Attn newbies or anyone struggling....

[Mjg]

Erica I’m only 3 months in with this condition so no I haven’t been healing long. So I guess the constant rumbling and burbling is normal then? And the gas and flatulence? I’m following phase 1 of Tex’s diet recommendations. I’m taking the Budesonide and hoping I don’t start having some of the horrible side effects I’ve read people have! Thanks for your response I’m trying to be patient but it’s very overwhelming
Mary

[julieh2195]

I'm back with an update. I quit all gluten free bread and am doing much better. Have some gas but not near as bad as before. Been eating white rice made with bone broth, venison, turkey, chicken and over cooked carrots, rice milk and rice chex. I'm starting to "crave what I eat!" I feel like I am finally making some progress, slowly but surley. Patience, patience, patience!!
One more question, do you recommend a certain sugar to sprinkle on my cereal. Been using the pure Turbinado cane sugar or just our plain white sugar.
Thank you for this website and everyone's help.
Julie

[tex]

Small to moderate amounts of ordinary table sugar (which is cane sugar) should be OK. I've never tried turbinado, but it might be OK, also.

I use vanilla flavor almond milk (which is sweetened) on Chex cereal, and I prefer it without any sugar. It's sweet enough as it is, with the vanilla almond milk.

Tex

[Gabes-Apg]

One more question, do you recommend a certain sugar to sprinkle on my cereal. Been using the pure Turbinado cane sugar or just our plain white sugar.

i tend to use items that have least amount of production/refining . coconut sugar is good.

[Keanna S]

Hello!

Reading through the posts on this board... wondering why most of us with MC are intolerant to oats. I believe that they do not naturally contain gluten, is it because they may come in contact with gluten-containing grains? Or is there another reason why oats are problematic?

Thanks!

Keanna

[Gabes-Apg]

All foods have components / proteins in them
food sensitivities and inflammation is where the body is reacting to those components and proteins.

with grains, well actually all foods grown as a crop, there is an element that you are reacting to chemicals used during the growing process.
(another reason that i encourage to avoid processed foods in the early stages of healing)

as you do reading here, you will see that one persons poison is another persons staple.
there is no fixed list of triggers or safe foods - everyone is different. that is why life with MC can appear hard
but once you figure out your safe foods, it is not hard.

I react worse to soy than gluten.
( of note: since healing I can eat organic grown wheat, that is ground to traditional methods and baked to traditional methods with no reaction)

[Keanna S]

That makes sense! Thank you for your quick response!

Keanna

[CSR]

HI,
My name is Cheryl and this is my first post. I have been suffering from MCC for several years, but the last 15 months have been horrible. I will have 3 months of diarrhea and then maybe a month of normal stools. Recently, after reading Tex' book and consulting with my regular doctor, I stopped taking my probiotic VSL#3 which I have been taking for several years. The colitis gradually slowed down and stopped. I was cautiously ecstatic praying I had at last found the trigger. Wrong. About a month later is has returned. I have been on different diets (AIP, Low Fodmap and various forms of both) tried eliminating various foods. I was diagnosed with Gluten intolerance and Dairy and Egg sensitivity over three years. I have stayed totally away from gluten and up until a little over 2 moths ago I have been mostly dairy and egg free except for occasional GF bread which has egg and or dairy in the ingredients, which I have not been able to find GF bread recipe without them. I have tried stopping supplements. All this with no real results. I have stopped eating vegetables except for potatoes and zucchini (both peeled of course). I have been able to make smoothies in my Vitamix with greens and fruit and handled that so far. My doctors said that was great because most of the fiber would digest in the stomach and not in the colon. Hopefully I can continue this. I am working with my General Doctor, a Gastroenterologist, and a Chiropractic Neurologist (CN) trying to be careful not to "cross the streams" (this will mean more if you saw the original Ghost Busters movie.) For the most part the two doctors are open to outside the box ideas. My latest attempt has been just a few days ago trying Colestipol which is suppose to help with absorbing water. So far no luck, but the GI has had me increase the dosage so we will see. My CN has run some tests, one checking for leaky gut, which I do not have. Another a GI map test which was a stool test, but not really sure what help it was, and he has ordered an extensive Food Test that test foods in various forms. It is a blood test, and yes I know those are not as reliable, but he really felt it would be beneficial. Frankly I am tired of tests. Even my GI said you can test for everything but the question remains what do you do with that information. I am a high stress person anyway and now it is off the roof. I am trying so hard to stay calm, trust the Lord with this, but am loosing ground fast, especially after this last relapse. We have vacation plans in the fall and I see no way I can do that. I feel so very sorry for my husband. This disease turns your loved ones lives upside down too. I have been trying to read articles on your website. There is so much information I am overwhelmed and do not know where to start. Can you help me regroup, start over, point me to the articles that are most helpful at this stage? I apologize for the long post, but I just am lost and feeling hopeless. I appreciate you reading this and any help you can give me. Thank you so very much.

[Erica P-G]

HI Cheryl,
Just want to welcome you here :-)
I've learned that stress has been my number 1 enemy when it comes to LC. When that triggers my LC I find it takes me a while to get dialed back in again.

I have to lessen or stop all sugars, minimal fiber to none, and go back to the bland minimal ingredient meals (which I hate because face it they are BLAND). Only sea salt, proteins, white rice, yellow potato, and perhaps green bean or corn is the only thing that will help me settle.

Like you I am wondering if my bread that is safe in all aspects except for egg may be one of my reasons for not getting complete relief at this time as well. I also noticed that once the Summer heat has started moving in and I get out in it or do to much and get hot my body doesn't particularly like it either.

Don't stress the vacation just yet....unless there wont be a bathroom, then that might have to be a deal breaker for even myself!

I had been going along pretty good during 2020 and this year since about April it's like I haven't healed at all So I have been experimenting with a couple things and have found that after 8 weeks Budesonide doesn't really touch what I have going on and it gave me the worse headaches ever....so I am weaning off and have just introduced LDN (Low Dose Naltrexone) .5mg and will slowly increase that over the next few days to 1.0mg I understand this process can take a while to dial in as well so I don't have much to report on it just yet, except a few people who just can't get their MC/LC/CC to plateau have had good results from this.

One last thought for your situation would be to give a hard look over everything you eat or drink and could it possibly get gluten, dairy, egg or soy (or too much sugars) within it. You'd know within a week if it was any of the other proteins because they leave the body within that time frame that were contributing to your symptoms, except for gluten,. The gluten is a pain because it takes a while to actually leave the body (I'm sure that one could be my biggest nemesis besides stress). We can't live in a bubble....but at the same time it sure would be nice if our immune system would just stop reacting to every little thing just because it sees it as a threat.

Keep asking questions....it really does help to get on a different path to healing.
Cheers
Erica

[CSR]

Erica,
Thank you so VERY much for your quick reply. I do so appreciate it. I must admit sugar is one I have not completely eliminated. I will start doing that right away. How does that work with fruits which have sugar although a different form? I often put them into my smoothie, and occasionally have a banana in my coconut yogurt. I am hoping I can still do that. I tried the Budesonide once and it worked, but the second time it did not and my GI said he did not want to use it again because it most likely would not work. I so want to find the trigger so I do not have to take medication. That said, however, I need to be able to do things like a vacation, or be gone all day even, and that is often not an option. Even with a bathroom in the building, it seems as if it is so very far away. I often have barely anytime from the moment I need to go before I actually do. That of course makes the stress all the more intense. It is like a catch 22! I have thought about an antianxiety medication, however, my GI told me many of them actually make the colitis worse :(.
Perhaps I need to go back to the basic bland diet and start again. I hate that too, but need an answer.
I read another post about the LDN. I need to read up on it as I am not familiar with it. I would love to hear how it works out for you. I will be praying that it gets things calmed back down.
Again, thanks for your quick and helpful response. Maybe sugar is my problem. I don't eat a lot, but I do have some (I am so going to miss my evening GF Oreo!) Do you about how long it takes to get the sugar out of your system?
I know I will have more questions, so I appreciate your invite to keep asking questions.
Have a great evening and thanks again.
Cheryl

[Gabes-Apg]

Cheryl
welcome - and sympathies that you had to find us

from your post the following stood out to me

I have been able to make smoothies in my Vitamix with greens and fruit and handled that so far. My doctors said that was great because most of the fiber would digest in the stomach and not in the colon. Hopefully I can continue this.


fiber is a big issue for MCérs especially in early stages of healing
in early stages of healing hardly anyone would be able to tolerate greens and fruit as a smoothie
regardless of where the fiber is - it is a trigger for MCérs


the other aspect we have observed is that in the early stages of healing, having meals with minimal ingredients work best and having good sources of protein at every meal. are you doing this?

[Erica P-G]

Hi Cheryl,

In addition to Gabes reply....sugar doesn't take long to leave the body, within 2 days I can tell if sugar has been my culprit by not eating or drinking any of it. Yes fruits are full of sugar, some less than others, it's the natural kind but still fructose sugar and that along with fiber is a recipe for disaster.

Don't worry right now feeling you wont get proper vitamin and minerals if you don't drink those smoothies. Bring yourself back to basic foods made from scratch and if you can put a batch of those ingredients together and freeze them that helps with the immediate hunger and the stress of what to cook when you are starving and it turns into a Low Histamine meal. That is another area that doesn't get discussed as much as it should....histamine in the gut can be another problem that wont let bathroom trips return to a better normal. I had this problem early this Spring and Tex suggested HistaResist and it actually does wonders on the histamine instead of taking antihistamines all the time (which they weren't working as well as I hoped because I was taking them pretty heavily earlier this year). I only had to take them enough evenings to get the mucus, watery eyes etc...to calm down and I haven't had to take them in quite a few days now.

Anyway....you're sure welcome....I hope you get many helpful responses because there is so much to consider it can feel overwhelming. This MC gets the best of all of us, as we are all different and this disease affects us at all different levels. What we try to suggest is the most basic level because that seems to lay a foundation that we all can return to again. Sometimes we forget what we did because we go along and are doing pretty good and then we have to rethink what worked, and sometimes we have to change what we did and that is just a part of this MC journey.

Try not to stress over this too much....progress not perfection is a good motto for what we are all going thru
Take care,
Erica

[tex]

Hi Cheryl,

Welcome to the group. I see you've already received a lot of good advice. To add a little information about fruit: fruit is not only loaded with fiber, but most types of fruit contain relatively high levels of hard-to-digest forms of sugar. The man form of sugar in fruit is fructose, which has to be digested by the liver, unlike ordinary sugars, which are digested by the digestive system, like most foods. Fruit also contains various sugar alcohols, that are totally indigestible by the human digestive system. Certain overcooked vegetables are usually much better choices of carbs for MC patients, compared with fruit, while they're trying to recover from a flare.

Speaking of sugar, I never had to totally avoid it when I was recovering, but I definitely had to minimize it. I found that the only sugar I could tolerate in larger mounts, was maple sugar. I have no idea if that was just a personal quirk, or if it might apply to someone else. At any rate I was able to eat maple syrup and maple sugar in normal quantities. Definitely avoid artificial sweeteners because almost all of us react to them, especially aspartame. That said, some of us can use sweeteners made from the Stevia plant without any problems.

When you need to go somewhere for several hours, or more, have you tried Imodium? Most of us find that Imodium can be a big help, when we're having a flare. It can also give us the confidence we need, to be able to go out. You might have to experiment with the dose, in order to get good control, because too little may not give satisfactory control, and too much can cause constipation. It's safe to take up to 8 mg (eight tablets) per day, if you need that much. It won't stop the diarrhea, but it will help to postpone it, so that most people can safely go out for a while.

I hope this helps.

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

Tex

[CSR]

Gabe, Erica, and Tex,
Wow! Thank you all for replying and for your helpful advise. I cannot tell you how much it means to "talk" to someone who understands what I am going through! It is so hard to explain to someone who has not been through it, plus it is not a very appealing topic! To respond to each of you:

Gabes, thanks so much for the advice about the smoothies. It was disheartening, but I certainly do not want to be doing something that will aggravate this colitis. I was hoping the food being absorbed primarily in the stomach would work, but I see that is incorrect, at least during a flare. I am having a hard time keeping my weight up and was hoping that would help. As far as the protein, I put integral collagen in my coffee each morning. I also try and eat some sort of meat, usually turkey or chicken, with most meals. I do occasionally have bacon, salmon, and hamburger, and have tried Kalebassie and Bratwurst before. I am hoping they are all OK. Please tell me if they are not, or if you have any other suggestions. I do not use any other seasonings except for sea salt and pepper. Thanks for checking with me on that.

Erica, thanks for the information about the Histamine. Can you expand a little on that? I do frequently have a runny nose, usually one side and often have pressure around the nose with headaches. My eyes stay very dry and often run in the early morning hours. I have this year round and my doctor keeps insisting it is allergies although I have been tested and nothing comes up. I am just wondering if this could be a sign of Histamine in the gut? I have stopped the sugar, so we will see if anything changes over the next few days. Thanks so much.

Tex, I first want to thank you so VERY much for your book which I have almost finished. It is so very helpful. I cannot imagine the number of hours you sacrificed in research and getting all the information together to write that. It truly is a gift to me and I am sure many, many other fellow sufferers. Helping me understand this demon better and also helping me as I talk to my doctors to better inform them and to know that what they are suggesting may not a good thing. I have been blessed with doctors who truly want to help, and are willing to "thing outside the box" with me. They admit when they cannot help and encourage me to look into holistic options, and even want me to report back to them with what I learn. I am seriously thinking of getting a copy for my GP and GI doctors. Thanks for the information about the sugar in fruit. Guess I will definitely be eliminating that for awhile. I also appreciate your advice about the Imodium. I have not had good luck with it, but I usually only take two at a time, following up with one if the first two don't work within about 30 minutes. I did not realize I could take more than that. I have used Lomotil with some success, but I cannot count on it. When it works it usually shuts things down for a good day and sometimes more. I only resort to it when I will be gone for the day. Used frequently, it messes with my head and I feel lousy. I will give Imodium another try and maybe move up to three or four at a time.

Right now I guess my main question for all of you is how do I know when I have found the trigger? I know that sounds like a dumb question, but I have been working with food for well over a year and still have not figured it out. I have started once again on a very bland diet as suggested - yellow potatoes, white rice, and protein ( I usually get mine primarily from meat). Am I looking at staying on this diet for weeks, months, how long before I should notice a difference? I don't want to introduce something too soon, but I don't want to live on this food for ever. I have had so much white rice I almost gag when eating it now. I saw that there is a Dee's kitchen mentioned on some of the posts. Is she a good resource for me at this time?
Also, I do feel hungry frequently. Perhaps it is more just not satisfied with what I am eating. Is there any safe food I could snack on. I love nuts, but guessing that is going to be a no. I have resorted to dry Rice Chex cereal, is that OK? Is there anything else?
Sorry for the long post again. I just have so very many questions and no one else to turn to. Thank you all so very, very, much!! Cheryl

[tex]

The inflammation that causes this disease also inflames our small intestine. That eventually compromises the production of most digestive enzymes. The first to go is lactase, which is why we promptly become lactose intolerant, and that's soon followed by other enzymes. That means that when we're trying to digest a relatively large meal, we can't produce certain enzymes fast enough to keep up with digestion, and when we run out of a particular enzyme, The rest of our meal may remain undigested, or partially digested. Because of that, most of us do better if we eat more frequent, smaller meals, rather than three normal-size meals. And those mini-meals may all look alike, or very similar.

If we're in a flare, it's almost impossible to test new foods, because we have no way to tell whether we.re reacting to them, or something else that we are already eating. You have to be in remission, to be able to accurately detect food sensitivities. The only accurate way to detect food sensitivities when in a flare, is to order the stool tests from EnteroLab.

Theoretically, it's relatively easy to detect a food sensitivity by removing that food from your diet for a few days. If that food was the problem, you'll stop reacting. The problem is, if you're also reacting to something else in your diet, then it will dominate your reaction, so that any improvement by removing the other food will probably be overlooked. In other words, we have to avoid every one of our sensitivities before we will stop reacting. As long as there's one food, or one ingredient, or one medication, one supplement, or one whatever, that doesn't agree with us, still in our diet, we will continue to react.

On the average, it takes most of us from 2 to 6 months, using the elimination diet, in order to reach remission. But because we all have different situations, that period of time can range from a few days, to a year or more, for some of us.

You're fortunate to have such open minded doctors. Most of us have not been that lucky.

Dee is a professional chef, who has MC. Her recipes are safe, and very tasty. Unfortunately, she had to stop posting a number of years ago because of family obligations that required her undivided attention. Her recipes are gluten-free, soy free, and dairy free. In some, she uses eggs, but she has a post listing egg substitutes, for those are sensitive to chicken eggs. Recipes listed by others in that section, may or may not be entirely safe. Be sure to consider their ingredients if you use those recipes.

Tex