In should have paid more attention when I was teaching Mendel to my kids this year!
Okay, if you have two people, each with one celiac gene...the chances are that at least one offspring with have two celiac genes. (Like me, or those of us who tested positive for both genes)
What if a person has only one verified gene...like my children, for instance. Is one gene for celiac enough to cause the autoimmune reaction? Does that make them celiac?
We are going to get them tested, but I'm just sitting here being curious.
BTW, 8 days gluten/ soy free with no D or vomiting. Felt like poo the last 5 days, but then suddenly felt wonderful this morning. Found out I was inadvertantl, soy"ed" yesterday. Urgh...just like a little fix or something.
Genetic question
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Genetic question
Trace
Hi Trace,
It's good to see that you've been able to pinpoint your troublesome diet items, and get your life back.
If I remember my "probability and statistics" correctly, from engineering school - if each parent has one celiac gene, then theoretically, one out of every four of their offspring will have two celiac genes, one will have none, and two will have one each.
However, having one celiac gene, (or even having two celiac genes), says nothing about the actual probability of ever developing celiac disease. Obviously, someone with two celiac genes is much more likely to develop the disease than someone with one celiac gene, but there is no guarantee that either one will actually end up with celiac disease.
The presence of one or more celiac genes makes one a prime candidate for the disease, but does not guarantee that it will happen. IOW, the presence of one or more celiac genes fulfills a necessary condition, but is not sufficient, by itself, to establish the disease. An external, (separate), "trigger" is necessary, in order for the disease to become established. Actually, it is claimed that it is not even necessary to have a celiac gene, in order to develop the disease, but almost surely, someone in that unusual situation has another, uncatalogued, (rare), type of celiac gene that "qualifies" them for the disease.
The term "celiac disease", or "celiac sprue" refers to a rigidly defined medical condition, in which a patient presents with certain antibodies that can be detected by a blood test, together with biopsies taken during an upper endoscopy, that reveal at least a certain minimal degree of villous atrophy, when examined under the microscope.
Most of us with MC, will pass the classic celiac tests, so by default, we are not considered to be celiacs. However, many/most of us are at least as sensitive to gluten as celiacs, and some of us are even more sensitive than celiacs. We suffer intestinal damage, but not necessarily villus atrophy, and we do produce antibodies to gluten, but the classic celiac blood tests are not accurate enough to detect them, in most cases. IOW, we are officially excluded from the category of celiac disease, by the outdated definition of celiac disease.
There are other, non-celiac genes, of course, that predispose us to gluten sensitivity. Some of us have celiac genes, some have non-celiac, (but still gluten-sensitive) genes, and some of us have both. As with the celiac genes, though, just having a gene that predisposes us to gluten sensitivity, does not guarantee that we will be gluten sensitive. Again, the disease must be "triggered" by some "external", (external to the genes, that is), event, such as the use of NSAIDs, stopping smoking, bacterial infection, etc.
Most people in the general population have either one or more copies of a celiac, or a non-celiac, (but gluten-sensitive), gene, but they never develop celiac disease, or MC. Presumably, this is simply because the right conditions to trigger the disease never occur.
The question, of course, is whether being forewarned about the presence of the genes, might enable someone to prevent ever developing the disease during their lifetime. I'm not aware of any research that has been done on this line of thought, but it may have merit. The sixty-four dollar question, though, is whether someone who knows that they have a gene that predisposes them to MC, for example, is going to be willing to go through life without eating gluten, using NSAIDs, antibiotics, proton pump inhibitors, etc., in order to cut their risk of developing the disease. Likewise, is someone with a celiac gene, going to be willing to strictly avoid gluten all their life, in order to preempt the disease, before they ever experience any symptoms. Our experience here, based on how difficult it seems to be, to convince people to even try the GF diet, after they have the symptoms, suggests that no one is likely to adopt the diet until they are pretty much forced to, in order to get their life back. See the problem?
I hope I haven't just confused the issue even more, because it definitely is a confusing concept. If I need to clarify something that I have said here, please don't hesitate to ask.
Tex
It's good to see that you've been able to pinpoint your troublesome diet items, and get your life back.
If I remember my "probability and statistics" correctly, from engineering school - if each parent has one celiac gene, then theoretically, one out of every four of their offspring will have two celiac genes, one will have none, and two will have one each.
However, having one celiac gene, (or even having two celiac genes), says nothing about the actual probability of ever developing celiac disease. Obviously, someone with two celiac genes is much more likely to develop the disease than someone with one celiac gene, but there is no guarantee that either one will actually end up with celiac disease.
The presence of one or more celiac genes makes one a prime candidate for the disease, but does not guarantee that it will happen. IOW, the presence of one or more celiac genes fulfills a necessary condition, but is not sufficient, by itself, to establish the disease. An external, (separate), "trigger" is necessary, in order for the disease to become established. Actually, it is claimed that it is not even necessary to have a celiac gene, in order to develop the disease, but almost surely, someone in that unusual situation has another, uncatalogued, (rare), type of celiac gene that "qualifies" them for the disease.
The term "celiac disease", or "celiac sprue" refers to a rigidly defined medical condition, in which a patient presents with certain antibodies that can be detected by a blood test, together with biopsies taken during an upper endoscopy, that reveal at least a certain minimal degree of villous atrophy, when examined under the microscope.
Most of us with MC, will pass the classic celiac tests, so by default, we are not considered to be celiacs. However, many/most of us are at least as sensitive to gluten as celiacs, and some of us are even more sensitive than celiacs. We suffer intestinal damage, but not necessarily villus atrophy, and we do produce antibodies to gluten, but the classic celiac blood tests are not accurate enough to detect them, in most cases. IOW, we are officially excluded from the category of celiac disease, by the outdated definition of celiac disease.
There are other, non-celiac genes, of course, that predispose us to gluten sensitivity. Some of us have celiac genes, some have non-celiac, (but still gluten-sensitive) genes, and some of us have both. As with the celiac genes, though, just having a gene that predisposes us to gluten sensitivity, does not guarantee that we will be gluten sensitive. Again, the disease must be "triggered" by some "external", (external to the genes, that is), event, such as the use of NSAIDs, stopping smoking, bacterial infection, etc.
Most people in the general population have either one or more copies of a celiac, or a non-celiac, (but gluten-sensitive), gene, but they never develop celiac disease, or MC. Presumably, this is simply because the right conditions to trigger the disease never occur.
The question, of course, is whether being forewarned about the presence of the genes, might enable someone to prevent ever developing the disease during their lifetime. I'm not aware of any research that has been done on this line of thought, but it may have merit. The sixty-four dollar question, though, is whether someone who knows that they have a gene that predisposes them to MC, for example, is going to be willing to go through life without eating gluten, using NSAIDs, antibiotics, proton pump inhibitors, etc., in order to cut their risk of developing the disease. Likewise, is someone with a celiac gene, going to be willing to strictly avoid gluten all their life, in order to preempt the disease, before they ever experience any symptoms. Our experience here, based on how difficult it seems to be, to convince people to even try the GF diet, after they have the symptoms, suggests that no one is likely to adopt the diet until they are pretty much forced to, in order to get their life back. See the problem?
I hope I haven't just confused the issue even more, because it definitely is a confusing concept. If I need to clarify something that I have said here, please don't hesitate to ask.
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.
Yep, that answered my question. (I've always hated probability problems...thanks for figuring it out!) We're going to have them tested, just to be safe. If there's both genes present, we'll all go gluten free...just one, most likely not. Me? I'm gluten free/soy free for life.
My rheumatologist reviewed her records...three blood tests showed up negative for celiac. The last blood test was in 2006 (when the dx for MC and fibromyalgia was made.) We're doing another one now to see if the IgA (is that the one) is present. It was in the stool test. She told me that based on the rash, the symptoms, the genes...she would consider me a "celiac". But, let's do the test for curiosity's sake.
Thanks, Tex! You always provide such thorough answers.
My rheumatologist reviewed her records...three blood tests showed up negative for celiac. The last blood test was in 2006 (when the dx for MC and fibromyalgia was made.) We're doing another one now to see if the IgA (is that the one) is present. It was in the stool test. She told me that based on the rash, the symptoms, the genes...she would consider me a "celiac". But, let's do the test for curiosity's sake.
Thanks, Tex! You always provide such thorough answers.
Trace
Hi Trace,
You've got "the" rash? If you have dermatitus herpetiformis, then you most definitely have celiac sprue. The problem is, the blood tests are so insensitive, that if you have been GF for more than a couple of weeks before the blood is drawn, the test will probably be negative. The stool test will detect gliadin antibodies for up to a year after going GF, but the blood tests normally won't detect them after a few weeks on the diet - they definitely won't detect them after a few months on the GF diet. That's always been the problem with the blood tests - they just aren't sensitive enough.
You're very welcome,
Tex
P S It just dawned on me that you have two celiac genes. That means that if your husband happens to have one, then half of your children will have one celiac gene, and the other half will have two celiac genes. If your husband has no celiac genes, then all of your children will have one celiac gene.
You've got "the" rash? If you have dermatitus herpetiformis, then you most definitely have celiac sprue. The problem is, the blood tests are so insensitive, that if you have been GF for more than a couple of weeks before the blood is drawn, the test will probably be negative. The stool test will detect gliadin antibodies for up to a year after going GF, but the blood tests normally won't detect them after a few weeks on the diet - they definitely won't detect them after a few months on the GF diet. That's always been the problem with the blood tests - they just aren't sensitive enough.
You're very welcome,
Tex
P S It just dawned on me that you have two celiac genes. That means that if your husband happens to have one, then half of your children will have one celiac gene, and the other half will have two celiac genes. If your husband has no celiac genes, then all of your children will have one celiac gene.
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.
Yep..I've got the rash..right on the front of my legs...looks horrible. It really just developed within the last 10 months...and spread. HOpe it goes away. From what I've read, going GF will dramatically improve it.
That's what I figured..that the kids would get at least one gene. I worry that they will develop celiac...and knowing what I know now about this disease, if they test positive for both genes, they WILL be gluten free.
So, Tex, did you answer this before for me? Am I still considered as having MC or was that dx a precursor to having celiac? Are they one and the same? Because I reacted with both intolerance and with autoimmune repsonse to gluten. So, that's the difference between celiac and intolerance?
If that's the case, then, based on the information I've gathered for MC and from what I've read here, a GF diet would be the answer to curing the issue.....
That's what I figured..that the kids would get at least one gene. I worry that they will develop celiac...and knowing what I know now about this disease, if they test positive for both genes, they WILL be gluten free.
So, Tex, did you answer this before for me? Am I still considered as having MC or was that dx a precursor to having celiac? Are they one and the same? Because I reacted with both intolerance and with autoimmune repsonse to gluten. So, that's the difference between celiac and intolerance?
If that's the case, then, based on the information I've gathered for MC and from what I've read here, a GF diet would be the answer to curing the issue.....
Trace
Theoretically, at least, the GF diet should completely eliminate the DH rash. If it doesn't, please let us know, because that would mean that something is definitely wrong.
I agree with you about adopting the diet before the disease develops. If I had had any idea that wheat could make me as sick as it did, and do so much damage to my body, I definitely would have adopted the diet many years ago. Unfortunately, I had never even heard of celiac disease, or gluten sensitivity, before I became sick as a dog, and couldn't figure out why. Also, it's a documented fact that people who follow the gluten free diet live longer than the general population, so obviously, it's a healthy diet, and that's another good reason to adopt the GF lifestyle.
Yes, you still have MC, provided that you were originally diagnosed by a pathologist who examined slides made from biopsies of your colon, under a microscope, and the pathologist determined that you had significant lymphocytic infiltration between the cells of the epithelium of your colon, (LC), and/or he or she found thickened collagen bands in sub-epithelial layers, (CC).
We have at least several members who were originally diagnosed with celiac sprue, but the GF diet didn't resolve their symptons, and they were then subsequently diagnosed with MC. None of them regularly post anymore, (they hang out on the celiac boards), but I can tell you who some of them are, if you feel that they might be able to offer any insight that could be helpful to you. In Dr. Fine's opinion, (and I agree with him), any patient with refractive sprue, (that is, celiac sprue that refuses to resolve on a GF diet), also has MC, and probably has other food intolerances that are preventing her or him from achieving remission on the GF diet.
Gluten sensitivity comes first, in both celiac disease, and MC. With celiac disease, the intestinal damage is targeted primarily at the small intestine, and it results in villous atrophy, which causes a nutrient malabsorption problem. After sufficient damage accrues to the villi of the small intestine, a doctor can then diagnose celiac disease.
With MC, the target of the reaction is primarily the colon, (though the small intestine is also affected in many of us, and when it is, we also have a malabsorption problem), and it results in inflammation on a microscopic level, (IOW, the inflammation is not obvious to the naked eye, but can be detected under a microscope). With the other IBDs, the inflammation is visible to the naked eye, because it results in gross lesions in the epithelia of the intestines. Incidentally, most patients with UC or Crohn's, are also gluten sensitive, but that fact seems to be very poorly understood by most doctors.
Therefore, gluten sensitivity is definitely a precursor to celiac disease. Whether or not MC is a precurser to celiac disease is an extremely good question. The only people I know who have both conditions, were diagnosed with celiac disease first, but that doesn't mean that they didn't have MC first. You can't diagnose MC, unless you take biopsies of the colon, and that is not commonly done, unless a doctor suspects MC. The "catch-22" is that MC is almost never "suspected", because it is considered to be a rare disease. Personally, I think that it is a "rare" disease, only because it is rarely suspected, and therefore rarely tested for, so consequently it is rarely found. Duh!
IOW, I have a hunch that those individuals who were diagnosed with celiac disease first, and MC later, probably had MC first, but a simple blood test revealed celiac disease, so the GI doc never bothered to check biopsies from the colon, until the patients complained that the GF diet did not resolve their symptoms. (Colonoscopies are expensive, and somewhat risky, so they are never used as a screening test, whereas blood tests are easy, and relatively cheap, so they are always used first). Once a doctor finds celiac disease, most of them will stop looking, obviously.
Regarding the difference between celiac disease and gluten sensitivity:
Gluten sensitivity simply means that the ingestion of food that contains gluten, will cause an adverse reaction, (usually involving severe D, or C, and other associated symptoms). In the case of celiac disease, a concisely defined set of conditions must be met, before a diagnosis can be "officially" declared. First, a blood test for antigliadin antibodies, anti-endomysial antibodies, or anti-tissue transglutaminase antibodies must be positive, and second, at least one biopsy from the small intestine must show evidence of villous atrophy, when examined under the microscope. Tissue transglutaminase is the auto-antigen in celiac disease against which endomysial antibodies are directed, and the anti-tissue transglutaminase test is currently the preferred blood test, since it seems to be the most sensitive.
Theoretically, a GF diet should control all the symptoms of celiac disease. With MC, however, since there may be other food sensitivities involved, other foods must usually be eliminated from the diet, in addition to gluten.
Tex
I agree with you about adopting the diet before the disease develops. If I had had any idea that wheat could make me as sick as it did, and do so much damage to my body, I definitely would have adopted the diet many years ago. Unfortunately, I had never even heard of celiac disease, or gluten sensitivity, before I became sick as a dog, and couldn't figure out why. Also, it's a documented fact that people who follow the gluten free diet live longer than the general population, so obviously, it's a healthy diet, and that's another good reason to adopt the GF lifestyle.
Yes, you still have MC, provided that you were originally diagnosed by a pathologist who examined slides made from biopsies of your colon, under a microscope, and the pathologist determined that you had significant lymphocytic infiltration between the cells of the epithelium of your colon, (LC), and/or he or she found thickened collagen bands in sub-epithelial layers, (CC).
We have at least several members who were originally diagnosed with celiac sprue, but the GF diet didn't resolve their symptons, and they were then subsequently diagnosed with MC. None of them regularly post anymore, (they hang out on the celiac boards), but I can tell you who some of them are, if you feel that they might be able to offer any insight that could be helpful to you. In Dr. Fine's opinion, (and I agree with him), any patient with refractive sprue, (that is, celiac sprue that refuses to resolve on a GF diet), also has MC, and probably has other food intolerances that are preventing her or him from achieving remission on the GF diet.
Gluten sensitivity comes first, in both celiac disease, and MC. With celiac disease, the intestinal damage is targeted primarily at the small intestine, and it results in villous atrophy, which causes a nutrient malabsorption problem. After sufficient damage accrues to the villi of the small intestine, a doctor can then diagnose celiac disease.
With MC, the target of the reaction is primarily the colon, (though the small intestine is also affected in many of us, and when it is, we also have a malabsorption problem), and it results in inflammation on a microscopic level, (IOW, the inflammation is not obvious to the naked eye, but can be detected under a microscope). With the other IBDs, the inflammation is visible to the naked eye, because it results in gross lesions in the epithelia of the intestines. Incidentally, most patients with UC or Crohn's, are also gluten sensitive, but that fact seems to be very poorly understood by most doctors.
Therefore, gluten sensitivity is definitely a precursor to celiac disease. Whether or not MC is a precurser to celiac disease is an extremely good question. The only people I know who have both conditions, were diagnosed with celiac disease first, but that doesn't mean that they didn't have MC first. You can't diagnose MC, unless you take biopsies of the colon, and that is not commonly done, unless a doctor suspects MC. The "catch-22" is that MC is almost never "suspected", because it is considered to be a rare disease. Personally, I think that it is a "rare" disease, only because it is rarely suspected, and therefore rarely tested for, so consequently it is rarely found. Duh!
IOW, I have a hunch that those individuals who were diagnosed with celiac disease first, and MC later, probably had MC first, but a simple blood test revealed celiac disease, so the GI doc never bothered to check biopsies from the colon, until the patients complained that the GF diet did not resolve their symptoms. (Colonoscopies are expensive, and somewhat risky, so they are never used as a screening test, whereas blood tests are easy, and relatively cheap, so they are always used first). Once a doctor finds celiac disease, most of them will stop looking, obviously.
Regarding the difference between celiac disease and gluten sensitivity:
Gluten sensitivity simply means that the ingestion of food that contains gluten, will cause an adverse reaction, (usually involving severe D, or C, and other associated symptoms). In the case of celiac disease, a concisely defined set of conditions must be met, before a diagnosis can be "officially" declared. First, a blood test for antigliadin antibodies, anti-endomysial antibodies, or anti-tissue transglutaminase antibodies must be positive, and second, at least one biopsy from the small intestine must show evidence of villous atrophy, when examined under the microscope. Tissue transglutaminase is the auto-antigen in celiac disease against which endomysial antibodies are directed, and the anti-tissue transglutaminase test is currently the preferred blood test, since it seems to be the most sensitive.
Theoretically, a GF diet should control all the symptoms of celiac disease. With MC, however, since there may be other food sensitivities involved, other foods must usually be eliminated from the diet, in addition to gluten.
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.
That's food for thought! I'm so used to thinking in terms of the MC, the celiac is really just not sunk in yet.
I was biopsied in 2005 in the hopes of determining if there was Crohn's. I know that biopsies were taken along the whole digestive tract, and the pathologist's report dx MC, but I don't know which sample showed that. A subsequent sigmoidoscopy showed no visual inflammation, but there were no biopsies done. (That was the gastro who told me that he didn't believe the pathology report..."whatever the case" he said "it won't kill you. Use peptobismol." I won't have another scope to look for damage. Quite frankly, I assume it's there based on the malabsorption numbers.
So, what's your suggestion beyond the gluten free diet for MC?
I was sick yesterday (but nowhere near what I had been!) because I got a bit of soy in my cheese on Th. (Vomiting...first time in 10 days!) v So, I found out my "turnaround" time is about 36-40 hours. My numbers for egg and milk were below ten, but I think I might need to give them up for a bit. I've been eating cottage cheese, something I'd given up b/c I thought I was not able to eat it. I'll do some more dietary research for MC...maybe I need to give up coffee and coke? Just the caffiene part of it.
I was biopsied in 2005 in the hopes of determining if there was Crohn's. I know that biopsies were taken along the whole digestive tract, and the pathologist's report dx MC, but I don't know which sample showed that. A subsequent sigmoidoscopy showed no visual inflammation, but there were no biopsies done. (That was the gastro who told me that he didn't believe the pathology report..."whatever the case" he said "it won't kill you. Use peptobismol." I won't have another scope to look for damage. Quite frankly, I assume it's there based on the malabsorption numbers.
So, what's your suggestion beyond the gluten free diet for MC?
I was sick yesterday (but nowhere near what I had been!) because I got a bit of soy in my cheese on Th. (Vomiting...first time in 10 days!) v So, I found out my "turnaround" time is about 36-40 hours. My numbers for egg and milk were below ten, but I think I might need to give them up for a bit. I've been eating cottage cheese, something I'd given up b/c I thought I was not able to eat it. I'll do some more dietary research for MC...maybe I need to give up coffee and coke? Just the caffiene part of it.
Well, if you're going to treat them by diet, the treatment for both celiac disease and MC, is pretty much the same - cut out gluten. Except, of course, with MC, there are almost always some other foods that have to be eliminated, (at least for a year or so, for most of us).
I would think that you should be OK with eggs, in light of your test result. There was a time, while I was trying to figure out what I could eat without reacting, that hard-boiled eggs were a major part of my diet (along with meat, potatoes, and a bit of rice). I often suspected eggs, but after I tested negative to Enterolab's egg intolerance test, I stopped suspecting them.
Even though you're not intolerant to casein, until your gut heals, you are almost certainly lactose intolerant, due to your small intestine's inability to produce adequate amounts of the lactase enzyme, (because of the physical damage caused by the gluten). Cheese, (especially the aged cheeses), are relatively low in lactose, so they may possibly work okay for you, along with yogurt, and lactose-free milk. If they seem to cause borderline problems, you can do what I did for a while - add a little cocoa whenever you eat dairy products. For some reason or other, cocoa magnifies the effectiveness of the lactase that your body is producing, by a factor of about six. IOW, if your small intestine is still producing at least a sixth of the normal amount of lactose enzyme, then you should be able to digest dairy products, with the aid of a little cocoa. It doesn't take much to do the job. Also, lactose intolerance is dependent on the amount consumed. A small to moderate amount of dairy products may be easy for you to digest, whereas more might cause problems, as your digestive system runs short of lactase.
The medical "experts" recommend that MC patients give up caffeine, based on the fact that it is a secretagogue, (IOW, it stimulates secretions), but most of us have found that giving it up doesn't seem to make much difference. Usually, for most of us, it is the milk in the coffee, and/or the sugar in the cokes, (or the sugar substitute - aspartame is a big no-no for most of us, along with sugar alcohols, such as sorbitol, which can cause bloating and diarrhea, even for people who don't have MC), that causes problems, rather than the caffeine itself. Most of us decide whether or not to cut out caffeine drinks, based on how they seem to affect us, since they usually have a fairly prompt effect, if they do not agree with us.
I suspect that the medical "experts" may be confused by the fact that MC can cause a unique type of diarrhea know as "secretory diarrhea", and they assume that caffeine can exacerbate that effect. With secretory diarrhea, the colon actually secretes massive amounts of water into the lumen, rather than taking it out, the way it normally does, and this is what causes such high volume D, that MCers sometimes experience. IMO, while caffeine certainly might have some minimal, (theoretical), effect on this phenomenon, I seriously doubt that you would notice a significant difference on a practical level.
Fine-tuning the diet is definitely a trial and error process, but we all have to go through that, unless we want to stick with a very minimal, "ultra-safe" menu. For starters, Polly probably has the most intolerances of anyone here, so if you look at the list of intolerances that she has listed in her profile, (beneath her avatar, in all her posts), you can compare that with your own "known" intolerances and "tested safe" food items, and get a pretty good idea of where to start.
It can be tough to fine tune the diet sometimes, because occasionally, we will get sick and blame it on the wrong item, and sometimes we get sick for some unknown reason, (heck, "normal" people sometimes get D, and don't know why, and they don't even have MC to blame it on). A food diary helps, but it still requires a lot of study, and some "judgment calls", to work everything out.
Tex
I never cease to be amused, (and bemused), by the attitude that most GI docs have about MC. They consider it to be some sort of minor annoyance - "just a little diarrhea". It's a real shame that they can't all experience the "pleasure" of living with MC for at least a year or two. It would drastically change their attitude toward it.Trace wrote:"whatever the case" he said "it won't kill you. Use peptobismol."
I would think that you should be OK with eggs, in light of your test result. There was a time, while I was trying to figure out what I could eat without reacting, that hard-boiled eggs were a major part of my diet (along with meat, potatoes, and a bit of rice). I often suspected eggs, but after I tested negative to Enterolab's egg intolerance test, I stopped suspecting them.
Even though you're not intolerant to casein, until your gut heals, you are almost certainly lactose intolerant, due to your small intestine's inability to produce adequate amounts of the lactase enzyme, (because of the physical damage caused by the gluten). Cheese, (especially the aged cheeses), are relatively low in lactose, so they may possibly work okay for you, along with yogurt, and lactose-free milk. If they seem to cause borderline problems, you can do what I did for a while - add a little cocoa whenever you eat dairy products. For some reason or other, cocoa magnifies the effectiveness of the lactase that your body is producing, by a factor of about six. IOW, if your small intestine is still producing at least a sixth of the normal amount of lactose enzyme, then you should be able to digest dairy products, with the aid of a little cocoa. It doesn't take much to do the job. Also, lactose intolerance is dependent on the amount consumed. A small to moderate amount of dairy products may be easy for you to digest, whereas more might cause problems, as your digestive system runs short of lactase.
The medical "experts" recommend that MC patients give up caffeine, based on the fact that it is a secretagogue, (IOW, it stimulates secretions), but most of us have found that giving it up doesn't seem to make much difference. Usually, for most of us, it is the milk in the coffee, and/or the sugar in the cokes, (or the sugar substitute - aspartame is a big no-no for most of us, along with sugar alcohols, such as sorbitol, which can cause bloating and diarrhea, even for people who don't have MC), that causes problems, rather than the caffeine itself. Most of us decide whether or not to cut out caffeine drinks, based on how they seem to affect us, since they usually have a fairly prompt effect, if they do not agree with us.
I suspect that the medical "experts" may be confused by the fact that MC can cause a unique type of diarrhea know as "secretory diarrhea", and they assume that caffeine can exacerbate that effect. With secretory diarrhea, the colon actually secretes massive amounts of water into the lumen, rather than taking it out, the way it normally does, and this is what causes such high volume D, that MCers sometimes experience. IMO, while caffeine certainly might have some minimal, (theoretical), effect on this phenomenon, I seriously doubt that you would notice a significant difference on a practical level.
Fine-tuning the diet is definitely a trial and error process, but we all have to go through that, unless we want to stick with a very minimal, "ultra-safe" menu. For starters, Polly probably has the most intolerances of anyone here, so if you look at the list of intolerances that she has listed in her profile, (beneath her avatar, in all her posts), you can compare that with your own "known" intolerances and "tested safe" food items, and get a pretty good idea of where to start.
It can be tough to fine tune the diet sometimes, because occasionally, we will get sick and blame it on the wrong item, and sometimes we get sick for some unknown reason, (heck, "normal" people sometimes get D, and don't know why, and they don't even have MC to blame it on). A food diary helps, but it still requires a lot of study, and some "judgment calls", to work everything out.
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.
Whew! I cringed at the thought of giving up coffee...I use Splenda..which I will give up, right now. I use that only in my coffee b/c I don't like the taste of sugar in my coffee. But, how ridiculous is that when I drink regular coke and eat candy???!!
I know that there are some foods that are perfectly safe for me, and I know of those that immediately aren't. I have documented my typical response time to 30-48 hours, so I will start a food diary to help me.
Thanks Tex. Mr. Bill (my DH) and I are learning as we go!
I know that there are some foods that are perfectly safe for me, and I know of those that immediately aren't. I have documented my typical response time to 30-48 hours, so I will start a food diary to help me.
Thanks Tex. Mr. Bill (my DH) and I are learning as we go!
Trace
Yep, Splenda is another sugar substitute that is fast establishing a reputation for causing cramps and diarrhea. It seems that there are no "free lunches", in the food world. Everything that's hyped as being sugar-free, or low-fat, or whatever, usually turns out to be carrying a lot of unwanted features, as well.
You're most welcome. It's great that that your DH is interested in helping - that should make life a heck of a lot easier, when dealing with the lifestyle changes that are necessary to accommodate MC, particularly the dietary changes.
Please continue to keep us informed on your progress, because that's how we learn what works, and what doesn't. Feedback provides us with the necessary insight to estimate the odds, when someone asks whether a particular approach might work for them.
I wish you the best of luck with fine tuning your treatment program - you're well on your way to getting your life back.
Tex
You're most welcome. It's great that that your DH is interested in helping - that should make life a heck of a lot easier, when dealing with the lifestyle changes that are necessary to accommodate MC, particularly the dietary changes.
Please continue to keep us informed on your progress, because that's how we learn what works, and what doesn't. Feedback provides us with the necessary insight to estimate the odds, when someone asks whether a particular approach might work for them.
I wish you the best of luck with fine tuning your treatment program - you're well on your way to getting your life back.
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.