspect a more efficient barrier. I know that sounds like the same thing but this is extremely intriguing to me at least.. Don’t some of the foods we swear by have “barrier” properties, yoghurt, oily fish, eggs?
Go Shelly!
You understand more than I, wouldn’t you like to expand on this while we go learn some more? I will obviously contribute..
:-) Graham!
I could never explain it it but the guys at SCD lifestyle can… http://scdlifestyle.com/2010/03/the-scd-diet-and-leaky-gut-syndrome/
They are awesome and have been around a long time…referenced by Adam and Dede.
The SCD Breaking the Vicious Cycle book by Elaine Gottschall has to be read to understand how the science works.
And there are some fantastic sites now to help: http://pecanbread.com/p/how/stages.html,
http://comfybelly.com/ and the SCD sites, of course.
I cannot fully preach SCD as i am not 100%, but was more like 98-99% and now about 95%…it did not fully work for me and I had to add a few things back in so as not to starve and be so grumpy! I am planning on hopefully posting another story soon, but once again am a bit too nervous to jinx it! :-)
Be well all, Shelly
Hi Shelly,
Thank you for those links and it sure makes sense, I also promise to read Elaine’s book some time soon. I am well at present so reluctant to follow a strict diet, though I have made many sensible UC friendly changes.
Good luck getting your 5%!
Thanks!
Even if you don’t do SCD the science and the history is intriguing.
I actually read the book long before the leap! For years I could eat a decent diet, but not in recent years and the more careful and the more things I omit, the more foods I can’t tolerate.
Never a dull moment with UC! Thanks for the extra luck..I’ll take it! :-)
Have you read Jini Patel’s, Listen to Your Gut? It was recommended by a friend but I wound her website very commercial.
hey Graham…comment awaiting moderation since I included websites.
So much info so little time. If only UC was a one size fits all?! And too bad there are so many outside factors we can’t control.
:-) Shelly
I have read with interest about this breakthrough L- glutamine, and I am off to the health food shop tomorrow, Monday. I was diagnosed in 2009 and the first 2 years were hell. I thought I was leaving this terrible disease behind me as I have been off all meds and feeling well for the last 15 months. I have now flared up again, and I am back on meds. I think the message here is never to think you are cured and never take yourself off all the treatment you have been using , whether it be meds or natural aids. When I was first diagnosed I asked my specialist. “How are we going to fix this” He said “There is no cure.” I am now beginning to think he was right, it is how we approach it ourselves, and what works for one may not work for the other, and if we find something that works for us, go for it. I hope Rachel can stay off the meds, but sometimes you need a kick start, and I have now started back on 3 azathoraprine daily, supershield probiotic and the pentassa enema nightly and that’s when I can keep it in without rushing to the loo. I hate taking pills, and will be off or reduce them as soon as I can, but, and that is a big but, I will still need to do something, whether it be diet control, probiotics or whatever, it is obvious we cant just let it go because unfortunately it will not disappear.
Shirley NZ
Hi Shirley,
So, so sorry you are having a flare-up. I wholeheartedly agree with you that UC people need to be so vigilant about their diet, their supplements, and even their medicine regimen. I’m getting more and more convinced that it’s about having the correct flora in the intestine that maintains UC under control or in remission. My daughter was on 4 (800 mg) of asacol and mesalamine enema (which we were planning to discontinue) and doing great when she had a flare-up 2 1/2 months ago, which happened out of the blue, although we think we can connect it to the diet. Again, there are so many different cases we’ve read about, I can only speak for her case. ( She’s doing better now, with no blood, still loose stools, about 4 times a day.) Increasing asacol by 2 pills didn’t do it, so we introduced l-glutamin, together with another probiotic that dissolves (according to the description) in the large intestine, astaxanthin, prebiotin, vit. D, and three tablespoons of extravirgin olive oil on an empty stomach. Her diet is pretty restrictive now, no dairy, no gluten, limited grains (oatmeal and buckwheat so far), fish, eggs, blended vegetable soups twice a day, green juicing, certain fruits, no legumes yet. We reduced asacol by one pill, so far with no adverse effects. We’re also considering an FM transplant in hopes to change her intestinal flora in a more permanent way. She’s back to school, piano, and even to her ballet (not fully yet), although still feeling rather tired. So all said, it’s a long road but we’re feeling more hopeful now. So good luck to you!
I feel so sad when I hear of young people having this horrible disease. I have been to the shop and bought my L-glutamin today, I also purchased a good juicer so will get on to some vege juice too. We are all so different aren’t we, but I think anything within reason is worth a go. I will certainally be doing the maintanencce work this time whenever I get out of this flare.
For sure Shirley NZ!
Please let us know how you progress. Remember…even over a year later, in remission, I am still seeing firmer BMs….give it time….we ARE all so different. That’s why it’s so difficult to find what works. Sometimes, something may work, but people don’t give it enough time to work, and they never know if it could have worked….did that make sense??
Bev
:)
Can’t agree with you more. Good luck and perseverance to all of us!
My understanding is that different types of foods create a different micro flora in the intestine, so it might be that by eliminating grains or legumes, or dairy, you are also eliminating the bacteria that you need to break them down. For my daughter, doing a lactose tolerance test (having not had milk for 8 months) brought a severe flare-up (it showed that she was lactose intolerant). Her next flare-up after 8 months in remission was after having chicken soup (again, she hadn’t had chicken for over a year). Is it a coincidence? So, now after being on a restricted diet, we’re slowly reintroducing certain grains, expanding her vegetables and fruits, sticking to fish and eggs, no dairy. So far, together with the supplements suggested by Bev, Lane, and Graham’s olive oil, she’s doing much better, and hopefully will keep improving.
In my early UC days, and when I found this wonderful site thanks to Adam, I started on the SCD but after 3 months and I was still getting worse I tried my own experiments. I have never stopped dairy, I try and go for the natural foods, try to avoid artificial colourings, flavourings, preservatives, certain cooking oils, and sugar. I am really enjoying my vege juices I hope they are helping. No new signs yet.
I have a the same food approach Shirley, also now organic if possible.
I buy that theory Ana, we all seem to be losing or reducing our flora in ways we still don’t fully understand. We don’t know what the food “extras” and everyday chemicals are doing to bodies. I am sure there are several reasons for allergies but that must be one of them. If we have lost or accidentally removed our abilty to break these down certain foods then “introduce” does seem to be the key word. Isn’t this how we feed babies who have not developed their gut or gut flora fully yet. Sorry if I’m stating the bleeding obvious here..
Just off to read the NY times (some of my best friends are germs) article again..
Agree. I also came across NAG – (N-Acetyl Glucosamine), which is “a nutritional supplement which has been found to have both anti inflammatory effect in the bowel as well as in joints. There are only successful case reports and no blinded trial reports as yet. The major advantage of NAG is that it is so free of adverse effects.”. Has anybody used it or looked into it?
Ana,
are you sure about the less side effects or is that a claim by the company or limited study? Be caurious with our guts…glucosamine is known to cause upset in the stomach/gut…even my dog couldn’t take it…he has sensitive gut, well, both my dogs.
:-) Shelly
That was cautious, but I think I like that word..looks like cautious and curious together! :-)
We used to go to the baker for a loaf of bread, and it would be almost stale the next day. The same with milk, now they last a week, that tells us something.
Not just additives, how about weed killer marching though out guts every day?
http://grist.org/food/gut-punch-monsanto-could-be-destroying-your-microbiome/#.UaVH5CzXrnA.twitter
ugh Graham,
that’s what I’m saying about a lot of factors beyond our control…especially our food supply! Sure makes our battle that much harder…even the discrepancies with your evoo!
:-) Shelly
Hey Everyone! I just discovered this site last night, and I am super stoked to try some of y’all’s suggestions during my next flare up!!! I have had UC for 8 years, and I am STILL learning new things (or more accurately, I am finally open to the idea of a more holistic treatment approach). I just nipped a pretty bad flare-up in the bud last week. It was brought on by antibiotics, and started out just as diarrhea and progressed to bloody diarrhea, cramping, sprints to the bathroom, all that fun stuff that makes the pain of starvation look preferable, THEN. Then my juicer arrived in the mail :) I just so happened to order it right before the diarrhea started. For over a year I had been contemplating juice fasting during flare ups instead of my usual last resort of Ensure fasting. And it worked! it was FANTASTIC! The first day of juicing I stopped cramping. I had no painful gut gurgles. I had a strange energy, that kept me feeling very positive throughout the whole flare. I even went to work! I still ate a few things during the day between juices, but after 5 days I stopped having diarrhea. It has not even been 2 whole weeks since i started juicing, and I have stopped bleeding completely. Also, my hemorrhoids have calmed down considerably. Once I get to the “i can’t leave the house” stage of a flare up, that usually means I am not leaving the house for at least another month, but this time was different!!!! I am back to eating regularly, but still juicing at least twice a day (Lots of cabbage! apparently it’s very good for ulcers)
Disclaimer: I also had a Remicade treatment the day i started juicing, but ever since I started Remicade 9 months ago I have had problems with rectal bleeding on and off. Also, I am still experiencing antibody responses during treatment :/
Everyone’s comments and suggestions are very encouraging! So thank you to everyone sharing your ideas and personal stories. This is a great website
Welcome to the site Debbie!
You will love it! So many great people on here and you will laugh and learn a lot too. It’s the best support I’ve ever found regarding UC.
Cheers,
Bev
:)
Hi Debbie,
Glad you’re here and VERY glad to hear about your success with juicing! I also want to try it but must wait until I have extra money to buy a juicer. (So much of my money goes toward probiotics, aloe, supplements, etc.) Can you please tell me what other things you juice? Do you have recipes? How much cabbage? Thanks so much for sharing this with us! =)
lynne
I am pleased to say I am good again, crossed fingers, I think I went into my recent flare with a more relaxed attitude and didn’t panic as previous. I just thought I am not going to die, I will get over this. Positive thinking worked. I juiced for about 3-4 weeks but didn’t do cabbage I think it is too strong, I juiced boc-choy (Chinese cabbage) as my green vege., it is more gentle on the gut. I am only taking 1 azathoraprine a day, and a teaspoon of Amino glutamine. I will swear by the glutamine , I think it is doing more for me than the med.
Sorry I didn’t mention the veges that I juiced. Basic were carrots, apple (sweetens the juice) cauliflower, brocolii. These were the winter veges that were around in the winter, but I would say tomatoes and other summer veges, just what is around in the season, but not cabbage. Good luck and good health.