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Crohn's Disease Forum » Parents of Kids with IBD » Why can't doctors incorporate nutrition into their treatment?


06-15-2013, 08:36 PM   #1
Donna Bernstein-ness
 
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Why can't doctors incorporate nutrition into their treatment?

My son was diagnosed with UC this past October. He is almost 18. Treatment is typical but we have started working with an outstanding clinical nutritionist who once worked at Johns Hopkins but left because the doctors don't seem to have any knowledge about contrition/ food as medicine, and refuse to incorporate nutrition into their treatment. Our experience with the MDs has been exactly that. The nutritionist put my son on a gluten and dairy free diet with probiotics and high quality vitamins. He put himself on the paleo diet. The MD put him on prednisone and other standard meds short of immune suppressors and he was prescribed an enema. He was in remission for a while and MD said looking at his colon during his 2nd colonoscopy that if he didn't know his history he wouldn't know he had UC. In may my son went out of the country for a month and food was pretty awful. He had a flare-up and came home and kept getting worse. MD tried Ucras but that didn't work. We went to nutritionist and he started taking human strain probiotics and higher doses of L-Glutamine. She got him off paleo diet and he started eating rice products again. Within 24 hrs of taking the probiotics with L-Glutamine bleeding almost totally stopped. Md put him on prednisone again. My son had a sigmoidoscopy this past Wed, less than a week from bleeding having stopped. . Md said he should go on immune suppressors. Would not acknowledge that probiotics and L-Glutamine did anything. Very frustrating for my son bks it's hard to get any info from MDs about any studies on the use of probiotics, L- Glutamine, etc. My daughter asked about Leukocytopherisis but MD said such treatment is not available to my son. Does anyone know if that's true?

Last edited by Donna Bernstein-ness; 06-15-2013 at 08:39 PM. Reason: Nutritionist told my son to get off paleo diet which he did.
06-15-2013, 09:14 PM   #2
DustyKat
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Hi Donna and

I don't know if Leukocytapherisis is available to your son but the underlined word will link to our wiki and that will show any related threads discussing it. You may also want to ask in the Ulcerative Colitis forum. There are other parent's here whose children have UC so they may be able to help out too. I will tag QueenGothel and killcolitis for starters.

As to diet...well yes, many if not most docs dismiss a correlation between diet and IBD. I don't know if this also plays a part in things with you being in the US but outside of the states diet is very often a first line treatment for CD in children and that diet is Exclusive Enteral Nutrition. Studies do confirm that it is as successful at inducing remission as steroids are. Unfortunately those studies do not find corresponding success with UC.

I personally believe that whilst not causing IBD diet does play a role in alleviating the symptoms in a flare and in helping maintain remission. My own daughter (CD) has taken route with diet and is vegan/raw vegan and she also avoids most sugars. It suits her and she says she feels well following this type of diet. She had surgery 7 years ago and has remained in remission since then. She does take Imuran but I can't say if it is the meds, the diet or both.
It seems that diet is a very individual thing but I feel if you make a change to what you eat, whether it be one food or ten foods, and you feel better for it then stick with it. I must say that I do think my daughter's diet is on the extreme end of things and I would like her to ease up a bit but she is well so what can I say. She is 21, by the way, so past the age of me telling her what to do!

Have a look through the diet forum and also make use of the search function on the top tool bar.

Good luck Mum and if you have any questions please don't hesitate to ask. Welcome aboard!

Dusty. xxx

PS. Click on the underlined words and they will take you to either the wiki or to forums I have linked you to.
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06-16-2013, 06:01 AM   #3
Dexky
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I believe one huge reason that GI's avoid diet issues is the individual nature of IBD's. Most of them acknowledge the need to rule out dietary triggers but those triggers aren't the same for everyone. Ours did, and still does, make suggestions as to common triggers. He also encouraged us to try gluten free and the probiotic we use was per his suggestion as well.

I don't and never will understand GI reluctance to encourage professional dietary help. Perhaps, if things go south, they want to avoid liability. Who knows?
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06-16-2013, 06:26 AM   #4
kiny
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I can only speak from CD, but there's no concrete evidence that a diet does anything at all for CD. I did get TPN right after diagnosis, but I was 36kg, and it's a therapy that is used a lot here, but only if you're underweight, it's not used to actually get you into remission. Also would you really want to be in a hospital for TPN that long, hospitals are a great way to get enterococcus and c difficile, let alone a more serious infection.

I also don't believe in EN too much, even though I use it (but it's to keep my weight up than to treat crohn's disease) when you go over the studies that claim it helps, they are studies with really low start CDAI scores. You can prove that standing on your head helps crohn's disease if you take a number of people with low CDAI scores, because the likelyhood that they go into spontanuous remission is very high.

For L-Glutamine there have been quite a number of studies, especially the small intestine uses a lot of Glutamine, not so much the colon.

I've posted it once before but will do again. They gave patients 21 grams of Glutamine daily for 4 weeks, that's a lot. It did didly squat. And this is in people with crohn's disease, it would be far less effective in UC because of the way the small intestine uses glutamine, much higher than the colon.

I've taken glutamine regardless, there are in vitro studies that show it might protect the lining, might halt fibrosis in mice, might limit AIEC from invading epithelial cells, I have linked all those studies in the past.

But from a doctor's perspective I completely understand why they don't give special diets, there is no evidence it helps. And when you get patients in your office that are anorexic, (I was 36kg at one point), the last thing you should tell them is that they should restrict food groups, unless there is good evidence it helps, and there is 0 evidence SCD or Paleo helps at all. Glutamine is debatable, it shows promise in vitro, but when they actually use it in vivo it doesn't seem to help at all, probably because it's not easy to be short on glutamine, glutamine is extremely bioavailable, it's very unstable in free form though.

06-16-2013, 06:59 AM   #5
Dexky
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06-16-2013, 08:12 AM   #6
my little penguin
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The one thing I did notice and maybe I am wrong from your post is each time your son improved he had been taking pred and diet changed .
It may have been the pred or the diet or both .
It really is common to need an immunosuppressant in those dx at a young age ( less than 25)
I think diet does work as an adjunct therapy in some people when combined with the right medical drugs. I also think what the diet is can be very individualized.
I do know for DS diet did not help much ( we tried it all at various time pre and post dx)
The only thing that helped him was EN and that was from a weight prospective .
Hope the docs and nutritionist can come up with a good plan for your child
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06-16-2013, 08:45 PM   #7
crohnsinct
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I am a huge believer in diet as a healer for many diseases and it is my passion. I have read many books and case studies on it reversing cancer, heart disease, diabetes etc...I have not once come across any clinical evidence of it reversing IBD.

That said, after diagnosis, my daughter did a round of EEN to help get her to remission along with the drugs that at the time were working but not getting her all the way there. Once in remission we have slowly moved to a vegan diet. We do this to support overall health and the meds she is on. She is healthy as a horse and since moving to total vegan we have seen improvement in her weight, skin, hair, nails, and sports performance (competitive runner and swimmer).

Her GI is over the moon with how good she has been looking. He believes diet helps the meds but like someone mentioned said it is highly individual and he just doesn't have the expertise to advise on diet. Further, when dealing with kids and teens feels that diet will have a lower compliance rate than meds.

I think having a good registered dietician working with you in addition to a doc, is an excellent idea. We also work with a chiropractor. But neither the RD or the Chiro say they can replace drugs.

Sorry don't know about the things you mentioned in yout post but Good Luck!
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Remicade
Methotrexate (12.5mg wkly - oral)
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Previously used - Prednisone, Prevacid, Enteral Nutrition

Daughter T dx 1/2/15 at age 11
Vitaligo, Precoscious puberty & Crohns
Methotrexate (15mg weekly oral)
Enteral Nutrition
Entocort
IBD-AID Diet
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Previously used: Mtx injections
06-16-2013, 10:47 PM   #8
ChampsMom
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06-16-2013, 11:12 PM   #9
kss
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Donna Bernstein-ness, There are a lot reasons why your MD doesn't appreciate diet, one is that it's impossible to do a double blind placebo controlled study involving diet. The MD world view is highly restricted. (And once you dig into it a bit it's not even very scientific although it gives a nice veneer of science.) Also keep in mind that MD's traditionally don't take any course work on nutrition.

I can point you to two studies on diet, one done by crohnology.com and the other is being done at Univ North Carolina (http://bit.ly/11FAu0v). I believe both are more focused on Crohn's disease. I tried to summarize the initial Crohnology results when they first appeared: http://bit.ly/T7taG7. I'm sure the chart has been updated by now and there's more responses.

I'd also like to point out something which may seem obvious but that doesn't get talked about very much... If you're on a specific diet which excludes processed foods, is low in saturated fat, and avoids excess sugar and includes things like vegetables and fruits it will help your overall health whereby lessening the impact of any sickness.

And btw I have Crohn's and I eat a nearly gluten free, nearly vegan diet which is low in sugar. I'm not religious about it but since I've started eating like that I've stopped the only drug I was on which was azathioprine. I've been off aza and on the near gluten free vegan diet for 2 years without a flare. In my experience diet helps control the symptoms. I've also found exercise helps, too.
06-16-2013, 11:13 PM   #10
kss
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Oh and I forgot to post this: http://www.ncbi.nlm.nih.gov/pubmed/16208112
Leukocytapheresis is effective in inducing but not in maintaining remission in ulcerative colitis.
06-18-2013, 10:32 AM   #11
QueenGothel
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Hi Donna B, sorry your kid has UC. My DD had UC. Since has had her colon removed.... That is a long story if you want to read it feel free to click the link at the bottom of my signature. My experience with diet was it didn't really help my DD. She was not the normal UCer either though, she was alway chronically constipated so GF Diet was a disaster. We tried the pH diet for her and that worked the best in regards to getting her healthier but it didn't induce remission. The only thing that ever got her out of a flare was Predisone and no one wants to take that for a long time, let alone an small child (she was 3-4 at the time). That doesn't always work forever either. Long term use it stops working so well. In the end it did nothing for her. We got all the bad side effects and none of the good.

Probiotics we didn't try in high enough doses at the time of her UC and her doctors didn't believe in their use at the time. We now use VSL#3 which is considered a medical food not a supplement. It contains a lot more than the average capsule you would buy at the health food store. She takes 4 capsules a day now and that equals 450 billion live cultures. She takes it now to avoid pouchitis, and it has worked wonderfully. Pouchitis is inflammation in the J-pouch (man made colon created out of the last 10 inches of small intestines). The science behind it is that if poo build up and she cannot empty her pouch correctly the probiotics help in avoiding a large amount of bad bacteria to mutiply/ colonize in the pouch. Hence her body attacking the bad bacteria and her pouch all at the same time. Creating a barrier of good on the intestines so the bad cant penetrate through. Makes sense to me. Now that being said her surgeon put her on probiotics and her GIs didn't believe in it. It states right on the bottle that is it use for both Illeal-anal Pouch and UC. So there is evidence that probiotic taken in a very high dose can help UC.

I agree that probiotics could have been beneficial but I also think it was the Predisone that got him out of the flare. As he would of had to have been on a very high dose of Medical grade probiotics in order for the probiotics to help. This is just in my experience. My kids is 5 and takes a lot for her tiny J-pouch and the colon is enormous in comparison.

In all the research I have done... The only natural things we have used that really seemed to help is probiotics, high doses of B complex and D3, and we also use Tumeric. Idk if the Tumeric helps but I give it and now we have found a good place so I stay with what seems to work for her. Granted none of these things I tried with her Colitis. I was on a learning curve because she went from mild UC to complete colectomy and take down in 7 months time. Most of that was spent in the hospital. I really hope for remission for your kid. I pray for a cure. In the meantime, you found a great place for support. The people here are like angels. The wealth of knowledge you will find here is dumbfounding informative. My best to you and yours.
06-18-2013, 10:41 AM   #12
QueenGothel
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Oh and Nutritional shakes during a flare were a requirement. It really helped her. Without them she was lethargic and very lazy.
06-19-2013, 12:54 AM   #13
vtfamily
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Donna,

I understand your frustration. I'm not exactly sure how UC is the same/different as/from Crohn's. My son has Crohn's.

Good, balanced nutrition always helps anyone suffering from digestive/auto inflammatory & immune diseases. That said, these are very personal diseases. For all of our efforts over the past seven years (and from talking to other Crohnies) the one thing that stands out most to me is the individual nature of the disease. What works for some people with the disease, is not always effective for all people with the same disease.

So, take heart. Follow your instincts. Try this and that until you find what works for you!

Best of luck to you!
Cheryl
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