Specific Carbohydrate Diet?

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Robs a

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I am hoping to get some advice from all you fabulous mums out there. My son diagnosed in October..... 6 weeks of EN which was not entirely successful, followed by Entocort (onto his 12th week). We are trying to wean him off the Entocort and have reduced the dosage slightly with no visible difference thankfully. GI very keen to get him started on Revellex (Infliximab) and I am ambivalent and reluctant. I am keen to explore all other options before resorting to this, the story of our lives as parents isnt it? Have heard some great results from the SCD way of eating. Has anybody tried this? Would it be possible to stop all meds and try this out for a specified period of time? My son has never presented with very severe symptoms other than poor weight and low iron. He does not suffer with diarrohea or stomach cramps. I would ahte to compromise his health though but so loathe to resort to the big medicine guns. Would so appreciate some advice here.
 
Sorry, I have no experience with using diet exclusively. However, please also have a look at the Diet, Fitness subforum (found on the main page).

Good luck :ghug:
 
Tesscom very keen to hear about the Remicade treatment which I understand Stephen started today. How did you get to the point of accepting that it was ok to go with this medication? How is Stephen? Did his symptoms get worse over the last few weeks?
 
Sorry we tried it and just couldn't stick to it so I can't tell you if it works or not. I think we lasted about 2-3 weeks. I think Charleigh uses it with her son. Hopefully that tagged her and she will respond.
 
E is med free and doing awesome on SCD. It is a difficult diet but it is working wonders. Even E, at eleven, says it is completely worth it.

If you look in the Diet section of this website (not in the kid's forum). There is a special section for SCD and Paleo diets. Lots of support there. Recipes, others tracking their progress, etc.

I have a link at the bottom of my siggy that will take you to my thread on E or you can find it in the diet forum.

PM me if you have questions.
 
On one hand I'm 'okay' with it, on the other, I'm sick about it! :ymad:

Stephen's been well, no real change. He had 2-3 nights, a couple of weeks ago where he had pain, diarrhea and vomitting - I was afraid it was narrowing but, as it hasn't happened again, I'm back to thinking it was the amount of food he ate, when he ate it (just before starting EN) and the type of food (heavy, greasy).

I think the biggest factor is that Stephen is 18 and I have to accept his decision. In explaining the consequences of not getting the inflammation under control, the GI convinced Stephen remicade was essential or he would eventually face surgery. Stephen was very upset and scared when we left that apptmt. I think the GI was extreme and manipulative (saying things like you cannot live without a small bowel :ack:) in how he presented the issues to an 18 year old boy. Especially as this was in October, GI said nothing else would be effective and we couldn't risk leaving the inflammation simmering so didn't want to try anything that might not work (LDN, entocort, flagyl, etc.) but yet left Stephen on nothing more than supplemental EN until today!!!!

But, the fact is that three MREs did show chronic inflammation, EN seemed to be controlling the crohns but not enough to eliminate the inflammation. The GI is correct in that continued inflammation will eventually cause more serious issues so 'something' had to be added. While I don't believe the situation is quite as urgent as the GI described it to be, Stephen now believes surgery is very likely if we don't move ahead with a 'real' medicine (as per GI comments, Stephen doesn't believe LDN has 'real' success :ymad:).

The GI really pushed remicade opposed to humira, imuran, metho, etc. If I have to choose from these meds, then I'm as 'happy' with remicade as I am with any of these other choices. :( There have been studies that have shown the cancer risk is increased if biologics AND immunosuppressants are used (whether together or not) so, if we're going to go with immunosuppressants only to later move on to the biologics, I may as well start with the biologics and, perhaps, avoid using immunosuppressants and the 'higher' risk. (However, I have read of, at least, one other study that showed the same risk with biologics alone. Who knows???)

I've also read that remicade is most successful if used within two years of diagnosis and before other meds are used. If I'm going with any med, I may as well give it (remicade) the greatest chance of being successful. Again, simply a case of accepting the lesser of two evils...

Stephen is convinced he needs remicade, he may not be wrong??? At his age, I can't/won't take on the responsibility of telling him 'no, not remicade, you're going to do LDN' and then have him face surgery in a year's time.

So, in a (longish) nutshell... this is how I have come to a grudging acceptance. :)


As far as what you are attempting with the SCD diet... I don't have an opinion on whether it can or can't work. I know it wouldn't work for Stephen as he's too picky an eater and between our schedules and him leaving for university in September, it would be completely unrealistic to think it would be a change Stephen could make now. Perhaps, if he was much younger or when he's older...
 
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Rob

My daugher presented with iron low and poor weight gain and very little pain 6months before dx. At dx she was in constant pain, had losted 14kg in 2 months and had anemia.

She was dx to mild to moderate crohn's with chronic imflammation, our originial plan, was to use aza and pred to get her into remission, and after a solid 18 months of remission as confirmed by colonscopy and MRI come of all drugs.

13 months into our journey with crohn's Sarah has a fistula small bowel to small bowel and her crohn's is now classed as severe.

Good luck with what ever option your choose.
 
My daughter was diagnosed 3.5 years ago and has been on almost every med without success. Pred dependent for years, imuran give her liver enzymes 10 times the norm etc, tried every antibiotic, even imported meds shown to have success but which weren't available in our country (with the GI's approval). Too sick to have surgery as per her surgeon last summer. She's currently on the gaps/paleo diet (very similar to the scd but without dairy, with bone broths etc) and is doing well. She's grown and gained two kg in two months. I'm not saying this will be our "cure" (though I hope it is) as I've seen many many ups and downs with this disease but I will say she's doing better than she has in a very long time. Even bounced back from norovirus with the diet. Just our experience. It does not hurt to try - give it three months. If it doesn't work, you can always stop.
 
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My son's GI said he had 2 patients with severe Crohn's that responded very well to the diet. Not all patients do. It did not help my son. Talk to your doctor about how long it would be OK to try it before having to use other medications. You wouldn't want things to get worse. Good luck!
 
Thanks everyone for the input. Always fantastic to get support! At the end of the day though I have to say that having to make the decision for one's child is so so difficult.

Tesscom in a sense you r lucky that Stephen is old enough to make his own choices, I appreciate your post and pray all turns out well for Stephen. am watching his progress very carefully as there seems to be some comonality between his story and my son's.

In terms of the SCD, strange that there are no trials being done to determine whether this diet is successful in treating Crohn's. The crazy thing about this condition is how individual it is, what works brilliantly for one person fails dismally for another.
We will be meeting with our son's GI next week, together with our nutritionist and hopefully we will ahve some clarity after that. In the meantime so wish I could get my son off the Entocort. It has been 12 weeks!!!

Dannysmom, just read your story and would love to know whether you ever got a diagnosis on Danny and how is he doing?

Thanks again everyone!
 
killcolitis said:
My daughter was diagnosed 3.5 years ago and has been on almost every med without success. Pred dependent for years, imuran give her liver enzymes 10 times the norm etc, tried every antibiotic, even imported meds shown to have success but which weren't available in our country (with the GI's approval). Too sick to have surgery as per her surgeon last summer. She's currently on the gaps/paleo diet (very similar to the scd but without dairy, with bone broths etc) and is doing well. She's grown and gained two kg in two months. I'm not saying this will be our "cure" (though I hope it is) as I've seen many many ups and downs with this disease but I will say she's doing better than she has in a very long time. Even bounced back from norovirus with the diet. Just our experience. It does not hurt to try - give it three months. If it doesn't work, you can always stop.
Click to expand...

Thanks for your response. Is your daughter on any other meds at this time?
 
Catherine said:
Rob

My daugher presented with iron low and poor weight gain and very little pain 6months before dx. At dx she was in constant pain, had losted 14kg in 2 months and had anemia.

She was dx to mild to moderate crohn's with chronic imflammation, our originial plan, was to use aza and pred to get her into remission, and after a solid 18 months of remission as confirmed by colonscopy and MRI come of all drugs.

13 months into our journey with crohn's Sarah has a fistula small bowel to small bowel and her crohn's is now classed as severe.

Good luck with what ever option your choose.
Click to expand...

Catherine, sorry to sound so ignorant but how do they dx mild crohn's as opposed to severe! What would be the factors that determine the severity? i am also a little confused by your post and very eager to understand the timeline. So how long did Sarah take the Aza and pred, and was it successful in inducing remission for 18 months?
 
Mild to moderated crohn was when she had active disease in end of large bowel and start of the small bowel.

Her Crohn's is now is active only in 30cm of small bowel, considered severe as it has formed a fistula.

Sarah has not been in remission but she has had long periods of no symptoms. She developed a fistula while appearing to be in clinical remission. My daughter is an odd case.
She inflammation markers were normal at this time.

At dx "plan was to get her into remission and step down meds and finally go off all meds", this plan failed with the development of a fistula.

Sarah for the most part has silence disease.

She is currently doing a 50mg pred course to qualify for remicade.
 
Catherine said:
Mild to moderated crohn was when she had active disease in end of large bowel and start of the small bowel.

Her Crohn's is now is active only in 30cm of small bowel, considered severe as it has formed a fistula.

Sarah has not been in remission but she has had long periods of no symptoms. She developed a fistula while appearing to be in clinical remission. My daughter is an odd case.
She inflammation markers were normal at this time.

At dx "plan was to get her into remission and step down meds and finally go off all meds", this plan failed with the development of a fistula.

Sarah for the most part has silence disease.

She is currently doing a 50mg pred course to qualify for remicade.
Click to expand...


thanks for that Catherine, I understand now! it is so frightening that so much can be happening internally whilst externally all seems to be ok. I worry about that too with my son as his symptoms seem so mild. this very issue makes me tempted to go with GI recommendation of Infliximab. Such huge decisions! Wish you and Sarah strength!
 
The diet we tried was similar to SCD but was aimed at reducing liver enzymes. This was pre-dx of PSC. I've said elsewhere, the problem I see with this diet is it doesn't provide the nutrition and calories needed for a growing child. I lost 40 pounds doing it w ith him over 6-7 months! I don't know if the true SCD diet addresses this concern. It's a tough decision, good luck!
 
Robs a -

I think we all struggle with the medication risk/benefit.....you are so right!

Ironically Claire is tall tall tall with normal weight but the bleeding, pain, rashes, arthritis, etc, etc, etc run rampant as soon as this crazy disease and her overzealous immune system works it's way around her current regime.

I just urge you to work closely with your doc and monitor monitor monitor (I'm all about repetitive words this morning) if you come off meds completely. Your doctor has to be your partner in these decisions because you'll need him if things don't go the way you are hoping.

Hugs,

J.
 
Consultation set up for this week with GI, nutritionist, my husband and I to discuss the way forward. So hoping GI goes along with my wish to try out the diet route. Our problem though is that insurance has approved the Revellex but it needs to be started by the 27th March otherwise we will need to reapply. Would have liked to at least try the diet route for a few weeks first before making any major medication decisions. C'est la vie!
 
I just wanted to advise you in advance that your GI will more than likely turn down the diet attempt and it could be for a good reason, or because that is just out of his or her practice. If you would like some more info about the diet please have a look at my SCD journey thread I have linked into my signature below my post.
 
In my experience, KWalker is right about your Dr. Ours firmly hated the fact that we tried the SCD for 3 months. My son felt better, but underneath things were brewing. So I highly recommend lots of monitoring if you try it. It will be a hard thing to do if your child is vegetable-picky! I know many have had great success with it and I do believe diet has can help. Good luck with whatever you try. The decision process is always tough.
 
^^^ Yeah that, Jack's doctor was all for diet but not alone and wanted him monitored and working with nutritionist. He is such a picky eater that we were really not able to make anything work and even with no particular diet have been hard pressed to get enough calories into him.
 
Just to report back. As predicted by most of you (and of course felt by me too) my son's GI was not very interested in us attempting the SCD. Obviously the lack of scientific evidence a huge factor in this but also in his experience he has not seen much success from this kind of treatment. He is a huge supporter of EN but that is it in terms of diet as a treatment option. He feels very strongly that my son J needs to start the Revellex (Remicade) immediately and he told me that my anxiety about the medication was not making things easy for J and that part of his treatment is in fat my positive attitude. Blah blah blah. I get all this but then asked whether he would take the Revellex or give to his own son to which he answered that when one's quality of life is so conmpromised, lack of energy, anaemia, low iron, poor weight etc, he would absolutely take the meds. He also spooked me by saying that if we do not treat J appropriately now, he is almost positive that surgery will be required in the next year. I relented (sadly) and the first infusion is scheduled for Tuesday 19th March. I would love some tips on anything that should be done in prep for this infusion! Thanks!
 
Robs a,
I feel for the tough decision to okay the remicade for your son. I have not had to make that decision, yet. There is a section under treatment clubs in the parents of IBD kids here:
http://www.crohnsforum.com/showthread.php?t=44907
and under treatments here:
http://www.crohnsforum.com/forumdisplay.php?f=58
From what other parents have said after that first treatment of remicade and their child is free of symptoms and has a ton of energy and gaining weight and growing. They are glad for the remicade and don't want to stop.
That is the issue with all meds though weighing the risks against the benefits and for most of us the benefits outweigh the risks and we make the best decision we can with the information we have.
Hope the remicade provides great benefits and J is feeling fabulous quickly. Sending lots of support your way.
 
Hi Robs_a,
I am sorry you feel sad that the GI did not support giving the SCD diet a chance prior to Remicade. I do hope the Remicade makes your son feel better. I am curious how your son was diagnosed with Crohn's and what were his initial symptoms and current symptoms? Did the EN help any of his symptoms?
Thanks for asking about Danny. He is doing much better this year (fatigue improved by 80%, but still has some symptoms (ab pain, D 4x daily, etc.) ... and still undiagnosed.
 
I agree with others, we tried it and it is hard to get enough calories. Breads and cereals provide a lot of iron, my son is now anemic. You substitue grains with almond and coconut flour - both are too fiberous for my son. You have to eat bowls and bowls of steamed veggies, not most kids. If this diet works, it is just another sign that a bad bacteria has taken over these children's bodies, because it is starving the bad bacteria. Our nutrionist said at least cut out gluten, corn, and milk; take the natural antibiotics that kill yeast and bacteria like olive leaf, oregano oil, grapefruit seed extract (all in small pills) and virgin coconut oil. You can find a complete list on the candida diet website.
 
Also, proper food combining has helped my son tremendously. You eat your veggie first, then potato and meat last. Fruit is not to be eaten with a meal, but a snack. There are other rules to it, but it makes sense and cut out his GAS completely.
 

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