Newbie questions

[tex]

Hi,

Welcome to our internet family. I'm sorry to hear that your life has been thrown in to a spin because of all these issues. It's good to see that you are so proactive, though, because that level of dedication is vital for effectively controlling health problems of this type.

It's possible that you may just need more healing time, because it takes much longer to heal intestinal damage than is commonly thought. Of course if the symptoms continue without any signs of improvement, there's a good chance that something in your diet is causing the problem. The bad news is that many of us here are also sensitive to oats. It's a weaker allergen than wheat gluten, but the avenin in oats causes many of us to react, including me.

Also, a surprisingly high percentage of us are sensitive to the primary protein in egg whites. I have no idea whether these items might be a problem for you, but they're something to consider. There's also a chance that you may not be sensitive to one or more of the foods that you've already removed from your diet, but after you're in remission, you can test those foods by trying them one at a time for a few days in a row, and if they don't cause symptoms, then they can be added back into your diet (I'm referring to MC here, not diabetes).

Most of us either cannot tolerate probiotics until after we are in remission, or they provide no noticeable benefits for us. So you might find that after you discontinue the probiotic, that may resolve your remaining symptoms. The same applies to metamucil. Most of us find that prebiotics are more likely to promote the growth of undesirable bacteria than they are to promote the propagation of beneficial gut bacteria.

We do not produce antibodies to fiber, but it is very abrasive to the mucosa of our intestines, and when our intestines are already inflamed, fiber can prevent them from healing. Fiber promotes increased gut motility, which is contraindicated for MC. Any bulking advantages tend to be negated by the irritation that fiber causes in our intestines. In addition, there is some question whether a significant amount of fiber is even desirable in anyone's diet, let alone the diet of someone who has an IBD. Please see the thread at the following link for more information on the fiber problem.

Apparently Dr. Eades Agrees With Me About Fiber

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



Tex

[Heady]

Is it best to ease off the Metamucil slowly or cold turkey. I have no problem chopping things out of my diet but I have to keep in mind to balance my blood sugar & exercise. I have not lost any weight thru my MC journey so far. My previous diabetic diet included taking a multivitamin,vit.D, omega3,cranberry, blueberry,cinnamon,glucosamine&chondroitine. I stopped taking everything as soon as the D started last Oct. I must admit that I have had a few moments of tears &fears that I will never be able to go back to being a busy productive dental assistant. Oh dear... One day at a time! Thanks to everyone who posts their experiences and gives me hope that I too can eventually get to some degree of normalcy.

[tex]

I agree that you need to give priority to blood sugar considerations, so there's certainly nothing wrong with tapering the dosage (rather than stopping it cold turkey), if that is safer, or makes management of your blood sugar levels easier. Tapering dosages is almost always the best way to go, because it can make any transition less likely to upset the apple cart. Sometimes our system is easily upset while we are still healing.

IBDs tend to deplete vitamin D, so most of us take a vitamin D supplement. Keeping our vitamin D level up well into the safe range also helps to ensure that we will be less likely to develop additional autoimmune type diseases. I continued to take glucosamine and chondroitin during my recovery, but at least one member here reported that it seemed to cause D for her.

Motivated people get results, so I'm confident that you will get your life back. You're definitely on the right track.

Tex

[Leah]

Hi Heady. Welcome to the forum.
You might get more replies if you had started a "new topic" rather then add to WWB's topic. Next time :)

Just so you know, I am a certified personal trainer/nutrition specialist, but mostly, I am someone who has had MC for over 2 years now and stay on this forum to help others. This is a great place for info with wonderful people.

I congratulate you on your diligence with your diet and exercise plan! From reading what you are eating and taking, I can see three things that COULD be your problem 1) Oatmeal. Even though you might be buying GF oatmeal, oat's protein looks very much like gluten and many of our systems "see" it as gluten. I am one who can't eat it. 2) Your probiotic. Many of us here who have trie probiotics have discovered that they either see no change or THEY MAKE THINGS WORSE. I am one of them. While we are healing, taking less "stuff" is best. 3) Metamucil. It is fiber. Fiber is hard on the intestines when they are inflamed. I know that many doctors will tell you to take it for "bulk", but it can make things worse. Some veggies can give us problems, but we are all different. Best to stick to carrots, squash, and maybe green beans for now… all well cooked. Sweet potatoes are a good addition.

The good news is that if you can heal your gut, then down the road, you may be able to add some of these things back in. I can eat small salads and raw veggies now. I can also eat some beans and spicy food. Yay! Healing takes time. Sometimes, a lot of time.

There is an actual Pepto protocol. I think it is 8 chewables a day for two months, but you can't stay on it forever. What one is suppose to do is wean slowly off of them as your diet helps you heal.

I'm sure someone else will chime in, but if you want more advice, start a
new topic"

Take Care
Leah

[Heady]

Thanks for the vote of confidence? I will taper off slowly over the next few weeks so as not to shock my GITract. Should I go back to taking the vit.D right away? My back to basics diet is paying off. No D yet today. Yahoooo! So happy I am going to go and treat myself to a haircut. Just proved to myself that there is always hope. It just may come in days to start! I make the best of every day I get without the big D. Thanks Tex for your help. It's good to have an experienced sounding board for us Newbies.

[WWWB]

Hello all. Well, after my little hissy fit a couple of days ago I am trying to come to terms with the fact that I have to be a big girl and deal with my diagnosis. It helps that the entocort is working! No D for 2 days! Unbelievable. Now I need to address diet. I am reading Tex's book and am off gluten, dairy and soy, which is very challenging for me. Funny thing, while going through the paperwork from my dr. I see she has recommended a FODMAP diet (even though she verbally told me not to avoid gluten at this time). FODMAP is a Fermentable Oligosaccharides, Disaccharides, Monosaccharides and Polypols diet which means no: wheat, rye, broccoli, cabbage, asparagus, mushrooms, cauliflower, artichokes, onions, peas, watermelon, peaches, apples, pears, mangos, cherries, prunes, dates papaya, plums, dairy (lactose), sorbitol & mannitol (sweetners), high fructose corn syrup, honey, beer. Has anyone heard of this diet??
P.S. I just found out that my first cousin has had the same diagnosis of collagenous colitis. What a coincidence. Or not. She recovered through diet (no gluten, dairy, soy, sugars, etc.) and Entocort and has been off meds and symptom free for 18 months.

[tex]

Heady,

Unless your 25(OH)D level has been checked recently, it might be a good idea to resume taking vitamin D again. However, be sure to check the ingredient list, because some brands contain soy oil. When testing for vitamin D, the 25(OH)D test is the correct one to use. Some doctors order a different test (1,25-dihydroxy-vitamin D), but that test is worse than worthless, because a vitamin D deficiency typically causes the 1,25-dihydroxy-vitamin D test result to be high, and the doctors who use that test are unaware of that problem.


WWWB,

FWIW, some people who have MC have reported good results on the FODMAP diet. Others swear by the paleo diet (minimizing fiber until after remission is achieved). Most of us just work out our own custom diet, based on our own individual food sensitivities (with help from EnteroLab), because we are all different, so there is no such thing as a one-size-fits-all diet for treating MC.

Lucky you. That was a fast response to Entocort. Remember that the key to maintaining remission after you wean off the Entocort is to reduce the dosage very, very slowly as you get down to the 1 capsule per day and less, dosages. The longer we draw out that final tapering process, the less likely we are to relapse.

A slower tapering process also provides more time for any food sensitivities remaining in the diet to show up, and it allows us more time to track them down, while we still have a slight amount of symptom suppression from the budesonide.

You and your cousin may have similar genetics.

Tex

[Leah]

I have to say WWWB, you made me chuckle. All of us who recover have to go through the stages of denial and then acceptance. I didn't drop gluten until a month went by on Entocort. I didn't drop soy until I was down to 1 pill and noticed a reaction.

Entocort also worked extremely fast for me. Isn't it great? When you start to get a little constipated, it's time to step down the dose. It took about a month for me to go down to 2 pills. I stayed at that level for about 2 months. Then I went down to 1 pill for another two months. The last month was spent slowly titrating off of it.

Yes, the FODMAP diet works for some. (It helped my cousin figure out her gas problems)… especially those who suffer from a lot of gas. As Tex has said, we are all a bit different. It's a good idea to stay away from those foods for now. it gives your gut the best chance of healing. Down the road, you can test them. one at a time, back in. I have to say though, that I never took onions and garlic out. They just make everything taste so much better :) I also never took honey out because that is what I put in my herbal tea. Especailly since I to give up coffee and black tea. When it comes to sugars, it seems that QUANTITY matters. No fruits in any quantity for me. :(

I'm glad you are seeing results. Keep up the good work
Keep us posted
leah