Specific Carbohydrate Diet

[Jenreum]

I have been having a hard time posting, so I hope this works.

I was diagnosed, at the age of 27 with Colagenous Colitis. I am now 39 and still no real answers as to why
I have flares, or when they will go away.
In August of this year, I started a new job and created a really bad flare up, that is ongoing still. So, four months later
I am struggling to gain control over it. I have been gluten free since 2007, and that has definately helped the number of times
I go a day. Ususally when I go into a flare, I cut out dairy, and corn, and usually can calm myself down fairly quickly. But, that did not work
this time. So, I was reading about the SCD diet and thought the science behind it seemed rather thoughtful, and decided to give it a try.

I don't have a yogurt maker, and so I am just eating plain yogurt with honey. Chicken, squash, hard boiled egg, bananas, avocado. Thats it.
And, I honestly The one thing that I am doing wrong is having coffee with almond milk in the morning. The almond milk contains cane sugar.
Could that one think prevent me from healing?

Is there anyone here that has tried the SCD diet and it worked? So you remember what it was like in the beginning?
I know this diet is for UC sufferers and Crones, so I'm not sure if it works for collagenous colitis.

Just for reference, when I'm not in a flare, I can eat dairy, corn chips, I do have a problem with vegetables most of the time, so I tend to stay away from them.

Help!!!!! I am so confused about this illness. I am a busy mother of three, I have a part time job, etc. Just want to feel better.

I use the bathroom 2 to 4 times a day. Average is three. Usually in the morning, but sometimes once before bed. I also take kirkland brand fish oil. 1000 mg, It contains fish oil concentrate, gelatin, glycerin, and mixed natural tocopherols. And I take a vitacost B-100 complex. It contains Gelatin, magnesium stearate, silicon dioxide, stearic acid, cellulose and dicalcium phosphate.

[Nancy]

I tried the SCD for a few years but never really healed. I finally got tested at Entero labs and found out I can't eat gluten, casein, egg or soy. SCD cuts out gluten and some soy, but says soy oil is OK. The 24 hour cultured yogurt and hard cheese eliminates the lactose but not the casein. And the eggs are freely used in SCD but I found out I cannot tolerate them. I also tested sensitive to rice, oats, almonds and corn. The almonds were on SCD and I used a lot of almond flour. So as hopeful as I was for the SCD to work it still had a lot of foods I cannot eat. My suggestion is to get the Entero lab testing done.

[Jenreum]

What is the entero lab testing?
Could I just have food allergy testing done with my GI
Doctor? Thanks so much for your reply!!
Are you feeling better now? Did cutting out your allergy foods
give you back a normal life with no MC symptoms?
Thanks again!!

[Nancy]

Google Entero Labs and there is the information you need there. This seems to be the most reliable way to be tested for food allergies. I just recently had an endoscope and a colonoscopy done to reconfirm my diagnosis of collagenous colitis. My GI put me on Entocort. Thank God he is giving me samples. I'll be on those for 2 months. I also cut out all offending foods. I am so much better it seems a miracle. I was having chronic diarrhea for months. I lost weight and was mildly dehydrated. I am really hoping that after I am off Entocort I'll be a new woman :) Of course the food changes are for life at least the gluten, casein, egg and soy. Pretty sure your new job stress brought on you latest flare. This site has been an amazing resource and encouragement for me.
A support group of sorts. Stay in touch.

[tex]

Hi Jenreum,

Welcome to the discussion board. with Nancy. The SCD is a step in the right direction, but it's simply not a big enough step to resolve most cases of MC. While it's certainly possible that the SCD has allowed 1 or 2 members here to reach remission, for every 1 that it has helped, there are a dozen or so who were prevented from reaching remission because of the casein, soy, etc., that it allows. It's possible to modify the SCD so that it will work, but modifying the SCD to make it safe basically converts it into the paleo diet, so most people would be better off starting with the paleo diet, and modifying it to suit their needs.

My guess is that you are similar to me, meaning that you may have built up a tolerance to casein that allows you to eat it without suffering any clinical symptoms. That's true for me. However, testing at EnteroLab shows that I produce antibodies to casein, and that implies that this tends to maintain a background state of inflammation that makes it easier for other food sensitivities (or tiny traces of gluten, for example) to trigger a reaction when they otherwise might not. Plus, when I cut casein out of my diet, my osteoarthritis symptoms began to fade away.

The bottom line is that MC is a tough disease to consistently control. No single, simple diet will work for most of us. We have to develop our own individual diet, based on totally avoiding all the foods to which we are sensitive, and typically we have to continue to fine-tune it as time passes. But if we persevere, and always read labels carefully, we can get our life back, and that makes it all worthwhile.

Incidentally, IMO, the stress associated with changing jobs is probably what triggered your flare back in August. Stress is a self-perpetuating trigger for MC, because chronic stress can trigger a flare, and once the flare is in progress, the clinical symptoms create both physical and emotional stress that is sufficient to keep the reaction going. For most of us, controlling stress is an essential part of effectively controlling MC.

Again, welcome aboard, and please feel free to ask anything.

Tex

[Jenreum]

Thank you so much Nancy and Rex!
It is true about stress! And it is becomes a roller coaster!
Once the stress triggers MC symptoms, I get more stressed
And hence, the symptoms get worse.

Rex, I never thought about the dairy that way.
That could be why I never fully recover, I just ride
Through, always on the edge. The tests are very expensive!
And right now, I'm basically all water, so is that really
Going to be good for a test?

I also get arthritis symptoms on my knees and lower
Back when I get a flare. I find that the fish oil helps
To relieve those symptoms.

I must say that I am extremely weak and naucsious
On SCD and don't know how much longer I can go.

Nancy, you spoke about entocort. I've been offered it
Every time I go to GI, but have never taken it. And I've had this for
12 years!! Mentally, I feel that it is a last resort that will work.
But, what if it doesn't? Or what if symptoms come straight back?
Then I feel that I wouldn't have a " last resort" option anymore
And that's scary. Do you have any side effects?

Thanks again!! I really appreciate the feedback.
I'll have to check into Paleo. I feel like I have all water
Because there are no grains to "bulk" up the stool.

Anyway, lots of thoughts!!

[Jenreum]

Sorry!!! Tex!! Not Rex. :)

[dfpowell]

I also tried the SCD diet, for quite a few months, and could not get into remission. When I did the enterolab test I found out I was reacting to almonds, eggs, and casein, which were a big part of my diet. After taking those foods out I did much better.
I agree with Tex, about checking out the Paleo diet. Also, I found it helpful to keep a food and symptom journal to help me identify foods that I was sensitive to.

[Nancy]

Since we don't have a drug insurance I knew I couldn't afford Entocort on my own, and I told my doctor so. That is why he gave me samples. I have been on other medications in the past, Sulphazalazine, prednisone and once a time with Immodium. That was with another doctor. Now that I have eliminated the offending foods I am hoping this entocort may be a temporary need to get me controlled until I get a little healing going. I also recommend highly recommend reading Tex's book called Microscopic Colitis.

[sunny]

Jenreum, welcome home! I tried SCD, Gaps, Protein Power, (earlier version of Paleo). I've come to the conclusion that all the plans work....for some people... Our challenge is to find by trial& error what works for us! The folks who do well are quite persuasive in their claims, they know it worked for them. When I came here, I read for days older posts in various topics and learned very quickly. Then I ask questions and opinions of this board. You've come to right place for help. Welcome!

[JFR]

I too followed SCD for a long time and it was helpful for a while but never entirely successful. When things got really bad I found this forum, eliminated dairy and eggs immediately (I was already gluten and soy free) and then did the Enterolab testing and eliminated more foods including chicken. It has made the difference between being housebound from d and being able to live my life.

Jean

[tex]

And right now, I'm basically all water, so is that really Going to be good for a test?

I'm sure that most of the samples they receive have the consistency of something between diarrhea and dirty water, because few people who have normal-looking stools are going to be likely to feel the need to order a stool test. If it's totally on the side of dirty water, though, it may not contain enough material for a good test. I really don't know where one would draw the line. A phone call or an email to the lab will provide an answer to that question.

I also get arthritis symptoms on my knees and lower Back when I get a flare. I find that the fish oil helps To relieve those symptoms.

Back when I was reacting, those were the same reasons why I began taking flax seed oil and glucosamine sulfate, and they did indeed seem to help. Later I added fish oil. Of course, after I finally got my diet figured out, the knee and back problems faded away (but I continue to take the flax seed oil and glucosamine anyway, to help preserve my knee and hip joints against normal wear and tear). I don't intend to ever be a candidate for the surgery that so many people go through as they reach the "golden years".

The only time the lower back problems returned was when I was having a cross-contamination problem from gluten sneaking into my diet in trace amounts due to someone else in the house using wheat flour for their own food. It's impossible to prevent tiny particles of flour from drifting in the air and settling everywhere. You might want to reexamine the possibility of cross-contamination of your diet, because research shows that around 75–80 % of celiacs who continue to react despite being on a GF diet are actually reacting to gluten that sneaks into their diet.

I feel like I have all water Because there are no grains to "bulk" up the stool.

The watery D is not due to a lack of bulk in the diet, it's due to a type of D that's unique to the IBDs. It's called secretory diarrhea, and with secretory diarrhea, instead of the colon removing water and electrolytes from the fecal stream and recycling them, as it's designed to do, it actually infuses water and electrolytes into the fecal stream. When secretory diarrhea is active, it doesn't matter what one eats, the colon will continue to infuse water and electrolytes into the fecal stream until it runs out of available water. That's why dehydration is such a great risk with MC, and why we have to make a conscious effort to stay safely hydrated (and to replace the lost electrolytes).

Incidentally, I forgot to mention in my previous post that the small amount of sugar in the almond milk used in your coffee shouldn't be a problem. We're not actually sensitive to sugar, we just can't digest very much of it. I use a few sugar cubes in mine, and they don't seem to cause any problems. Most of us do seem to be sensitive to artificial sweeteners, however.

There are quite a few of us here (including myself) who were able to achieve remission without ever using an anti-inflammatory medication. The medications don't actually help with healing (in fact, the corticosteroids retard healing). They just help to suppress the miserable symptoms while the diet changes are allowing the gut to heal.

Tex

[Hopeful]

SCD worked kinda well for me but, then, I was on 9mg. of Entecort a day also. Finally figured out that even homemade goat milk yogurt was not my friend.

Silk and Blue diamond almond and coconut milks have ingredients that SCD doesn't recommend like carageenan, xanthum and guar gum. But i really gotta have some "white stuff" in my coffee and tea. Ideas??
SCD allows only honey in reasonable amounts. Is real maple syrup ok?

Has anyone found a good butter substitute? The fact that mine is homemade, organic, grass fed is apparently beside the point.

I guess I need to stay on Entecort while giving the special diet time to kick in and then slowly taper off. Sigh - impatient!

[tex]

The SCD is flawed, because most of us are sensitive to casein, and yogurt and cheese are loaded with it. Without the casein, the SCD becomes the paleo diet, which is a much better place to start when trying to configure a diet for MC.

Most of us here do just fine with Silk Almond milk, but coconut milk works OK also (if you overlook the carageenan, which will soon be removed, I believe).

Maple syrup was the only sweetener that I could tolerate when I was recovering, but the less sugar in our diet, the better we do, and the faster we recover, as a general rule.

Some of us can tolerate ghee (clarified butter), if it is carefully made, so that the casein is actually eliminated, but it's kind of like playing Russian roulette. Some batches are relatively pure — some not so much. Earth balance makes a supposedly safe margarine, but it causes problems for some of us.

The problem that most people have when beginning the recovery process, is trying to replace all the foods that they are accustomed to eating, with "safe" substitutes. That can't always be done, and it's an inefficient (and risky) way to go about it.

The key to a facilitated recovery is to start with a few simple, basic, bland foods, and go from there. The more complex we make our recovery diet, and the more foods we try to salvage (or substitute with so-called GF processed foods), the longer it will take to get to remission. The sooner we get to remission, the sooner we can begin to think about adding foods back into our diet, so it behooves us to make our diet as simple as possible, and worry about getting fancy lager, when we have the luxury of stable remission (and better health) in which to do it.

Tex

[kd025]

Most of us here do just fine with Silk Almond milk, but coconut milk works OK also (if you overlook the carageenan, which will soon be removed, I believe).

I like to use canned coconut milk in my coffee, so that's an option as well. Trader Joe's has a light coconut milk with no additives. Most other canned coconut milks will just have a little guar gum or something as a thickener.

Kristen