Is their anyway to test for MC without a colonoscopy?
Long story short, my kids:ages 6, 4.5, 1.5 have already been told they have "IBS like symptoms and some lactose intolerance"...
Seeing as how I was also told that when I was a child, I'm wondering if I've had this all along and it just went misdiagnosed...
Thank you, in advance, to anyone for help!
Children and MC, Getting a Diagnosis
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Children and MC, Getting a Diagnosis
"Let us hold fast, doggedly with a death grip, to the truth of the inspiration of God's Word."
C. H. Spurgeon
"Failure to know what God is really like...destroys the soul, ruins society, and leaves people to eternal ruin."
Dallas Willard
C. H. Spurgeon
"Failure to know what God is really like...destroys the soul, ruins society, and leaves people to eternal ruin."
Dallas Willard
Welcome!
I started with "IBS-like symptoms and lactose intolerance." It took about 9 years of that before the big D hit one day - running to the bathroom 6+ times a day. I hope you can prevent that day from ever happeneing for your kids. I wonder if I would have tested positive for LC in those early years, or if the inflammation and gluten damage had to accrue for some time to be diagnosable through biopsies. Is there a reason you want to know if they have MC? Have they been tested for celiac disease yet? I would do that first if your insurance will cover it. See if your doc will order gene testing too for the HLA DQ 2/8 celiac genes. If the antibody bloodwork is negative (actually, either way), I would consider Enterolab testing for food sensitivities - it checks for antibodies in the stool before it's evident in the blood. Perhaps test the oldest or sickest child first, and assume the others are likely to have the same sensitivities.
I'm in the process of testing my 6 year old who is slow-growing and developing lactose intolerance. I've ordered the gene test first through Enterolab (it's a simple cheek swab test - he freaks about about bloodwork)
I started with "IBS-like symptoms and lactose intolerance." It took about 9 years of that before the big D hit one day - running to the bathroom 6+ times a day. I hope you can prevent that day from ever happeneing for your kids. I wonder if I would have tested positive for LC in those early years, or if the inflammation and gluten damage had to accrue for some time to be diagnosable through biopsies. Is there a reason you want to know if they have MC? Have they been tested for celiac disease yet? I would do that first if your insurance will cover it. See if your doc will order gene testing too for the HLA DQ 2/8 celiac genes. If the antibody bloodwork is negative (actually, either way), I would consider Enterolab testing for food sensitivities - it checks for antibodies in the stool before it's evident in the blood. Perhaps test the oldest or sickest child first, and assume the others are likely to have the same sensitivities.
I'm in the process of testing my 6 year old who is slow-growing and developing lactose intolerance. I've ordered the gene test first through Enterolab (it's a simple cheek swab test - he freaks about about bloodwork)
Enterolab's Fecal Lactoferrin test is primarily directed at Crohn's disease and ulcerative colitis, but it will sometimes show positive results for MC, as well. It's the only non-invasive test that I'm aware of that might be helpful, other than some of the tests to detect food sensitivities, or the gene tests, as Zizzle suggested.
https://www.enterolab.com/StaticPages/T ... actoferrin
There are blood tests that can be used for screening for Crohn's or UC, but I doubt that they would be helpful for diagnosing MC.
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1755933/
Tex
https://www.enterolab.com/StaticPages/T ... actoferrin
There are blood tests that can be used for screening for Crohn's or UC, but I doubt that they would be helpful for diagnosing MC.
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1755933/
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.
Thank you for your help, Zizzle and Tex!
I was unable to prevent the D episodes...one day my 6 year old went 5 times, but I kept a food diary for over a month, and that has seemed to help with possible food sensitivities.
3 Years ago we tested my 2 oldest daughters through Immuno Labs for the IGG antibodies, to a lot of foods, and we did and egg subfraction test, and anti gliadin/gluten test.
Both of them had some antibodies to 11 (1.75 yr old at the time) and 7 (3 year old at the time) foods, high with egg, dairy, and gliadin/gluten...
The 2 of them were tested for DQ2 & 8 and were negative. I've never been tested.
One sidenote: When the GI DR told me I had LC, she said that I probably also have Celiac, even though they didn't find it on the biopsies and that we'd probably see it in 10 years...It's my understanding if I don't eat gluten that shouldn't happen...
So, with the previous labs that have been done on the girls, only assumptions have been made by the Kaiser Dr's...the holistic Dr we see he also wants us to do the food sensitivity tests as soon as we can afford them (saving up!)
With Enterolabs stool test for antibodies, do you have to be eating the food in order for it to be accurate?
The Lactoferrin test (that Tex suggested) seems like a really good possibility...if I understand, if it comes back positive, there's no reason to dispute, but if it comes back negative it doesn't mean they don't have it...so at least it might help.
Thank you both!! :)
I was unable to prevent the D episodes...one day my 6 year old went 5 times, but I kept a food diary for over a month, and that has seemed to help with possible food sensitivities.
3 Years ago we tested my 2 oldest daughters through Immuno Labs for the IGG antibodies, to a lot of foods, and we did and egg subfraction test, and anti gliadin/gluten test.
Both of them had some antibodies to 11 (1.75 yr old at the time) and 7 (3 year old at the time) foods, high with egg, dairy, and gliadin/gluten...
The 2 of them were tested for DQ2 & 8 and were negative. I've never been tested.
One sidenote: When the GI DR told me I had LC, she said that I probably also have Celiac, even though they didn't find it on the biopsies and that we'd probably see it in 10 years...It's my understanding if I don't eat gluten that shouldn't happen...
So, with the previous labs that have been done on the girls, only assumptions have been made by the Kaiser Dr's...the holistic Dr we see he also wants us to do the food sensitivity tests as soon as we can afford them (saving up!)
With Enterolabs stool test for antibodies, do you have to be eating the food in order for it to be accurate?
The Lactoferrin test (that Tex suggested) seems like a really good possibility...if I understand, if it comes back positive, there's no reason to dispute, but if it comes back negative it doesn't mean they don't have it...so at least it might help.
Thank you both!! :)
"Let us hold fast, doggedly with a death grip, to the truth of the inspiration of God's Word."
C. H. Spurgeon
"Failure to know what God is really like...destroys the soul, ruins society, and leaves people to eternal ruin."
Dallas Willard
C. H. Spurgeon
"Failure to know what God is really like...destroys the soul, ruins society, and leaves people to eternal ruin."
Dallas Willard
Enterolab's stool tests for gliadin antibodies are so sensitive that gluten can be reliably detected up to a year after it has been removed from the diet, but the antibodies to most other foods fade away after a few weeks to a month or so of abstinence, so most foods should not be removed from the diet prior to testing, for optimum results, certainly not more than a couple of weeks before collecting a sample.Kellybean wrote:With Enterolabs stool test for antibodies, do you have to be eating the food in order for it to be accurate?
I believe you're correct about the Fecal Lactoferrin test results.
You're 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.
Kelly,
I was misdiagnosed for over 5 years. Was constantly told I had IBS or it was all in my head. I think you have every right to have extended concern for your children. Also, IBS is not a diagnosis like MC that is proved pathologically. It is a "diagnoses of exclusion". Which means, if they can't figure out what is wrong, they label you with IBS. IOW, there is no disease called IBS, IMHO.
Rich
I was misdiagnosed for over 5 years. Was constantly told I had IBS or it was all in my head. I think you have every right to have extended concern for your children. Also, IBS is not a diagnosis like MC that is proved pathologically. It is a "diagnoses of exclusion". Which means, if they can't figure out what is wrong, they label you with IBS. IOW, there is no disease called IBS, IMHO.
Rich
"It's not what I believe. It's what I can prove." - A Few Good Men
Kellybean,
I completely understand not wanting an invasive test. My son had some symptoms his whole life and at age 9 when I got sick) I did Enterolab testing on him (stool test and genetic test). He had a celiac genee and was gluten and dairy reactive so he went on GF/DF diet. About a year later he still had some symptoims and we did MRT and found out he had a major corn problem. Now he is asymptomatic unless he cheats. The problem with this approach though is that I do not know if he is truly celiac or has MC, but the diet he would be on is the same so I am comfotable with this.
Mary Beth
I completely understand not wanting an invasive test. My son had some symptoms his whole life and at age 9 when I got sick) I did Enterolab testing on him (stool test and genetic test). He had a celiac genee and was gluten and dairy reactive so he went on GF/DF diet. About a year later he still had some symptoims and we did MRT and found out he had a major corn problem. Now he is asymptomatic unless he cheats. The problem with this approach though is that I do not know if he is truly celiac or has MC, but the diet he would be on is the same so I am comfotable with this.
Mary Beth
"If you believe it will work out, you'll see opportunities. If you believe it won't you will see obstacles." - Dr. Wayne Dyer
Well gosh Joe, besides the obvious issues, such as being quite expensive, and risky, (there is always a statistical risk of perforation, and it's not a negligible risk), when you were a pre-teen, would you have been OK with some guy sticking a long, flexible steel tube up your butt? Heck, when I was that age, at best, I would have run away from home, and at worst, I would have probably crossed the border, and slipped into Mexico, if someone had tried to convince me that I needed to go through that kind of BS.Joe wrote:What are the issues with performing a pediatric colonoscopy?
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.
Okay, to follow-up:
THANK YOU, to everyone who has commented!!!!
Upon reviewing her records, they found a trace of white blood cells, sugar and fat in her stool...
They have not done those stool tests yet on my other 2 daughters...The Dr. is assuming they all have whatever it is, and making one the "giune pig" for all seems to suit her...
After much "educated" (I state that loosely) pestering to the GI specialist with quotes from 'webmd.com' she is going to discuss "Us" at some regional discussion with other GI dr's... And she is placing a referral for a 2nd opinion by another GI specialist.
TEX: Thank you, again! You're hilarious...slipping into Mexico!!! Ha! Ha!
HOOSIER1: I'm so sorry you went so long without being diagnosed, its awful...And thank you for the explanation about the label IBS. Interesting...every time I was told it, it was like it was with certainty, never was I given the impression that they might be wrong...there's probably a million other people out there sick, and not getting better help, because someone pretends to know everything, and is believed, but they really don't know...sad.
JOEFNH: Aside from the increased risk of perforation in children, I am verrrrry sensitive to anesthesia, and get really sick, so bad that for my most recent EGD and Colonoscopy - I was extremely motivated to do them without anesthesia - talk about feeling like your choking for 10 minutes, I could see myself having to be checked into a hospital for dehydration since I spent the night before prepping for them, and then my response to the meds would be more dehydration...so in seeing that me and my children have so many similarities with reactions to foods and medicines, My husband and I are deeply concerned about putting them through something, that would only proove me right...(Because we believe all 3 of them have MC and 1 has both MC & Celiac) and that my main reason for doing it, would be to proove to the overseeing Doctors...so in light of that, that the colonoscopy biopsies would be to just get the doctor on our side more, we have decided against putting them through yet another procedure...They already have to have blood drawn every 3 months to check their cholesterol (Because it's high), thyroid (because it's been high and low), and various vitamins and minerals (low and some too high), and that's already pushing their stress levels to panic/breakdown mode. I'm sure you understand...in the long run when they're older I'm sure they'll want it done. I know I would, because I'm curious.
Mary Beth: I'm with you! It's hard not knowing for sure...but you've got good proof, he gets better on the restricted diet, and bad when he cheats. I'm sure you are doing an excellent job!
THANK YOU ALL, Again,
Kelly
THANK YOU, to everyone who has commented!!!!
Upon reviewing her records, they found a trace of white blood cells, sugar and fat in her stool...
They have not done those stool tests yet on my other 2 daughters...The Dr. is assuming they all have whatever it is, and making one the "giune pig" for all seems to suit her...
After much "educated" (I state that loosely) pestering to the GI specialist with quotes from 'webmd.com' she is going to discuss "Us" at some regional discussion with other GI dr's... And she is placing a referral for a 2nd opinion by another GI specialist.
TEX: Thank you, again! You're hilarious...slipping into Mexico!!! Ha! Ha!
HOOSIER1: I'm so sorry you went so long without being diagnosed, its awful...And thank you for the explanation about the label IBS. Interesting...every time I was told it, it was like it was with certainty, never was I given the impression that they might be wrong...there's probably a million other people out there sick, and not getting better help, because someone pretends to know everything, and is believed, but they really don't know...sad.
JOEFNH: Aside from the increased risk of perforation in children, I am verrrrry sensitive to anesthesia, and get really sick, so bad that for my most recent EGD and Colonoscopy - I was extremely motivated to do them without anesthesia - talk about feeling like your choking for 10 minutes, I could see myself having to be checked into a hospital for dehydration since I spent the night before prepping for them, and then my response to the meds would be more dehydration...so in seeing that me and my children have so many similarities with reactions to foods and medicines, My husband and I are deeply concerned about putting them through something, that would only proove me right...(Because we believe all 3 of them have MC and 1 has both MC & Celiac) and that my main reason for doing it, would be to proove to the overseeing Doctors...so in light of that, that the colonoscopy biopsies would be to just get the doctor on our side more, we have decided against putting them through yet another procedure...They already have to have blood drawn every 3 months to check their cholesterol (Because it's high), thyroid (because it's been high and low), and various vitamins and minerals (low and some too high), and that's already pushing their stress levels to panic/breakdown mode. I'm sure you understand...in the long run when they're older I'm sure they'll want it done. I know I would, because I'm curious.
Mary Beth: I'm with you! It's hard not knowing for sure...but you've got good proof, he gets better on the restricted diet, and bad when he cheats. I'm sure you are doing an excellent job!
THANK YOU ALL, Again,
Kelly
"Let us hold fast, doggedly with a death grip, to the truth of the inspiration of God's Word."
C. H. Spurgeon
"Failure to know what God is really like...destroys the soul, ruins society, and leaves people to eternal ruin."
Dallas Willard
C. H. Spurgeon
"Failure to know what God is really like...destroys the soul, ruins society, and leaves people to eternal ruin."
Dallas Willard