is scd necessary

[Belle]

I am on the scdiet rather then just gluten free. I was wondering if it was necessary to be that extreme. I am finding it very difficult to keep to. I have been on it for 5 weeks now and don't feel any better. i finally recently started entecort and feel a little better from that. When I took Dr. fine's test I only came up with sensitivity to gluten but nothing else (gluten was 14) Even the gluten antibody score was low. Interestingly enough I have been off gluten and dairy for two months and have only felt worse since then. I had a flare after going off gluten and started having joint pain which I never had. Recently I started have more pain in my stomach as well. I feel like everything I do to try and heal my self just makes it worse. I will continue to stay gluten free anyways and see but it would be so much easier if I could at least have bread with oats and some potatoes as I did not test sensitive to either one of those. so my main question is, do you think GF and DF is enough to achieve remission without going to the extreme of being off all grains and sugar. The naturalist who put me on the scdiet claims that it won't help during a flare and that's why i don't feel better but once things calm down I will be able to wean off the medication if I continue the diet. Any thoughts?

[JLH]

Try eliminating soy, too.

[Belle]

I have been off soy for almost two months as well

[tex]

Hi Belle,

Well, I disagree that a diet that eliminates one's food sensitivities won't work when in a flare. To the contrary, the purpose of the diet is to end the flare. Why else would we go to so much trouble to follow a diet? If it weren't for the flare, we wouldn't have needed a special diet in the first place, so I don't understand your naturalist's logic on that.

If your EnteroLab test result for casein was clearly negative, then you should be able to safely eat aged cheese, yogurt, lactose-free milk, etc. And after you achieve remission, you should be able to tolerate regular milk, again.

I looked for your EnteroLab test results in our collection, but they weren't there, so my question is, "Why do you feel that you can't eat potatoes?" Very few of us can't safely eat potatoes. (Many of us react to oats, though).

Your symptoms sound suspicious. You shouldn't be feeling worse. Are you sure that you are totally avoiding all traces of gluten, 100%? The reason I ask, is because after you have been off gluten for a while, if you are sensitive to it, and a little of it slips into your diet, it will make you feel much worse than you did before you cut it out of your diet. That may sound strange, but it's very true.

It's difficult to guess which additional foods could be problems, (without test results), because we are all different in our food-sensitivities, and in how we respond to drugs, and how we respond to the diet. Did you your tests include eggs?

Tex

[Gloria]

Hi Belle,

If you're seeing a Naturalist, they have a tendency to recommend herbs and other natural remedies. Sometimes even natural remedies can cause problems. Sometimes ingredients in vitamins can also be a problem. Are you taking anything in addition to your SCD diet?

Gloria

[brandy]

Hi Belle,

Maybe I can help. I'm very curious how much entocort your doctor put you on? The typical dose early on is 3 pills in morning in first phase.

To answer some of your questions....As long as you are 100% gluten free you can still get good results without being on the SCD diet. I have the SCD book and went to website but never went on it as it seemed too extreme for me to follow. During weeks of flare (before I got diagnosed) just on my own I did ok eating chicken, rice and overcooked green beans. This is all I ate for weeks on end and got to "softserve" on this diet . I stayed on this for several days after being on Ento then gradually moved into the same diet that I'm actually still kind on now.....Large portions protein 3x per day, 4-7 over cooked veggies per day (I'm probably closer to 7), 2 fruits per day, 1-2 serving either potato or rice, for fats I generously drizzled extra virgin olive oil on my veggies and have 2 spoonfulls of coconut oil per day licked off the spoon and also cook as much as possible with coconut oil. I went to this diet pretty much from comments on this board.

I'm sorry I don't know how to do the "inset quotes" but in regards to your comment about "feeling worse." I definitely "felt worse" before I got better. After going GF I had 30 days of joint pain that was unbelievable. THat went away after 30 days on Ento. I also "felt worse" getting on Ento. The first 6 weeks on Ento I had a lot of gas, a lot of mucous, and a lot of cramping. This went away with time. For me being on Ento in and of itself kind of "made me feel worse," also. It helped but I'm glad to be off.

Yes you can get to remission without staying off of grains and sugar. I could tell anything with sugar was problematic...i.e. major gurgling so I pretty much stayed away from sugar. Grains I was eating probably 1-2 servings of grains (rice or potatos) per day during my Entocort regimen. I would have starved without them. As a general rule I did better "limiting grains" but that being said I was having 1-2 servings grains per day.

General comments regarding foods.....Oats....Tex is right....despite the fact that you tested ok with oats stay away from them until you are healed and maybe try them 6-9 months out. I know there are "gluten free" oats on the store shelves because I have a bag on my shelf that I bought when I was at the same place you are. I'm going to give the bag to my boyfriend. There are two problems with oats. They are very close biologically to wheat (gluten) and can be problematic even though you tested ok. The second problem is that they are subject to contamination from wheat flour in factories.

Potatoes/rice: Agree with Tex....since you tested negative to these you should be fine. They should not prevent remission. I ate them throughout my ento regimen.

Aged cheese, yogurt, lactose free milk: Agree with Tex on this also about adding these back. Since you tested negative to casein I would add 2-3 yogurts per day to your regimen. Suggest getting the ones with "live cultures." The probiotics in the yogurt should help you out.

Hope some of this helps. Again I'm curious about how much Ento you are taking? I had dramatic results about 3 days after getting on Ento and had constipation at end of week 3.

I've been off of Ento for about 6 weeks and doing well. Do whatever it takes to remain gluten/wheat free and you should have very good results.

Brandy

[Belle]

i'm definately not purposely putting gluten in my diet although I cook regularly for my family so there is a lot of gluten in my house. i have a small kitchen so it is probably impossible to garauntee that it doesn't get into anything. I am taking an acidophilus and otherwise just folidreen and vitamin d. i at first took the entocort three at a time but it caused me to have worse pain so my dr. said to switch to 3 seperate times per day by meals. the only reason i would stay on this extreme diet is to see if it is possible that it will keep me in remission longer then just eliminating gluten, dairy and soy. Everything i tested for came back with really low antibodies. like 6 or under. Only gluten was 14 and corn was 11 so i obviously would not add those back. I still don't understand why i shouldn't have oats though. I also dont' understand how to find food intolerances. It all just seems so complicating and frustrating and i would really like my life back. today I had two family parties and had to bring my own food and i hate it. especially doing all this and not even feeling well. what's the point?

[brandy]

Hi Belle,

Re: the food intolerance question. I'm still trying to grasp that myself. I believe since you got the disease I think from accutane you might be slightly less susceptible to these in the long run than someone like me who most like me who most likely has genetic issues as my mother is a diagnosed celiac.

For me personally I've found it difficult to identify food intolerances. For me the signal is "extreme dizziness" two hours after eating something. In June 2011 I could tell that gatorade was problematic. Nov 2011 I could tell that corn pasta was problematic. Two weeks after I got off of Ento in Jan 2012 I could tell that rice, quinoa and apple juice were problematic.
Being on Ento kind of "masked" or "camouflaged" the food intolerances so that I could not identify them until 2 weeks after I got off of Ento.

Perhaps some other posters can clarify the food intolerance thing for you.

I'm getting ready to do the enterolab testing so thinking that should help me out and I've done the MRT testing but don't have the results yet.

Brandy

[tex]

what's the point?

We thought you wanted to recover your health. Remember, you didn't originally get sick because you were following the diet that we recommend - you got sick while you were eating the diet that you crave.

The bad news is, if you are still cooking for your family with gluten as an ingredient, (especially wheat flour), then it will be virtually impossible for you to keep all of it out of your own diet. Unless you have a below average sensitivity to gluten, then it will be extremely difficult for you to achieve and maintain remission without Entocort. IOW, if you're lucky, the Entocort, (together with a very low gluten diet), might get you to remission, but you will probably need to continue to use Entocort to maintain remission in the long-term. Trust me, if wheat flour is in your kitchen, then it is in your diet. I'm speaking from experience.

Tex

[MBombardier]

I have a very small kitchen, too. The Enterolab testing showed that I had no food intolerances, but that is likely because I was having some kind of IgA problem. Because of that, I have had to figure out my own intolerances. I am so sensitive to gluten that I cannot have it in the house. If your family loves you, they will go along with this. Because gluten-free is "popular" right now, there is absolutely no reason for you to have to have wheat in any form in the house, or for you or your family to feel cheated or abused because you cannot have it. I venture to say that if you get rid of all sources of gluten, including gluten-soaked wood, cast iron, or aluminum pots and utensils, that you would be amazed at how much better you feel.

I am asymptomatic (have no symptoms of intolerance) until I challenge a food. That means I go without it for two or three weeks, then have some. Over time, I have discovered that I cannot have any grains, legumes, or dairy. I generally eat according to the Paleo diet, which is much less restrictive than the SCD.

You don't know until you try it. Then you will be amazed at how much better you feel. It will take a while--there is a withdrawal period from gluten where you can think that it isn't helping and is actually making you feel worse. But you can get through it, and you will be so glad you did!!

Also... I have found out it's a good idea to listen to Tex (and others who have been doing this for years and years). For example, I didn't believe it when Tex said that most of the people who have trouble with gluten have trouble with dairy. I challenged dairy last summer and found out he is right. Oats is the latest thing that for me, Tex was right about. Oats has a similar protein to gluten. I thought I was fine with oats, though I wasn't eating them because of my Paleo diet. Last week I ate some homemade granola made with certified GF oats, and found out that I cannot eat oats after all.

You CAN get your life back, believe me. Hundreds have by listening to their bodies and doing what is necessary. There is a grieving process, but we've all been through it, and we have big shoulders for you to cry on. Go for it. You can do it.

[Leah]

I know how you feel. I too have been having a hard time discovering what I am intolerant to. If I'm understanding things correctly, there are protein intolerances that can be CAUSING the inflammation ( gluten, dairy,soy,eggs etc.)- and then there are the foods that exacerbate an ALREADY INFLAMED colon.

I am on a drug called Colazal ( non-steriod) and it does seem to calm things down. There are foods that definitely make the D worse, like salad, fiber, beans,caffeine and dairy. So I stay away from those ( which is very hard for me). Doing that and taking the meds have me at 2 loose BMs a day with some abdominal pain. Not great, but right now, it's about all I can emotionally handle. At this level, I can still work and live my life. I understand that if I want to try to get to remission, I will have to go Gluten free and maybe more. I just haven't made it to that place yet. I think I will get there one of these days, but for now, I am just trying to find a place where I can "live". Good luck. I understand completely.

[Belle]

thanks for your answers. I am on entecort and the diet and hardly eating anything and I still continue to have terrible stomach pain and joint pain. I don't care so much about not eating gluten again but my favorite food b4 was salaad. that is something I really miss and hope to have again once i acheive remission. there is no way i can totally eliminate gluten from my house as we use bread for a lot of our traditional meals. besides i have young kids, it is much harder to make these changes on them b/c they cannot understand why i am not cooking their favorite foods. how long do you think i will need to be on entecort to acheive remission if i cannot figure out all my intolerances and continue to eat some? according to the sc diet. the point of it is to starve out all the bad bacteria. that is what I was wondering about. is that really necessary with this type of colitis (cc) and does it work for it? i feel like this diet is depressing me so maybe it is not worth being on. i need to be more positive or i will not get better

[Belle]

by the way, i have not been eating spelt, but is it also a problem?

[Leah]

Hi Belle,
I know how you feel about the salad. I'd love to get back to eating them also, but as you know, they are really rough on our intestines right now.
I also have CC ( and have only been recently diagnosed) and I don't think remission is about "starving out bacteria". I believe it's about taking out the foods that cause the inflammatory response. That's why it's important to take it all out because even the smallest amount can cause this.
Like I said, I'm not there yet and when I want to feel somewhat ok, I just keep my foods very simple ( as if you had a stomach flu). When I am ready to REALLY eliminate food, then I will do it right.... but for now, I am just keeping things calm.

[tex]

Belle,

Yes, spelt is a source of gluten. The gluten content is not as high as wheat - compared to the high level of gluten in wheat, the gluten in spelt would be classed as moderate. It's not suitable for someone who is gluten-sensitive, unfortunately.

After you have been in remission long enough for your intestines to do a reasonable amount of healing, you will be able to eat salads again. The idea is to start slow, and work up. Iceberg lettuce is the worst offender. You might be able to eat certain types of salad ingredients sooner, if you eliminate the lettuce for a few months or so.

Concerning the cause of MC, at one time I thought that bacteria were a common cause of the disease, but while there are probably a few people whose MC was caused by a bacterial imbalance, or an infection, I no longer believe that bacteria are the primary cause of the disease.

Look at it this way - many, many members of this board, over the years, have reached remission by changing their diet to eliminate the foods that cause their immune system to produce antibodies, and they are able to maintain remission, by continuing to avoid the foods that cause the problems.

On the other hand, a lot of people have tried an antibiotic, followed by a probiotic, but that only works for a few weeks, and then they relapse. If bacteria were the problem, antibiotics followed by a good probiotic should bring remission. You be the judge. I don't consider the SCD to be a practical diet for MC.

Tex