trying to be gluten free

Discussions on the details of treatment programs using either diet, medications, or a combination of the two, can take place here.

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hazel
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trying to be gluten free

Post by hazel »

Hi all,
I have been having a flare (I guess that's what it is--have been having D every day since Dec. 24th) and am getting tired of it. Also feeling weak and achey. When I originally had CC (2003) I figured it was caused by ODing on NSAIDs for my bad knee. CC went into remission with Entocort and had knee replaced! But now D is back. I was thinking maybe I'd try to go gluten free, as that has worked for many folks on the board. I've never had my food tolerances checked so don't know what they may be. Anyway I started yesterday. Still had D this morning but I think I do feel a little better. Could be because the sun is shining. :smile:
My question is: if gluten free diet is going to do the trick, how long should I expect it to be before I see results? Also are probiotics only for constipation or are they good for D also? Oops that's 2 questions.
kathy
mle_ii
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Re: trying to be gluten free

Post by mle_ii »

hazel wrote:My question is: if gluten free diet is going to do the trick, how long should I expect it to be before I see results? Also are probiotics only for constipation or are they good for D also? Oops that's 2 questions.
Not sure of the exact answer on the first question, I think it depends on the amount of damage done. Some see mental and some physical symptoms improve immediately, but the GI symptoms might take longer, weeks, months, years depending on the damage done.

Second question, it helps for both. Crazy huh.
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tex
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Post by tex »

Congrats on trying the diet. I have to agree with Mike - that's the 64 dollar question. If you're still taking Entocort, you should notice at least some improvement within a week, (hopefully in just a few days), but I have a hunch that without the help of meds, many of us take a while to recover, and the recovery time seems to have some sort of relationship to the time that we've been reacting, as Mike mentioned.

I'm gonna take a wild guess, (based on the fact that you've been reacting for about six weeks), that in a few days, you'll be able to tell that it's helping, and within two to three weeks you will no loner be worrying about how far it is to the nearest bathroom. LOL.

Good luck.

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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hazel
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Post by hazel »

Thank you guys for the encouraging words. I've been off the Entocort for several years with no real problems 'til now. Here's how it went on my second GF day. We went to a school function and I got NO bun for my bar-b-cue, NO mac and cheese, NO crispy chicken nugget, NO cookie, and NO beer! But it will be worth it, I hope.
kathy
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tex
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Post by tex »

That's a lot of NOs, but that's sorta par for the course, I reckon. I usually end up the same way when I eat away from home - if I'm lucky, I can eat the meat. LOL.

Beer at a school function? Well I'll be darned. LOL.

I hope it will be worth it too. Please keep us updated on your progress, because everyone going on the diet asks the same question, and we never really know how to answer.

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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Post by starfire »

Wishing you the very best of luck with the diet, Kathy.

Love, Shirley
When the eagles are silent, the parrots begin to jabber"
-- Winston Churchill
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artteacher
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Caltrate

Post by artteacher »

Hi Kathy,

This is a suggestion that's a long shot, but since you've been having D for so long, you're probably willing to try just about anything, I bet?


Caltrate 600 Plus, the one in the purple box helps me. When D is really bad I take 2 tablets just before breakfast, and 2 right before dinner until the D abates, and then gradually reduce the dosage down to 1 1/2 tablets, the 1, then 1/2. I don't know why it works, and I think I'm probably the only one on the whole board that this works for, but maybe it's worth a shot. I've recommended it to a lady at work, and it has helped her.

This is a treatment that typically works for people who have had a gallbladder removed, and have bile released into the digestive tract at inappropriate times, causing irritation and inflammation to the tract, therefore D. It works for about 20% of people with IBS who try it, as well.

I really hope you're feeling better soon,

Marsha
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hazel
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Post by hazel »

So far no improvement norman-wise. This is the end of the first week. If no progress after two weeks maybe I'll add the Caltrate. Thanks for the suggestion, Marsha.
kathy
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tex
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Post by tex »

Are you still eating dairy products? Cutting that out might be the key. It might be worth a try, anyway, since so many of us seem to have problems with dairy product, especially if we are already reacting.

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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Post by mle_ii »

Back when I was trying to figure this out I removed all the common alergens and started from there. It's a pain, but less of a pain that having to second guess what food is causing what issues.

So for example, someone might remove gluten for a while, see that they don't improve, add it back and remove dairy, find no improvement, when if they were to remove both that they show improvement. Strange as it seems removing just one at a time may not always show the results correctly.
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hazel
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Post by hazel »

Update/Revelation?

I haven't been having any success with my gluten-free diet (2 weeks now). I was getting discouraged. Then last night I was sick as a dog. Had D many many times between 9:45 and midnight. I said, "Oh dear, what is wrong with me? I am getting worse!" Then I had a thought and looked at the packaging for a frozen risotto dish we'd had for dinner. Aha! wheat flour! I had carelessly not read the label. I think this may be meaningful. :shock:

I will be more careful from now on, believe me!
kathy
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tex
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Post by tex »

Hi Kathy,

Old habits are hard to break, but D is a pretty good teacher, I suppose. Obviously you're on the right track, if a slip up such as that brought such a strong response.

You know, it's interesting how the symptoms have returned with a vengeance, after so many years of remission. Can you think of anything that might have triggered it this time? Of course, you may have just now, (in December), become gluten sensitive, but one would think that some event would be required to trigger that, also. I suppose it's possible that you've just been enjoying spontaneous remission for all these years, and your good luck simply came to an end in December, but I can't help but feel there is an underlying cause that triggered the reactivation, even if it was spontaneous remission.

I hope you're feeling much better today.

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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hazel
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Post by hazel »

Thank you Tex. I am feeling much better today. I baked a loaf of gluten free bread. Although it doesn't have the texture of bread (it's really dense) it tastes good and will make it possible to have a sandwich. And toast.

In November or late October I developed a trigger finger (ala Margie's trigger thumb) and it was very painful. I took Tylenol but then once or twice I took an Aleve. I can't believe that one or two pills could trigger my relapse, but who knows?

Here it is http://www.eatonhand.com/hw/hw022.htm
Now I don't take anything for my finger. I try to ignore it. The only cure is surgery and I'm not up for that.

I am going to keep trying the gf diet, to give it a fair chance. It seems pretty healthy, not eating packaged foods. And maybe it will help me heal.
kathy
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Post by starfire »

Kathy,

My Mom had trigger finger on both hands (middle finger on each one). She went ahead and had both of them operated on while I was able to be with her for a period of time. She did well. Just thought I'd pass it on for what it's worth.

:hug:

Love, Shirley
When the eagles are silent, the parrots begin to jabber"
-- Winston Churchill
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tex
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Post by tex »

Kathy,

If you want bread, (bread that you won't be tempted to use as a doorstop), Anna Sobaski makes the best GF bread mix, by far. She even makes several versions, for various degrees of multiple intolerances. If you make it right, I'll guarantee that you can slice this bread without it tearing and falling apart in crumbles, the way that most GF bread does. It is light, (as GF bread goes), fluffy, moist, and makes excellent sandwiches. The only drawback is that it's a bit pricey, but it's worth it if you like sandwiches. Unless you're also avoiding corn and/or yeast, the original mix is easier to work with, to get top quality GF bread.

I'm glad that you're feeling better today. Incidentally, before I cut dairy back out of my diet, last fall, sometimes my RA would be so bad that when I woke up in the morning, I would have to actually take one hand and uncurl some of the fingers of the other hand, and hold them in place, to get them to straighten out. It took about a month or six weeks off dairy to eliminate that problem, but so far, it hasn't happened since then. I don't know if you're cutting out dairy also, but if you are, your trigger finger might begin to improve in a few weeks, because as the inflammation goes away, the tendon sheath will sort of "deflate", and allow more freedom for the tendon. For that matter, just cutting out gluten may provide some benefit, also, in the long run.

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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