Accepting all suggestions. re no energy :( anyone out there?

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Camie
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Accepting all suggestions. re no energy :( anyone out there?

Post by Camie »

I am doing everything I can or at least I think so. I am almost gluten free. I hardly eat anything I am cooking vats of bone broth Starting juicing things. Doing all the things others advise plus being on endocort.............What else can I do to feel better?
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Post by jmayk8 »

what do you mean by 'almost gluten' free?
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MaggieRedwings
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Post by MaggieRedwings »

You can't be almost gluten free - you have to go the whole 9 yards. It will give you back energy and less brain fog if any at all.

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Post by tlras »

I've been Gluten free since July 1 and I didn't get my energy back till I got my D under control (with Pepto). Going GF did not stop my D completely....just got rid of my pain and nausea and a few less trips to the bathroom. Hopefully the Entocort will kick in soon and you'll get your energy back. Since you are eating a lot of bone broth, you could be experiencing some die off of pathogens in your body. This is a good thing. If you have aches and pains, try soaking in Epson salts. Are you still having D even on Entocort? If so, I'd just do broth and no juicing. SCD Lifestyle recommends 5 days on bone broth if you have D. If you aren't having D, I would try a very ripe banana and see how that goes.

IMO, you will not gain back much energy until you go 100% Gluten-free and you are able to add more foods to your diet. What you are feeling is normal and it will pass. Hang in there. If you are not sure about what contains gluten, please feel free to ask. Just curious, what are you eating now that contains gluten?

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Diagnosed with Lymphocytic Colitis in July, 2012 then with Celiac in November, 2012.
Camie
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Post by Camie »

I should clarify almost gluten free. I have eliminated gluten but I have had some failings. Fell off the gluten free wagon last week and had chicken noddle soup then the next day a slice of pizza.
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tex
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Post by tex »

Camie,

When we "fall off the wagon" early on in our recovery, that can push us back almost to square one. After we have been in remission for a while, and our intestines have accomplished some significant healing time (6 months to a year or more), then a diet slip will often only result in a reaction that lasts for a day or two (or more, depending on how much healing has occurred).

The amount of gluten in a bowl of noodle soup, or a slice of pizza, is relatively massive, and that can do a significant amount of damage. Remember, even when we are careful, we may occasionally ingest trace amounts of gluten due to cross-contamination, and those tiny amounts can be sufficient to cause a reaction, but usually not a huge setback. The point is, we really can't afford any intentional setbacks, on top of the accidental ones. Please stock your pantry with some safe "emergency" foods, or snacks, so that you will have less temptation to cave in to temptation. When we're hungry, our judgment is easily compromised, and we tend to make mistakes that we wouldn't make on a full stomach. :wink:

Hang in there. It's not that unusual to get off to a rocky start with the diet. It gets easier as we begin to feel better, and we become more motivated as we begin to realize how truly important it is to not let gluten rob us of our energy and so many of the things that we want to be able to do.

:grouphug:

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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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Post by cjbndtsn »

Camie,
I hear and feel your pain but you really need to heal yourself and stick with it. There are plenty of good GF foods including pasta, so you can make your own chicken and noodle soup. It's much better soup anyway. Pizza......if I have the urge for pizza......I found Udi's GF 3 cheese pizza and then I add my own other veggie toppings and sometimes a little bacon. It's delicious!!!! Do it for yourself so you can soon feel better and regain your energy. I am completely anal about anything I eat now to make sure I comply to the GF and I am feeling ssssoooo much better. Holler at us whenever you feel the urge to cheat and we will all holler back at you..... :smile:
Cathy
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Post by JFR »

Camie,

I think of the foods that I can't eat as poisons. I have not eaten gluten, dairy, soy, eggs, beef, chicken or rice, to name a few, for about 6 months and the thought of eating them is similar to how I would think if someone suggested I eat arsenic. I truly believe that these foods are bad for me and I associate them with a life consisting of mostly running back and forth to the bathroom. Along with the knowledge I have gained on this site I believe working on my attitude, so that I feel not only not deprived but even lucky to have found a way to regain my healthy, to have been essential. I still have a ways to go but life is certainly better than it was 6 months ago.

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Post by Leah »

We all feel your pain. And we all had our own way of dealing with having to give up foods we love.
I thought of the time I was on Entocort as my "healing time". And the foods that felt good in me was my medicine. I kept telling myself that down the road, I will be able to add things back in ( and I have!). BUT THIS TOOK TIME. As many have said here, you won't feel your energy come back until you get the D under control and start absorbing some nutrients. And make sure you stay hydrated.
I had to give up many foods during my Entocort healing time ( G, D,S, potatoes, tomatoes and it's products, peppers, salad, raw fruit, canola/veg. oils.....etc.). It wasn't easy, but if you keep eating things that either inflame or irritate your gut, the Entocort will only a band-aid.
Be patient. And vigilant. And we are here for you :)

Leah
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Post by MaggieRedwings »

HI Camie,

If you really want GF chicken noodle soup try find Gluten Free Cafe. They make 3 or 4 soups that are certified gluten free. Also, there are a number of "good pizzas" out there that are GF and I highly recommend Against the Grain.

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Post by mzh »

To address the no energy issue - if you're not eating solid food I would think that would add to your lack of energy. You sound like you're between a rock and a hard place - weak but can't eat solid food. Hope you can soon.
Also have sleep apnea
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Post by fatbuster205 »

Leah wrote: It wasn't easy, but if you keep eating things that either inflame or irritate your gut, the Entocort will only a band-aid.
Oh crap!!!
I feel your pain and understand how hard it is!
Take care!
Anne
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Post by Camie »

Thanks again for the wonderful support and input. I am back on the Gluten free wagon. I am getting some solid foods in me but not with gusto. Eating is a chore these days. Stocked up on more gluten free items. Onward I go!
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Post by Zizzle »

Camie,
I don't know if others would agree, but I feel noticeably more energetic when I remember to take my Vitamin D3 supplements. It was unexpected, but I do notice a difference, especially if I forget a few days, then take 15,000 IU all at once. I try to take 5,000 IU per day now. I had terribly low levels when I was diagnosed (17), and low D is common in MC, so please make sure your doc has tested your D levels.
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Post by mzh »

The low vitamin D is a good point. I was taking 50,000 IU of D2 (not to be confused with D3) for 6 months. My level finally went up to 70. I noticed a pretty fast energy surge. I then went to D3 5000 units and I'm back at my usual 30 and not feeling very energetic lately. I'm thinking of upping my dose too.
Also have sleep apnea
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