What an adventure!

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lighthouse
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What an adventure!

Post by lighthouse »

I tried to go gluten-free about 15 years ago and gave up after a few weeks. I didn't have enough information and the foods in the store sold as gluten-free were disgusting. I have stocked up on all of those alternative flours and other ingredients, but now I have to find the energy to make them. Three things might be making my energy so low, I am having an extremely difficult time getting up and going to work. Allergy season is horrible here and I am taking Allegra. Second is that I a may advancing to the point where I need an aortic valve replaced. Finally, I gave up coffee about a week ago because my reflux wasn't getting any better. This fatigue is making me more willing to try pre-made gluten-free items. I am trying to find a bread I like. One I bought is way to sweet. I bought another one today, so I'll give it a try later today. There is a group I have lunch with once a month and they have been going to the same restaurant for years. Every time I eat there I feel sick about 30 to 45 minutes after eating. I thought a vegetable omelet would be safe, and today I had a cesare salad. The times before that was when I was still eating gluten, so I figured that was why I felt badly and had the all to familiar race to the ladies room. I will take my own dressing the next time, but I don't know what was wrong with the omelet. I ate less than half of it also. Any input would be appreciated as always. Also, does anybody know how long it takes to get over the dragging feeling of not having coffee? Bernice and the sweet Octane.
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Gabes-Apg
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Post by Gabes-Apg »

Bernice
are you taking magnesium? good levels of magnesium are good for increasing energy levels.
the other key things for energy is B12, iron, CoQ10.

so far as eating out, there are multiple possibilities that could cause issues for MC'ers;
the vegetable omlette, what vegetables were in it? things like tomato, peppers etc can be an issue in the early stages of healing
and did it have any cheese (dairy) as this too is inflammatory

the ceaser salad, the lettuce would be quite fibrous and can be an irritant for MC'ers, aside from the dressing, ceaser salad also has cheese.

the other aspect to this, it may not be one ingredient causing issues, it could be a cumulative effect of the combo of ingredients (the vegetables, the lettuce, dairy, the dressing) also with eating out, there is a higher risk of contamination with Gluten and Soy.
Gabes Ryan

"Anything that contradicts experience and logic should be abandoned"
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lighthouse
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Location: Rochester NY

What an adventure!

Post by lighthouse »

Everybody is so upbeat on the list, I feel rather guilty for being discouraged. It seems like there just isn't enough time or energy to take all of the factors into account. My daughter suggested tyrosine to help with energy. It is true that I haven't been very conscientious about supplements lately. Well, I'll just have to start again tomorrow. I have a hard time taking so many pills. Do you have any idea about a timeline about the withdrawal from coffee? Thanks for your reply though. I have those supplements here and will fill my pill holder tonight.
Bernice and the sweet Octane. I'm WORKING on it!
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Gabes-Apg
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Post by Gabes-Apg »

I suspect that it is not the withdrawal from coffee that is causing you issues, moreso not being conscientious with the supplements.

if you are struggling with pills, if the budget allows, liquids or lingual versions of some of the supplements might be a better option for you.

most of all - in MC world, there is alot of mind over matter type thing. Life is 10% what happens to you, and 90% how you react to it!
we have to tweak our thoughts a bit and embrace this new routine, new eating plan, enjoy what we are doing as we know it is making life better...

sit in a favourite chair, play your favourite music while you take the pills. (mindfullness approach)
Gabes Ryan

"Anything that contradicts experience and logic should be abandoned"
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tex
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Post by tex »

Bernice,

The worst symptoms of caffeine withdrawal should only last about a week, but the time required for total resolution of withdrawal symptoms depends on the amount of caffeine that you were were accustomed to drinking each day. People who are used to drinking say 10 cups of coffee each day might still notice symptoms for up to 2 months or more. For most people who drink 2 or 3 cups per day, the effects should wear off after 2 or 3 weeks, I would think.

Regarding low energy, that's a very common symptom of this disease. All of us have low energy until our intestines heal. We simply cannot work as hard as we did before the disease developed because our immune system uses up most of our available energy trying to fight the inflammation and heal our digestive system. When I was trying to recover, many mornings when I dragged my carcass out of bed I felt as though I had been hit by a truck during the night. It was a miserable part of my life.

And as Gabes said, salads are definitely off limits for us until after we recover. Vegetables in general contain so much fiber that we simply cannot tolerate very much of them, even when they are over-cooked. When they are raw, we cannot tolerate them at all. When I was still recovering, lettuce was the worst food that I could possibly eat, other than gluten. And virtually all commercial dressings contain ingredients that we cannot tolerate. Most GF commercial bread also contains ingredients that most of us cannot tolerate. Most commercial GF products contain way too many ingredients to be safe for many of us.

Eating out without getting sick is extremely difficult to do, especially while we are still recovering. I wish I knew of a way to make recovery easier, but unfortunately I don't.

Tex
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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.
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Erica P-G
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Post by Erica P-G »

Hi Bernice,

Three things to focus on are VitD3, Magnesium and Diet. Maintain being Gluten, Dairy, Soy and Egg free and the VitD and Mag will catch up with the healing aspect.....Don't push yourself, realize this takes time and eat good amounts of protein each day (safe kinds are Turkey, Lamb, Cornish Hen, Wild Game, and maybe some chicken but I'd go easy with that one for a while). Once you feel some energy return, can think a bit better....then it will be time to take another step up and think about expanding the supplements to B's etc....Eat bland, eat often just safe foods, and get good rest when you can.

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Erica
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Dx LC April 2012 had symptoms since Aug 2007
hollyweb
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Post by hollyweb »

Dear Bernice,

This is a place where we can come and know that we will be heard and understood by the only people who can ... those who have MC. We all support and encourage each other, and I've been so amazed and grateful for all the advice and education so willingly and lovingly shared here. This is the place to share our hearts, fears, hopes and successes.

Chronic fatigue is definitely difficult to adjust to. You'll hear it mentioned over and over what a life-changing condition MC is. Everything changes. It seems like nothing is the same. We have to change what we eat, how we interact with doctors and actually everyone out in the world, we aren't able to do nearly what we used to do perhaps even a short while ago. When I'm honest with myself, I realize some of that low energy is a result of my own desire to still "fight" having MC ... Gabes is wonderful about expressing the whole concept of "how to live well with MC".

It can be helpful (IMO) to stay focused on what we have and can do, rather than continue to mourn what we no longer have and can't do. It is a new way of living ... with the potential to learn life lessons we otherwise never would learn, about what is important. An example (again, IMO), is that rather than be angry at my body with all its weird and scary symptoms ... I try to be grateful to my body. Just think what it is trying to do for us! It's trying to still function, to the very best it can, despite all these incredible new changes and challenges. The brain is part of the body; the body is doing its best to adjust too.

Learning to set newer, more realistic goals may provide a feeling of accomplishment. The fatigue, like MC, does not define us. It is something we are always learning to accept and deal with, and there are so many people here on the board with their experiences of what worked for them to draw from.

Wishing you much healing and progress,

~ Holly
2015 Hashimoto's, MTHFR
2016 LMC, Malabsorption
2017 Lymphocytic Dermatologic Vasculitis

"I strive to live in my heart, not in my head!"
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