Erica,
How did you get a food sensitivity report? This is my second day in this group. I've been discouraged also. I have LC. Took prednisone for 8 weeks and had diahrrea again within two weeks. I later started budesonide, which did not control it quite as well as prednisone, but I felt like that at least gave me the opportunity to identify some foods I could not tolerate and I did identify dairy, but feel like I have such a long way to go. If I were able to be tested for food sensitivities, I feel like that would put me on the fast track to recover.
Thanks,
Leslie
So sad...Hate this disease !!
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Hi Leslie,
The most reliable food sensitivity tests are stool tests, offered by EnteroLab, in Dallas, TX. Most members here order the combination of the A1 and C1 Panels, but if the cost is more than you can justify spending right now, the A1 Panel alone provides testing for the 4 most common food sensitivities associated with MC, namely gluten, casein (dairy), soy, and eggs. Here's a link to these test kits:
https://www.enterolab.com/StaticPages/T ... #PanelA1C1
The main problem with the blood tests for food sensitivities offered by most labs is that the blood tests typically have much lower accuracy and reliability when compared with the stool tests offered by EnteroLab.
Tex
The most reliable food sensitivity tests are stool tests, offered by EnteroLab, in Dallas, TX. Most members here order the combination of the A1 and C1 Panels, but if the cost is more than you can justify spending right now, the A1 Panel alone provides testing for the 4 most common food sensitivities associated with MC, namely gluten, casein (dairy), soy, and eggs. Here's a link to these test kits:
https://www.enterolab.com/StaticPages/T ... #PanelA1C1
The main problem with the blood tests for food sensitivities offered by most labs is that the blood tests typically have much lower accuracy and reliability when compared with the stool tests offered by EnteroLab.
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.
-
Lesliejhart
- Posts: 4
- Joined: Sun May 03, 2015 8:04 pm
- Location: Tulsa, OK
I don't understand this site very well - how to navigate it and post in the appropriate place.
I met with the nutritionist at my Gastro Drs office this morning. His nurse told me they have had great success in treating colitis with pancreatic enzymes and wanted me to see her. She gave me samples of EnteraGam. I don't remember how she said they had been using it in the past, but during the past 6 months discovered it was "extremely" successful with colitis patients. It is manufactured by Entera Health Inc, Ankeny, Iowa. It is a powder you mix with at least 4 oz of liquid and drink twice a day for the first two weeks. Then once a day. Today is my first day, so I can't tell you much yet. I also went back to Budsenide a couple of days ago hoping to get under control. Leaving on a cruise Saturday and do not want to start with trip with a serious flare!!
This might be something others would like to explore.
I met with the nutritionist at my Gastro Drs office this morning. His nurse told me they have had great success in treating colitis with pancreatic enzymes and wanted me to see her. She gave me samples of EnteraGam. I don't remember how she said they had been using it in the past, but during the past 6 months discovered it was "extremely" successful with colitis patients. It is manufactured by Entera Health Inc, Ankeny, Iowa. It is a powder you mix with at least 4 oz of liquid and drink twice a day for the first two weeks. Then once a day. Today is my first day, so I can't tell you much yet. I also went back to Budsenide a couple of days ago hoping to get under control. Leaving on a cruise Saturday and do not want to start with trip with a serious flare!!
This might be something others would like to explore.
Hello Everyone,
A bit of an update now...Thank you again Chris...I narrowed down my foods and I did away with that obnoxious food rotation diet, and even though my foods are repetition now, I rotate how I make them and it seems to be satisfying for now. I go directly to fresh sliced turkey with a few dried cranberries for taste and a few plain potato chips for my salt fix, that helps keep me full when I don't know what to eat.
My next question for anyone is what is the purpose of Budesonide if I am starting to see progress with my gut but am not sure what I should be noticing to either be on or off of Budesonide. My diarrhea seems to go in waves, the last couple days the food that passed thru wasn't explosive it was rather slow an methodical so to speak, not watery, but not a stool either. Could it be my food eliminations are starting to work? I have been away from Gluten for over two months now, off dairy 100% 2 weeks now, off soy 100% for 2 weeks now and the same with eggs. Would it behoove me to be on a light dose of Budesonide for a little while, or does it sound promising that my body might begin healing on its own?
I am curious because I don't know at what stage I am at.
Thanks so much
Erica
A bit of an update now...Thank you again Chris...I narrowed down my foods and I did away with that obnoxious food rotation diet, and even though my foods are repetition now, I rotate how I make them and it seems to be satisfying for now. I go directly to fresh sliced turkey with a few dried cranberries for taste and a few plain potato chips for my salt fix, that helps keep me full when I don't know what to eat.
My next question for anyone is what is the purpose of Budesonide if I am starting to see progress with my gut but am not sure what I should be noticing to either be on or off of Budesonide. My diarrhea seems to go in waves, the last couple days the food that passed thru wasn't explosive it was rather slow an methodical so to speak, not watery, but not a stool either. Could it be my food eliminations are starting to work? I have been away from Gluten for over two months now, off dairy 100% 2 weeks now, off soy 100% for 2 weeks now and the same with eggs. Would it behoove me to be on a light dose of Budesonide for a little while, or does it sound promising that my body might begin healing on its own?
I am curious because I don't know at what stage I am at.
Thanks so much
Erica
Hi Erica,
It certainly sounds as though you are making progress. Some doctors mistakenly believe that corticosteroids will heal the gut. While it's true that they can help to suppress the inflammation, they cannot prevent the inflammation from being regenerated, and research shows that corticosteroids actually retard healing. The diet changes will allow the gut to heal, with or without budesonide. The reason why many patients prefer to use budesonide is because their symptoms are debilitating, and so severe that they interfere with their ability to work (or have a social life). Budesonide can mask the symptoms, and make life much easier while the diet changes are healing the gut.
If your symptoms are interfering with your ability to work (and/or interfering with your social life), then you might want to take budesonide. If your D is not serious enough to interfere with your ability to do your work, then you might want to do without the budesonide, because it's much easier to track down minor food sensitivities and fine tune your diet without the budesonide.
Tex
It certainly sounds as though you are making progress. Some doctors mistakenly believe that corticosteroids will heal the gut. While it's true that they can help to suppress the inflammation, they cannot prevent the inflammation from being regenerated, and research shows that corticosteroids actually retard healing. The diet changes will allow the gut to heal, with or without budesonide. The reason why many patients prefer to use budesonide is because their symptoms are debilitating, and so severe that they interfere with their ability to work (or have a social life). Budesonide can mask the symptoms, and make life much easier while the diet changes are healing the gut.
If your symptoms are interfering with your ability to work (and/or interfering with your social life), then you might want to take budesonide. If your D is not serious enough to interfere with your ability to do your work, then you might want to do without the budesonide, because it's much easier to track down minor food sensitivities and fine tune your diet without the budesonide.
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 Tex & Leslie,
Well then I'm not imagining some progress then.
This is really hard BTW.....I know I just rec'd my results 4-23-15, and it has only been two weeks, so I should be extremely happy that I am seeing some glimmer of hope already. I have some thankful moments, I need to realize it takes time, and patience is a virtue during this time. I went thru a pretty dark time last week, it seems like every commercial or conversation had something about a food in it that I can not eat and may not ever eat again in it....it was during these times I just wanted to hide in a bubble with my 10 different foods and hunker down for the duration...lol.
So am I following along correctly in that if I know I am going to be traveling or may be attending something that might heighten my stress level I may want to have some Budesonide as a 'helping' factor or will my body potentially get stronger as I stay the course and away from allergens to the point that I may be able to feel comfortable without meds altogether (besides my Allegra for now, histamine may be an issue for me for a long while). I'm on the fence as to whether or not to have a follow up with the Dr regarding asking for Budesonide or not.
Leslie...I had blood drawn and sent to Meridian Valley Labs in Renton WA. It cost me $277 as I got 95E and 95A tests (a total of 190 food types were tested). I rec'd my 'sensitive foods' report in a week and a half. I would never had known all the foods I had an allergen to at this time if I hadn't done this testing. There were a couple in there that I may never had suspected had I been feeling better and ate it, since it is in all foods Soy being one of them (I love Chinese and Japanese foods), but Pineapple was an even more huge issue for me
it can be in all kinds of things too like salsas, flavorings etc. Anyway....for anyone that hasn't had a food sensitivity done you really need to do it. Knowledge is POWER, literally in this healing process, no matter how much a person needs to change their diet to do so. As time progresses if I don't feel completely confident that my blood results are keeping me well I plan to order the Enterolab testing, but am saving that expense for another day at the moment.
I plan to keep reporting back, as I'm sure my story may differ slightly than others but it sure seems to mimic so many here on this site it is a bit scary.
I sure appreciate everyone's support, thank you so much!
Erica
Well then I'm not imagining some progress then.
This is really hard BTW.....I know I just rec'd my results 4-23-15, and it has only been two weeks, so I should be extremely happy that I am seeing some glimmer of hope already. I have some thankful moments, I need to realize it takes time, and patience is a virtue during this time. I went thru a pretty dark time last week, it seems like every commercial or conversation had something about a food in it that I can not eat and may not ever eat again in it....it was during these times I just wanted to hide in a bubble with my 10 different foods and hunker down for the duration...lol.
So am I following along correctly in that if I know I am going to be traveling or may be attending something that might heighten my stress level I may want to have some Budesonide as a 'helping' factor or will my body potentially get stronger as I stay the course and away from allergens to the point that I may be able to feel comfortable without meds altogether (besides my Allegra for now, histamine may be an issue for me for a long while). I'm on the fence as to whether or not to have a follow up with the Dr regarding asking for Budesonide or not.
Leslie...I had blood drawn and sent to Meridian Valley Labs in Renton WA. It cost me $277 as I got 95E and 95A tests (a total of 190 food types were tested). I rec'd my 'sensitive foods' report in a week and a half. I would never had known all the foods I had an allergen to at this time if I hadn't done this testing. There were a couple in there that I may never had suspected had I been feeling better and ate it, since it is in all foods Soy being one of them (I love Chinese and Japanese foods), but Pineapple was an even more huge issue for me
it can be in all kinds of things too like salsas, flavorings etc. Anyway....for anyone that hasn't had a food sensitivity done you really need to do it. Knowledge is POWER, literally in this healing process, no matter how much a person needs to change their diet to do so. As time progresses if I don't feel completely confident that my blood results are keeping me well I plan to order the Enterolab testing, but am saving that expense for another day at the moment.I plan to keep reporting back, as I'm sure my story may differ slightly than others but it sure seems to mimic so many here on this site it is a bit scary.
I sure appreciate everyone's support, thank you so much!
Erica
Leslie...
I forgot to add that I have also been taking:
Probiotics 70 Billion - Dr. Mercola
6000mg VitD3 spray - Dr. Mercola
150mcg K2 -Dr. Mercola
50mg Zinc - Walmart
Essential Vitamins -Dr. Mercola
Cal/Mag/Zinc Supplement (had to start that one Real Slow because of the Magnesium) - Local Wholefood store (USANA product)
I had NO lactobacillus in my intestines what so ever...my bacteria level good vs evil was not in a good place, so the probiotic I think is helping a lot right now too. I have put myself on an autoship of my essential needs at this time I vow to get well period. Total cost for one month was $125 but a couple of those items I wont need to get but every other month so it will range from $90 one month to $125 the next back an forth.
I hope you get to feeling better soon too ;-)
Erica
I forgot to add that I have also been taking:
Probiotics 70 Billion - Dr. Mercola
6000mg VitD3 spray - Dr. Mercola
150mcg K2 -Dr. Mercola
50mg Zinc - Walmart
Essential Vitamins -Dr. Mercola
Cal/Mag/Zinc Supplement (had to start that one Real Slow because of the Magnesium) - Local Wholefood store (USANA product)
I had NO lactobacillus in my intestines what so ever...my bacteria level good vs evil was not in a good place, so the probiotic I think is helping a lot right now too. I have put myself on an autoship of my essential needs at this time I vow to get well period. Total cost for one month was $125 but a couple of those items I wont need to get but every other month so it will range from $90 one month to $125 the next back an forth.
I hope you get to feeling better soon too ;-)
Erica
Erica,
As your intestines begin to actually do some significant healing, you will find that you become more resistant to relapses. IOW, as we heal, if we accidentally ingest a small amount of a food to which we are sensitive, the reactions become less potent, and they don't last as long. Eventually we get to the point where we recognize that the foods that cause us to react are no longer food (for us), instead, we realize that they are toxic to our body, and we no longer crave them.
Some members have taken budesonide along on trips (especially early in their recovery programs) as insurance, in case they get into trouble with their diet while they are traveling. Some take it along as a "security blanket", while others have used it as a prophylactic while they are traveling if they don't trust their ability to totally avoid their food sensitivities.
Please keep an eye on that probiotic product. If you are sure that you are tolerating it, then you may be OK, but at least one member here reported that the product (at least I believe it was the one you are using) made her extremely sick. She found it difficult to believe that he could sell such a toxic product with a clear conscience. In general, most of us find that the more supplements we use, the slower we recover and the greater the chances that we may not be able to reach remission. Of course we are all different, so YMMV.
Tex
As your intestines begin to actually do some significant healing, you will find that you become more resistant to relapses. IOW, as we heal, if we accidentally ingest a small amount of a food to which we are sensitive, the reactions become less potent, and they don't last as long. Eventually we get to the point where we recognize that the foods that cause us to react are no longer food (for us), instead, we realize that they are toxic to our body, and we no longer crave them.
Some members have taken budesonide along on trips (especially early in their recovery programs) as insurance, in case they get into trouble with their diet while they are traveling. Some take it along as a "security blanket", while others have used it as a prophylactic while they are traveling if they don't trust their ability to totally avoid their food sensitivities.
Please keep an eye on that probiotic product. If you are sure that you are tolerating it, then you may be OK, but at least one member here reported that the product (at least I believe it was the one you are using) made her extremely sick. She found it difficult to believe that he could sell such a toxic product with a clear conscience. In general, most of us find that the more supplements we use, the slower we recover and the greater the chances that we may not be able to reach remission. Of course we are all different, so YMMV.
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.
-
Lesliejhart
- Posts: 4
- Joined: Sun May 03, 2015 8:04 pm
- Location: Tulsa, OK
Erica, thanks so much for sharing your resources and what you are doing in addition to the diet. I doubt any doctors are able to take the time to read boards like this to see what is working for others, so it becomes a valuable resource for those of us who are searching for what might work.
I have completed three days with the EnteraGam enzymes. On day two, I had my first "normal" bowel movement in a long time! Today, day three, I did have some diarrhea this afternoon and I suspect soy, which was on the safe list from my Dr's nutritionist.
Tex, good to learn the steroids don't heal - just reduce inflammation. My Dr had not yet recommended a diet when I stared prednisone, so I ate what I wanted. No healing too place. He then felt it was autoimmune and started me on an immune suppressant and budesonide. I was suppose to be able to drop the budesonide and the immune suppressant was supposed to take care of it. That did not happen. So now I am much more conscious about what I eat.
Prior to this board, I had not heard of antihistamines helping and I don't understand that connection.
Last, what do the penguins represent?
Leslie
Learn from the mistakes of others . . . . . you don't have time to make them all![/i]
I have completed three days with the EnteraGam enzymes. On day two, I had my first "normal" bowel movement in a long time! Today, day three, I did have some diarrhea this afternoon and I suspect soy, which was on the safe list from my Dr's nutritionist.
Tex, good to learn the steroids don't heal - just reduce inflammation. My Dr had not yet recommended a diet when I stared prednisone, so I ate what I wanted. No healing too place. He then felt it was autoimmune and started me on an immune suppressant and budesonide. I was suppose to be able to drop the budesonide and the immune suppressant was supposed to take care of it. That did not happen. So now I am much more conscious about what I eat.
Prior to this board, I had not heard of antihistamines helping and I don't understand that connection.
Last, what do the penguins represent?
Leslie
Learn from the mistakes of others . . . . . you don't have time to make them all![/i]
Erica,
I have used Uceris during holidays or on vacation to insure it would be enjoyable for me. I originally took it for 2 months and went into remission with a restricted diet. I have been able to maintain that for about a year now. It has definitely been 2 steps forward and one back.
I am glad to hear you are making progress, just don't get too impatient for results. It's a slow road. I remember sometimes getting to the point of wondering if it even made any difference what I ate or did because I would get WD for no apparent reason!
My GI uses % better to determine if a drug or protocol is working. What percentage of improvement have you noticed? If it's more than 75% then you are on the right track. Improvement is gauged by frequency, urgency, pain, and how much it is interfering with your life.
I have used Uceris during holidays or on vacation to insure it would be enjoyable for me. I originally took it for 2 months and went into remission with a restricted diet. I have been able to maintain that for about a year now. It has definitely been 2 steps forward and one back.
I am glad to hear you are making progress, just don't get too impatient for results. It's a slow road. I remember sometimes getting to the point of wondering if it even made any difference what I ate or did because I would get WD for no apparent reason!
My GI uses % better to determine if a drug or protocol is working. What percentage of improvement have you noticed? If it's more than 75% then you are on the right track. Improvement is gauged by frequency, urgency, pain, and how much it is interfering with your life.
Theresa
MC and UC 2014
in remission since June 1, 2014
We must all suffer one of two things: the pain of discipline or the pain of regret. ~Jim Rohn
MC and UC 2014
in remission since June 1, 2014
We must all suffer one of two things: the pain of discipline or the pain of regret. ~Jim Rohn
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I don't see anything in the ingredients of Mercola's probiotic product that would indicate that it is a toxic product. Of course that does not mean that someone can't react badly to it. Lots of people eat eggs without any problem. Eggs make me very sick. I wouldn't label eggs as a toxic product. I would only suggest that people need to be careful and determine for themselves that it is not toxic to them.tex wrote:Erica,
Please keep an eye on that probiotic product. If you are sure that you are tolerating it, then you may be OK, but at least one member here reported that the product (at least I believe it was the one you are using) made her extremely sick. She found it difficult to believe that he could sell such a toxic product with a clear conscience. In general, most of us find that the more supplements we use, the slower we recover and the greater the chances that we may not be able to reach remission. Of course we are all different, so YMMV.
Tex
Jean
Leslie wrote:Prior to this board, I had not heard of antihistamines helping and I don't understand that connection.
The connection is mast cells. Here are some links to a few short articles that describe how mast cell issues are associated with microscopic colitis:
What are mast cells?
How are mast cells associated with microscopic colitis?
How do I know if mast cells are causing problems for me?
How are mast cell issues treated?
The penguins are just a rough indication of the number of posts that members have written.Leslie wrote:Last, what do the penguins represent?
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.
I used the term "toxic" because I couldn't remember the exact word used in the post about the adverse reaction. And while I certainly didn't intend for it to be interpreted literally (and I don't believe it was the term used in the original post) — it was the closest term I could think of that conveyed the impression indicated by the description of the reaction that was posted. It was described as a very violent reaction. For some reason or other, I can't locate the original post, so I can't make a direct comparison.Jean wrote:I don't see anything in the ingredients of Mercola's probiotic product that would indicate that it is a toxic product. Of course that does not mean that someone can't react badly to it. Lots of people eat eggs without any problem. Eggs make me very sick. I wouldn't label eggs as a toxic product. I would only suggest that people need to be careful and determine for themselves that it is not toxic to them.
According to Merriam-Webster, one of the listed definitions of the word is:
3: extremely harsh, malicious, or harmful <toxic>
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.
Tex, Theresa & Jean
Thanks Tex, perhaps this time next year I can feel more like my Old self, not be so gun shy about where to find the nearest bathroom is all the time and by then my food regime will take on a life of its own. Things will be more subconscious because I will have stayed away from 'toxic' stuff long enough to not pay attention to it so much. I feel like I have been on a rolling 20" wave with so many ups and downs with this disease, to finally see some calm water is a gift. I will be vigilant about the supplements, if I can't seem to hit a remission point in the next couple months I will reevaluate them.
Thanks Theresa, its good to know that it doesn't hurt to have on hand a small dosage of Budesonide when travelling, I will bring that up to my Dr. the next time my husband and I plan a lengthy outing. So far as of this second week I would have to say that my percentage feels over 50% definitely so something positive must be going on .
Jean, so far so good on the probiotic, I haven't felt like there has been any reaction to it. I did put in a comment on the Mercola site to ask about the fructo in it and what plant it came from so I can rule out wheat or soy. Other than that when I hear what it is will determine if I need to change probiotics.
I hope everyone has a great weekend Happy Mother's Day too
Erica
Thanks Tex, perhaps this time next year I can feel more like my Old self, not be so gun shy about where to find the nearest bathroom is all the time and by then my food regime will take on a life of its own. Things will be more subconscious because I will have stayed away from 'toxic' stuff long enough to not pay attention to it so much. I feel like I have been on a rolling 20" wave with so many ups and downs with this disease, to finally see some calm water is a gift. I will be vigilant about the supplements, if I can't seem to hit a remission point in the next couple months I will reevaluate them.
Thanks Theresa, its good to know that it doesn't hurt to have on hand a small dosage of Budesonide when travelling, I will bring that up to my Dr. the next time my husband and I plan a lengthy outing. So far as of this second week I would have to say that my percentage feels over 50% definitely so something positive must be going on .
Jean, so far so good on the probiotic, I haven't felt like there has been any reaction to it. I did put in a comment on the Mercola site to ask about the fructo in it and what plant it came from so I can rule out wheat or soy. Other than that when I hear what it is will determine if I need to change probiotics.
I hope everyone has a great weekend Happy Mother's Day too
Erica
I rec'd a response from the Mercola site and this is what their Fructo product is in their Probiotic Formula....
Thank you for writing to Mercola.com. Here is the response to your Mercola inquiry.
The Fructooligosaccharide (FOS) in the Complete Probiotics is obtained through extraction from Chicory (Chichorium intybus Linn) root. The product is gluten and soy free; there are also no eggs or dairy products used for the Complete Probiotics. Please let us know if we can be of further assistance!
So I feel pretty confident that I will be ok taking this product, unless my body shows signs of resistance later on down the road.
Erica
Thank you for writing to Mercola.com. Here is the response to your Mercola inquiry.
The Fructooligosaccharide (FOS) in the Complete Probiotics is obtained through extraction from Chicory (Chichorium intybus Linn) root. The product is gluten and soy free; there are also no eggs or dairy products used for the Complete Probiotics. Please let us know if we can be of further assistance!
So I feel pretty confident that I will be ok taking this product, unless my body shows signs of resistance later on down the road.
Erica