Hi all,
I have thankfully found this site as my doctor, try as he may, hasn't helped me a lot. With the exception he agreed to try LDN for both Hashimoto's and CC. anyway, I guess I need to do another elimination diet. My main issue is that nothing, absolutely nothing shows up as allergies food wise for me. Not even close to being sensitive. It seems for me, that triggers come out of absolutely nowhere. Then I go to the bland diet of little chicken or red meat very lean, rice, potatoes and green beans. I try to do Bone Broths but sometimes I literally think I will vomit at the thought of drinking it. So I have tried making soups with them which works better but sometimes a girl needs more food period. I am at the tale end of a flareup that lasted 2 weeks and was pretty bad. Now my strength and energy is low. I went gluten, dairy, soy and sugar free about 2 years ago and slowly added all back in, nothing. No flareups no nothing. I think sometimes gluten makes my joints achy but not always. I eat bananas and sometimes some berries but fruit isn't my thing and never has been. I was dx with MC specifically CC about 12 years ago i guess. I think I always had it from my teenage years I have always had a sensitive colon. Dx with IBS of course as no biopsies would be done on a 17 year old at that time. I had a very traumatic childhood which I believe is the root of all this but that is for another day. so how would you guys approach a system that doesn't seem to have trouble with food just eating. If I don't eat it calms down. that is another reason I believe it is stressed tied for me...when things get stressful I am rushing to the bathroom. Eventually I was dx with a panic disorder because I did have panic attacks. I was medicated for them for about 5 years but now I have a handle on how to deescalate any situation that would make me so anxious I would have a panic attack. The last long one I had was last year...because of stress at my doctor's office. (I am too sensitive to nuances and his office had an issue going on with me picking up on it). I have had a fish aversion since I was pregnant with my son...I have recently tried salmon and its ok. I prefer to eat red meat if the truth be known. Pork is fine too. Rice and potatoes are good no reactions immediately. Any suggestions would be greatly appreciated because now I don't know what to eat. so I don't eat. not eating has wrecked my metabolism.
thanks
lone observer
Suggestions for elimination diet
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lone observer
- Posts: 5
- Joined: Fri Mar 06, 2015 9:18 pm
Suggestions for elimination diet
life is about seasons: here's to the season of healing.
Hi,
Welcome to our Internet family. I'm sorry to hear that you're been having to deal with this disease for so long, and I hope that you can find the information you need on this board to finally resolve your symptoms.
I note in your other post that you've had EnteroLab testing, and the results were all negative. It's possible that you may have selective IgA deficiency, which means that all ELISA-based testing may provide false negative results for you. Have you been tested for selective IgA deficiency? Not only tests such as the EnteroLab stool tests, but also the classic celiac blood tests used by all doctors rely on ELISA test methods. And if you happen to be incapable of producing normal amounts of immunoglobulin A, then all of those tests will not be reliable for you. We have more than a few members who are IgA deficient, because while approximately 1 in 500 people in the general population have selective IgA deficiency, the odds increase to 1 in 300 for those who are sensitive to gluten (and virtually all of us are sensitive to gluten).
There is also the possibility that you might not be sensitive to the particular proteins targeted by the tests. ELISA tests are very specific, so that any particular test will only detect antibodies to that one specific protein. All foods contain many proteins. Not all of them cause reactions, but many can and do. Usually, testing for the primary protein in a food that typically causes reactions is sufficient, for most of us. but it's at least theoretically possible to not be sensitive to that particular protein, but react to another protein in the food instead. With wheat for example, only antibodies to the alpha gliadin peptide are detected by the tests designed to detect gluten-sensitivity. But there are over 300 additional peptides in wheat, rye, and barley that can cause celiacs to react. Testing for all of them would be incredibly expensive, so the tests only check for antibodies to the alpha gliadin peptide. A similar situation applies to the other foods.
That's why Dr. Fine himself points out that it's possible to still react to a food, even though the test results might be negative. And regarding your trials that indicated that gluten does not cause any problems for you — while that's certainly possible, gluten sensitivity doesn't affect everyone the same way. Early on (before I figured out what was causing my problems), I kept a food/reaction journal and recorded everything I ate, the times, and how I felt at various times during the day. I found that I seemed to react to almost everything except gluten, in sort of a random pattern.
But I decided to permanently cut gluten out of my diet anyway, and after about 6 or 8 months or so I could begin to see how certain other foods were affecting me. Eventually, it dawned on me that cutting out a few foods here and there was not getting the job done. I cut out every suspicious food, and in a couple of weeks I was in remission. I then followed that limited (elimination) diet for about a year and a half before I was able to begin to safely add certain foods back into my diet.
Antigliadin antibodies have an extremely long half-life (120 days), so it takes a very long time for antibody levels to decay after gluten is removed from the diet. Antibodies to most other foods have a half-life of approximately 6 days, by comparison. That's why gluten-sensitivity tends to dominate the immune system when it is present.
If you've read my book, you already known that I totally agree with you about the powerful effects of stress on patients who have MC. Stress seems to trump everything, even the best executed treatment programs.
But here's one other consideration. If you do not have selective IgA deficiency, and your EnteroLab test results are accurate, there is a chance that your reactions might be caused by one of many very common medications that can trigger MC. Are you by any chance taking any NSAIDs, PPIs, SSRIs, SNRIs, tricyclic antidepressants, bisphosphonates, beta blockers, and there are others. In most cases, reactions to those medications will trump any attempts to control symptoms by any means.
Regarding an elimination diet, here are my thoughts on the safest foods: Virtually none of us react to turkey, lamb, venison, rabbit, and many other wild game species (except for bison, most of which now contain DNA from domestic cattle). Peeled, over-cooked vegetables such as squash, carrots, green beans, cauliflower, broccoli, in small to moderate servings work for most of us. All citrus fruits (including tomatoes) are usually problematic until after we are in remission. If you eat any fruits (other than bananas), they should be peeled, cooked and eaten in even smaller servings, because not only is the fiber in fruits a problem, but the sorbitol and fructose cause problems for most of us if we eat more than small amounts of them. Almond milk and coconut milk are safe for most of us. Nut butters are safer than most whole nuts, but might be best avoided until after remission, because many of us react to certain nuts.
The simpler (fewer foods), the better when using an elimination diet, and seasoning should usually be limited to a little salt (at least early on). Most of us can tolerate rice, and red or yellow potatoes are easier to digest than white potatoes (Russets), because of the chemical composition of the starch (IOW, waxy potatoes are easier to digest than Russets).
Again, welcome aboard, and I hope that some of this may be helpful.
Tex
Welcome to our Internet family. I'm sorry to hear that you're been having to deal with this disease for so long, and I hope that you can find the information you need on this board to finally resolve your symptoms.
I note in your other post that you've had EnteroLab testing, and the results were all negative. It's possible that you may have selective IgA deficiency, which means that all ELISA-based testing may provide false negative results for you. Have you been tested for selective IgA deficiency? Not only tests such as the EnteroLab stool tests, but also the classic celiac blood tests used by all doctors rely on ELISA test methods. And if you happen to be incapable of producing normal amounts of immunoglobulin A, then all of those tests will not be reliable for you. We have more than a few members who are IgA deficient, because while approximately 1 in 500 people in the general population have selective IgA deficiency, the odds increase to 1 in 300 for those who are sensitive to gluten (and virtually all of us are sensitive to gluten).
There is also the possibility that you might not be sensitive to the particular proteins targeted by the tests. ELISA tests are very specific, so that any particular test will only detect antibodies to that one specific protein. All foods contain many proteins. Not all of them cause reactions, but many can and do. Usually, testing for the primary protein in a food that typically causes reactions is sufficient, for most of us. but it's at least theoretically possible to not be sensitive to that particular protein, but react to another protein in the food instead. With wheat for example, only antibodies to the alpha gliadin peptide are detected by the tests designed to detect gluten-sensitivity. But there are over 300 additional peptides in wheat, rye, and barley that can cause celiacs to react. Testing for all of them would be incredibly expensive, so the tests only check for antibodies to the alpha gliadin peptide. A similar situation applies to the other foods.
That's why Dr. Fine himself points out that it's possible to still react to a food, even though the test results might be negative. And regarding your trials that indicated that gluten does not cause any problems for you — while that's certainly possible, gluten sensitivity doesn't affect everyone the same way. Early on (before I figured out what was causing my problems), I kept a food/reaction journal and recorded everything I ate, the times, and how I felt at various times during the day. I found that I seemed to react to almost everything except gluten, in sort of a random pattern.
But I decided to permanently cut gluten out of my diet anyway, and after about 6 or 8 months or so I could begin to see how certain other foods were affecting me. Eventually, it dawned on me that cutting out a few foods here and there was not getting the job done. I cut out every suspicious food, and in a couple of weeks I was in remission. I then followed that limited (elimination) diet for about a year and a half before I was able to begin to safely add certain foods back into my diet.Antigliadin antibodies have an extremely long half-life (120 days), so it takes a very long time for antibody levels to decay after gluten is removed from the diet. Antibodies to most other foods have a half-life of approximately 6 days, by comparison. That's why gluten-sensitivity tends to dominate the immune system when it is present.
If you've read my book, you already known that I totally agree with you about the powerful effects of stress on patients who have MC. Stress seems to trump everything, even the best executed treatment programs.
But here's one other consideration. If you do not have selective IgA deficiency, and your EnteroLab test results are accurate, there is a chance that your reactions might be caused by one of many very common medications that can trigger MC. Are you by any chance taking any NSAIDs, PPIs, SSRIs, SNRIs, tricyclic antidepressants, bisphosphonates, beta blockers, and there are others. In most cases, reactions to those medications will trump any attempts to control symptoms by any means.
Regarding an elimination diet, here are my thoughts on the safest foods: Virtually none of us react to turkey, lamb, venison, rabbit, and many other wild game species (except for bison, most of which now contain DNA from domestic cattle). Peeled, over-cooked vegetables such as squash, carrots, green beans, cauliflower, broccoli, in small to moderate servings work for most of us. All citrus fruits (including tomatoes) are usually problematic until after we are in remission. If you eat any fruits (other than bananas), they should be peeled, cooked and eaten in even smaller servings, because not only is the fiber in fruits a problem, but the sorbitol and fructose cause problems for most of us if we eat more than small amounts of them. Almond milk and coconut milk are safe for most of us. Nut butters are safer than most whole nuts, but might be best avoided until after remission, because many of us react to certain nuts.
The simpler (fewer foods), the better when using an elimination diet, and seasoning should usually be limited to a little salt (at least early on). Most of us can tolerate rice, and red or yellow potatoes are easier to digest than white potatoes (Russets), because of the chemical composition of the starch (IOW, waxy potatoes are easier to digest than Russets).
Again, welcome aboard, and I hope that some of this may be helpful.
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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lone observer
- Posts: 5
- Joined: Fri Mar 06, 2015 9:18 pm
Hi Wayne,
First thank you for the thoughtful informative post and the nice welcome. It is hard that I have dealt with this issue for this long. I have not as far as I know been checked IgA deficiency. My previous doctor was better at digestive disorders as it was his speciality for over 20 years. He is the one that did the Enterolab, twice because he knew about false positives. It makes sense though as all the tests all the GI specialists i have ever seen all came back negative. My previous doctor left practicing medicine to work as a medical doctor of a big supplement company. My new doctor is trying it just isn't his thing, he is thorough and wants to understand. I will ask him to test specifically for IgA deficiency. He did put me on LDN, for CC and my Hashimoto's. It seems when one settles down the other flareups. Which tells me my immune system is in hyperdrive. Either attacking my thyroid or the colon...or my joints. I have tests positive for several infections and parasitic and during the treatment for elimination of these my colon stayed quiet..
I am currently reading your book. I am on chapter 7 just a few pages into. Sometimes I have trouble concentrating so it is taking me longer especially right now when i am trying to feel better with this current flare. The colon seems quiet now but the toll it takes after a 2.5 week flareup....well you know. I love your book. I am thankful for finding it and this site.
I admit I am a picky eater. Food, I am not a foodie. I struggle with appetite..I have none. I don't want anything. I get hungry and then have to deal with trying to figure out what to eat.
Sometimes it seems like i have the appetite and food preferences of a toddler. Get stuck on one food that doesn't hurt to eat it and stick to it until I am so tired of it. I really don't eat sugar or fruit but then when I do I can over eat it.
I think I need to figure out what foods don't bother me and eat on a more regular basis even if I am not hungry have a little something so that i don't overate when I do finally get hungry. I was doing better with that until this recent flare, and then all new habits flew out the window.
Thanks for the meal suggestions, I am going to go to the store and pick up your suggestions and give it a shot.
On, I am not on any of the medications you mentioned. I used to have headaches a lot, migraines to the point that I would be in so much pain and then I would grab anything and everything in the house to take. I have had my DNA tested and I have the mutation that makes me burn throw painkillers quickly so they are in essence useless. Now I have to be so uncomfortable with the headache to take anything and I try to use essential oils diffused to help first. I am prone to what I call weather change headaches...barometric pressures changes and that is the only time i will resort to aspirin and 1/2 of a benedryl and it will stop the headaches. I have seen more specialists for headaches and they don't help. Neither do gastroenterologists. or Endocrinologists for that matter. I had yellow potatoes tonight. But I think Oil Olive is something I need to watch. and I did not realize the tomatoes were a problem. I don't feel bad tonight but not good either.
I will finish your book in the next day or so. Thanks for taking the time to be so thorough. I really appreciate it. I will get my doctor to do some more testing or go see the GI doctor even though.....he wasn't all that helpful. I wish my other doctor had not abandoned me for a new career....
First thank you for the thoughtful informative post and the nice welcome. It is hard that I have dealt with this issue for this long. I have not as far as I know been checked IgA deficiency. My previous doctor was better at digestive disorders as it was his speciality for over 20 years. He is the one that did the Enterolab, twice because he knew about false positives. It makes sense though as all the tests all the GI specialists i have ever seen all came back negative. My previous doctor left practicing medicine to work as a medical doctor of a big supplement company. My new doctor is trying it just isn't his thing, he is thorough and wants to understand. I will ask him to test specifically for IgA deficiency. He did put me on LDN, for CC and my Hashimoto's. It seems when one settles down the other flareups. Which tells me my immune system is in hyperdrive. Either attacking my thyroid or the colon...or my joints. I have tests positive for several infections and parasitic and during the treatment for elimination of these my colon stayed quiet..
I am currently reading your book. I am on chapter 7 just a few pages into. Sometimes I have trouble concentrating so it is taking me longer especially right now when i am trying to feel better with this current flare. The colon seems quiet now but the toll it takes after a 2.5 week flareup....well you know. I love your book. I am thankful for finding it and this site.
I admit I am a picky eater. Food, I am not a foodie. I struggle with appetite..I have none. I don't want anything. I get hungry and then have to deal with trying to figure out what to eat.
Sometimes it seems like i have the appetite and food preferences of a toddler. Get stuck on one food that doesn't hurt to eat it and stick to it until I am so tired of it. I really don't eat sugar or fruit but then when I do I can over eat it.
I think I need to figure out what foods don't bother me and eat on a more regular basis even if I am not hungry have a little something so that i don't overate when I do finally get hungry. I was doing better with that until this recent flare, and then all new habits flew out the window.
Thanks for the meal suggestions, I am going to go to the store and pick up your suggestions and give it a shot.
On, I am not on any of the medications you mentioned. I used to have headaches a lot, migraines to the point that I would be in so much pain and then I would grab anything and everything in the house to take. I have had my DNA tested and I have the mutation that makes me burn throw painkillers quickly so they are in essence useless. Now I have to be so uncomfortable with the headache to take anything and I try to use essential oils diffused to help first. I am prone to what I call weather change headaches...barometric pressures changes and that is the only time i will resort to aspirin and 1/2 of a benedryl and it will stop the headaches. I have seen more specialists for headaches and they don't help. Neither do gastroenterologists. or Endocrinologists for that matter. I had yellow potatoes tonight. But I think Oil Olive is something I need to watch. and I did not realize the tomatoes were a problem. I don't feel bad tonight but not good either.
I will finish your book in the next day or so. Thanks for taking the time to be so thorough. I really appreciate it. I will get my doctor to do some more testing or go see the GI doctor even though.....he wasn't all that helpful. I wish my other doctor had not abandoned me for a new career....
life is about seasons: here's to the season of healing.
For what it's worth, when my MC was active, migraines would eat me alive. If I caught them in time, I could often stop them with a couple of maximum strength Excedrin (this was back before I knew that my diet was the problem, and before I knew that NSAIDS were a problem). And after I figured it out and I started to recover, I could stop them with Tylenol. But if I waited too long (or took Tylenol on an empty stomach), I couldn't stop the development, and I just had to ride it out. Some days I couldn't get out of bed to go to work because of the intense pain, and because they always caused nausea after they got to a severe level. After my gut healed, the migraines disappeared, and I haven't had even a simple headache in probably at least 10 years now.
Our experience on the board here has been that LDN seems to be relatively effective for treating most other autoimmune diseases, but not MC. For a few members, when other AI diseases were apparently preventing them from achieving remission with their MC, the use of LDN helped because it helped with other AI problems. One member for example, who had diabetes all her life, was finally able to stop her MC from repeatedly relapsing by taking LDN, and she is now finally enjoying life free of symptoms (all of the time, not just between flares). But those who have tried using LDN to treat MC alone, have been unsuccessful (at least so far).
Concentrating and thinking clearly is definitely a problem with MC. And it takes a while for those symptoms to fade away, but they will slowly improve as your digestive system heals. You're past the chapters that contain most of the boring background information in the book. I believe that you will find the information from chapter 7 onward to be more interesting because a lot of it is original material that you won't find anywhere else, and hopefully it should be much more helpful for difficult cases, such as yours.
Wayne
Our experience on the board here has been that LDN seems to be relatively effective for treating most other autoimmune diseases, but not MC. For a few members, when other AI diseases were apparently preventing them from achieving remission with their MC, the use of LDN helped because it helped with other AI problems. One member for example, who had diabetes all her life, was finally able to stop her MC from repeatedly relapsing by taking LDN, and she is now finally enjoying life free of symptoms (all of the time, not just between flares). But those who have tried using LDN to treat MC alone, have been unsuccessful (at least so far).
Concentrating and thinking clearly is definitely a problem with MC. And it takes a while for those symptoms to fade away, but they will slowly improve as your digestive system heals. You're past the chapters that contain most of the boring background information in the book. I believe that you will find the information from chapter 7 onward to be more interesting because a lot of it is original material that you won't find anywhere else, and hopefully it should be much more helpful for difficult cases, such as yours.
Wayne
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.
-
lone observer
- Posts: 5
- Joined: Fri Mar 06, 2015 9:18 pm
Hi Wayne,
I doubled checked my lab records, I keep everything, and my doctor did check igA and if i am reading this correctly it seems to be appropriate and he did not flag it which he does/did for all things that were an issue. I will ask current doctor about rechecking this and redoing the Enterolab too. Wouldn't hurt.
Thanks for the tip regarding migraines..Back pain and headaches seem to be the sign a flareup is imminent. I will try tylenol after picking some up. i know the neurologist told me execedrin remains the best at stopping migraine pain but needs to caught early.
I am committing to watching for all signs of gluten in my diet and any other iffy foods. I did well today, I was out with friends but came home and made food. As well as I made myself eat lunch which normally I struggle with. One day at a time, I will do this elimination diet for at least a year and see how the MC goes. I wanted the LDN to help with Hashimoto's because it remains an issue, running hypo and hyper all on the same day is exhausting too...I imagine it is the catalyst for the recurring MC as well. My antibodies have been well over 1200 at one time and the lowest they have gone is a little under 400....doctor believes the sweet spot for feeling better is <50 so i hope LDN to help with this...
The other day I diagnosed myself with adult onset ADD (I am a mental health professional or rather was until MC and other stuff got so bad i had to quit doctor was adamant about not working) because of my inability to concentrate. I have always had a photographic memory so this is a struggle. and compared to others with normal memory capacities I am still great but i notice the difference.
and by the way, chapters 1-6 is not boring and I learned a lot already. So I know the rest of book will help me figure this out.. again thanks...you have been A BIG help....
I doubled checked my lab records, I keep everything, and my doctor did check igA and if i am reading this correctly it seems to be appropriate and he did not flag it which he does/did for all things that were an issue. I will ask current doctor about rechecking this and redoing the Enterolab too. Wouldn't hurt.
Thanks for the tip regarding migraines..Back pain and headaches seem to be the sign a flareup is imminent. I will try tylenol after picking some up. i know the neurologist told me execedrin remains the best at stopping migraine pain but needs to caught early.
I am committing to watching for all signs of gluten in my diet and any other iffy foods. I did well today, I was out with friends but came home and made food. As well as I made myself eat lunch which normally I struggle with. One day at a time, I will do this elimination diet for at least a year and see how the MC goes. I wanted the LDN to help with Hashimoto's because it remains an issue, running hypo and hyper all on the same day is exhausting too...I imagine it is the catalyst for the recurring MC as well. My antibodies have been well over 1200 at one time and the lowest they have gone is a little under 400....doctor believes the sweet spot for feeling better is <50 so i hope LDN to help with this...
The other day I diagnosed myself with adult onset ADD (I am a mental health professional or rather was until MC and other stuff got so bad i had to quit doctor was adamant about not working) because of my inability to concentrate. I have always had a photographic memory so this is a struggle. and compared to others with normal memory capacities I am still great but i notice the difference.
and by the way, chapters 1-6 is not boring and I learned a lot already. So I know the rest of book will help me figure this out.. again thanks...you have been A BIG help....
life is about seasons: here's to the season of healing.
Hopefully those thyroid antibodies will settle down after you get your digestive system inflammation under control.
I think we all have ADD at times, especially if our MC is active.
You're most welcome,
Wayne
I think we all have ADD at times, especially if our MC is active.
You're most welcome,
Wayne
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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lone observer
- Posts: 5
- Joined: Fri Mar 06, 2015 9:18 pm
Hi Tex,
Just reading through these posts and you mention the selective IGA Diffecency, and something about false negatives with some testing regarding celiac, couldn't understand it all. I'm new here.
My 7 yr old has selective IGA diffecency and was negative in celiac pannel. He has LC.
He is gluten sensitive - is there anything I should know about Iga and LC?
Thanks!
Just reading through these posts and you mention the selective IGA Diffecency, and something about false negatives with some testing regarding celiac, couldn't understand it all. I'm new here.
My 7 yr old has selective IGA diffecency and was negative in celiac pannel. He has LC.
He is gluten sensitive - is there anything I should know about Iga and LC?
Thanks!
Yes there is. The celiac blood tests (as I recall) use a combination of serum tests that looks for both IgG and IgA antibodies. If a patient has selective IgA deficiency, then the test result will virtually always be negative, because even elevated IgG antibodies will not be sufficient to trigger a positive result, in the absence of IgA antibodies.
But one doesn't have to have selective IgA deficiency to recieve a false negative result from those tests. The extremely poor sensitivity of the serum tests is the main reason why the average time from the onset of symptoms until an official diagnosis of celiac disease is handed down is still over 9 years in this country. Doctors need to get their act together and figure out how to detect gluten sensitivity before the villi of the small intestine are destroyed, not after it happens, as is the case now.
The celiac blood tests will only show a positive test result if the small intestinal villi have already suffered years of extensive damage. That's unacceptable.
Approximately 1 in 500 people in the general population have selective IgA deficiency. But among celiacs, approximately 1 in 300 have selective IgA deficiency. And the percentage may be even higher among MC patients, because we have a surprising number of members here who have selective IgA deficiency.
At any rate, the bad news is that with selective IgA deficiency, not only are the celiac blood tests worthless, but the EnteroLab stool tests that we normally rely on will not work, either. In that situation (with no tests available that will be reliable), we have to determine our food sensitivities by means of an elimination diet and trial and error testing that involves introducing foods back into the diet, one at a time, to look for reactions.
In your son's case, I gather that an upper endoscopy was done as well, to check biopsies taken from the duodenum for damage to the villi. But the problem with the methods used by GI specialists for diagnosing celiac disease is that they tend to be a comedy of errors. In order to qualify for an official diagnosis of celiac disease, there has to be enough damage to qualify for at least a Marsh 3 level of damage. Here's a description of the Marsh scoring system taken from pages 10–11 of my book:
If you have the pathology report for the upper endoscopy exam, it should show the actual extent of inflammation in the small intestine, based on examination of any biopsy samples taken. The report will be written in "doctorspeak", but we understand doctorspeak around here.
You are most welcome.
Tex
But one doesn't have to have selective IgA deficiency to recieve a false negative result from those tests. The extremely poor sensitivity of the serum tests is the main reason why the average time from the onset of symptoms until an official diagnosis of celiac disease is handed down is still over 9 years in this country. Doctors need to get their act together and figure out how to detect gluten sensitivity before the villi of the small intestine are destroyed, not after it happens, as is the case now.
The celiac blood tests will only show a positive test result if the small intestinal villi have already suffered years of extensive damage. That's unacceptable.
Approximately 1 in 500 people in the general population have selective IgA deficiency. But among celiacs, approximately 1 in 300 have selective IgA deficiency. And the percentage may be even higher among MC patients, because we have a surprising number of members here who have selective IgA deficiency.
At any rate, the bad news is that with selective IgA deficiency, not only are the celiac blood tests worthless, but the EnteroLab stool tests that we normally rely on will not work, either. In that situation (with no tests available that will be reliable), we have to determine our food sensitivities by means of an elimination diet and trial and error testing that involves introducing foods back into the diet, one at a time, to look for reactions.
In your son's case, I gather that an upper endoscopy was done as well, to check biopsies taken from the duodenum for damage to the villi. But the problem with the methods used by GI specialists for diagnosing celiac disease is that they tend to be a comedy of errors. In order to qualify for an official diagnosis of celiac disease, there has to be enough damage to qualify for at least a Marsh 3 level of damage. Here's a description of the Marsh scoring system taken from pages 10–11 of my book:
It typically takes years of accumulating intestinal damage to reach a Marsh 3 level, but it is very common for LC patients to have at least a Marsh 1 level of damage in their small intestine. Due to the convoluted diagnosing techniques used by GI specialists when diagnosing celiac disease, a patient's intestines have to accumulate an unacceptable amount of damage before they will qualify for a celiac diagnosis. For a doctor to wait that long before handing down a diagnosis should, IMO, be illegal. What are the waiting for? Why are they waiting for the gut to be almost totally destroyed? The damage is obvious at a Marsh 1 level, and gluten sensitivity is also established. Why wait longer, and allow the patient to continue to suffer?The Marsh score refers to a method by which damage to the villi of the small intestine is quantified by analyzing biopsy samples taken from random locations in the small intestine. The lowest meaningful score is 1, and it corresponds to a condition in which at least 20 or more lymphocytes per 100 enterocytes can be counted in the tips of the villi. At a Marsh 2 level, an elevated lymphocyte count is present and the crypts (the depressions that resemble tubes in the intestinal surface between the villi) are enlarged. By the time the damage reaches a Marsh 3 level, the markers of the first two stages are still present and the villi have begun to shrink and flatten. This type of damage is known as villus atrophy and the extent is specified by three damage levels.
3a corresponds to partial villus atrophy
3b corresponds to subtotal villus atrophy
3c corresponds to total villus atrophy
At a Marsh 4 level, the villi are totally atrophied and the crypts have also shrunk. By the time this stage is reached, malabsorption of nutrients is usually a significant problem.
If you have the pathology report for the upper endoscopy exam, it should show the actual extent of inflammation in the small intestine, based on examination of any biopsy samples taken. The report will be written in "doctorspeak", but we understand doctorspeak around here.
You are most welcome.
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
Hi Ellen,
Sure, IgA stands for Immunoglobulin A. If we have selective IgA deficiency (or one of certain other immune system disorders), our immune system is not capable of producing normal amounts of IgA. That means that we will not respond normally to IgA antigens, so the lab tests normally used to detect IgA antibodies will not work properly. The tests will be biased toward false negative results.
Tex
Sure, IgA stands for Immunoglobulin A. If we have selective IgA deficiency (or one of certain other immune system disorders), our immune system is not capable of producing normal amounts of IgA. That means that we will not respond normally to IgA antigens, so the lab tests normally used to detect IgA antibodies will not work properly. The tests will be biased toward false negative results.
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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.