This cure is simple -- limiting the total carbohydrates consumed to 72 grams per day. While this is simple to understand, its not simple to do. For one thing almost all foods offered are high in carbs. And there is not a lot of support with either the still-recommended-but-outdated food pyramid or the general consensus that the low carb diet is a tried, but failed, diet fad. Oh, and of course there is the addiction to carbs. (Which is probably the biggest obstacle.) But there is just too much research out there to ignore; research that collectively shows that reducing carbs can help with many health issues. An in-depth review of this research is summarized by Gary Taubes in "Good Calories, Bad Calories", a book that challenges some long-held beliefs.
While I am not surprised that eating healthy would cure a digestive disease, I am surprised at how few with ulcerative colitis are aware that there is a potential cure. My daughter was diagnosed with ulcerative colitis, but she was not encouraged to eat healthy by her doctors. I don't know why. I am guessing it is because medical school does not promote nutrition. Also, it takes time before you see results for ulcerative colitis. That's the bad news. Read on for the good news.
In the book "Life Without Bread", written by Christian Allan, Ph.D., and Wolfgang Lutz, M.D., there is one study by Dr. Lutz for patients with ulcerative colitis that I think you will find astonishing. Here is an excerpt from the book:
"Even though ulcerative colitis responds to low-carbohydrate (72 grams/day) nutrition, its course is not as rapid as that of Crohn’s disease. However, very positive results have been observed using the low-carbohydrate diet for ulcerative colitis patients.
Of the first 74 patients treated until 1979 with a low-carbohydrate diet, approximately 60% were without complaints after two years. They had normal laboratory values and normal rectal mucosa. The remaining 40% took longer to stabilize. Some of these patients required up to 8 years until the bleeding stopped, iron levels normalized, and diarrhea and abdominal pain subsided.
Whoever believes they can get rid of their colitis in a few months is mistaken. But one has to see the success of the diet in relation to its alternatives; there are none we know of that can give these overall results."
This is exciting, especially since eating healthy and reducing carbs cured my daughter. In April 2002, we discovered blood in my daughter's stools. Anne (I am using her middle name for privacy) was only six years old, and after extensive tests she was diagnosed with ulcerative colitis. She was put on Asacol and given predisone when there were flare-ups. Over the next year she would go into remission for a few months, but then the symptoms would return, worse than before. On October 3rd, 2003, she started having pain in her joints, as well as quite a bit of blood in her stools, and was given prednisone for several months.
I remember being told early on by Anne's pediatric gastroenterologist that Anne will likely have progressively worsening symptoms, and then need to have her colon surgically removed when she became about 16 years old. Apparently the average time a person deteriorates to needing this surgery is about ten years from the initial diagnosis.
I couldn't accept that. At about this time the "SuperFoods Rx" book by Steven Pratt came out, listing the 14 super foods for health. It is an excellent book and easy to understand. I focused on those foods that decreased inflammation, which is the essential problem with Anne's disease. So we started a new regime of slowly switching our food choices to the most healthy foods. We didn't know it at the time, but these foods are also low in carbs.
The biggest changes we made are those that we still practice today. We frequently eat smoothies in the morning -- plain yogurt with frozen strawberries and blueberries mixed in the blender, salmon once per week, tuna once per week, oranges, turkey, no pop, very little fruit juice, and rarely eating at fast food places. We are also now having her take 2 fish oil pills and one vitamin D (2000 mg) pill.
Here are four basic rules we all follow, even thought Anne is the only one in the family with ulcerative colitis:
1. Limit the total carbs per day to 72 grams of carbs. While this is not always possible, this is the overall goal each day.
2. Eat more protein with each meal to reduce the craving for sugar and junk food. One rule of thumb is to divide your weight in half, then eat that much protein grams per day. For example I try to eat 25 grams of protein for each meal, or a total of 75 grams per day (see the "Potatoes, not Prozac" book). We love the whey protein shake from Trader Joes.
3. Eat more non-inflammatory foods: wild-caught salmon and tuna, spinach, broccoli, oranges, yogurts, blueberries, organic strawberries, for example.
4. Drastically reduce omega-6 foods such as soybean oil, found in Miracle Whip, and eat more omega-3 foods such omega-3 eggs and grass-fed beef, etc.
Because the foods we eat are based on a lifetime of habits, it will take time to make these changes. You don't want to get frustrated, so be sure to find foods you like, and plan on making small changes at a time. See Dr. Weil's web site for a customized health plan.
The result of all this? Anne has not had a single flare-up of her disease since October 3rd, 2003. She has not been on preventative medications for over two years.
Please don't dismiss this as luck or genetics. Anne was getting progressively worse, not better. While she needed to be on medications for some time, we were very determined to eat healthy every day. We have worked too hard for this to be dismissed. My hope is that others will see the potential and decide to try to reduce their simple carbs.
We are still scared, since we don't eat as healthy as we would like. Anne still eats ice-cream, candy, cookies, etc. It is just in moderation to the extent possible, which is pretty difficult given all the holidays, celebrations, and basically unhealthy school lunches. But we will keep trying to eat healthy.
Happy 6th anniversary of good health, honey. Let's hope others with this disease can say the same, soon.
29 comments:
Congratulations on your milestone. Here is a news article which I found interesting since they recommend not eating onions. Here it is:
Low carb diet now extends benefits to IBD
A special low-carbohydrate diet has been found to relieve the distressing symptoms that afflict people with inflammatory bowel disease (IBD) – an umbrella term that covers Crohn’s disease and ulcerative colitis.
The Australian study, from Box Hill Hospital Victoria, found the diet, which involves cutting back on foods including wheat, onions, milk, ice-cream, apples, honey, stone fruits and legumes, to be effective in more than 50 per cent of patients with IBD who have co-existing irritable bowel syndrome (IBS).
Very inspiring since my very young child has been diagnosed with UC recently and we are desperate. She's on the SCD, which allows honey, and it's hard not to give her any sweet things (ie honey, fruit). Other than that, no grains, candy etc. How long did it take for you to notice a difference with your daughter? How severe was her disease fi you don't mind me asking, my child has pancolitis, so I'm not sure how effective dietary changes will be. Thanks and good work.
I am sorry to hear your daughter has pancolitis. My daughter's UC was not quite as severe, I believe. We kept our daughter on her preventative medications (Asacol and Azathioprine) for 4 years following her last flare-up, so its hard to know when the diet changes made a difference. I hope you will research Dr. Wolfgang Lutz, since he had wonderful results, even though it can take years for some with UC to be symptom-free.
I only read a little about the SCD diet (at first glance it seems somewhat difficult to adhere to). I know that personally it got a lot easier to eat healthy over time as the addiction to sugar decreases. I try to keep the total carbs at around 72 grams, based on Dr. Lutz's findings. We don’t always do well, and now here comes Halloween! But we keep trying. Between school lunches and holidays it is hard. We have found it easiest to eat healthy breakfasts and dinners. If we ate a low carb breakfast and dinner, then we will have ice-cream after dinner. I hope you will not be too hard on yourself if there are days of unhealthy eating. It will probably take years before you see results, unfortunately, but it is worth it. I think it is important to slowly introduce the healthy foods while reducing the junk foods, so it becomes in-grained as a natural way of eating over the long run.
I hope you have a chance to check out the books I mentioned. I wish you and your family the best of health.
Thanks! I've read the books and they do give me hope, especially Dr. Lutz's, though Breaking the vicious cycle is good too. They are actually pretty compatible. The sick irony is that my family were organic food eating vegetarians and didn't eat much junk at all and this happens. Tons and tons of whole grains and carbs, and now we're at the other extreme. No matter as long as it works! I appreciate your post, though, it's good to see people come out the other end of this "incurable disease"!
Further to the above, when did you know to take your daughter off of the medication? Did her GI approve?
Thank you for your blog re: Crohn;s and diet. It gave me much needed hope and also made complete sense to me.
My 18 year old son was just diagonosed wtih Crohn's and I want to try to manage this with diet. I took out Life Without Bread and Super Foods as you suggested.
My question, he is in flare-up mode right now...on prednisone and Lialta. Do I just take away all carbs while he is on medication or wait till diarrhea is under control??? Also, are there any cook books that you recommend and what did you do with school lunches for your daughter?
Thank you very much.
Hi Claire,
Your welcome! The whole reason for my writing was to reach out to other moms. While I am sorry to hear your son has Crohn's, I think he is lucky to 1) have a mom that is researching different treatments and 2) that this disease seems to respond more quickly to a reduction in carbs than uc.
I don't want to give any advice that might make things worse, so I am not sure about taking away all carbs. When you read the Life Without Bread book, you will find that you actually want 72 grams of carbs rather than 0. There is conflicting suggestions from people with IBD and doctors, and I don't know what someone with Chron's should or should not eat. I would definitely try to find more research by Dr. Lutz since he had such great success with Chron's patients.
But in general I would think that if you took out most carbs, esp. that with simple sugars/starches, and increase the anti-inflammatory foods, in the long run he should feel better, and maybe even sooner. I never did anything with the school lunches. Will your son read some of the books? Anne hasn't had a flare-up in so long we have talks to motivate her again. It helps that my dad and other members of my family are into eating healthy. We have our healthy days and our sugar-rich days.
As a mom, I would try to keep things the same for your son as much as possible while switching out the meals to not have as much bread and pasta. We have meals that are just chicken and broccoli, for example. It was weird at first not to have bread with the meal, but now we don't miss it (and we do have it every once in a while). We don't have cereal in the morning, but still have dessert right after dinner. Basically we don't count carbs anymore, but we had to at first just to get a sense of what is high and what is low in carbs. (It always seemed to be different than what you would expect!)
I highly suggestion salmon (pink wild-caught) if at all possible, at least once a week, even if he is taking fish oil pills. It has 2,000 mg of omega-3 for 4 oz. Sometimes I mix a can of salmon with tuna for tuna melts.
That's all I can think of right now. Good luck to you all and let me know if you have any questions.
Colleen
To Anonymous:
That is a good question. We did not know when to take Anne off her meds, and the doctor said it was up to us, since she had no symptoms for several years. We stopped her Azathioprine first, waited, then tapered off the Asacol. Its scary since I didn't want it to come back. And yes, her GI #s looked good.
Last question on this topic, but it's unclear in Dr. Lutz's work whether the 72g carb limit applies to everyone or if there's some way to calculate a limit for children. Did you just limit everyone to 72g or did your daughter have even less?
Thanks,
Sherry
Hi Sherry -- actually my focus was not on limiting my daughter's carbs, since back then I did not know it was important. Our focus was on the "super foods", which happen to be low in carbs.
We talk now about limiting the carbs to 72 grams per day, but I don't think we do as well as we should. Because she has been in remission its easy to forget about her disease.
I don't know the answer to your question, but I think it makes sense to proportionally reduce the carbs for small children.
How long did you have her take Azathioprine? Were you happy with it? We have been doing SCD but cannot stand to see our girl continue to lose weight. We are keeping carbs low, but looking more to add back some potato in trying to get her more excited for food. She is 10 yrs old and has colitis.
I am sorry to hear that your daughter is losing weight. Our daughter was taking Azathioprine for about 4 yrs. She never had a flare-up while on it. My guess is that the meds prevented the short-term symptoms, and the diets worked its magic long-term.
I hope your daughter gets better soon. Sounds like she is very lucky to have caring and informative parents.
One thing I would like to mention is that my girls somewhat like healthy foods now, at least compared to the neighbor kids that won't touch sweet potato french fries or spinach salads. I think that our taste buds are less used to some foods like fast foods and pop, and it actually doesn't taste as good anymore when we do eat it. (At least McD's or pop isn't as good...I'll always love choc. chip cookies!)
I just remembered one thing the family loves --I make banana bread but substitute 1/2 sugar with blueberries, and also subst. 1/2 the flour with almond meal.
Thanks to this wonderful person Colleen
Bean, we have been doing the Dr. Lutz from The Life without Bread book/72 grams of carbs a day, with our 10 year old girl who has ulcerative colitis/pancolitis. I cannot tell the world enough how happy we are to have given our daughter her life back. Finding your blog directed me to find this most important information that HAS NOT BEEN GIVEN the main stream exposure that it deserves. Why are people made to hurt and suffer while real, REAL ANSWERS for help are out there????? The medical field has offered us surgery and a chemo drug (6MP), but not one diet. Patients take the risks, and medicine makes the money. I take it back, when we asked about diet we were told that if we knew of something that does not sit well with our girl's digestion, then don't eat that. BUT we have been told that our daughter’s problem is not a problem of diet says some of the experts and much of the medical world, because “there just has not been enough research,” they say… Yet the cause of her problem is STILL UNKNOWN, they will tell you that flat out. So the medical GI brains of America definitely DO NOT know what causes IBD, and yet they DEFINITELY KNOW IT'S NOT FOOD. And IBD MUST be treated with risky medicines and surgery, but THEY DON’T KNOW WHY. But if you know a food bothers you, you shouldn't eat it, even though that has nothing to do with it... INTERESTING logic.
It has only been 5 weeks of doing 72 carbs daily, along with some other things, NONE THAT ARE PRESCRIBED treatments, and our girl is pooping beautiful logs. A TURD HAS NEVER BEEN MORE BEAUTIFUL. 5 weeks ago she weaned off and finished her last dose of prednisone and was having 3-6 loose bloody stools a day. She looked like we just rescued her from a concentration camp. (That's a bit of an exaggeration, but not by much). She was easily 12 pounds under the weight she should be and has not grown at all. She had that death warmed over look, pale, gaunt, dark circles under her eyes. Our baby girl had been sick for 9 months, not much of a life. She still weighs 2 pounds less than she did 9 months ago when this started. And it is a wonderful triumph for us to see her where she is at today, ONLY 5 WEEKS LATER! She has gained back 7 pounds in these last 5 weeks, 5 pounds probably in the last 2-3 weeks. We had to be patient, but not nearly as patient as we expected. She looks like a growing kid, she looks well nourished. Dr. Lutz states to expect 6 months-2 years or more to get better. She still has some "pink snot" on her beautiful logs, we know there is still healing to be done, but WOW! 5 weeks ago we thought we were days or hours from needing a blood transfusion. Elaine Gotchall says to expect up to 3 weeks to see obvious improvement when on her SCD diet. It was the end of the 3rd week when we saw clear improvement in bowel movements; there were fewer BM’s, 1-3 daily and less blood.
Thank you so much Colleen.
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Besides doing the 72 carbs a day eating, we have been reading everything we can (including Colleen Bean's blog) trying to find out what works for other people so WE can figure this colitis out. The over 10 grand spent in medical care is not helping. We have taken variations of Specific Carbohydrate Diet (we stopped all grains and milk), low FODMAPS (we allow only very little fructose, no milk-but she eats ANY cheese and homemade SCD yogurt -has no lactose), and we keep carbs to 72 grams a day. We implemented these approaches together. It was obvious to us that our daughter could not eat the honey and apples (fructose) in SCD and it allows too many carbs. It was obvious to us eventually that our daughter could not eat all the rice, oatmeal, “gluten free” grains allowed in the low FODMAPS diet -plus too many carbs. So combining these two approaches with the limit of 72 carbs a day is what we have done. AND in 5 weeks, we have watched our daughter transform back into the bright eyed beautiful child we used to know, who can now run outside and play.(I am tearing up.) We are of course aware of the suggestion that our doctors would say this is JUST TEMPORARY remission and she will be back to bloody diarrhea eventually. We have not dismissed this concept and proceed with caution. BUT after reading Life Without Bread, we have confidence that we are doing the right thing regardless of ANY setbacks that may likely come. Having no life, chemo drugs and surgery are no longer our impending doom. Surgery is not our “cure”, as proposed by doctors. If a person keeps eating wrong, that “J-pouchitis” (J-pouch is the new surgically made colon you can have made from the remaining small intestine) is the same as having ulcerative colitis, you’ve just reduced the amount of surface area that is inflamed.
Thank you so much Colleen- you showed us the missing link.
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We have also been having our girl take calcium x2-3 daily, lactobacilus(only) probiotics twice a day(per SCD diet/Elaine Gotchall), folic acid x1 daily, an adult gummy multivitamin in the AM, vitamin D-3(cholecalciferol) x1 in the PM, a QUALITY 1000mg Fish Oil x1 daily- made a difference that we could see (poop improvement) from switching over to a quality fish oil from the cheap Wal-mart ones. Had been giving iron daily, but really saw her get form back to her poop when we trialed NOT taking the iron. Her lips are pink; she has energy and is no longer pale. She probably is better off keeping her food in body longer versus taking the iron and pooping everything out too fast. Even though as her mother I feel like she should still be taking iron. Using Einstein type LOGIC and not just a feeling, says she is better off pooping logs and skipping the iron at this time. Even though I doubt she has good iron stores. She also gets Whey Isolate (28) Protein shakes at least one a day, and baby spinach salads at least 3-4 weekly.
(Per the 1991 Symposium Report on Nutritional Issues in Pediatric IBD, -highly recommended reading) Some over looked, medically ignored, seemingly BIG HELPERS for IBD/Celiac type sufferers are Glutamine and Vitamin K.
Having colitis seems to deplete vitamin K and glutamine from the body, especially prednisone and antibiotic use. -Also the bleeding, inflammation and diarrhea. The report states: "Starvation promotes villus atrophy." (Shrinking/shriveling of the absorptive surface fingers in intestines). -such as the starvation of long-term severe diarrhea. "Glutamine is the preferred fuel of the inner cells(epithelial) of intestines. Glutamine has not been considered an essential amino acid, but is considered a 'conditionally essential amino acid'(protein building block) when the body is in a catabolic state(starving).” Vitamin K is ‘the antidote’ to bleeding. When bleeding cannot be stopped because of thin blood/lack of vitamin K, vitamin K is often given. How easily does a friable mucous membrane bleed with low vitamin K in the blood or when a person has very thin blood???It bleeds pretty easily. We can't put a bandage over our bleeding colon to help it heal. And we have to eat, so the colon doesn't get to rest. So eat greens, eat spinach…It is the closest thing to putting a band-aid on your colon...It seems...
Your blog helps others Colleen :)
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Plus baby spinach salad can be palatable to a kid. We eat it with ranch dressing, yummy.
A few others from this same report (1991 Symposium Report on Nutrional Issues in Pediatric IBD) are arginine and resistant starches. Arginine is another amino acid (protein building block)needed when a body is in a starving or a healing state. It is suppose to promote hormones the body uses for growth and healing. Resistant starches we feed our girl are cold potatoes in cold potato salad(no onions) and green bananas (1/2 at a time). There are other resistant starches that do not meet the criteria we use in our diet approach. Resistant starches are supposed to be especially best for healing colon "nearest the exit, AKA proctitis, the sigmoid colon, the rectum".-the most difficult place in the intestines to heal. Once again resistant starches are supposed to digest into short chain fatty acids that "feed distal colon cells" those inner intestine cells (epithium) need to be nourished and heal.
Really? IT'S NOT WHOLE GRAINS?-as we will be told TIME AND TIME AGAIN... What? How do those grass seed hulls feel on the delicate skin on the way out??? Our intestines probably like seed hulls as much as the inside of our mouth likes to suck on a pound of hard candy sour balls. Really, you need a broom to clean a colon? How has that been working?
In the 1991 Symposium report it quotes that they gave kids with Crohns disease liquid elemental diet (completely broke down food components of protein, fat and carbohydrates) infusions into their stomachs through a nasogastic tube (tube feeding) while they slept. They received about 1 Liter a night. The kids who got glutamine in their feedings got better quickly, gained weight, and went into remission. The kids who did not get glutamine in their tube feedings did not get better. So we give our girl whey isolate 28 protein shakes at bedtime so she can soak it in and heal. She ate raw baby spinach salads for vitamin K everyday in the beginning, now she is eating spinach salad once every 1-3 days. 1 cup of raw spinach is about 1000mg of vitamin K. She eats less than a cup at a time.
So the method of giving our girl glutamine and arginine is through PROTEIN 28 ISOLATE shakes from GNC. I chose Whey Isolate 28 Protein because it is “predigested”. It is broken down into basic protein/amino acids. The regular, just plain, whey protein shakes ARE NOT BROKEN DOWN is my understanding, AND REQUIRES good digestion to break down the proteins. We are mimicking the protein part of the liquid elemental diet used in hospitals to the best of our abilities. We cannot expect our little girl’s system to be good at breaking down foods for digestion, she has had bloody diarrhea for 9 months. It’s easy to give our kid healthy fats that an elemental liquid diet would have. And now thanks to Dr. Lutz we know there REALLY AREN’T ANY ESSENTIAL carbohydrates. Not that we shouldn’t have some carbohydrates. And getting enough carbohydrates in ones diet is NOT THE PROBLEM. We started with 3- 1/2 cup shakes daily, now she has 1-2 shakes a day. Most of the time she loves them. We put in (SCD)homemade yogurt in sometimes and that makes it more like dairy queen, we add berries or bananas to make them extra yummy. We add about a tablespoon of virgin coconut oil melted, into her shakes for added awesome flavor, calories, essential fats and energy. Per Mark Kanter/The 10 Day Colitis Cure book and several web sites, coconut oil (especially virgin) is protective against intestinal fungal infection.
Thanks again Colleen.
The 1991 report also mentions that Americans eat way too much Omega-6 and not enough omega-3 fish oil, this was known “though controversial” 19 years ago... At our home we used to only use canola oil (mostly omega-6), this STILL, “so-called” good oil. Apparently in 1991 some medical people knew that omega-6 was bad and causes inflammation. So now we take fish oil and use fully saturated fats that Dr. Lutz says has a better antioxidant effect than our popular carbohydrate based antioxidants.
I want the world to know what is working for us. I want other people with IBD and the like, to have help, REAL help that isn't just masking symptoms and treatments that are risky or absurd.
Interestingly the 1991 symposium report speaks of the Nutrition in Pediatric IBD that is written in the report, as being controversial at that time. Those diet ideas I listed above and others were controversial in 1991? How much of this information is given as treatment to patients today? Did they have in entire symposium of "not enough research?" Apparently it was worthy of discussion 19 years ago with the BIG GI BRAINS OF AMERICA. What made it controversial? That it is not effective treatment or that it doesn't generate income for the GI medical field? The effects of glutamine were compared to having the same effect as being treated with 6-MP. Meaning both had the same healing effect on the colon, but how toxic is glutamine, an amino acid, compared to 6-MP, a potentially toxic immunosuppresant? Long-term use of glutamine is probably unnecessary being a conditional essential amino acid. Meaning, if you are healed, you do not need to take more glutamine. So how dangerous is relatively short-term use of glutamine compared to severe diarrhea, chronic bleeding, starvation, malnutrition, stunted growth, immunosuppression, liver damage, surgery, death? Glutamine's use is not recommended???? Not even as a treatment to malnutrition? Our GI specialists never addressed our girls malnutrition. Why? Isn't addressing malnutrition important? For a sick starving child? Aren't GI specialist specialized in the absorptive and digestive system? So they do not address the area that they specialize in? I really don't get it! Would a dietician have my child take glutamine???? And then we won't need our GI specialist? Could that be the other missing link? Is it required safety to have liver enzymes watched when you take protein shakes or liquid elemental diets? Liver safety and watching liver enzymes is A BIG DEAL when taking 6-MP.
So what makes GI specialities so certain that diet has nothing to with conditions of IBD? Is it because IBD symptoms are completely different than say Celiac disease, a disease where food is the problem. Celiac disease symptoms are basically; diarrhea sometimes with blood, weight loss, anemia, and malnutrition. So based solely on symptoms alone, it is IMPOSSIBLE to know if my child has Celiac disease or IBD. Which it was proven by our GI specialist and over $10,000 in medical bills, that my girl has UC (THE COMPLETELY NOT FOOD RELATED DISEASE). And she does not have Celiac disease the food caused and diet treated disease. This has been proven by duodenal biopsy, CT scan and blood test. But when we stopped feeding her grains, milk, excessive omega-6 and sugars, replace a few depleted nutrients and very soon she feels, look, acts, and IS much better.
Good Luck to YOU ALL. I intend for the world to learn the truth about all disease, especially IBD.
Thank you sooo much Colleen!
I will keep you and your blog informed of our progress. Hopefully others can be spared the helplessness, risks and suffering we have endured; thanks to whatever it is our health authorities think they have done to better their world.
Sharibara: I read your first comment on Sunday, and have been walking on air since. To hear that a little girl has gotten better is really the whole reason I put the time in to write this post.
I had been meaning to write something for years, and felt guilty that my daughter did so well because we knew "the answer", while others suffered. But any time I talked to someone with UC, they were not interested. I am guessing it is because they were inundated with diet information that didn't work.
I really enjoy reading your comments, since not only are you a talented and interesting writer, your research is thorough. Can you send me your email to askcolleenh@gmail.com? I would like to talk to you more. I want others to know about this!
Another thing I found was that if you have a child under weight. Try to have your child eat the daily calories that would be required if your child were their ideal weight. Our daughter had been in the 60th percentile for weight roughly her entire life until acquiring ulcerative colitis. So we found out how many calories a day she would eat if she were actually the weight for her age to be in the 60th percentile. She was in about the 5th to 10th percentile 5 weeks ago. We slowly worked to get more calories into her which was difficult at first. She had no appetite early on after weaning off prednisone. We encouraged her and tried to sneak in extra calories when we could. Now she has an appetite of a horse. She's in about the 25th percentile now. We have stopped keeping track because it is obvious she is getting enough and she is hungry all day long. We have a hard time keeping up with her appetite. It is a wonderful thing. I so missed her rosy pink cheeks and her sense of humor which has also returned...Our goal is to have her up to at least 50th percentile by the end of summer, and no colitis. Good luck and bless us everyone.
Hi Colleen-
I switched to low carbohydrates. I haven't had a mountain dew in 3 or more weeks (I was addicted). I eat leafy greens now (endive, spinach, escarole...etc.), psyllium, flax oil, gr8-Dophilus etc. I am happy to report your low carbohydrate method when selecting food choices is working EXCELLENT. I suffered for 10+ years and now I am doing great. Thanks. Your the best - jim
Jim, I am so happy to hear it is working well for you. I will need to research your other ideas (psyllium, etc.) to see if others can benefit. Thank you for letting us know!
Hi,
I am very impressed with your posts and your zeal to help others. I am a 32 year old male diagnoised with UC at the age of 24. I have about 3 flare ups in the past 8 years. I don't take any of the regular anti-inflammatory drugs like asacol etc because of none of them worked for me as they tried to increased my symptoms. I have not taken any drugs for the past many years except for the prednisone during the flare ups.
I am currently having my 3rd flareup and I am already 3 weeks into it. I am taking prednisone but it is still not getting under control. I have increased the dosage to 30 mg twice a day. I am only going about 3-4 times a day but it is still mucus and blood.
I am trying to figure out the best anti inflammatory foods during this flare up period so I can get this under control. I am currently only having little quantities of "white bread+corn flakes+white rice+cooked spinach+yougurt". I know this is not the low carb diet but somehow this helped me during my previous flare up so am trying that. But it is taking a long time to get this under control.
Can you please suggest any changes in my diet or anything else to get my current flare up under control. It is very painful and have lost about 15 lbs. I definitely want to try out the SCD diet after this to even stop having any of these flare ups again. Thanks in advance for your response
Response to Rahul: At the end of school, the first week of June my daughter had a school program where all the kids got dilly bars. Well she ate one, her flare started the next day! But what I can tell you, she took prenisone with the other 2 flares. She did not take prenisone this time, she has gotten better faster, with seemingly less ill effects. Because she would have to "recover" from taking the predinsone. They had her on 40mg a day the last time when she was a 60 pound kid. That's a lot. What I do know is that prenisone depresses HgH - human growth hormone. This is not a desired condition when you are trying to heal your body. Of course it reduces inflammation, at least initially, but our experience was that we saw less bleeding with her when she did not take the prednisone. And also we are still doing her diet as listed in posts above. She is doing well. I would say she experienced more fatigue with this past flare - no hyper effect of prednisone. She also did not respond well to medications she tried in the past Asacol/Sulfasalazine, these made things worse. Now I think prednisone made things worse too. And when you consider the wear and tear effects of high dose/repeated use of prenisone (decreased bone density, screwed up hormones through out the body, HgH, insulin...); well do the benefits out weigh the risks??? The concern it to stop the bleed and/or give you your life back from a chronic diarrhea life. Prednisone may have extended her previous flares. My understanding too is that as time goes on, flares are not as bad. We are on board with LOW CARB. My husband and I have seen improvements in our health from low carb as well. We have not evolved or adapted to eat sugar the way sugar is every where you turn these day. SAD and Stupid! Most people would not thinks of giving up donuts, but will sit down to their array of pill bottles to try and dampen the donut's effects. I am not telling anyone what to do with their medication. We did not seek prednisone this last flare, we just dealt with it. And she is doing well, prednisone did not get her better any faster for certain. She is eating low FODMAPS, almost no grain, low carb...
Vitamin D, I think you need it. If I could say anything was different with our child who deals with UC. She has seemed naturally "pale" most of her life. Use of sunscreen was highly promoted by healthcare when she was young. And she was my child who would travel with her sunscreen, she would pack it to bring it to friend's houses, ect. While my other child would only wear sunscreen if I chased him down and put it on him myself.
Vitamin D and Prevention of Chronic Disease is a video on U-Tube by Dr. Michael Holick. Watch this if interested. This past flare was 2 months less to recover, versus 4 months to recover the last time when we were first figuring out her diet needs. It's not really fair to blame that longer flare on use of prednisone/flagyl she used last time, since she had for 1 month taken Rolaids contaminated with TBA 2,4,6, pesticide, musty, and recalled. She got very sick, her doctors were not interested in the fact she had been poisoned, with a history of GI bleeding from the first, and the last, time her GI bleeding initially started after taking Motrin contaminated with black specks/AKA metal shavings. Doubt prednisone/flagyl helped clear toxins from her body with these "flares", probably the contrary. Beside the point, she takes vitamin D (3,400) units a day now and we took her sunscreen away. She is encouraged to get outside for mid day sun 20-30 minutes a day or more if she wants. She has not had sunburn and is a little tan. She is gaining weight, is hungry and has energy. Her tummy symptoms are much better, diarrhea is gone, though her last blood check revealed anemia and elevated sed rate. Good luck to you all.
[I sent this email to Rahul on July 31st]
Dear Rahul,
Thank you for your nice words. I am sorry to hear that you are experiencing symptoms of this disease.
While it is good news that eating reduced carbs -- keeping it around 72 g per day -- seems to be a relatively simple method to prevent this disease, I don't know of any controlled studies that suggest certain foods to eat to reduce the symptoms.
I am not very familiar with the SCD diet, but the little that I have read it does seem to have helped some people, but to me seems difficult to follow. My concern is that there were no controlled studies on this diet, unlike Dr. Lutz's study. If you get a chance please read the study by Dr. Lutz in "Life Without Bread" with respect to UC. I thought it was very encouraging.
As far as doctors: I have found doctors to vary quite a bit as far as their knowledge and care, so you might want to try a new Gastro if the current doctor is not helping.
That being said, I would like to suggest that you substantially increase your Omega 3. There are plenty of new studies that demonstrate a positive response for many, many diseases. On average it seems we need at least 2 grams of Omega 3 per day. If you look at your fish oil pill (which I hope you take), you are probably only getting 720 mg (or .72 g) per day from 2 pills! So please either start eating quite a bit of wild-caught salmon and tuna and supplementing with pills. You will need to do some research on this. I purchase burp-free pills which cost more, but really work.
If you increase your fish and leafy greens every day, I would imagine you would see an improvement in a few days or a week. If decide to give this a try, please let me know how it goes. I will post your results (anonymously if you like) if you give me permission.
Good luck and let me know how you are doing.
Colleen
Here is more bright scientific information that agrees with Life Without Bread and explains why sugar in its many forms, hurts us, especially in excess. Please read about what Derrick Lonsdale MD has to tell us, (posted below).
I continually thank my gut instinct for not letting so called top of their field "Un"Orthodox Medical practioners to take out our child's colon or severely immunosuppress her. We were told her disease was severe and would certainly require colon removal within 10 years. When what she needed was dietary change. She needed to eat healthy, that all. Mainly greatly reducing sugar intake, including nearly not eating grains and processed junk. High calorie malnutrition is everywhere.
Surgeries and immunosupression make "reduce" symptoms. This is not healing. Healing is giving the body what it needs, the body heals itself. My child is living PROOF. I feel horrible for the literally gutless souls who are never given the chance to heal from within. Because arrogant practioners look the other way. Not one medical practioner suggested improving diet, or even inquired about what my kid was eating. What would be the intuitiveness of asking about diet in disease of digestion? If we were trying to help diseased plants, would we consider what was in the soil??? What a sorry pathetic state of medicine to be so blinded, ignorant, and arrogant. Anger and frustration come from my high expectations. The medical field would like us to believe that they are offering the best information available. They think they should be trusted. If you do not trust them as a patient, you are the bufoon. If you ask for help in diet, you are the bufoon. Our stupidity was the over $10,000 in medical expense, our time and energy they absorbed without ever even getting their meat hooks completely into my kid. Holding a good thought for the world to see, to learn and find the information it needs to live healthy and be healthy.
http://www.prevmedgroup.com/dysautonomia.php
Hi Sharibara,
As always, you are absolutely right. It is an outrage, really, that people with UC have to suffer unneccessarily, while a beautifully simple solution is right in front of them -- literally. Yet those in the medical field refuse to encourage eating healthy foods. How is that even possible? I am at a complete loss for a reason.
One of the reasons I wrote this post was because I was shocked by a response from a ped. GI at Camp Gottagokwik one summer. I was excited by the discoveries of eating healthy, and he said "No, eating a healthy diet will not make a difference with this disease (UC)." But it was the patronizing smile he wore and the absolute conviction that surprised me the most. He didn't consider it something worth discussing. I left without saying much more. Over the years I've brought it up with a few doctors, but they were not interested.
I just wish we could reach more people.
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