One step forward...two steps back!
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
One step forward...two steps back!
Hi I have been dealing with MC for 4 years yet only diagnosed 13 months. I love as doing so well on long term Budesonide taking 3mg every third day. Then under stress of a family death I ate a piece of Gluten Free chocolate cake (I've been AIP Paleo for 2 years). And the "dam broke" so to speak! I started back on 9 mg/day Budesonide for 2 weeks and now I am down to 3 mg/day. I eat all of my vegetables well cooked except for a daily shake with 3 cups of raw spinach and organic canned pumpkin and coconut milk. I've done this for about 2 years (I have mthfr and methylation problems). I feel like the sugar cause my relapse but could the spinach/pumpkin be a problem now even though I had tolerated it before (and I was still taking Budesonide every 3rd day then too). Hope I wasn't terribly confusing. I am just discouraged!!
I'm sorry that you had a relapse of symptoms. Yes, once our gut is hypersensitive again, we typically have to go back to a simple, bland, low-fiber diet long enough to allow some significant healing. Stress is a huge trigger for MC and many of us have suffered relapses under such conditions without added sugar.
It's possible that the sugar may have been the immediate trigger though, because after we have been avoiding sugar for a long time, the brush border regions of our small intestine sort of shut down their enzyme production for those specific enzymes. They would have to relearn how to produce enough of the proper enzymes to digest a significant amount of those sugars in order to enable us to eat something similar to a piece of cake again. Foods with a significant amount of sugar can definitely cause me to have D.
Please don't be discouraged because that can happen to any of us. If you want to try to add such foods as cake to your diet in the future, try starting out with very small servings at first, slowly increasing them until you can handle normal amounts. Many of us find that we cannot handle as much sugar as we could prior to MC, but by working up to it, we can handle it well enough to get by.
It's also possible that some other ingredient in the cake may have caused a reaction. 5–10 years ago soy was not a problem for me. But I discovered last year that I now produce antibodies against it, even though I had been minimizing it in my diet (or perhaps because I had been minimizing it in my diet).
Tex
It's possible that the sugar may have been the immediate trigger though, because after we have been avoiding sugar for a long time, the brush border regions of our small intestine sort of shut down their enzyme production for those specific enzymes. They would have to relearn how to produce enough of the proper enzymes to digest a significant amount of those sugars in order to enable us to eat something similar to a piece of cake again. Foods with a significant amount of sugar can definitely cause me to have D.
Please don't be discouraged because that can happen to any of us. If you want to try to add such foods as cake to your diet in the future, try starting out with very small servings at first, slowly increasing them until you can handle normal amounts. Many of us find that we cannot handle as much sugar as we could prior to MC, but by working up to it, we can handle it well enough to get by.
It's also possible that some other ingredient in the cake may have caused a reaction. 5–10 years ago soy was not a problem for me. But I discovered last year that I now produce antibodies against it, even though I had been minimizing it in my diet (or perhaps because I had been minimizing it in my diet).
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.
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Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
you were not confusing... similar situation has happened to others (sadly)
in addition to what Tex has mentioned,
One aspect we have seen with some people is that over time Budesonide can become less effective.
so where it may have been providing protection for a trigger (or triggers) you were ingesting before, now it is not as 'protective' and you are reacting to those triggers
another consideration- have you been supplementing with Vit D3 and magnesium during this time? inflammation reactions and our ability to recover from those reactions is reliant on our Vit D3 levels and Magnesium levels.
my feeling is the combo of stress, the cake (?sugar ?soy) less effectivesness of budesonide and not enough Vit D3 and magnesium is the reason for the flare.
my suggestion for now is to pause the smoothie, start/increase Vit D3 and magnesium to help with inflammation levels
hope this helps
in addition to what Tex has mentioned,
One aspect we have seen with some people is that over time Budesonide can become less effective.
so where it may have been providing protection for a trigger (or triggers) you were ingesting before, now it is not as 'protective' and you are reacting to those triggers
another consideration- have you been supplementing with Vit D3 and magnesium during this time? inflammation reactions and our ability to recover from those reactions is reliant on our Vit D3 levels and Magnesium levels.
my feeling is the combo of stress, the cake (?sugar ?soy) less effectivesness of budesonide and not enough Vit D3 and magnesium is the reason for the flare.
my suggestion for now is to pause the smoothie, start/increase Vit D3 and magnesium to help with inflammation levels
hope this helps
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
Thank you both. I do take a vitamin D supplement but the only thing I do as far as magnesium supplement is occasionally use the magnesium lotion I would say three or four times per week. What magnesium supplement would not give me diarrhea? Should I continue the budesonide? I have also been considering adding Benadryl at night, what do you think about that? Also, even though the spinach is liquefied do you think it could still continue to aggravate the symptoms? Regarding the cake it did not contain soy I think the sugar and this dress just got to me. Your wisdom and help is invaluable! Especially since Dr's G.I. doctors included do not have a clue!!
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Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
how much Vit D3 are you taking?
Magnesium - tablets Doctors Best Magnesium Glycinate is well tolerated and for better quality type of Magnesium a few here use the ReMag product from Dr Dean.
increasing the use of the lotion in the short term will help (ie a few times a day)
Budesonide - if it is helping to reduce symptoms then yes continue taking it, I mentioned the possible effectiveness reduction for two reasons, it would explain current situation for you and you may not be able to rely on it for the long term.
re the smoothie, it may not be the spinach causing the issue, what are the ingredients of the canned pumpkin and the coconut milk? are you sure there are no possible trigger ingredients in these?
Benedryl will help if histamines are contributing to the flare. Not all inflammation is histamine related.
sorry there is no black and white solution to this, sadly trial and error is all we have.
Magnesium - tablets Doctors Best Magnesium Glycinate is well tolerated and for better quality type of Magnesium a few here use the ReMag product from Dr Dean.
increasing the use of the lotion in the short term will help (ie a few times a day)
Budesonide - if it is helping to reduce symptoms then yes continue taking it, I mentioned the possible effectiveness reduction for two reasons, it would explain current situation for you and you may not be able to rely on it for the long term.
re the smoothie, it may not be the spinach causing the issue, what are the ingredients of the canned pumpkin and the coconut milk? are you sure there are no possible trigger ingredients in these?
Benedryl will help if histamines are contributing to the flare. Not all inflammation is histamine related.
sorry there is no black and white solution to this, sadly trial and error is all we have.
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
I am taking 2000 IU Vit D
I can't notice any "side effects" of the Busdesonide but I am just scared to take a long term steroid even thought it is non systemic
How long does Benedryl take to show effectiveness...It makes me groggy even the next day.
My smoothie: Coconut milk is only Organic Coconut and water and Pumpkin is only organic pumpkin. I do add a ripe banana. I do not eat much fruit other than this.
I will order the magnesium and increase the lotion
Thank you so so much!
I can't notice any "side effects" of the Busdesonide but I am just scared to take a long term steroid even thought it is non systemic
How long does Benedryl take to show effectiveness...It makes me groggy even the next day.
My smoothie: Coconut milk is only Organic Coconut and water and Pumpkin is only organic pumpkin. I do add a ripe banana. I do not eat much fruit other than this.
I will order the magnesium and increase the lotion
Thank you so so much!
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Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
i would encourage you to increase the Vit D3, while there is inflammation you would need at least 5000iu per day
I am not sure about Benedryl, I have never taken it (it is not available in Australia)
Canned pumpkin is not something we have in Australia, but I would have thought that something canned would have some sort of additional ingredient to preserve it.
the other aspect to the smoothie is that there is not much protein. Protein (namely animal protein) is very important for gut healing.
I am not sure about Benedryl, I have never taken it (it is not available in Australia)
Canned pumpkin is not something we have in Australia, but I would have thought that something canned would have some sort of additional ingredient to preserve it.
the other aspect to the smoothie is that there is not much protein. Protein (namely animal protein) is very important for gut healing.
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
Gabes,
This pumpkin is in an 8oz carton. Very good product. I do add Great Lakes brand Collagen Hydrolysate (2T =22 gm Protein) It is sourced from Beef. I didn't mention that because I was pretty certain that it was not causing any problems :)
I ordered the Magnesium already and I will increase the Vit D.
Thanks!!
This pumpkin is in an 8oz carton. Very good product. I do add Great Lakes brand Collagen Hydrolysate (2T =22 gm Protein) It is sourced from Beef. I didn't mention that because I was pretty certain that it was not causing any problems :)
I ordered the Magnesium already and I will increase the Vit D.
Thanks!!
If the spinach is raw, even "juicing" it will usually cause the same problems as eating spinach because the fiber content seems to be preserved.mwt wrote:Also, even though the spinach is liquefied do you think it could still continue to aggravate the symptoms?
Some of us have problems with oxalates and we have to avoid spinach because it has a fairly high oxalate content.
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.
Well, after you have been in remission for a while (to allow some time for healing) you can probably slowly reintroduce the spinach into your smoothie. It's pretty much impossible to eat a well balanced diet during a flare and still recover from the flare. We tend to do much better if we recover first and then eat a balanced diet later.
Tex
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, I have a (dumb?) question. If soy became an issue for you and you were minimizing it, how can we add things back into our diet when we have been avoiding them? Wouldn't we start producing antibodies against any item? If you were still eating it (even minimally), why would you start producing antibodies?5–10 years ago soy was not a problem for me. But I discovered last year that I now produce antibodies against it, even though I had been minimizing it in my diet (or perhaps because I had been minimizing it in my diet).
I'm sure you're going to give me a light bulb moment and a DUH moment!
Thanks,
Terre
Hi Terre,
No, we don't automatically produce antibodies to a food just because we avoid it. We may temporarily lose the ability to produce massive amounts of digestive enzymes for those foods, but that has nothing to do with antibody production (which is necessary for AI-type reactions).
There are only 2 ways that can cause our immune system to begin to produce antibodies against a protein. The first is if any part of its molecular structure more extensive than individual amino acids (in other words, peptides) manage to enter our blood stream because of increased intestinal permeability. The second way is by molecular mimicry, which can occur when certain peptides in a molecule happen to resemble the 33 mer peptide of wheat gliadin (which is the primary peptide that causes virtually all celiacs to react). Peptides that closely resemble the 33 mer peptide can confuse the immune system if it is already completely overwhelmed by a chronic reaction.
We don't begin to react to foods overnight. The first immune system responses to a food sensitivity will be minimal and it will build with each successive exposure. The longer (more frequently) our immune system is exposed to a sensitivity the higher the antibody level will climb. The ELISA tests used to detect antibodies require a certain threshold level to establish a reasonable degree of reliability before a positive result is produced. And usually, there will be no clinical symptoms before the antibody level becomes high enough to trigger a positive test result. Sometimes it can take a long time for a food (or any other antigen) to reach a point at which it will reliably and consistently produce a positive result. And the higher the antibody level climbs, the more sensitive the immune system becomes toward that food or antigen.
But the point is, some foods will never provoke an immune system response for most of us, whether we eat them regularly or not.
I hope I haven't just confused the issue.
Tex
No, we don't automatically produce antibodies to a food just because we avoid it. We may temporarily lose the ability to produce massive amounts of digestive enzymes for those foods, but that has nothing to do with antibody production (which is necessary for AI-type reactions).
There are only 2 ways that can cause our immune system to begin to produce antibodies against a protein. The first is if any part of its molecular structure more extensive than individual amino acids (in other words, peptides) manage to enter our blood stream because of increased intestinal permeability. The second way is by molecular mimicry, which can occur when certain peptides in a molecule happen to resemble the 33 mer peptide of wheat gliadin (which is the primary peptide that causes virtually all celiacs to react). Peptides that closely resemble the 33 mer peptide can confuse the immune system if it is already completely overwhelmed by a chronic reaction.
We don't begin to react to foods overnight. The first immune system responses to a food sensitivity will be minimal and it will build with each successive exposure. The longer (more frequently) our immune system is exposed to a sensitivity the higher the antibody level will climb. The ELISA tests used to detect antibodies require a certain threshold level to establish a reasonable degree of reliability before a positive result is produced. And usually, there will be no clinical symptoms before the antibody level becomes high enough to trigger a positive test result. Sometimes it can take a long time for a food (or any other antigen) to reach a point at which it will reliably and consistently produce a positive result. And the higher the antibody level climbs, the more sensitive the immune system becomes toward that food or antigen.
But the point is, some foods will never provoke an immune system response for most of us, whether we eat them regularly or not.
I hope I haven't just confused the issue.
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.
-
Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
Terre
I am not Tex but I have a pondering on this
quite a few people here have a good healing journey and then can add things to their diet
and some seem to have limited options to expanding the eating plan, especially in relation to known major triggers like dairy, soy etc.
keeping in mind that every one has different healing rates, and health issues, and the key thing, to heal we need the right nutrients /healthy cells. Long term deficiencies in things like Magnesium have impact on healing rates etc
and as per our recent discussion in the cholestramine thread.. and the article that links excess toxins to high level inflammation reactions to food items - (keeping in mind that magnesium is one of the key items needed for clearing toxins)
I am one of those that has not really been able to expand my eating plan. What i am eating now is pretty much the same as what I was eating 6 years ago. Toxins is a big issues for me, the combo of my health issues and long term various nutrient deficiencies/imbalances have confirmed that I dont clear toxins very well.
I am not Tex but I have a pondering on this
quite a few people here have a good healing journey and then can add things to their diet
and some seem to have limited options to expanding the eating plan, especially in relation to known major triggers like dairy, soy etc.
keeping in mind that every one has different healing rates, and health issues, and the key thing, to heal we need the right nutrients /healthy cells. Long term deficiencies in things like Magnesium have impact on healing rates etc
and as per our recent discussion in the cholestramine thread.. and the article that links excess toxins to high level inflammation reactions to food items - (keeping in mind that magnesium is one of the key items needed for clearing toxins)
I am one of those that has not really been able to expand my eating plan. What i am eating now is pretty much the same as what I was eating 6 years ago. Toxins is a big issues for me, the combo of my health issues and long term various nutrient deficiencies/imbalances have confirmed that I dont clear toxins very well.
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
Thank you Tex and Gabes for responding. I'm just trying to understand the process so maybe I'll hit upon the "magic" protocol to help my body heal.
I've just started the re-mag and hoping for positive results.....starting with a low dose and hoping to get to the recommended dose.
I lowered my dose of Vit D to 2,400 IU since I've been outside this summer, but maybe it's time to go back to 5,000 IU.
I just can't seem to get there with my healing, but still trying.
I'll be curious to see what the pathology dept. at my new GI has to say about my 2013 colonoscopy slides. I see him next Wednesday. I've started tapering the Uceris (doc doesn't know), but am a little anxious if I have to leave the house....not knowing what might happen. I still take Immodium if I have an appt. or have to travel.
I feel that I am definitely a nonresponder to the Entocort and Uceris. I read research that states that approximately 10 to 20% are nonresponders (says that nonresponders should be re-evaluated for other causes of diarrhea).
Thanks for the thorough explanation,
Terre
I've just started the re-mag and hoping for positive results.....starting with a low dose and hoping to get to the recommended dose.
I lowered my dose of Vit D to 2,400 IU since I've been outside this summer, but maybe it's time to go back to 5,000 IU.
I just can't seem to get there with my healing, but still trying.
I'll be curious to see what the pathology dept. at my new GI has to say about my 2013 colonoscopy slides. I see him next Wednesday. I've started tapering the Uceris (doc doesn't know), but am a little anxious if I have to leave the house....not knowing what might happen. I still take Immodium if I have an appt. or have to travel.
I feel that I am definitely a nonresponder to the Entocort and Uceris. I read research that states that approximately 10 to 20% are nonresponders (says that nonresponders should be re-evaluated for other causes of diarrhea).
Thanks for the thorough explanation,
Terre