Hi,
I just found this forum and hope to learn more. My situation is complicated as is typical I suppose. I have hypogammaglobulinemia, which basically means my body doesn't produce antibodies. Diagnosed with colitis as a teen, then hypogammaglobulinemia, malabsorption, then eosinophilic colitis-gastroenteritis, then collagenous colitis. After years of Prednisone, Budesonide, periodic antibiotics, stool tests and diet changes, I stabilized with Budesonide, and then greatly improved with Pepto and immodium 3x/day. Ketotifen also seemed helpful in reducing eosiniphils. It took years to improve, but now all I take is Pepto and immodium. Two BM's a day, fairly normal, but if I cut back on either Pepto or Immodium, I have more problems. I would like to find a dietary solution. I've had no luck with probiotics (Culturelle, VSL#3, etc.). I think bacterial overgrowth is part of my problem, which Pepto may be regulating since I don't produce antibodies in my gut.
Questions:
1. I don't think there are tests for gluten or casein sensitivity for me since I don't produce an antibody response, so I'm wondering how long it takes to determine if I have a sensitivity to those common culprits, how soon would I notice a difference. Currently I eat bread and lactose free milk everyday. I never noticed a problem with cheese, which is mostly casein and fat, but have noticed a lactose sensitivity that Lactaid seems to help with.
2. How should I go about determining sensitivity to other foods? Can you tell if something bothers you right away, or not? It seems to be really difficult to tell what was the 'cause' because it rarely is immediate for me, although drinking whey protein that has some lactose is immediately noticeable (bloating, gas, etc.).
3. Have people found benefit in taking a non-casein, lactose free meal replacement (whey, maltodextrin, glutamine, etc.)?
4. Have people found noticeable benefit from other supplements (aloe, Fish oils, Saccharomyces Boulardii, enzymes for helping with digestion, etc.).
thanks
m
Collag Colitis, immunodeficiency, eosinophils, etc.
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Hi M,
Welcome to the board. Hmmmmmmm. You pose some interesting questions. I have to get ready to go to a funeral, so I'm going to have to cut my response short, but to begin with, as far as food testing goes, you should be able to get some worthwhile information from mediator release testing, (MRT), in combination with the LEAP program. Maybe Mary Beth, (our resident expert, and a licensed dietitian with experience in these diseases), can offer some insight into this option.
Again, welcome aboard, and please feel free to ask anything.
Tex
Welcome to the board. Hmmmmmmm. You pose some interesting questions. I have to get ready to go to a funeral, so I'm going to have to cut my response short, but to begin with, as far as food testing goes, you should be able to get some worthwhile information from mediator release testing, (MRT), in combination with the LEAP program. Maybe Mary Beth, (our resident expert, and a licensed dietitian with experience in these diseases), can offer some insight into this option.
Again, welcome aboard, and please feel free to ask anything.
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.
Wow, that is interesting. I would guess that it's possible for you to have a damaging response to gluten and casein (meaning, causing leaky gut and allowing other systems to be affected), but you might not have the same symptoms that some of the rest of us experience, which would mean we might give you faulty advice.
You may be having changed symptoms as well - most of us never had a problem with gluten or dairy (or others, but those are the big baddies)... up until the time when we did. So you may now be reacting to something that you have tolerated previously. It is interesting that you notice right away when you have lactose... I am guessing that would be a different mechanism (not only because for you it's by definition not an antibody response, but also because the sugar would trigger a response in a different way than the proteins that antibodies go after).
I personally would not trust any whey product. I do use a hemp protein powder on occasion (my husband believes that if we have a smoothie for breakfast without pro-pow, as we call it, he will faint dead away before lunch). When I was first sick, I avoided that as well, but seem to be tolerating it now. I intend to make it a pretty rare inclusion in the diet. Maltodextrin - I don't know, I'm still trying to figure out whether I can eat potatoes ;) I'll get around to "ingredients" when I'm satisfied I have a better understanding of my relationship with "food."
Fish oil, and all oils, made me feel worse when my symptoms were out of control. I have just begun trying it again now, in tiny amounts - will keep you posted. In generally, subtracting is the faster way than adding things, to allow your system to heal. Several people here are using Saccharomyces boulardii. It made me sick when I was first symptomatic (but so did air, water, and light). I just popped one yesterday to see how it would go, and am considering using up this bottle, which I bought for my late mother's battle with C. diff. It worked for that (thankfully) - and because I had a C. diff diagnosis many years ago, I have always suspected that might be a secondary factor in my collagenous colitis. Many other probiotics contain potentially risky ingredients (for me, at least). Before MC I was a probiotics fan, and a fan of digestive enzymes as well. Now I'm approaching those categories with some caution. My philosophy is, "when in doubt, leave it out" - at least until symptoms are stable.
We do have a couple of other members who have IgA deficiency; although that's a different matter, they have been able to determine, other than by antibody testing (in fact, at least one member discovered her IgA deficiency *because* she tested with low antibodies to gluten, and she knows for certain she reacts powerfully to even a tiny bit... Marliss may also have some thoughts for you).
Interesting that ketotifen helps. I hope you hear from Mary Beth soon - her knowledge of the interplay of many factors, including histamines and mast cells, has been very helpful to me, and may be to you as well.
Welcome!
--Sara
You may be having changed symptoms as well - most of us never had a problem with gluten or dairy (or others, but those are the big baddies)... up until the time when we did. So you may now be reacting to something that you have tolerated previously. It is interesting that you notice right away when you have lactose... I am guessing that would be a different mechanism (not only because for you it's by definition not an antibody response, but also because the sugar would trigger a response in a different way than the proteins that antibodies go after).
I personally would not trust any whey product. I do use a hemp protein powder on occasion (my husband believes that if we have a smoothie for breakfast without pro-pow, as we call it, he will faint dead away before lunch). When I was first sick, I avoided that as well, but seem to be tolerating it now. I intend to make it a pretty rare inclusion in the diet. Maltodextrin - I don't know, I'm still trying to figure out whether I can eat potatoes ;) I'll get around to "ingredients" when I'm satisfied I have a better understanding of my relationship with "food."
Fish oil, and all oils, made me feel worse when my symptoms were out of control. I have just begun trying it again now, in tiny amounts - will keep you posted. In generally, subtracting is the faster way than adding things, to allow your system to heal. Several people here are using Saccharomyces boulardii. It made me sick when I was first symptomatic (but so did air, water, and light). I just popped one yesterday to see how it would go, and am considering using up this bottle, which I bought for my late mother's battle with C. diff. It worked for that (thankfully) - and because I had a C. diff diagnosis many years ago, I have always suspected that might be a secondary factor in my collagenous colitis. Many other probiotics contain potentially risky ingredients (for me, at least). Before MC I was a probiotics fan, and a fan of digestive enzymes as well. Now I'm approaching those categories with some caution. My philosophy is, "when in doubt, leave it out" - at least until symptoms are stable.
We do have a couple of other members who have IgA deficiency; although that's a different matter, they have been able to determine, other than by antibody testing (in fact, at least one member discovered her IgA deficiency *because* she tested with low antibodies to gluten, and she knows for certain she reacts powerfully to even a tiny bit... Marliss may also have some thoughts for you).
Interesting that ketotifen helps. I hope you hear from Mary Beth soon - her knowledge of the interplay of many factors, including histamines and mast cells, has been very helpful to me, and may be to you as well.
Welcome!
--Sara
M,
Of course, as Sara mentioned, responses to sugars, (such as lactose), are due to an enzyme deficiency, and not caused by an immune system response. Anyone with enteritis is going to promptly experience a drop in lactase enzyme production, progressively followed by reductions in the production of other enzymes, if the enteritis continues. The reaction to lactose that follows, is simply due to the sugar passing into the colon undigested, where it is "digested" by the process of fermentation, resulting in gas, bloating, cramps, etc. While fermentation reactions of sugars, (due to enzyme deficiencies), are uncomfortable, and aggravating, they do not result in inflammation of the mucosa, and therefore, they are not directly involved in the inflammatory process that cases the syndrome known as MC. Only proteins can provoke inflammatory responses. Of course, when such digestion issues continue on a long-term basis, the resulting disbiosis, (bacterial imbalance problems), can certainly lead to MC.
In the absence of reliable immunoglobulin antibody production capabilities, a journal, containing records of all foods ingested, (with times), and responses, (bowel movements, other clinical symptoms, etc.), might be a valuable tool for tracking down food sensitivities. In general, a food diary is almost always beneficial for anyone with food sensitivities, for that matter, especially for someone with MC, because some of us react promptly to certain foods, while it can take hours to several days, to react to other foods, and on an individual basis, we all seem to have differing reaction times.
As far as testing is concerned, a gene test might be a good place to start, since it would provide information on whether or not you have a common celiac gene, and/or whether you might have double DQ genes that predispose to gluten-sensitivity, (which would suggest a high probability of sensitivity to gluten, casein, and numerous other proteins known to cause food sensitivity issues). Enterolab is a good place to get a gene test, since the cost of their test is roughly half the cost of a similar test by competing labs. They use a Red Cross DNA test, so the results are reliable. As I recall, that test costs $149.00, (or at least it did the last time I checked). Also, a fecal fat stool test would provide information on small intestinal damage, and indicate whether or not you might have a significant malabsorption problem.
Determining the type of gluten-sensitivity that we have with MC, non-celiac gluten-sensitivity, (N-C G-S), by an exclusion diet, can take from 6 months to a year, typically, though a few people see much faster responses. The problem is that gluten antibodies have a very long half-life, so the body continues to produce them for a very long time after gluten is withdrawn from the diet, depending on individual sensitivity. Since you are incapable of producing antibodies, I have no idea how that will coordinate with the determination time involved.
Most people respond to a casein-exclusion diet, or a soy-exclusion diet within a few days to a week or so, but the problem is that if some other allergen that is still in the diet, is causing a reaction, than symptoms will continue, until all food sensitivities are excluded from the diet. IOW, an elimination diet works much more reliably than an exclusion diet.
The point is, with MC, the theoretical probably of the existence of a sensitivity to gluten is roughly 65%, according to research. In the real world, though, (among the members of this discussion board, at least), the probability of gluten-sensitivity appears to be much, much higher - apparently approaching at least 95%, according to our accumulated experience.
Lyn, (bifcus16), has antibody production issues similar to yours. Hopefully, she'll notice your post and be able to offer some insight. She is able to control her symptoms completely by diet, (at least I'm sure that she doesn't use any prescription meds).
Tex
Of course, as Sara mentioned, responses to sugars, (such as lactose), are due to an enzyme deficiency, and not caused by an immune system response. Anyone with enteritis is going to promptly experience a drop in lactase enzyme production, progressively followed by reductions in the production of other enzymes, if the enteritis continues. The reaction to lactose that follows, is simply due to the sugar passing into the colon undigested, where it is "digested" by the process of fermentation, resulting in gas, bloating, cramps, etc. While fermentation reactions of sugars, (due to enzyme deficiencies), are uncomfortable, and aggravating, they do not result in inflammation of the mucosa, and therefore, they are not directly involved in the inflammatory process that cases the syndrome known as MC. Only proteins can provoke inflammatory responses. Of course, when such digestion issues continue on a long-term basis, the resulting disbiosis, (bacterial imbalance problems), can certainly lead to MC.
In the absence of reliable immunoglobulin antibody production capabilities, a journal, containing records of all foods ingested, (with times), and responses, (bowel movements, other clinical symptoms, etc.), might be a valuable tool for tracking down food sensitivities. In general, a food diary is almost always beneficial for anyone with food sensitivities, for that matter, especially for someone with MC, because some of us react promptly to certain foods, while it can take hours to several days, to react to other foods, and on an individual basis, we all seem to have differing reaction times.
As far as testing is concerned, a gene test might be a good place to start, since it would provide information on whether or not you have a common celiac gene, and/or whether you might have double DQ genes that predispose to gluten-sensitivity, (which would suggest a high probability of sensitivity to gluten, casein, and numerous other proteins known to cause food sensitivity issues). Enterolab is a good place to get a gene test, since the cost of their test is roughly half the cost of a similar test by competing labs. They use a Red Cross DNA test, so the results are reliable. As I recall, that test costs $149.00, (or at least it did the last time I checked). Also, a fecal fat stool test would provide information on small intestinal damage, and indicate whether or not you might have a significant malabsorption problem.
Determining the type of gluten-sensitivity that we have with MC, non-celiac gluten-sensitivity, (N-C G-S), by an exclusion diet, can take from 6 months to a year, typically, though a few people see much faster responses. The problem is that gluten antibodies have a very long half-life, so the body continues to produce them for a very long time after gluten is withdrawn from the diet, depending on individual sensitivity. Since you are incapable of producing antibodies, I have no idea how that will coordinate with the determination time involved.
Most people respond to a casein-exclusion diet, or a soy-exclusion diet within a few days to a week or so, but the problem is that if some other allergen that is still in the diet, is causing a reaction, than symptoms will continue, until all food sensitivities are excluded from the diet. IOW, an elimination diet works much more reliably than an exclusion diet.The point is, with MC, the theoretical probably of the existence of a sensitivity to gluten is roughly 65%, according to research. In the real world, though, (among the members of this discussion board, at least), the probability of gluten-sensitivity appears to be much, much higher - apparently approaching at least 95%, according to our accumulated experience.
Lyn, (bifcus16), has antibody production issues similar to yours. Hopefully, she'll notice your post and be able to offer some insight. She is able to control her symptoms completely by diet, (at least I'm sure that she doesn't use any prescription meds).
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.
Incidentally, an elevated eosinophil count in colon biopsy samples can be an indication of not only eosinophilic colitis, but also chronic inflammatory bowel disease, (typically Crohn's disease or UC, rather than MC), or a parasitic infection. Of course, if eosinophils are also present in your esophagus, and/or stomach, then they might be more likely to be associated with MC.
Eosinophils can also be associated with drug-induced MC. If the eosinophil count is higher in your left-side colon, than in your right-side colon - that suggests drug-induced MC.
I can cite references, if you need them.
Tex
Eosinophils can also be associated with drug-induced MC. If the eosinophil count is higher in your left-side colon, than in your right-side colon - that suggests drug-induced MC.
I can cite references, if you need 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.
Thanks for all your comments.
The gene test sounds like a good start. My allergist/immunologist has mentioned that even though I theoretically can't have an 'allergy' response to food (since I don't produce IgE), there are other factors that result in food 'sensitivities', but I don't recall the science about it. I agree that a writing down everything in a journal is a good idea, and I've done that in the past with mixed results. It's often hard to tell cause & effect. Sometimes it can be the amount of something or the osmotic load. For example, when I drink lactose free milk I don't notice any problems, but when I tried a casein protein powder (probably twice the amount of protein), it bothered me.
I'm not familiar with some of the other tests mentioned.. I guess I need to do a serious elimination diet (of gluten and casein) to know for sure.
I'm wondering whether I could also try INCREASING my gluten, which is a lot easier and tastier
, to see if my symptoms get worse. I'm also curious whether simply reducing the load on my gut by replacing one meal with a drink (lactose/casein free protein or branched chain amino's, maltodextrin, banana, medium chain triglycerides, etc.) to see if that makes a difference.
I think people in this forum should also be aware of immunoglobulin levels, especially for their kids. Apparently a lot of pediatricians don't do the blood test for immunoglobulin levels and treat symptoms instead. Fatigue, recurring or chronic gastro problems, sinus and lung problems, could be a sign of an immunodeficiency.
thanks again.
Mike
The gene test sounds like a good start. My allergist/immunologist has mentioned that even though I theoretically can't have an 'allergy' response to food (since I don't produce IgE), there are other factors that result in food 'sensitivities', but I don't recall the science about it. I agree that a writing down everything in a journal is a good idea, and I've done that in the past with mixed results. It's often hard to tell cause & effect. Sometimes it can be the amount of something or the osmotic load. For example, when I drink lactose free milk I don't notice any problems, but when I tried a casein protein powder (probably twice the amount of protein), it bothered me.
I'm not familiar with some of the other tests mentioned.. I guess I need to do a serious elimination diet (of gluten and casein) to know for sure.
I'm wondering whether I could also try INCREASING my gluten, which is a lot easier and tastier
, to see if my symptoms get worse. I'm also curious whether simply reducing the load on my gut by replacing one meal with a drink (lactose/casein free protein or branched chain amino's, maltodextrin, banana, medium chain triglycerides, etc.) to see if that makes a difference.I think people in this forum should also be aware of immunoglobulin levels, especially for their kids. Apparently a lot of pediatricians don't do the blood test for immunoglobulin levels and treat symptoms instead. Fatigue, recurring or chronic gastro problems, sinus and lung problems, could be a sign of an immunodeficiency.
thanks again.
Mike
Mike,
My journal results were really baffling in the beginning. Now that we're back from a recent trip, I'm planning to start fresh, with a hard-core chicken broth (and not much else) beginning, and some serious notes. I think we don't react the same way to the same foods each time, but there are still some useful themes. And some things change over time, to add to the confusion - some members have 'lost' formerly safe foods, and others have been able to add things back when their gut was sufficiently healed.
I'm glad I did the gene tests, though I already knew that gluten and dairy were out for me from decisive experience. But I was really surprised that I've been a genetically gluten-sensitive person all my life, just waiting for the right trigger. (This means *both* of my parents had at least one gene for one type of GS or another, and I hope means that I might still be able to avoid some of their specific ailments of old age - if only so I can live long enough to have others.) I've shared the info with my brother & his kids (only my niece responded with interest and the sense it could be relevant to her - I'm pretty confident she'll let me know if she ever has symptoms, and I hope it doesn't happen).
I hope they're enlightening for you, if you decide to pursue them.
Sara
My journal results were really baffling in the beginning. Now that we're back from a recent trip, I'm planning to start fresh, with a hard-core chicken broth (and not much else) beginning, and some serious notes. I think we don't react the same way to the same foods each time, but there are still some useful themes. And some things change over time, to add to the confusion - some members have 'lost' formerly safe foods, and others have been able to add things back when their gut was sufficiently healed.
I'm glad I did the gene tests, though I already knew that gluten and dairy were out for me from decisive experience. But I was really surprised that I've been a genetically gluten-sensitive person all my life, just waiting for the right trigger. (This means *both* of my parents had at least one gene for one type of GS or another, and I hope means that I might still be able to avoid some of their specific ailments of old age - if only so I can live long enough to have others.) I've shared the info with my brother & his kids (only my niece responded with interest and the sense it could be relevant to her - I'm pretty confident she'll let me know if she ever has symptoms, and I hope it doesn't happen).
I hope they're enlightening for you, if you decide to pursue them.
Sara
Mike,
Those of us with normal antibody production capabilities usually react to very small quantities of gluten, (we react to either one or more of the gliadin fractions, or one or more of the glutenin fractions in gluten). Typically, our reaction threshold, (the personal threshold, above which we will react), will be in the range of 50 to 500 parts per million, (ppm), similar to celiacs. Some of us react to contamination levels below the so-called "gluten-free" certification level, (20 ppm), and of course, a few of us may be able to tolerate more than 500 ppm, before we start to react.
The point is, reactions to any quantity of gluten above our minimum threshold level, will be very similar, regardless of the amount of gluten ingested. IOW, twice as sick as "sick as a dog" is kind of a moot point. As a result, I doubt that you would be able to derive any useful information from a gluten "overdose", unless you happen to have an unusually high tolerance threshold for gluten. Still, these are uncharted waters for someone incapable of antibody production, so for all I know, YMMV.
In fact, since you can't produce antibodies, I wonder if all this is irrelevant. For all I know, you might even be incapable of producing cytokines, and other immune system mediators. If that's the case, then your food sensitivity involvement might be pretty much dominated by the degranulation of mast cells, and histamine-based reactions, (and, of course, the eosinophils). If so, that's a whole 'nother ball game.
If that's the case, then this could explain the eosinophil involvement, because both mast cells and eosinophils release leukotrienes, which are powerful inflammatory mediators. Leukotrienes are responsible for strong muscular contractions of the intestines, (and, of course, they cause contractions of the trachea, often resulting in asthma, thus explaining the respiratory involvement).
Tex
Those of us with normal antibody production capabilities usually react to very small quantities of gluten, (we react to either one or more of the gliadin fractions, or one or more of the glutenin fractions in gluten). Typically, our reaction threshold, (the personal threshold, above which we will react), will be in the range of 50 to 500 parts per million, (ppm), similar to celiacs. Some of us react to contamination levels below the so-called "gluten-free" certification level, (20 ppm), and of course, a few of us may be able to tolerate more than 500 ppm, before we start to react.
The point is, reactions to any quantity of gluten above our minimum threshold level, will be very similar, regardless of the amount of gluten ingested. IOW, twice as sick as "sick as a dog" is kind of a moot point. As a result, I doubt that you would be able to derive any useful information from a gluten "overdose", unless you happen to have an unusually high tolerance threshold for gluten. Still, these are uncharted waters for someone incapable of antibody production, so for all I know, YMMV.
In fact, since you can't produce antibodies, I wonder if all this is irrelevant. For all I know, you might even be incapable of producing cytokines, and other immune system mediators. If that's the case, then your food sensitivity involvement might be pretty much dominated by the degranulation of mast cells, and histamine-based reactions, (and, of course, the eosinophils). If so, that's a whole 'nother ball game.
If that's the case, then this could explain the eosinophil involvement, because both mast cells and eosinophils release leukotrienes, which are powerful inflammatory mediators. Leukotrienes are responsible for strong muscular contractions of the intestines, (and, of course, they cause contractions of the trachea, often resulting in asthma, thus explaining the respiratory involvement).
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.