Hi again Karen,
Think I MAY have some good news for you. There's a branch/offshot of the Houston Celiac Support Group up in The Woodlands that might be a good place for you to start meeting other people with gluten sensitivity, should you think you'd like to try the diet for a while. Some of the speakers, if they are like Houston, you might find very interesting. Making a friend of someone up there who's a little ahead of you in terms of knowing where to shop might be great as a resource.
Unless the leaders of that branch are different, however, they may not understand the connection between M.C. and gluten sensitivity (gs). It has become more widely known now that there is a non-celiac gluten sensitivity. Best thing is to just play like you were officially diagnosed with celiac when you go. You would just be there to learn and have some support if you go.
Problem is that they show you all sorts of snacky type things that are expensive, so you may get the impression the diet has to be expensive. It takes a little while to get used to it, but you don't really have to have a substitute for all the baked things, like bread, that you've probably been eating all your life.
Easiest thing will be to get yourself started eating more simply...non-processed foods for a while...doesn't necessarily have to cost more than it would to eat anyway. Might cost less without the baked things you would ordinarily eat.
Try fixing yourself one meat serving, a cooked vegetable (frozen ones without additives can be better than fresh...just veggies, salt would be ok if you don't have any other reason to avoid it, in moderation). You could try a little white rice for starters. I used to use the Uncle Ben's plain white rice in the boiling bags. They come in two sizes, depending upon how much you want to fix at a time. Not every store will have both sizes. It was handy when my energy level was soo low in the beginning. If you want, you could get it in bigger quantities to save money, however.
I used to cook plained mixed vegetables on top of the stove in a little water, and then drink the liquid left in the pot as that's where many of the nutrients end up when you cook that way. It's also helpful if you aren't yet tolerating vegetables. In that case, maybe your parents would eat the solid
part and you could drink the remaining liquid for a while. Just depends on how fast you improve. You could also try a white potato instead of rice. Try a little gluten free chicken broth for flavor or just use the vegetable liquid. I was able to use a good olive oil on mine and of course, a little salt and pepper if the pepper doesn't bother you.
Seems like pears were the easiest fruit for most people to tolerate right at first. After things settle down, you can start to add things in slowly...like gf seasonings, other vegetables, fruits, etc. That will buy you some time until you've had a chance to study where all the more hidden gluten sources are.
See how you feel, and take note of any changes. Give it some time. One word of caution...be careful to buy chicken that hasn't been injected. Unfortunately, most of the less expensive stores tend to carry brands that are injected, but there may be exceptions. Look for things that have toll free customer service numbers on the packages,. and call them right in the store if you have a cell phone. Meat section things may be a little more difficult, so see if a company's name is on the packages and then give them a call if you don't think the butcher really knows what's in the meat, chickens and things. Seafood isn't normally injected but some is sold after it's marinated, so need to find out what it's marinated with.
Seems like most folks found ground beef products not to cause reactions, so that might be a good option for you at a lower price since you can find ground beef most anywhere. Just remember that beef is more difficult to digest among non-gs people anyway, so we're no different in that regard. Soon you may be able to do just fine on beef.
Canned red salmon is a tasty option for fish and it's ALWAYS wild if it's red, and canned tuna MAY be ok.
FYI some flavored varieties have soy in them, and think there are some that have another allergen in them...forget which one. Maybe someone reading all this will remember and post a comment about the ones of the latter to avoid. Again, you can always call the company or email them. Target seems to carry lots of tunas, by the way.
Of course right now all of this sounds too restrictive, but that should change as you get better.
Many of us were very low in B-12, and I still would be, even this far out, where it not for supplementing with B-12, so see if you can find a good brand of sublingual METHYLcobalamin rather than the CYANO form of it. This works just like the injected form, and saves you having to go into the office for shots every month. Be sure that the product you buy states on the label that it is free of all the major allergens...especially gluten, dairy, soy, and yeast. That may help your energy level to go up noticeably, but it's not responsible for all of the fatigue if any.
My thyroid died completely about the time my colitis was at it's worst, so was taken out right before I "turned myself in" for a colonoscopy and got the M.C diagnosis. It is common to have thyroid problems, high or low, with these autoimmune things like we have. If you are low thyroid, you would need to see a doctor to have that diagnosed and treated. Meantime, once you get this simple diet thing down, you might want to try the methylcobalamine
sublingual form. I use Country Life's version in 3000 mcg SL tablets, but they are a little higher priced than other brands. Just know they have done wonders for me. After a while, you wouldn't need to take that much each day. I like a high dose like that because I often forget to take them. Think I average out about right.
Remember, low B-12 can lead to pernicious anemia which can kill you if it goes on too long. You wouldn't want to go on to long with low B-12 anyway because it leaves you so tired. The damage to your gut is enough to make your tired, particularly if you are malabsorbing nutrients.
Just remember to go one step at a time, and try not to let it get too complicated. It's like peeling an onion...you figure it out a layer at a time, so just
go a step at a time and try not to get impatient. Don't worry about getting bored with eating all the same things all the time. Eventually, you'll eat more variety than you ever did.
If you would like, send me a PM (using the private message system on this site) and we can talk about the specifics of the group that meets in The Woodlands. At least I THINK they are still meeting up there. Sounds like you're on the opposite side of Conroe from The Woodlands. I just visited an old friend up there in Conroe a few weeks ago, but she lives very close to The Woodlands.
By the way, what stores are close to you where you are? There are about a million other things to learn, but you need to get a little relief first from the diarrhea. Fatigue may take a little longer than all the other symptoms.
Any other symptoms?
Be back when I can...Luce
I want my life back...............
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Been having a bad week. This disease effects you not only physically but emotionally and financially.
Been on just meat and potatoes for a week, and i have noticed some 'calm' down.
If i have to go out somewhere, I take Imodium.
Two things i'm curious about, Imodium and other anti-diarrheal medications cuts down on the
number of times i go, but, they seem to gas me up so bad, and I have this horrible feeling of
discomfort in my gut. It's almost like my colon is about to burst.
Also, i'm curious to know the folks that have had success with diet restrictions were diagnosed
with CC or LC. The reason I ask is, that GI, who said he had treated 3 people with MC, found that
CC is way more resistant to treatment then LC.
Still struggling to understand all this. Probably never will.
Been on just meat and potatoes for a week, and i have noticed some 'calm' down.
If i have to go out somewhere, I take Imodium.
Two things i'm curious about, Imodium and other anti-diarrheal medications cuts down on the
number of times i go, but, they seem to gas me up so bad, and I have this horrible feeling of
discomfort in my gut. It's almost like my colon is about to burst.
Also, i'm curious to know the folks that have had success with diet restrictions were diagnosed
with CC or LC. The reason I ask is, that GI, who said he had treated 3 people with MC, found that
CC is way more resistant to treatment then LC.
Still struggling to understand all this. Probably never will.
Imodium and similar medications work by slowing down motility, which, in a sense, promotes constipation. Diarrhea is a mechanism by which the body quickly purges from the system, substances that it considers to be toxic. IOW, if that stuff is inflammatory, the quicker we get it out of our system, the better off we are. The problem is that with MC, it becomes a chronic condition.Karen wrote:Two things i'm curious about, Imodium and other anti-diarrheal medications cuts down on the
number of times i go, but, they seem to gas me up so bad, and I have this horrible feeling of
discomfort in my gut. It's almost like my colon is about to burst.
Some people are able to use Imodium without annoying side effects, while others have problems. For me, for example, it makes me as dizzy as a drunk skunk. The symptoms you are having are apparently a result of retaining fermentable substrate. IOW, by not purging partially-digested food, it ferments in your gut (IOW, it rots in your gut), causing gas and bloating. It's possible that a smaller dose might allow control with fewer symptoms, but fermentation is a common problem with partially-digested food, because the longer the material stays in the colon, but more fermentation takes place.
That's a common belief among gastroenterologists, because many consider CC to be a later stage of LC, and therefore more difficult to treat, but that doesn't hold up to scientific scrutiny. Research shows that the degree of severity of laboratory markers (such as infiltrated lymphocyte numbers and/or increased collagen band thickness), are not correlated with clinical symptoms. That's true for celiac disease as well. In fact, for many patients, their markers can segue back and fourth between LC and CC, making claims that one form is more difficult to treat, irrelevant. Also, 3 patients do not constitute a valid sample quantity on which to base any conclusions. On this board, we "see" hundreds and hundreds of MC patients, more than most GI docs will ever see in their lifetime. For both types of MC, some cases are much more severe than others, and some cases respond quickly to treatment.Karen wrote:Also, i'm curious to know the folks that have had success with diet restrictions were diagnosed
with CC or LC. The reason I ask is, that GI, who said he had treated 3 people with MC, found that
CC is way more resistant to treatment then LC.
Some cases in both categories seem to be refractive to treatment. It's true that it typically takes longer for the collagen band thickness that marks CC to develop, but that doesn't necessarily mean that it's more difficult to treat. It does imply that healing may take longer, but the treatment is the same, for all types of MC (and currently, at least a dozen different types have been described). Your GI doc has almost certainly never heard of most of them, so he wouldn't recognize them if he encountered them.
Tex
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.
Hi Karen. I also have CC. Dx this February. I have gotten sooooo much better since then. Like Carol said, for me Entocort ( budesonide) worked miracles for me. It settled things down quickly so the dietary changes could help heal my gut. I first gave up dairy. It was very hard for me. I absolutely love cheese! But as you know, you get to the point where feeling better is the most important thing. Then I gave up Gluten. I can tell i am healing because I went from taking three pills a day, to two, and now I am down to one! I only visit the bathroom once a day now ( usually). Lately, I had to give up soy because I could tell it was causing "rumbling". On the bright side, I am starting to test some foods and add them back in. Some fruits are back, as are beans :)
Just know that you have come to the right place for info. There is a way to get better ( not cured). You are in the hardest part of this disease and have to dig deep to find it in you to give up the foods you love - for now. The way I look at it is there are the foods that cause inflammation ( gluten, dairy,soy, eggs) and there are the foods that aggravate an already inflamed gut ( raw fruits and veggies, tomato products, peppers and spices...). The latter group you may be able to add back in once you have healed.
Feel free to ask questions and/or need food suggestions
Leah
Just know that you have come to the right place for info. There is a way to get better ( not cured). You are in the hardest part of this disease and have to dig deep to find it in you to give up the foods you love - for now. The way I look at it is there are the foods that cause inflammation ( gluten, dairy,soy, eggs) and there are the foods that aggravate an already inflamed gut ( raw fruits and veggies, tomato products, peppers and spices...). The latter group you may be able to add back in once you have healed.
Feel free to ask questions and/or need food suggestions
Leah
.jpg){kind=avatar}
Leah wrote:
The way I look at it is there are the foods that cause inflammation ( gluten, dairy,soy, eggs) and there are the foods that aggravate an already inflamed gut ( raw fruits and veggies, tomato products, peppers and spices...). The latter group you may be able to add back in once you have healed.
Feel free to ask questions and/or need food suggestions
Leah
This is a good way to put it Leah, the difference between foods that cause inflammation and foods that exacerbate it.
Jean
tex wrote:Imodium and similar medications work by slowing down motility, which, in a sense, promotes constipation. Diarrhea is a mechanism by which the body quickly purges from the system, substances that it considers to be toxic. IOW, if that stuff is inflammatory, the quicker we get it out of our system, the better off we are. The problem is that with MC, it becomes a chronic condition.Karen wrote:Two things i'm curious about, Imodium and other anti-diarrheal medications cuts down on the
number of times i go, but, they seem to gas me up so bad, and I have this horrible feeling of
discomfort in my gut. It's almost like my colon is about to burst.
Some people are able to use Imodium without annoying side effects, while others have problems. For me, for example, it makes me as dizzy as a drunk skunk. The symptoms you are having are apparently a result of retaining fermentable substrate. IOW, by not purging partially-digested food, it ferments in your gut (IOW, it rots in your gut), causing gas and bloating. It's possible that a smaller dose might allow control with fewer symptoms, but fermentation is a common problem with partially-digested food, because the longer the material stays in the colon, but more fermentation takes place.
That's a common belief among gastroenterologists, because many consider CC to be a later stage of LC, and therefore more difficult to treat, but that doesn't hold up to scientific scrutiny. Research shows that the degree of severity of laboratory markers (such as infiltrated lymphocyte numbers and/or increased collagen band thickness), are not correlated with clinical symptoms. That's true for celiac disease as well. In fact, for many patients, their markers can segue back and fourth between LC and CC, making claims that one form is more difficult to treat, irrelevant. Also, 3 patients do not constitute a valid sample quantity on which to base any conclusions. On this board, we "see" hundreds and hundreds of MC patients, more than most GI docs will ever see in their lifetime. For both types of MC, some cases are much more severe than others, and some cases respond quickly to treatment.Karen wrote:Also, i'm curious to know the folks that have had success with diet restrictions were diagnosed
with CC or LC. The reason I ask is, that GI, who said he had treated 3 people with MC, found that
CC is way more resistant to treatment then LC.
Some cases in both categories seem to be refractive to treatment. It's true that it typically takes longer for the collagen band thickness that marks CC to develop, but that doesn't necessarily mean that it's more difficult to treat. It does imply that healing may take longer, but the treatment is the same, for all types of MC (and currently, at least a dozen different types have been described). Your GI doc has almost certainly never heard of most of them, so he wouldn't recognize them if he encountered them.
Tex
Thanks Tex. i just think I'm not going to take Imodium anymore unless I am going to be going out somewhere. This is painful. Lord, this is worse then D.
And, yes, my GI Doc doesn't have a clue. I'm simply not going back to him. What's the point !
Hi Karen,
I also have CC. Diet is very key to recovery. I also took Entocort. I've been off of drugs for almost 5 months and have 1 bm per day. I bought my Entocort in US but if I had no other options I would not hesitate to use Tex's recommendation. If the folks your doctor treated did not make GF DF diet changes they most likely relapsed after stopping Entocort. It is not uncommon to relapse within 2 weeks of stopping Entocort without diet changes. People on this forum have also healed from diet alone. Many people drop off because they heal.
BTW there really is no reason with diet/medication changes you couldn't be traveling in 6 months to a year. That is a very realistic goal. I feel well enough now to hike (and eat healthy) around Europe if I didn't have to work. I got CC April 2011. Diagnosed Aug 1 2011. GF Oct 1 2011. DF Jan 1 2012. Even with drugs diet is very key. Best wishes, Brandy
I also have CC. Diet is very key to recovery. I also took Entocort. I've been off of drugs for almost 5 months and have 1 bm per day. I bought my Entocort in US but if I had no other options I would not hesitate to use Tex's recommendation. If the folks your doctor treated did not make GF DF diet changes they most likely relapsed after stopping Entocort. It is not uncommon to relapse within 2 weeks of stopping Entocort without diet changes. People on this forum have also healed from diet alone. Many people drop off because they heal.
BTW there really is no reason with diet/medication changes you couldn't be traveling in 6 months to a year. That is a very realistic goal. I feel well enough now to hike (and eat healthy) around Europe if I didn't have to work. I got CC April 2011. Diagnosed Aug 1 2011. GF Oct 1 2011. DF Jan 1 2012. Even with drugs diet is very key. Best wishes, Brandy
The recommended dose is 3 pills per day, usually best taken all at one time, first thing in the morning, for maximum effectiveness.Karen wrote:Okay, if I order the generic Endocourt from India, how many pills should i take a day, and is it safe to
stay on it for several months?
Some people develop side effects that are bothersome enough to cause them to stop taking it. Otherwise, most people show no significant ill effects after taking it for a year or more. After that, it's a good idea to reduce the dosage, if possible.
Tex
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.
Are you sure you can't get a decent price here? The generic for me is only $20 for three months worth, but I'm told my coverage is good. If you have to get the India one, most of us start with three pills a day ( 9 mg). I took one with each meal. When I started to get kind of constipated, I SLOWLY weened down to two ... and so on.
Leah
Leah
Before I was Dx'd, I took 2 tablets of Imodium a day. It stopped the D, but I felt so bound up that I didn't take it for several years. Now, I'm taking 1/2 Imodium a day and I don't have any feelings of being bound up. I'm also taking two Entocort pills a day. This combination works much better than 3 Entocort pills a day did.
You may want to experiment with a lesser dose of Imodium to see if it will give you relief without causing discomfort.
Gloria
You may want to experiment with a lesser dose of Imodium to see if it will give you relief without causing discomfort.
Gloria
You never know what you can do until you have to do it.
Leah,
No need to apologize. Most of this stuff is not chiseled in stone, because we are all different.
Tex
No need to apologize. Most of this stuff is not chiseled in stone, because we are all different.
Tex
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.
-
Deanna in CO
- Adélie Penguin
- Posts: 220
- Joined: Mon Feb 20, 2012 2:16 pm
- Location: Colorado