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Old 04-15-2010, 09:45 PM   #31
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Just here to say sorry!
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Old 04-16-2010, 05:03 AM   #32
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Hi Daisyhair. I'm sorry about your IBD Dx.
I borrowed from the library"The Yeast Connection Handbook". It has a little mention about IBD improving with patients on Nystatin. I am reading all I can about "Candida albicans". It is the cause of so many "symptoms" and diseases.
Do you think your carb up the other week had anything to do with your flare-up?
Good luck!
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Old 04-16-2010, 05:31 AM   #33
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Hi Ya Sweets!

I am so sorry you are suffering. Fawn will give you the best advice, but I just want to add my 2 cents. DH has Crohns and has had 2 collectomies...he doesn't have enough colon left to sufficiently absorb all the nutrients he needs to be healthy.

He began LCing after I made him watch "FatHead" last summer. He has NEVER FELT BETTER in his whole life! Dropping the fiber and limiting veggies has been a large part as well as the obvious dropping of flour and sugar.

Love you, hope you get some relief.

Peace
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Old 04-16-2010, 06:31 AM   #34
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Quote:
Originally Posted by fawn View Post
There's some information out there actually that speaks about the correlation between gut damage and soy protein. Just an FYI for all.

I have 2 clients with IBS right now and it's not as easy for them as just low carb. One was a vegetarian which makes me suspicious.
Good Morning,

Fawn,
I wanted to tell you we were veggie for several years when I was a child and into my early teens.

Thank you everyone for your posts. I thank you so very much and appreciate all the info and just people coming into give me support. It's very emotional to me. You have all helped me more than you can know.

I am feeling a tiny bit better today. It really even hurts to sit up for too long. I think it just sort of crams all my "insides" together. I do notice a marked improvement from yesterday though.

I had nothing but meat yesterday with CO and lots of my Carlson's fish oil. I am working on reading lots as I can and checking out everyone's suggestions. It's alot to take in and I want to read about it all.

The exhaustion is what kills me. I don't ever remember feeling this tired and another strange thing is my entire body aches. I have read some connection between IBD and a particular type of whole body inflammation that causes fibro like pain.

DH is staying home today! I am so fortunate to have him. He grilled me some chicken last night.. I ate actually a tiny bit. I keep reading that it's important to eat small amounts right now.
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Old 04-16-2010, 07:02 AM   #35
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Hi there! I'm mostly a lurker, but I read your posts and feel as if I know you.
I just wanted to let you know that I feel your pain....I was Dxed with Crohn's(upper colon) and Ulcertive colitis(lower colon) ie...IBD. around 7 years ago. I've been in remission for 3 years... the exhaustion and pain are normal unfortunately. Take the meds. Inflammation is causing the pain and you need to get rid of the swelling. When I was flaring, eggs were my best friend. Omega 3's, probotics . No frest veggies or fruit (especially lettuces....they are very hard to digest especially when you're flaring. Talk to your sis..she knows...I'm on remicade IV, too. I haven't lost any of my colon and just had my yearly colonosopy and even the scaring is improving. Unfortunately, when I was flaring I lost way too much weight and when I finally was able to eat again...I ate and ate and ate and gained and gained and gained. My gastro actually recommended LC and I find that it is agreeing very well for me, and I'm starting to lose the weight that I had been packing on the last few years. Rest you body!(like you even have a choice right now...huh?) Take care and I hope that you find relief soon!
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Old 04-16-2010, 08:13 AM   #36
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Hi Sherri!

Thank you for your post! I really know that low carb has to help. Along with other care I will take. I have been reading this morning and wow.. so much info on how to handle inflammation. There is so much I will be doing. Many friends are mad at me for not going on drugs. My sister thinks I am crazy. I just want to give it my best shot myself before taking the meds.

Have you ever had the body aches along with it too? I just want to sleep for days.

Stacy (my sis with Crohn's) lost down to scary skinny before her first serg. and like you when she healed ate and cooked huge meals and has really gained as well. Part of me loves to see her with some weight on her. I was so afraid for her when she lost so much.

Do you have nausea too? I feel like I am on the edge of nausea all the time the last few days. I can't tell if it's ketosis or something to do with the IBD.. I have read nausea is part of it sometimes in a flare.


Jaimie..
Ya.. I knew about DH and was actually going to write you soon.. So he is in the same boat as Stacy (she has had two surg. as well).. I can't get Stacy on LC.. I have talked to her about it recently.. maybe now if/when this all helps me she might listen... She is in RN school so she is very into meds and what she considers "normal" healing. I certainly can't force her.

Threas.
Ya.. I have actually done a candida diet on and off for a couple of years. I am pretty sure it's part of it. There is actually lots going on.

I was just reading about leaky gut syndrome. It sounds plausible to me.

Thank you so much everyone!
I love you guys. I really, really do.

Cary~
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Old 04-16-2010, 08:37 AM   #37
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Quote:
Originally Posted by fawn View Post
There's some information out there actually that speaks about the correlation between gut damage and soy protein. Just an FYI for all.

I have 2 clients with IBS right now and it's not as easy for them as just low carb. One was a vegetarian which makes me suspicious.
Soy is evil. I have been half ass trying to avoid it.. going to be more careful from now on..

Quote:
Originally Posted by rightnow View Post
My boyfriend had this same issue. His sister is celiac. He allegedly is not. But when he cut out all gluten (note this is in any grain-based product or ingredient and tends to be in everything, even sauces, spice mixes, stuff you can't imagine) he got a helluva lot better.

Once in a great while now he gets a tiny twinge. Sometimes following eating at some food place where far as he knows, there's no gluten, but it repeatedly kicks it off. But generally it is controlled.

IBS is one of those stupid labels they make up that do nothing but describe a symptom -- not the actual problem -- and that are mostly just a replacement for, "We have no freaking idea why this person is in pain / exhausted / whatever, but we have a label!"

Enterolab.com does stool testing on a wide variety of food intolerances and it's not cheap but I can't recommend it enough. If you're to the point of actual medical diagnoses and pain, it would definitely be worthwhile for you to get a spectrum of that. Their testing is do-able from your home and a much more advanced approach (or rather, more 'modern' than doctors stuck in the old world).

PJ


I just wanted to tell you thanks.
I am checking out the lab... I have a few things I want to look into myself.
Now that I finally have a Dx. (not IBS.. IBD) or maybe a combo of both but they are apparently different, I have a better idea of how to deal.

I appreciate your info. Sounds like your brother is doing better, I am glad to hear that.
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Old 04-16-2010, 08:45 AM   #38
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Quote:
Originally Posted by Minnas View Post
I'm so sorry you have been suffering so much!

I have IBS which is not nearly as bad as IBD as I understand it and I've had some really bad episodes so i can only imagine what you are going through.

When I was diagnosed I went through the same head-spinning trauma trying to figure out what to eat. It seemed everything I was supposed to eat made me sick and the stuff that was supposed to be bad was good. It was so frustrating! I would just suggest you keep a food and symptom log religiously (don't rely on your mind to remember) and over time you will start to see trends. I really think its just trial and error. Go with what makes the most sense to you as a place to start and then see what happens.

I hope you feel better very soon.
I agree, I think it's going to be hard to find what I can actually eat! So far I have just had bits of meat for the last day and although I am still feeling really bad, it's not getting worse. I wish I could just fast for 2-3 days.
Trial and error will be how it is for me too. Nice to hear from you Minnas. thanks.

Quote:
Originally Posted by teri f View Post
In the most excellent book, Life Without Bread, IBD is discussed in great detail. It is also covered well in Primal Body Primal Mind. Both sources state that fiber is the worst thing to eat for this condition. In fact, both state that eliminating all sources of grains is necessary. My daughter has problems with this as well and her symptoms cleared up completely with low carb. Hope you are feeling better soon!
Thank you for the book recommendations.. I am actually going to be ordering several books.. I will check them out. I appreciate you.

Quote:
Originally Posted by fawn View Post
All of the below should be quite helpful Cary. I'm so sorry you're suffering.

Beneficial acids and enzymes from kombucha, kimchee
Healing effects of coconut
Foods high in Lecithin like eggs
Bone Broth from NT-add kombu for additional minerals
slippery elm bark to sooth the mucosal membranes
Dr. O'hira's probiotics
Zyflamend from New Chapter the superior anti-inflammatory
Chia for the omega 3's and fiber
Avocado for the fat and fiber
Thank you darling! I am looking at getting some good coconut to have as a snack soon, I think I am going to just do mono meals starting with meats first. Adding a few veggies although I have seen a much smaller list of veggies for IBD!
I actually have some slippery elm.. I think it might be old.. going to check it out. Zyflamed, that's interesting.. going to read up on that on!
For right now, I am doing no fiber at all, at least until I am thru this flare. I want Avo! Really bad.

Quote:
Originally Posted by sugarless4life View Post
I totally agree.

I used to battle ridiculous bouts of IBS, to the point I was in BED, sick. Once I got on LC and eliminated ALL GRAINS/FIBER, voila, no more symptoms. I have a new lease on life, to be sure!

My DD suffers with regular flares from ulcerative colitis. I hope and pray that one day she will believe her mother and STOP BEING A CARB QUEEN. Its exasperating when you know what they should do, but they're 25 and do their own thing!!! She is a self-confessed carboholic.

Betty
Hi Betty!
You know I am dealing with the same thing with my sister. She has had Crohn's for so long and I have talked to her about LC (heard a couple of years ago before I was Dx, that it was good for Crohn's.. ), but I can't turn her on to it.. at least not yet. I will still be working on her though.. especially now. Nice to hear from you.. *smile*
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Old 04-16-2010, 07:18 PM   #39
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cary, while coconut oil is fabulous, you might also try coconut milk with coconut powder. Put 1 can of coconut milk in a container, add 1 cup coconut powder. Now coconut powder is like coconut flour but a bit flakier. I buy it in an Indian food store in my area. Or, you can get flakes and put them in a food processor to make more of a flour. Put this in the fridge over night and you have coconut pudding! This will be healing to the intestines. Caprylic and lauric acids.
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Old 04-28-2010, 02:06 PM   #40
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My condolences -- this stuff is unpleasant stuff. I was originally diagnosed with Ulcerative Colitis, but on further inspection my dx was changed to Crohn's Disease. Both fall under the umbrella of IBD, and IBD then falls under the umbrellas of inflammatory diseases and autoimmune diseases, which include fun stuff like rheumatoid arthritis, lupus, multiple sclerosis, Hashimoto's, and a big nasty wad of others.

I've been told an amazing variety of things as far as what I should eat. 15 years ago, it was heavy fiber, little fat and meat. On various message boards, I've heard of people doing very well on such a diet. But others, like me, do much better on a low-fiber (don't want to rip things up even more down there), low-carb, high-fat diet. I eat a lot of meat and fat, but I don't eat a lot of veggies; maybe once a day, if that. If I eat them more than once a day, I know I'll be visiting the reading room multiple times the next day.

I also make sure my vitamin D is up there -- plenty of sun exposure and supplements. Right now I'm on two medications -- Azasan (azathioprine), which is an immune-suppressor, and Cimzia (certolizumab pegol), one of the new breed of biological treatments that blocks TNF-alpha in the body (other varieties of TNF blockers you may have heard of: Remicade, Enbrel, and Humira).

It took a long time to get this under control. Of course, I didn't help myself with diet at the start -- hadn't even heard of Atkins 15 years ago. They tried me on Asacol (mesalazine) first, but I was allergic. Then they tried Prednisone, a corticosteroid, which made me fat and miserable and ruined my joints. Finally, the immune-suppression drugs worked wonders. I've already told my doctors that I won't ever take steroids again; I now have arthritis because of them, and they don't help me at all.

They tried Entocort on me once, in the form of suppositories. Not only was it an unpleasant experience, but it didn't help at all. Most doctors certainly will try the steroids first, because they can (in some people) put you into remission or semi-remission fast. But I read somewhere recently (sorry, don't have a link and don't recall the source) that doctors will often try the most damaging drugs first. Which makes no sense to me!

Feel free to drop me any questions about anything Crohn's or IBD related. And know: it will get better!
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Old 04-29-2010, 08:56 AM   #41
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Quote:
I also make sure my vitamin D is up there
uber important! Cary, have you had your levels checked? You Floridians are (and excuse my teasing) a bit "sun cocky" with your vitamin D supplementation. Now I know you all tell me you're in a sunshine state but you're also above the equator so...........check the levels!

The amount of Gene Expression that D is responsible for is just amazing.
In fact, Centrum Silver just did a commercial that stated "And Vitamin D for the colon" now, that's a statement taken from research that they jump on but it's true.
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Old 04-29-2010, 12:30 PM   #42
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Quote:
Originally Posted by fawn View Post
You Floridians are (and excuse my teasing) a bit "sun cocky" with your vitamin D supplementation. Now I know you all tell me you're in a sunshine state but you're also above the equator so...........check the levels!
I wouldn't be surprised if most of the people down here in Orlando have low levels of vitamin D -- as soon as we moved here (from non-sunny Seattle) we had "SUNSCREEN!" shouted at us from every corner. I also see a lot of long sleeves and big hats, because everyone has been made deathly afraid of any sun exposure.

I think I wore sunscreen twice last year, both times on days I knew I'd be out in the theme parks all day long on a high-sun-exposure day. But for regular days, I don't wear sunscreen; I just stay sensible. If I start to pink, I go inside. No problem!
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Old 04-29-2010, 02:10 PM   #43
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It's amazing to me how many times I've heard from folks I admire that vitamin D supplementation could potentially prevent up to 80% of cancers if you're optimized.
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Old 03-01-2013, 06:52 AM   #44
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I know this topic is old but the information is good. I was DX'ed in 1995 with UC. Only had a couple flares over the years and have meds to use in an emergency. Both of my parents had or still have colon cancer (stage 4 for both but one is a 12 year survivor and the other is still taking chemo). I have pretty much been symptom free since starting LC in 2003/2004 but often will cheat and pay dearly for it.

Now since one parent had a recent DX of colon cancer I have been advised that I am a very high risk for colon cancer. Both parents have low Vitamin D levels and both take fish oil supplements but both complain the FO makes them feel icky.

I have been reading a great deal about CLO/FO's in general and know that both can be beneficial for the colon. I have tried 3 different brands and all 3 made me deathly sick (groggy and confused, agitated, severe gas and bloating and extreme fullness on the left side colon area). THEN.............the flare up started. I just have this feeling the CLO is to blame for the flare up.

All three brands made that left side colon so inflamed and now I am back on the meds for inflammation with hopes this all subsides soon.

Have any of you with IBD had bad side effects from the CLO/FO's?? I really think I will just stick to the Vitamin D3 supplements and stay away from the fish oils. Thoughts?
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