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Remission only when eating carb-free - anyone else experience this?

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Ulcerative Colitis
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Posted 6/30/2009 3:59 PM (GMT 0)
I was diagnosed with severe UC 5 years ago, and told I'd have to have my colon out (20X bloody visits per day was a normal day, even on prednisone). I was only 28, so I decided to start fooling with diet, although my GI claimed it would do nothing.

I found that I'd go into complete remission, within 5 days, by eating almost 0 carbs (no fruit, grains, starches, etc ... basically following the strict phase of Atkins). I had already been gluten-free, and found that Fructose was worse than other carbs, but even complex carbs and straight glucose (dextrose) would send me to the bathroom in pain within 24 hours.

Has anyone else experienced this? To me this seems to indicate some type of pathogenic origin - basically my symptoms go away whenever I'm "starving out" the bacteria/whatever causing my UC. The doctor is no help ... he just keeps handing me various pills, all of which do nothing compared to my carb-free diet. The diet is getting REALLY boring, so I'm trying to find alternative therapies ... considering Human Probiotic Infusion (fecal transplant) at the moment ...

Thanks!
Posted 6/30/2009 4:17 PM (GMT 0)
Hey there LuckyLindy-- well, I follow a low-carb version of the Specific Carb Diet because high carb and refined carb foods- as well as processed foods- seem to consistently flare me. I recall from years back, on some SCD-related forums, that a few people did find an ultra-low, zero or almost zero carb regimen for a few days got them out of flares. For me, an Atkins-induction-like level of carbs keeps me out of trouble but if I go ultra ultra low, as in below 10 grams a day say, then I am eating such a fiberless diet that I don't have the building blocks to form proper formed stool. But I do need to keep my carb level much lower than that of the classic SCD, avoiding altogether that diet's many high carb treats like honey and nut flour based goods and plenty of fruit. I certainly wouldn't suggest that most people try ultra low-carbing- for most people it is the ultra-high carb level of the standard American diet that is the problem- but if it works for your flares, roll with it.

I recently tried HPI. I think it is well worth trying since you can do it at home if you find a suitable donor who lives with you ideally. I seemed to flare up with it but perhaps it is just that my donor's stool is not the right grade. I am back to trying helminths (parasitic worms) though since I had partial success with them before.
Posted 6/30/2009 4:27 PM (GMT 0)
I'm basically on low-carb SCD as well. What seems strange to me is that I don't have what people describe as classic flares ... it's more like a light switch controlled by diet. If I eat carbs I know I have 24 hours until I'm in the bathroom most of a day, but the moment I stop I know it's 3 days until I'm back to normal (1-2X per day, no blood, no mucous, etc). I usually only "cheat" once per month, but in cases where I've eaten carbs for more than 1 or 2 meals my symptoms get progressively worse the longer I cheat (and take longer to subside).
Posted 6/30/2009 4:36 PM (GMT 0)
LL...have you not been checked for microscopic colitis? If not, I'd suggest you do since you're having success with low carb intake.

As well...Pepto is helpful with MC..which I've noticed you suggested and I'm assuming you use.

I would suspect you have more going on than just UC.

quincy
Posted 6/30/2009 4:47 PM (GMT 0)
Thanks quincy. Yeah, they've checked for microscopic colitis and a host of other things. Always comes back negative. I've only taken Pepto after "cheating" (which is rare) to alleviate the symptoms to some degree. I've tried to convince various GI docs to give me Metronidazole or other antibiotics "just in case", but they always refuse. I can get veterinary antibiotics over the counter in my state, and have considered a home treatment for MC to see if it works.
Posted 6/30/2009 5:48 PM (GMT 0)
Yes I have experienced this. I am on a raw food diet at the moment. i feel amazing today. No blood no mucus regular stools. So far. I don't want to jinks it. i am waiting to see how well I do after a month. My bloods came back normal last week. So lets see how well i do. I eat alot of fruit and I eat bananas as my main carbs. You do need a carb as if you don't have any for a prolonged period your body can go into Ketosis
Posted 6/30/2009 5:50 PM (GMT 0)
Yes, we can't process complex carbohydrates for some reason or another. (At least this group of posters)
Posted 6/30/2009 6:00 PM (GMT 0)
make sure you are eating a simple carbohydate.
Posted 6/30/2009 6:21 PM (GMT 0)

Similar experience here, although not as dramatic as you describe. A low-carb, grain free diet works for me. When I'm in remission and feeling well, I can "cheat" without any problems. I have to be careful that the occasional cheat doesn't become the frequent cheat. That's when I get into trouble.

In addition to probiotic supplementation - which will rebuild good gut flora and improve digestion - you can also try digestive enzymes which will help you get the most out of your food and leave less for the bad gut flora to feed on. But most of all, I'd suggest you look into an antimicrobial/antiviral/antifungal like wild oregano oil to roust out the bad stuff. From what I've learned, diagnosis of various gut invaders can be difficult. You might also look into a comprehensive digestive stool analysis test from the Great Smokies lab (Genova), but whether you find and name the organisms or not, a supplement like WOO can help you get rid of them.

Posted 6/30/2009 7:45 PM (GMT 0)
To Hellokitty: for whatever reason, I cannot even tolerate simple carbs. Nutritional analysis shows that I get 10-20g or so of carbs per day from veggies (peppers, lettuce, cucumber, etc). I definitely drop into ketosis here and there, but that seems far better than being in the bathroom all day.

Princesa: I had some luck with digestive enzymes in the past, but my local stores stopped carrying them (I've been too lazy to order more online). Do you have any recommendations?

I've been able to take up running ~6X per week since I've changed my diet, which is the only time I miss carbs (running more than 5 or 6 miles ends in a wipe out on a very low carb diet).
Posted 6/30/2009 9:06 PM (GMT 0)
ok. Im not entirly sure ketosis is a bad thing, the subject is debatable, The recomended allowence 230 g per day. maybe ask blueclass ring what he is eating. I know scd allows bananas. I have heard that the atkins diet was not to be done for a prolonged period. I would get my bloods done every month if I was you. I have been doing that on this new raw diet. Just because Im not sure how it is going to effect me.
Posted 6/30/2009 9:13 PM (GMT 0)
I did have another idea just incase you want to check this out. Paul Nison is a guy that healed himself through the raw food diet. i don't think the takes as many bananas as I do. He has been living like this for years. You can contact him if you want on www.rawfoodsupport.com or try emailing him from his web site. www.paulnison.com. He may be able to give ideas on how to live safley with out as many fruits.
Posted 7/1/2009 1:12 AM (GMT 0)
just curious lucky, what foods are you eating exactly....to put you into remission.,
Posted 7/1/2009 5:36 AM (GMT 0)
Hellokitty - I tried raw foods diet for a few months, and while I had lots of energy I was in the bathroom ALL the time. I cannot tolerate any fruits, beans, starches, etc., which means that I can't possibly get enough calories on the raw foods diet without downing a few cups of oil per day (I even have problems with nuts - again, too many carbs).

LucasJ - I eat lots of chicken, turkey, fish, eggs, some red meat, liberal use of olive oil, and low carb veggies (broccoli, spinach, lettuce, some green beans/peppers). Not a great variety, but it works. When I've eaten like this for a while my colonoscopies have shown no sign of UC. When I was on carbs, the damage was severe enough that they wanted to remove my colon. But even though I have a clean colonoscopy while on the diet, I'm back to have D 10-20X/day within 24 hours, minor bleeding within 3 days, and severe bleeding within 7 days of going off the diet. I've gone a full 7 days completely off the diet 3 times since I started it 5 years ago, and all 3 times I became anemic enough that they wanted to give me blood/iron transfusions. Instead, I started back on my diet and the bleeding quickly subsided, and a few months of 6 FE pills/day nixed my anemia.
Posted 7/1/2009 7:48 AM (GMT 0)
Interesting about the low-carbs.  This might explain why I never experienced true flares in years past.  I followed some sort of low carb diet since the Dr. Atkins diet first came out (yes, I'm old...LOL).  It was to manage my weight. 
Posted 7/1/2009 12:46 PM (GMT 0)
Simple carbs like the sugar from most fruits gets absorbed before it gets to the colon so it shouldn't be a problem. That's why it's allowed in the SCD. Like others I am aggravated by most grains and starches.

I seem to have found an exception to the rule, however, at least for me. OATMEAL doesn't bother me at all. I can eat it every day. I can't explain why--maybe the pathogens don't like it or maybe it is a natural anti-inflam. Whatever the reason, it doesn't bother me and that's a huge relief when there are NO other c. carbs in my diet. I get the organic kind, btw. I have no idea if it'll work for you.
Posted 7/1/2009 2:16 PM (GMT 0)

LuckyLindy said...
Princesa: I had some luck with digestive enzymes in the past, but my local stores stopped carrying them (I've been too lazy to order more online). Do you have any recommendations?

I've had good results with TwinLab Super Enzyme Caps and Source Naturals Essential Enzymes.

Posted 3/9/2017 11:17 PM (GMT 0)
Lucky, I have the exact same problem. Have you done anything differently to feel better? Come to a conclusion?

I see that you haven't been around for a while.

I basically eat meat with a little salt, and low carb/starch veggies. My diet is usually beef/chicken/fish with cabbage/brussels/broccoli. I would love to at least be able to eat some fruit or different vegetables to get some variety. Let's say I were to eat an apple. I would start to get smelly/burning gas within the hour. Then, the next day would be filled with bathroom trips followed by a couple days of blood, and then a week of urgency at least. I am currently on Humira which has seemed to help with my urgency on a normal basis, but I still cannot change my diet AT ALL. This, like you said, has led me to believe that there is some type of underlying cause that I am not aware of. But I have had multiple tests and colonoscopies. I could stay on my diet for months like I am now and have a piece of fruit tomorrow, and I would have blood right away. No matter how long I heal, all it takes is one serving of carbs/sugar to bring me right back.

A list of random stuff I cannot touch:
- starchy veggies (sweet potato)
- fruits
- nuts
- gluten
- legumes
- dairy
- nightshades

Please respond if you see this and you've somehow found a way to expand your diet or have come to the cause of your disease.
Posted 3/9/2017 11:34 PM (GMT 0)
I've had success with SCD as well but don't formally do low carb, although it's pretty low carb. The only carbs I eat on the diet are green veggies (green beans etc) butternut squash and bananas, which I can tolerate during a flare. Bananas are the only fruit during a flare up. Have you guys been able to tolerate these carbs?

What is HPI and is it different from Fecal Transplantation?
Posted 3/10/2017 6:06 PM (GMT 0)
I have also maintained long remission in the past with a paleo diet. I'm now starting to dabble in the SCD diet hoping to avoid strong meds. I have managed symptoms with diet in the past, yes.
Posted 3/10/2017 11:41 PM (GMT 0)
Everything lives forever on the internet, as in: this thread was started 8 years ago.
But since people still need answers for their symptoms why not resurrect it.

Potatoes (starch? or carb? who knows) really make my gut happy.
Grains (guessing carbs) make my gut unhappy mostly except for a few exceptions: Udi's white bread=thumbs up and rice noodles the same. Cooked rice = unhappy gut. Why? I have no idea but the gut rules and I obey.

Bananas=no, probably due to the fiber therein which gut hates.

Few years ago I tried very hard to figure out a connection or classification of disliked foods. Were they carbs, grains, fiberous? So far only fiber can be strongly identified, rice is OK in some forms and not OK in other forms.

I just met someone who looked like she was from my same gene pool (fair skin, sandy hair) and she said she liked Asian food because of food intolerances. Me too! We're going to lunch in a couple weeks at Vietnamese restaurant. Why do Northern European genes like Asian food? So weird.

Post Edited (imagardener2) : 3/10/2017 5:02:25 PM (GMT-7)

Posted 3/11/2017 1:23 AM (GMT 0)
OP, this is pretty much what happens to me. Except that I am okay with fructose and glucose foods. It is the the foods that actually cause my UC symptoms. When I take away starch, sucrose, etc, my symptoms disappear. If I cheat, symptoms return. Don't know how to get rid of this.
Posted 3/11/2017 1:25 AM (GMT 0)

LuckyLindy said...
I'm basically on low-carb SCD as well. What seems strange to me is that I don't have what people describe as classic flares ... it's more like a light switch controlled by diet.

Yup basically this, exactly for me. Except, my time is often a bit more than 24 hours.
Posted 3/22/2017 2:41 AM (GMT 0)

brucen36 said...

LuckyLindy said...
I'm basically on low-carb SCD as well. What seems strange to me is that I don't have what people describe as classic flares ... it's more like a light switch controlled by diet.

Yup basically this, exactly for me. Except, my time is often a bit more than 24 hours.

Yea this is so spot on. Its what drives me crazy thinking that there is some other underlying problem rather than classic UC. Its like I eat a piece of fruit or carbs and the next day, boom... blood.
Posted 3/23/2017 4:27 AM (GMT 0)
Lucky, and others....


excellent post, i was debating this tonight too, my ONLY carbs ever literally are jasmine rice and karbolyn (its a plain unflavored carb powder with no sugar- its made from potatoes and sometimes corn) i was told to remove carbs and i should get better soon, the thing is, i didnt think white and or jasmine rice was inflammatory at all? and i figured it would help with bulk as it has been a staple like forever, thoughts guys?
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