Visit the Microscopic Colitis Foundation Website
Here they are:
A) Gluten Sensitivity Stool and Gene Panel Complete *Best test/best value
Fecal Antigliadin IgA 62 (Normal Range <10 Units)
Fecal Antitissue Transglutaminase IgA 40 Units (Normal Range <10 Units)
Quantitative Microscopic Fecal Fat Score 381 Units (Normal Range <300 Units)
Fecal anti-casein (cow's milk) IgA antibody 16 Units (Normal Range <10 Units)
HLA-DQB1 Molecular analysis, Allele 1 0501
HLA-DQB1 Molecular analysis, Allele 2 0602
Serologic equivalent: HLA-DQ 1,1 (Subtype 5,6)
Tex - please enlighten me! Is this what you expected? :)[/b]
Camryn's Enterolab Results are in!
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
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Camryn'sMommy
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Camryn's Enterolab Results are in!
Mommy to Camryn - 8 years old - dx'd with LC 8/08
Hi Camryn's mom!
Guess what? I have exactly the same genetic profile as your daughter. (See the poll forum for eveyone's genetic results). And as you can see, I have multiple intolerances, as do others (like Gloria) who have this "double DQ1" pattern. My major intolerances are gluten, dairy, corn, soy, and eggs (I just figured eggs out recently.) Minor intolerances are tomato, citrus, and chocolate, but I am finding that the longer I am off eggs the better I can tolerate the minor ones.
You might want to have Enterolab test for soy, yeast, and eggs in order to know for sure. I believe they save the poop for a while and can use the same specimen for additional tests.
You might google "double DQ1 genes" to see what comes up (not a lot, unfortunately). The good news is that if I avoid all of my intolerances I remain in complete remission without any meds. So there is hope for Camryn. It takes longer for us DoubleDQ1s to achieve remssion, but once we do, we're just fine! The trick will be to figure out tasty things for her to eat. With double DQ1 genes, the caveman diet seem to work quite well. Have you read anything about it?
I'm sure you're relieved to be getting a handle on her problems. Keep us posted.
Love,
Polly
Guess what? I have exactly the same genetic profile as your daughter. (See the poll forum for eveyone's genetic results). And as you can see, I have multiple intolerances, as do others (like Gloria) who have this "double DQ1" pattern. My major intolerances are gluten, dairy, corn, soy, and eggs (I just figured eggs out recently.) Minor intolerances are tomato, citrus, and chocolate, but I am finding that the longer I am off eggs the better I can tolerate the minor ones.
You might want to have Enterolab test for soy, yeast, and eggs in order to know for sure. I believe they save the poop for a while and can use the same specimen for additional tests.
You might google "double DQ1 genes" to see what comes up (not a lot, unfortunately). The good news is that if I avoid all of my intolerances I remain in complete remission without any meds. So there is hope for Camryn. It takes longer for us DoubleDQ1s to achieve remssion, but once we do, we're just fine! The trick will be to figure out tasty things for her to eat. With double DQ1 genes, the caveman diet seem to work quite well. Have you read anything about it?
I'm sure you're relieved to be getting a handle on her problems. Keep us posted.
Love,
Polly
Blessed are they who can laugh at themselves, for they shall never cease to be amused.
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Camryn'sMommy
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Polly - yes I saw that you have the same genetic profile! What is the caveman diet? I've never heard of it?
Camryn's intolerances are definitely gluten, chocolate and citrus.....but I guess casein too. I don't know what to do about that. She seems to be doing really well even though the dairy is still in her diet. Do I take it away b/c of the test? I'm torn.
Camryn's intolerances are definitely gluten, chocolate and citrus.....but I guess casein too. I don't know what to do about that. She seems to be doing really well even though the dairy is still in her diet. Do I take it away b/c of the test? I'm torn.
Mommy to Camryn - 8 years old - dx'd with LC 8/08
Wow! Another double DQ1. Yes, I expected all the results you posted, except for the gene test results. To be honest, in view of that, I'm amazed that she is already pretty much in remission, considering that she has the double DQ1 genes. Most members with those genes, have a very tough time achieving remission.
This is just a WAEG, mind you, (these are uncharted waters), but I'm afraid that if you do not remove all dairy products from her diet, then as her gut begins to heal from the gluten damage, (she currently has a significant amount of residual intestinal damage, with a test result of 381, so it will take a while for her gut to completely heal), she will eventually begin to react to the casein, and therefore have a relapse of symptoms. IOW, I think that her immune system is still focused on gluten antibodies right now, (the body continues to produce antibodies to gluten for up to a year after gluten is withdrawn from the diet), and her immune system may be ignoring the casein, (and possibly other food intolerances). As the damage to her gut heals, though, and her production of gluten antibodies begins to fade, her immune system will shift it's focus to any other intolerances that may be present, and casein is probably the next in line, (in the antibody pecking order, so to speak).
The "caveman diet" that Polly mentioned, is often called the paleolithic diet, (or paleo diet, for short). Basically, it consists of items that our ancestors ate, during the so-called paleolithic period of about 2.5 million years ago, up until about 20,000 years ago, when our ancestors lived as hunter-gatherers. It is believed that during this period, our digestive systems became well acclimated to eating the foods that were naturally available, and those ancestors were generally very healthy, with big bones, etc. About 20,000 years ago, the neolithic period began, and this was a period when many nomadic tribes began to settle in one location, as agriculture was developed, and certain wild grains were "improved", by selective breeding, so that tribes, (or communities), could sustain themselves on a year around basis in one location. This is also the period when livestock production was developed, and humans began drinking milk, on a regular basis. It is believed by many, that not enough generations have passed, during 20,000 years, for our digestive systems to have adapted to the efficient digestion of grains, and other neolithic food products, (such as milk). Note that the fossil records make it very clear, that when ancient tribes began eating less and less meat and other wild forage products, and more grains, instead, physical body size, and general overall health, declined significantly.
The bottom line is that it is exceedingly unlikely for anyone to be intolerant to true paleo foods. The neolithic foods, however, are fraught with peril, since this group contains virtually all of the foods to which modern humans display food intolerance reactions, ( IOW, the grains, legumes, and milk). Note that this does not account for the people who have allergic reactions to crustaceans, or other seafood, but allergies, (with histamine response, and anaphylactic effects), are a distinctly different issue from food intolerances.
Here's some info on the hunter-gatherer diet , (or paleo diet, or caveman diet):
http://www.frot.co.nz/dietnet/reviews/mcferran08_hg.htm
Okay, I have to say here that I don't believe that gluten intolerance, (and related food intolerances), are strictly a matter of failure to evolve, due to an inadequate amount of time for sufficient generations to pass. (IOW, I don't believe that the low number of generations that have passed, is the reason why some of us are gluten sensitive. This post is getting too long already, though, and this is really another topic, so I think I'll write another post about my thoughts on this issue.
Tex
P S Do you mind if I add Camryn's gene test data to our list that we are maintaining, in order to try to learn as much as we can from patterns, etc. that we might be able to detect?
This is just a WAEG, mind you, (these are uncharted waters), but I'm afraid that if you do not remove all dairy products from her diet, then as her gut begins to heal from the gluten damage, (she currently has a significant amount of residual intestinal damage, with a test result of 381, so it will take a while for her gut to completely heal), she will eventually begin to react to the casein, and therefore have a relapse of symptoms. IOW, I think that her immune system is still focused on gluten antibodies right now, (the body continues to produce antibodies to gluten for up to a year after gluten is withdrawn from the diet), and her immune system may be ignoring the casein, (and possibly other food intolerances). As the damage to her gut heals, though, and her production of gluten antibodies begins to fade, her immune system will shift it's focus to any other intolerances that may be present, and casein is probably the next in line, (in the antibody pecking order, so to speak).
The "caveman diet" that Polly mentioned, is often called the paleolithic diet, (or paleo diet, for short). Basically, it consists of items that our ancestors ate, during the so-called paleolithic period of about 2.5 million years ago, up until about 20,000 years ago, when our ancestors lived as hunter-gatherers. It is believed that during this period, our digestive systems became well acclimated to eating the foods that were naturally available, and those ancestors were generally very healthy, with big bones, etc. About 20,000 years ago, the neolithic period began, and this was a period when many nomadic tribes began to settle in one location, as agriculture was developed, and certain wild grains were "improved", by selective breeding, so that tribes, (or communities), could sustain themselves on a year around basis in one location. This is also the period when livestock production was developed, and humans began drinking milk, on a regular basis. It is believed by many, that not enough generations have passed, during 20,000 years, for our digestive systems to have adapted to the efficient digestion of grains, and other neolithic food products, (such as milk). Note that the fossil records make it very clear, that when ancient tribes began eating less and less meat and other wild forage products, and more grains, instead, physical body size, and general overall health, declined significantly.
The bottom line is that it is exceedingly unlikely for anyone to be intolerant to true paleo foods. The neolithic foods, however, are fraught with peril, since this group contains virtually all of the foods to which modern humans display food intolerance reactions, ( IOW, the grains, legumes, and milk). Note that this does not account for the people who have allergic reactions to crustaceans, or other seafood, but allergies, (with histamine response, and anaphylactic effects), are a distinctly different issue from food intolerances.
Here's some info on the hunter-gatherer diet , (or paleo diet, or caveman diet):
http://www.frot.co.nz/dietnet/reviews/mcferran08_hg.htm
Okay, I have to say here that I don't believe that gluten intolerance, (and related food intolerances), are strictly a matter of failure to evolve, due to an inadequate amount of time for sufficient generations to pass. (IOW, I don't believe that the low number of generations that have passed, is the reason why some of us are gluten sensitive. This post is getting too long already, though, and this is really another topic, so I think I'll write another post about my thoughts on this issue.
Tex
P S Do you mind if I add Camryn's gene test data to our list that we are maintaining, in order to try to learn as much as we can from patterns, etc. that we might be able to detect?
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 again,
Hmmmmm, that is a tough question. Theoretically, I agree with Tex ........and we do know that she is currently making antibodies to casein (dairy) from her EL tests. It could be that the casein is not causing outright diarrhea at this point; however, it could be causing aches/pains/fatigue or other symptoms. I get not only diarrhea from dairy - I get severe neck and shoulder pains. Go figure.
This is a "rock and hard place situation", isn't it? There are so few foods just now that she can eat, so I can imagine your reluctance to discontinue the dairy. And with double DQ1 genes, she probably can't do soy milk either (was that tested?) It's good that she is old enough not to need milk to any great degree anymore. Also, I can imagine how frustrated you must be that you will probably get little help from the medical profession. You must be feeling pretty much on your own. But please do not feel alone. As I said above, Camryn WILL achieve longterm remission.....I have no doubt about it. And we are here to help in any way possible.
The best book on the caveman diet is "The Paleo Diet" by L. Cordain. It cites over 400 scientific references proving that this may, in fact, be the healthiest way for all humans to eat. It also has suggested recipes.
There is also a blog by a young lady who posts "gourmet" caveman recipes:
www.cavemanfood.blogspot.com/search/label/recipe
I don't know how palatable they would be for toddlers, but perhaps you could adapt some. One of the pluses of this diet is a great emphasis on fruits and veggies. Does Camryn like them?
Do you have a good health food store nearby? There is a company called Namaste that makes packaged mixes for baking that are good for double DQ1s because they are free of practically everything - or substitutes can be used. They have a waffle/pancake mix, cookie mix - tasty things for kiddies.
Polly
Hmmmmm, that is a tough question. Theoretically, I agree with Tex ........and we do know that she is currently making antibodies to casein (dairy) from her EL tests. It could be that the casein is not causing outright diarrhea at this point; however, it could be causing aches/pains/fatigue or other symptoms. I get not only diarrhea from dairy - I get severe neck and shoulder pains. Go figure.
This is a "rock and hard place situation", isn't it? There are so few foods just now that she can eat, so I can imagine your reluctance to discontinue the dairy. And with double DQ1 genes, she probably can't do soy milk either (was that tested?) It's good that she is old enough not to need milk to any great degree anymore. Also, I can imagine how frustrated you must be that you will probably get little help from the medical profession. You must be feeling pretty much on your own. But please do not feel alone. As I said above, Camryn WILL achieve longterm remission.....I have no doubt about it. And we are here to help in any way possible.
The best book on the caveman diet is "The Paleo Diet" by L. Cordain. It cites over 400 scientific references proving that this may, in fact, be the healthiest way for all humans to eat. It also has suggested recipes.
There is also a blog by a young lady who posts "gourmet" caveman recipes:
www.cavemanfood.blogspot.com/search/label/recipe
I don't know how palatable they would be for toddlers, but perhaps you could adapt some. One of the pluses of this diet is a great emphasis on fruits and veggies. Does Camryn like them?
Do you have a good health food store nearby? There is a company called Namaste that makes packaged mixes for baking that are good for double DQ1s because they are free of practically everything - or substitutes can be used. They have a waffle/pancake mix, cookie mix - tasty things for kiddies.
Polly
Blessed are they who can laugh at themselves, for they shall never cease to be amused.
I'm going to weigh in as another "double DQ1" having identical genetic test results to Camryn and Polly. Remission can take us a long time because of our numerous intolerances. After 21 months of keeping a daily food and elimination diary, I've finally discovered my major intolerances and am able to achieve remission by diet alone. I'm happy that you've achieved some success within a much shorter time frame.
Because Polly and my genetic test results were identical, I initially eliminated all of the same foods from my diet that she listed as intolerances. At this point of my progress I'd have to say that she and I have similar, but not identical intolerances. I'm able to eat corn products and tomatoes, for example. But we are all a work in progress, as Polly's latest discoveries demonstrate, and I may find other intolerances in the future.
My Enterolab tests indicated soy antibodies and over time I've come to realize that all legumes are a problem for me. I wonder if everyone who tests positive for soy should also suspect that all legumes are possible intolerances? I agree with Polly that you should have Camryn tested for test for soy, yeast, and eggs.
I haven't practiced the paleo diet, but it does sound like it could be the quickest and simplest way to remission for most people. I've never had any problems with unprocessed meat, vegetables (other than some legumes), and most fruits. The KISS philosophy (Keep It Simple, Stupid) is probably a smart one for MC diets and the paleo diet seems fairly simple. I think most of us don't follow it because it requires more food preparation time, can be expensive, and we'd have to give up all grains.
I have replaced cow's milk with rice milk, primarily so that I can continue to use it in cooking and in my cereal at breakfast. Store-purchased rice milk has a trace of gluten in it (though it claims to be gluten-free), but I'm able to tolerate it once a day for dinner. The advantage to purchased RiceDream milk is that it has calcium added as a supplement. Trader Joes also sells its own brand for a cheaper price. For breakfast, I use homemade rice milk and it works very well (and is very cheap). If you want my recipe, I can post it in the Dee's Kitchen.
Gloria
Because Polly and my genetic test results were identical, I initially eliminated all of the same foods from my diet that she listed as intolerances. At this point of my progress I'd have to say that she and I have similar, but not identical intolerances. I'm able to eat corn products and tomatoes, for example. But we are all a work in progress, as Polly's latest discoveries demonstrate, and I may find other intolerances in the future.
My Enterolab tests indicated soy antibodies and over time I've come to realize that all legumes are a problem for me. I wonder if everyone who tests positive for soy should also suspect that all legumes are possible intolerances? I agree with Polly that you should have Camryn tested for test for soy, yeast, and eggs.
I haven't practiced the paleo diet, but it does sound like it could be the quickest and simplest way to remission for most people. I've never had any problems with unprocessed meat, vegetables (other than some legumes), and most fruits. The KISS philosophy (Keep It Simple, Stupid) is probably a smart one for MC diets and the paleo diet seems fairly simple. I think most of us don't follow it because it requires more food preparation time, can be expensive, and we'd have to give up all grains.
I have replaced cow's milk with rice milk, primarily so that I can continue to use it in cooking and in my cereal at breakfast. Store-purchased rice milk has a trace of gluten in it (though it claims to be gluten-free), but I'm able to tolerate it once a day for dinner. The advantage to purchased RiceDream milk is that it has calcium added as a supplement. Trader Joes also sells its own brand for a cheaper price. For breakfast, I use homemade rice milk and it works very well (and is very cheap). If you want my recipe, I can post it in the Dee's Kitchen.
Gloria
You never know what you can do until you have to do it.
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Camryn'sMommy
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Gloria - if you could post the recipe for the rice milk that would be great! Thanks.
Polly - she wasn't tested for soy, egg or yeast. She still drinks soy milk - I wonder if I should get these done. I'm not sure if the caveman diet will be practical for my girl...she is not a big fan of meat or vegetables. She likes fruits, but they tend to irritate her colon (especially grapes and OJ). Yes, we have a Whole Foods and a Trader Joes about 30 minutes from us. Trader Joes has some excellent gf/df pancakes that she just loves! She wants to eat them at every meal. She pretty much lives on that and gf Peanut Butter Panda Puff cereal. She eats other things, but those are the staples of her diet at this point. She eats a lot of corn....I wonder if that is bad since you have an intolerance to it.
Tex - as always thanks for the info! Yes, please add her results to your compilation. Do you think it would help if I eliminate the dairy if she starts having a lot of problems or should I just eliminate it now. She LOVES cheese and I make her gf pizza, so it just eliminates a lot of foods she likes. I'll probably do it, but I just feel so bad. Can you get celiac if you don't have the celiac gene? I'm wondering if we didn't treat the MC if she would have eventually gotten CD. What do you think?
Polly - she wasn't tested for soy, egg or yeast. She still drinks soy milk - I wonder if I should get these done. I'm not sure if the caveman diet will be practical for my girl...she is not a big fan of meat or vegetables. She likes fruits, but they tend to irritate her colon (especially grapes and OJ). Yes, we have a Whole Foods and a Trader Joes about 30 minutes from us. Trader Joes has some excellent gf/df pancakes that she just loves! She wants to eat them at every meal. She pretty much lives on that and gf Peanut Butter Panda Puff cereal. She eats other things, but those are the staples of her diet at this point. She eats a lot of corn....I wonder if that is bad since you have an intolerance to it.
Tex - as always thanks for the info! Yes, please add her results to your compilation. Do you think it would help if I eliminate the dairy if she starts having a lot of problems or should I just eliminate it now. She LOVES cheese and I make her gf pizza, so it just eliminates a lot of foods she likes. I'll probably do it, but I just feel so bad. Can you get celiac if you don't have the celiac gene? I'm wondering if we didn't treat the MC if she would have eventually gotten CD. What do you think?
Mommy to Camryn - 8 years old - dx'd with LC 8/08
In general, vegetables are probably safer choices than fruits, (especially since during the last hundred thousand years of the paleolithic period, fruits were a greatly diminished part of the paleo diet, due to most tribes migrating to colder climates, because of diminishing supplies of meat sources, in warmer climates).
You are right - trying to remove all the offending foods from her diet is going to play havoc with her preferences. I sure hate to be the bad guy here, recommending that you cut out the foods that she loves.
Let me say this: putting these issues into perspective, gluten is really the only food intolerance that definitely has to be strictly removed from her diet. There's no recourse with it, because not only will it guarantee diarrhea and all the other miserable symptoms, (some of which you may not even realize that she is feeling), but eating gluten carries an elevated risk of developing lymphoma, osteoporosis, and various other serious health issues, (for anyone who is gluten sensitive), not the least of which is a risk of ataxia, and a risk of brain damage. Camryn is especially at risk for long-term risks of this sort, since she has virtually her whole life ahead of her, at this point. Therefore, I would never, ever cheat on a GF diet, if I were gluten sensitive, (which I am, of course).
The other food intolerances, however, have not been documented to cause an increased risk of life-threatening, adverse events, nor other serious problems, such as osteoporosis, for example. IOW, eating casein, may cause what we refer to as "battery acid" D, and it may cause body aches and pains, joint pains, etc., but it is not known to carry a risk of cancer, osteoporosis, etc. Soy is known to play tricks with the body's hormone responses, but it has not been shown to cause cancer, osteoporosis, etc.
That implies that not strictly adhering to a casein-free, or soy-free diet, may, (in fact probably will), cause various uncomfortable symptoms, in the short term, but it shouldn't carry an increased risk of any truly serious long-term health issues, (as far as current knowledge suggests). I'm a bit uncomfortable saying this, but IMO, if you and her can live with the short-term symptoms that casein, soy, etc., might cause, then I don't see any really serious risks that would be connected with that. If she begins to have significant reactions to one or all of them, you can always remove them from her diet, as needed. What I'm trying to say here, is that I feel that most food intolerances other than gluten, are related to comfort, and quality of life, rather than being connected with a heightened risk of serious long-term health issues. Obviously, this is just my opinion, and there is no documented research, to back this up, so we're in uncharted waters, here.
Animals can't describe how they feel, so in the livestock industry, we learn to observe how they look, and behave, etc., but most of all, we took at their BMs. If the BMs look good, then they are basically healthy, and doing well. If not, then something needs attention - either their diet is wrong, or they have an infection that may need to be treated. That's not a very sophisticated approach, but it works, so you might keep that in mind, when deciding what to include in Camryn's diet.
I would suggest that you e-mail Enterolab, to get Dr. Fine's opinion on these questions, (especially since the casein test result was right on the upper limit of 10). You might ask for his opinion on that. I would also at least order a soy test, but since she has the double DQ1 genes, it might be a good idea to have an egg test done, also. If you have the money to spare, a yeast test might be useful, but I consider that to be the least critical, unless she is showing signs of a yeast overgrowth. I'm pretty sure that he will recommend that you cut out everything that had a positive test result, but I could be wrong, obviously. At least that way, he will be the bad guy, here, rather than me. LOL.
Your question about CD is a good one. Technically, since she doesn't have a celiac gene, it would be an extremely rare situation if she were to develop CD - it's probably not impossible, though, especially since she is so young, and has so many years ahead of her to accrue damage to her intestines, (if she were to remain untreated). However, the type of gluten sensitivity that those of us with MC have, primarily causes a reaction directed at the colon, rather than at the small intestine, and it can get to be pretty severe, itself, if untreated. Her fecal fat score indicates that she has a significant amount of small intestinal damage, (if I understand this test correctly, it is considered to be a measure of the presence of a malabsorption issue, and that means that it has to be connected with the small intestine, since only water is absorbed from the colon), and the existence of small intestinal damage suggests that yes, she might have eventually developed CD, if she had remained untreated.
Tex
You are right - trying to remove all the offending foods from her diet is going to play havoc with her preferences. I sure hate to be the bad guy here, recommending that you cut out the foods that she loves.
Let me say this: putting these issues into perspective, gluten is really the only food intolerance that definitely has to be strictly removed from her diet. There's no recourse with it, because not only will it guarantee diarrhea and all the other miserable symptoms, (some of which you may not even realize that she is feeling), but eating gluten carries an elevated risk of developing lymphoma, osteoporosis, and various other serious health issues, (for anyone who is gluten sensitive), not the least of which is a risk of ataxia, and a risk of brain damage. Camryn is especially at risk for long-term risks of this sort, since she has virtually her whole life ahead of her, at this point. Therefore, I would never, ever cheat on a GF diet, if I were gluten sensitive, (which I am, of course).
The other food intolerances, however, have not been documented to cause an increased risk of life-threatening, adverse events, nor other serious problems, such as osteoporosis, for example. IOW, eating casein, may cause what we refer to as "battery acid" D, and it may cause body aches and pains, joint pains, etc., but it is not known to carry a risk of cancer, osteoporosis, etc. Soy is known to play tricks with the body's hormone responses, but it has not been shown to cause cancer, osteoporosis, etc.
That implies that not strictly adhering to a casein-free, or soy-free diet, may, (in fact probably will), cause various uncomfortable symptoms, in the short term, but it shouldn't carry an increased risk of any truly serious long-term health issues, (as far as current knowledge suggests). I'm a bit uncomfortable saying this, but IMO, if you and her can live with the short-term symptoms that casein, soy, etc., might cause, then I don't see any really serious risks that would be connected with that. If she begins to have significant reactions to one or all of them, you can always remove them from her diet, as needed. What I'm trying to say here, is that I feel that most food intolerances other than gluten, are related to comfort, and quality of life, rather than being connected with a heightened risk of serious long-term health issues. Obviously, this is just my opinion, and there is no documented research, to back this up, so we're in uncharted waters, here.
Animals can't describe how they feel, so in the livestock industry, we learn to observe how they look, and behave, etc., but most of all, we took at their BMs. If the BMs look good, then they are basically healthy, and doing well. If not, then something needs attention - either their diet is wrong, or they have an infection that may need to be treated. That's not a very sophisticated approach, but it works, so you might keep that in mind, when deciding what to include in Camryn's diet.
I would suggest that you e-mail Enterolab, to get Dr. Fine's opinion on these questions, (especially since the casein test result was right on the upper limit of 10). You might ask for his opinion on that. I would also at least order a soy test, but since she has the double DQ1 genes, it might be a good idea to have an egg test done, also. If you have the money to spare, a yeast test might be useful, but I consider that to be the least critical, unless she is showing signs of a yeast overgrowth. I'm pretty sure that he will recommend that you cut out everything that had a positive test result, but I could be wrong, obviously. At least that way, he will be the bad guy, here, rather than me. LOL.
Your question about CD is a good one. Technically, since she doesn't have a celiac gene, it would be an extremely rare situation if she were to develop CD - it's probably not impossible, though, especially since she is so young, and has so many years ahead of her to accrue damage to her intestines, (if she were to remain untreated). However, the type of gluten sensitivity that those of us with MC have, primarily causes a reaction directed at the colon, rather than at the small intestine, and it can get to be pretty severe, itself, if untreated. Her fecal fat score indicates that she has a significant amount of small intestinal damage, (if I understand this test correctly, it is considered to be a measure of the presence of a malabsorption issue, and that means that it has to be connected with the small intestine, since only water is absorbed from the colon), and the existence of small intestinal damage suggests that yes, she might have eventually developed CD, if she had remained untreated.
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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Camryn'sMommy
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Thanks for the info Tex, I will probably contact Dr. Fine. I need to get your opinion on something (or anyone else's opinion). Camryn was up all night with belly pain. She would be sleeping one minute, then screaming the next, then she would fall back to sleep for about 5 min, then start screaming again. This went on all night. I talked to a nurse at her GI Drs office this morning - he said it might have been hidden gluten or just a viral thing. I gave him an updated on how well she is doing on the gf diet...he was shocked. I guess since they have never seen a case of this at that hospital before. She ate a lot of corn tortilla chips yesterday (Mission brand)....I wonder if there is hidden gluten in it. They suggested we attend a Celiac meeting at the hospital. They have a Center for Celiac Disease. They are going to call me back to see if we are allowed to attend....he said it shouldn't be a problem.
Mommy to Camryn - 8 years old - dx'd with LC 8/08
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Camryn'sMommy
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- Location: Langhorne, PA, USA
I contacted Enterolab to see if I could speak with Dr. Fine...here is the response I got :(
Your Question: Does Dr. Fine has an email address where I could ask him some specific questions about my daughter? She has Lymphocytic Colitis and it is really rare in someone that is 2 1/2 years old. If I could speak with him on the phone or through email I would really appreciate it. I've taken her to the Children's Hospital of Philadelphia, but they have never seen this before. It would be nice to talk with an expert that actually knows the correlation between gluten sensitivity and her condition.
Response: Dear Laura, Unfortunately, Dr. Fine is currently traveling quite extensively and is not available to speak or e-mail patients directly. However, you may wish to speak with our nurse about your daughter's case as she is well informed about gluten sensitivity and commonly related conditions, such as colitis. If you wish to set up a phone consultation with her, please call our office at 972-686-6869 in order to do so. Please note that phone consultations are charged by the hour and we would like to have medical history prior to the conversation in order to save time/money in helping you. For further questions, please contact us once more. Thank you, Alexis Carreon EnteroLab Customer Service
How much do they charge for the phone consultations??
Your Question: Does Dr. Fine has an email address where I could ask him some specific questions about my daughter? She has Lymphocytic Colitis and it is really rare in someone that is 2 1/2 years old. If I could speak with him on the phone or through email I would really appreciate it. I've taken her to the Children's Hospital of Philadelphia, but they have never seen this before. It would be nice to talk with an expert that actually knows the correlation between gluten sensitivity and her condition.
Response: Dear Laura, Unfortunately, Dr. Fine is currently traveling quite extensively and is not available to speak or e-mail patients directly. However, you may wish to speak with our nurse about your daughter's case as she is well informed about gluten sensitivity and commonly related conditions, such as colitis. If you wish to set up a phone consultation with her, please call our office at 972-686-6869 in order to do so. Please note that phone consultations are charged by the hour and we would like to have medical history prior to the conversation in order to save time/money in helping you. For further questions, please contact us once more. Thank you, Alexis Carreon EnteroLab Customer Service
How much do they charge for the phone consultations??
Mommy to Camryn - 8 years old - dx'd with LC 8/08
It could have been the tortilla chips. I love them myself, but while I was recovering, I had to avoid eating significant amounts of corn. Even today, if I eat too many, I get cramps, and a somewhat bloated, overstuffed, feeling - enough to keep me awake, sometimes. The primary protein in corn, (zein), has a polymer chain that is somewhat similar to the polymer chain of the gluten in wheat, and a few of us have immune systems that evidently confuse it with wheat gluten, (or whatever it is that triggers the autoimmune reaction in the first place). It is less similar, though, that the equivalent chains of soy, and casein, so that is why it falls farther down the "pecking order" scale.
Here's a little background information on the grains:
Gluten makes up a high percentage of the protein in wheat, and the gliadins in gluten that trigger the reactions are very potent, (on a relative scale). The hordein in barley, shows up at a lower percentage, and it is not as potent, either. Going down the scale, the secalin in rye, shows up as an even smaller percentage, and it is generally not as potent. The soya in soy, makes up a higher percentage of the total mass of the soy bean, than the gluten in wheat, but it is not as potent an allergen, (IOW, it has a more dissimilar polymer chain). The avenin in oats is a very low percentage of the total mass, and it is not a very potent allergen, so it generally takes much longer, (or much larger quantities), to trigger an oat reaction. The zein in corn makes up an even smaller part of the grain, and it is a very weak allergen. The oryzein in rice, is so far down the scale that it is very rare for someone to be intolerant of oryzein. IOW, as you go down the scale, the polymer chains that make up these proteins become more and more dissimilar to the gluten in wheat, thus less likely to trigger a reaction. The potential for a reaction is still present, however, for some of us, if we consume enough of them. Usually, though, reactions of this type are not nearly as intense as reactions from allergens farther up the scale. IOW, they often cause bloating, or cramping, or an uncomfortable feeling, or even a headache, neck ache, etc., but usually they will not cause D. I hope I haven't just confused the issue.
The costumer service rep should have quoted a price in that e-mail. If I were you, I would send an e-mail back to ask for the price. Presumably, you will be consulting with Phyllis Zermeno. She supervises their clinical laboratories, and she is also the director of office operations. I've talked with her before, about details of their test procedures, and she seems to know her stuff:
http://www.intestinalhealth.org/Staff/
Tex
Here's a little background information on the grains:
Gluten makes up a high percentage of the protein in wheat, and the gliadins in gluten that trigger the reactions are very potent, (on a relative scale). The hordein in barley, shows up at a lower percentage, and it is not as potent, either. Going down the scale, the secalin in rye, shows up as an even smaller percentage, and it is generally not as potent. The soya in soy, makes up a higher percentage of the total mass of the soy bean, than the gluten in wheat, but it is not as potent an allergen, (IOW, it has a more dissimilar polymer chain). The avenin in oats is a very low percentage of the total mass, and it is not a very potent allergen, so it generally takes much longer, (or much larger quantities), to trigger an oat reaction. The zein in corn makes up an even smaller part of the grain, and it is a very weak allergen. The oryzein in rice, is so far down the scale that it is very rare for someone to be intolerant of oryzein. IOW, as you go down the scale, the polymer chains that make up these proteins become more and more dissimilar to the gluten in wheat, thus less likely to trigger a reaction. The potential for a reaction is still present, however, for some of us, if we consume enough of them. Usually, though, reactions of this type are not nearly as intense as reactions from allergens farther up the scale. IOW, they often cause bloating, or cramping, or an uncomfortable feeling, or even a headache, neck ache, etc., but usually they will not cause D. I hope I haven't just confused the issue.
The costumer service rep should have quoted a price in that e-mail. If I were you, I would send an e-mail back to ask for the price. Presumably, you will be consulting with Phyllis Zermeno. She supervises their clinical laboratories, and she is also the director of office operations. I've talked with her before, about details of their test procedures, and she seems to know her stuff:
http://www.intestinalhealth.org/Staff/
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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Camryn'sMommy
- Adélie Penguin
- Posts: 87
- Joined: Thu Aug 21, 2008 1:49 pm
- Location: Langhorne, PA, USA
Well, it looks like it wasn't Camryn's belly that was bothering her. She seems like she has the flu or something. My poor baby is really sick. I've determined it was her throat that was hurting. She said her chin hurt, I think she didn't know the word for throat and that was the closest word she knew. She also said her nose and eyebrows hurt. I might have to take her to the Dr. tonight after work :(
Mommy to Camryn - 8 years old - dx'd with LC 8/08
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kate_ce1995
- Rockhopper Penguin
- Posts: 1321
- Joined: Wed May 25, 2005 5:53 pm
- Location: Vermont
Sounds like a sinus infection or really bad head cold. I just start October's version here...we passed one around in September had about a week when everyone was healthy and then our youngest (age 9) started the next go around last week. Geoff caught it over the weekend and by the end of yesterday my throat was scratchy and this morning my sinuses are clogged.
Big hugs for Camryn...we always said MC sufferers ought to be spared all the "normal" bugs running around.
Katy
Big hugs for Camryn...we always said MC sufferers ought to be spared all the "normal" bugs running around.
Katy
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Camryn'sMommy
- Adélie Penguin
- Posts: 87
- Joined: Thu Aug 21, 2008 1:49 pm
- Location: Langhorne, PA, USA
Hi everyone, how are you? We're going pretty well. Camryn has been glutened a few times in the past week. First my parents gave her Cheerios, then my mother in law gave her bread by accident, then someone gave her some funnel cake at a pumpkin festival. She is reacting pretty well. Her BMs are definitely showing that she had some gluten, but she recovers pretty quickly from it. I can almost time how long it will be from the time she has the gluten to the time she has a bad diaper (it is about 24 hours). She goes back to see her GI Dr. on November 18th. I wonder what she'll say about how well the gf diet has worked.
I just went to Whole Foods and got a lot of great gf foods for Camryn. I found some pizza, the yummy earth lollipops, the animal crackers that Dee suggested, along with some hot dogs and other meats. She is starting to like eggs and now she likes hot dogs, so it is getting a little easier.
Hope everyone is feeling well :)
I just went to Whole Foods and got a lot of great gf foods for Camryn. I found some pizza, the yummy earth lollipops, the animal crackers that Dee suggested, along with some hot dogs and other meats. She is starting to like eggs and now she likes hot dogs, so it is getting a little easier.
Hope everyone is feeling well :)
Mommy to Camryn - 8 years old - dx'd with LC 8/08
That's great news that she's continuing to do so well, (in spite of all the little setbacks). The fact that the unintentional gluten "challenges" did not result in chronic D, is a very, very good sign that her intestines are healing nicely. IOW, brief reactions are typical of someone in remission, who accidentally gets a single dose of a food to which she or he is intolerant.
It certainly will be interesting to see what her GI doc has to say about Camryn's relatively rapid recovery on the diet. IMO, she has done extraordinarily well, (especially considering all the little setbacks, due to unintentional gluten challenges). It will get easier as time passes.
Thanks for the update. It's really gratifying to see her doing so well, in such a short amount of time on the diet
Tex
It certainly will be interesting to see what her GI doc has to say about Camryn's relatively rapid recovery on the diet. IMO, she has done extraordinarily well, (especially considering all the little setbacks, due to unintentional gluten challenges). It will get easier as time passes.
Thanks for the update. It's really gratifying to see her doing so well, in such a short amount of time on the 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.