Feeling discouraged

Personal experiences with diet as a means of controling the symptoms of Microscopic Colitis and related issues, should be posted here.

Moderators: Rosie, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh

Post Reply
prunella59
Posts: 9
Joined: Fri Jan 29, 2021 6:33 am

Feeling discouraged

Post by prunella59 »

I really want this diet to work, but it's been almost a week, and my D is as bad as ever. Less bloat, unwelcomed weight loss, feeling as though there is nothing I can eat...
Is there a good cookbook that is gluten-dairy-soy-egg free?
I have had LC for nine long years. The only med that worked was budesonide, but my GI said long-term use affects the adrenal gland, so I can't take it. All other meds fail.
I am willing to keep at it with the diet, but today I feel exhausted, discourage and overwhelmed by it all.
User avatar
tex
Site Admin
Site Admin
Posts: 35067
Joined: Tue May 24, 2005 9:00 am
Location: Central Texas

Re: Feeling discouraged

Post by tex »

Hello Prunella,

I hear you. This is difficult, frustrating, cruel disease. But we didn't acquire MC in a week, and we can't get it under control in a week. Most people have to stick carefully to the diet for several months, at least, although they sometimes can see significant improvements in their overall condition sooner than that. It took me a year-and-a-half, over 15 years ago, because I had no one to advise me on how to go about it. Now we know what to do, but it's not an instant cure — it takes time to bring the disease under control, especially for someone who has been reacting for as long as you have.

Like the the old parable about the tortoise and the hare, patience and perseverance wins the race. For most of us, it took years to accrue enough intestinal damage to trigger the disease. And the intestines heal just as slowly — it takes 2–5 years for the intestines to completely heal (for adults), although kids can heal in less than a year. Fortunately, we can reach remission of symptoms much faster than that, but remember that until healing is complete, remission is fragile.

After nine years of accumulating intestinal damage, did you really expect the diet to be capable of bringing you remission in a week? You're on the right track, as long as you keep your diet safe, simple, and cook everything you eat from scratch. No processed foods, and no eating out. Minimize fiber and sugar. Don't be discouraged by little bumps in the road to recovery. We all have occasional setbacks during our recovery program. Keep a positive, optimistic attitude, and you will heal much faster than if you allow a negative attitude to take over. This has been proven by medical research. Adopt one or more stress-relief habits/routines. High stress levels can absolutely prevent us from recovering, and chronic stress can cause us to relapse.

But above all, your diet has to be safe, or it can't work properly. If you're not absolutely sure about the safety of everything in your diet (including medications and supplements — anything you put in your mouth), please ask.

Best of luck to you, as you travel your recovery journey.

I hope this helps.

Tex
:cowboy:

It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
prunella59
Posts: 9
Joined: Fri Jan 29, 2021 6:33 am

Re: Feeling discouraged

Post by prunella59 »

Thank you Tex. Your reply is considered, considerate, and very useful. I'm grateful. I'm feeling more positive now, and realized part of the problem was I hadn't had my usual one cup of coffee because I can't use half and half, and the two nondairy creamers I tried tasted awful. I drank it black and felt better.
Today I made bone broth, and ham hock broth, and will make bread and cake tomorrow, all from scratch with gluten, dairy, soy and egg free recipes.
Is it OK, safe, to eat these?
Avocado
Melon of any kind
Jasmine rice
Prego spaghetti sauce
Almond milk
Chocolate almond milk
Rice milk
Instant oatmeal
Home made oatmeal from quick oats
Thanks,
Pru
User avatar
tex
Site Admin
Site Admin
Posts: 35067
Joined: Tue May 24, 2005 9:00 am
Location: Central Texas

Re: Feeling discouraged

Post by tex »

Another problem with some of the "Non-Dairy" creamers is that while they're lactose-free, they contain a casein derivative, so most of us react to them. I use a couple of sugar cubes in my coffee. While home-made bread and cake are generally safe for us when we're in remission, as long as the ingredients are safe, many of us can't tolerate them while we're still recovering. Our intestines need to heal for a while. It appears that while the individual ingredients might be safe for us. all of them combined in a recipe are not. I had to avoid all baked goods until I had healed for a while.

From your list:
Avocado
Melon of any kind
Jasmine rice
Prego spaghetti sauce
Almond milk
Chocolate almond milk
Rice milk
Instant oatmeal
Home made oatmeal from quick oats
Avocado is fine for most of us.

Most of us react to melons, especially watermellons. The contain something that causes almost all of us to react. A few of us can tolerate them after we've healed for a while, but many of us continue to have problems with them.

Jasmine rice is excellent for most of us, It's easier to digest than many other varieties of rice, and very few of us react to rice.

Prego spaghetti sauce is usually OK after we've healed for a while, but while we're recovering, most of us react to the citric acid in all citrus fruits, including tomatoes.

Almond milk works fine for most of us.

I would steer clear of chocolate anything until after I was in remission. Like some others, I couldn't tolerate it while I was recovering. I still can't tolerate it because chocolate is a high-histamine food. Most other members here can handle it just fine — especially after they're in remission.

Technically, rice milk should be safe for most people, because it doesn't exceed the 20 parts per million limit for legal GF labeling in the U. S. However, it does contain tiny amounts of gluten, because it's fermentation process is started with barley malt. Therefore, it's safer to use after we're in remission. I stick with almond milk.

Some oatmeal is contaminated with gluten, but even when it's certified pure, most of us react to oats. It usually takes longer to react, because the avenin in oats (which is the equivalent of gluten in wheat) is a weaker prolamin protein, but I react to pure oats almost as severely as I react to gluten.

Most of us recover much faster if we concentrate on a few, simple, safe foods — the simpler our diet the better. Variety and deserts, sauces, seasonings, spices, etc, are best avoided until after we're in remission and have healed for a while. Our suggested diets may sound restrictive and dull (and they are), but your body will thank you for keeping your recovery diet simple and bland,so that you could recover faster. Remember, to control this disease, we can't afford to live to eat — until we get to remission and heal for a while, we have to eat to live. Our food is our medicine — our only medicine.

Tex
:cowboy:

It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
prunella59
Posts: 9
Joined: Fri Jan 29, 2021 6:33 am

Re: Feeling discouraged

Post by prunella59 »

Many, many thanks!
prunella59
Posts: 9
Joined: Fri Jan 29, 2021 6:33 am

Re: Feeling discouraged

Post by prunella59 »

What a difference a week makes! Feeling much better already and keeping food choices simple and safe. I'm so happy to see a change for the better, it makes the food limitations worth it! I'll stay with phase 1 for as long as I need. Better energy, quiet stomach, better sleep, giving my body good things, like homemade bone broth, magnesium supplements for a while now, and feeling the healing in my gut. Wow.
User avatar
tex
Site Admin
Site Admin
Posts: 35067
Joined: Tue May 24, 2005 9:00 am
Location: Central Texas

Re: Feeling discouraged

Post by tex »

Thanks for posting that update. It's nice to see that you're doing much better. I agree — seeing some improvement definitely helps to lift the spirits.

I hope your improvement continues. But please don't be discouraged if you have a setback now and then — that happens to almost all of us.

Tex
:cowboy:

It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
prunella59
Posts: 9
Joined: Fri Jan 29, 2021 6:33 am

Re: Feeling discouraged

Post by prunella59 »

Tex, thank you for all your support. You're a peach!
brandy
King Penguin
King Penguin
Posts: 2909
Joined: Sun Oct 16, 2011 9:54 am
Location: Florida

Re: Feeling discouraged

Post by brandy »

Hi Prunella,

Generally tomato products can be tough early on. As we heal we better tolerate them.

As a general rule for the almond milks, tomato sauces and even tylenol I try to buy the product
with the least amount of chemical sounding names in the ingredients.

Current ingredient list pasta sauce I am using is: tomatoes, tomatoe puree, citric acid, roasted garlic, garlic, ex olive oil, sea salt, and spices. This one also carries the GF label.

Glad you are doing better. Getting and staying in remission with this disease is a marathon not a sprint.
prunella59
Posts: 9
Joined: Fri Jan 29, 2021 6:33 am

Re: Feeling discouraged

Post by prunella59 »

Thanks for the tips. I'm staying away from tomato sauce for now.
It's kind of a one step forward and 2 steps back process. My D is still there, but much less frequent, 2 to 3 times a day instead of 6+ times. My belly is pain free and no bloat. All good things.
I'm trying chicken to see if I can expand from turkey and fish only. I'm trying brown rice pasta with ok results, and last night a chick pea pasta with not so great results.
Banana, well cooked green beans, sweet potato....
What else is ok right now in phase 1?
User avatar
tex
Site Admin
Site Admin
Posts: 35067
Joined: Tue May 24, 2005 9:00 am
Location: Central Texas

Re: Feeling discouraged

Post by tex »

Peeled squash carrots or cauliflower are usually safe for most of us. Some like rutabagas, although I've never tried them.

Tex
:cowboy:

It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
brandy
King Penguin
King Penguin
Posts: 2909
Joined: Sun Oct 16, 2011 9:54 am
Location: Florida

Re: Feeling discouraged

Post by brandy »

Prunella it takes time.

I eat gluten, dairy, soy and egg free.

As you heal you can eat more foods. I'm able to eat a small salad with dinner each night. It was probably
30 months before I could tolerate "raw".

After you heal a lot more food options open up. I can eat all forms of tomato products now but it was probably
about 24 - 30 months before I could tolerate tomato.

I like the jovial GF pasta. Ingredient is rice and water. The problem with chick pea pasta is the fiber.

For now stick with your very safe foods. Eat them day after day, week after week and month after month.
Embrace the simplicity. Before you know it you will be able to tolerate additional options.
AGM
Adélie Penguin
Adélie Penguin
Posts: 95
Joined: Tue Oct 06, 2020 11:37 pm
Location: Australia

Re: Feeling discouraged

Post by AGM »

And the intestines heal just as slowly — it takes 2–5 years for the intestines to completely heal (for adults), although kids can heal in less than a year. Fortunately, we can reach remission of symptoms much faster than that, but remember that until healing is complete, remission is fragile.
Tex, reading that last sentence was a bit of an aha moment for me, I'd become complacent in my remission and I'm now back where I was 5mths ago!! How does one know, short of another biopsy, when healing is "complete"?
User avatar
tex
Site Admin
Site Admin
Posts: 35067
Joined: Tue May 24, 2005 9:00 am
Location: Central Texas

Re: Feeling discouraged

Post by tex »

As Brandy pointed out in her post, you have to give it time. There aren't any shortcuts as far as healing is concerned.

Tex
:cowboy:

It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
Post Reply

Return to “Personal Experiences with Diet”