Hi,
I know Enterlob is highly recommended here. I just got en email from the ND I have been consulting with since the end of April, 2011. Wanted to post it here, and wondering what anyone thinks of it.
Hi Paula, The lab is called Cyrex Laboratories and their website is www.cyrexlabs.com . They have a variety of tests, but the one I would consider for you would be just for the gluten. I'll have to get price from the other practitioner for you as he has the account, and I am not set up with them yet, so I will try to get those for you when I'm back from Christmas break (heading to Canada) as he's out of the office for the rest of this week. I will get back to you as soon as I can.
Any opinions?
Thank you.
Paula
Recommendation from ND....
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humbird753
- Rockhopper Penguin
- Posts: 1014
- Joined: Mon Nov 28, 2011 4:44 pm
- Location: Wisconsin
Recommendation from ND....
Paula
"You'll never know how strong you are until being strong is the only choice you have."
"Life is not about waiting for the storm to pass... It's learning to dance in the rain."
"You'll never know how strong you are until being strong is the only choice you have."
"Life is not about waiting for the storm to pass... It's learning to dance in the rain."
Paula,
I think the Enterolab testing is less expensive, if that is a factor.
And their tests are also unique - blood tests miss gluten sensitivity unless it's quite advanced, but the stool tests provided by Enterolab can catch this many months or years before the antibodies show up in our blood. This is GOOD, because hopefully discontinuing gluten can stop our bodies from becoming so damaged that we have systemic antibodies in the bloodstream, and the damage to other systems that may result.
Many people have tests run that tell them that gluten is no problem, but they get sicker and sicker. Frustratingly, the celiac 'experts' also say that gluten sensitivity/celiac is wildly underdiagnosed, but they never seem to think... gee, is there something to examine about our diagnostic methods or criteria?
I am guessing, but I bet for the price of testing just gluten via Cyrex, you could get further info from Enterolabs (maybe genetics, for family members, or other foods such as dairy?). I looked into these prices some time ago, but I am sure they change from time to time.
Sara
I think the Enterolab testing is less expensive, if that is a factor.
And their tests are also unique - blood tests miss gluten sensitivity unless it's quite advanced, but the stool tests provided by Enterolab can catch this many months or years before the antibodies show up in our blood. This is GOOD, because hopefully discontinuing gluten can stop our bodies from becoming so damaged that we have systemic antibodies in the bloodstream, and the damage to other systems that may result.
Many people have tests run that tell them that gluten is no problem, but they get sicker and sicker. Frustratingly, the celiac 'experts' also say that gluten sensitivity/celiac is wildly underdiagnosed, but they never seem to think... gee, is there something to examine about our diagnostic methods or criteria?
I am guessing, but I bet for the price of testing just gluten via Cyrex, you could get further info from Enterolabs (maybe genetics, for family members, or other foods such as dairy?). I looked into these prices some time ago, but I am sure they change from time to time.
Sara
Paula,
My doctor ordered celiac cross-reactivity testing and gut permeability testing from Cyrex labs and my insurance covered some of it. The first test identified my sesame sensitivity (I never would have suspected) and sensitivity to "polish wheat". The gut permeability results were no surprise.
If your insurance is paying for part of your ND visits, it may cover Cyrex. But generally, I think the Enterolab results were more helpful. If I hadn't done Enterolab myself, I imagine my doc would have ordered similar tests from Cyrex.
My doctor ordered celiac cross-reactivity testing and gut permeability testing from Cyrex labs and my insurance covered some of it. The first test identified my sesame sensitivity (I never would have suspected) and sensitivity to "polish wheat". The gut permeability results were no surprise.
If your insurance is paying for part of your ND visits, it may cover Cyrex. But generally, I think the Enterolab results were more helpful. If I hadn't done Enterolab myself, I imagine my doc would have ordered similar tests from Cyrex.
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humbird753
- Rockhopper Penguin
- Posts: 1014
- Joined: Mon Nov 28, 2011 4:44 pm
- Location: Wisconsin
Hi Sara and Zizzle. No - my insurance company has not paid for any of the expenses I have incurred since going to the ND. So, it is important to me to keep my costs down. Yet, as I posted in another thread, I do not want to have tests done that are not going to give me true results either. I really appreciate your comments.
I, like everyone else on this site, am trying to figure out all of this and many here have had trial and error with some things and are a good source of reference in hopes of avoiding wasting time and/or money.
My PCP was the one who commented by saying, "this is life altering." But when I made that comment to my ND, she stated, "this is compromising your health." However, the regimen she has had me on since the end of April, 2011 (8 months) has been almost impossible to adhere to - 25+ pills/capsules plus 5 powder mixed drinks per day with no results. I believe it was the end of September she said I should try a gluten-free diet also. When I came on this site others here were explaining why some of what she has had me on was not a good idea (Herbulk, Endefen, Digestin, Lipogen and Phosphorex), so I stopped taking those. I do continue taking the UltraInflamX, probiotics and vitamins B Complex, Calcium with D and a Multivitamin, and have gone on a gluten-free diet. I know there is already an improvement even though it has only been since 12/5/11. So...I do value comments I get from those here.
My PCP at this time only tells me I should continue with the ND recommendations (including a gluten-free diet), and will not recommend Entecort or any other drugs. Now I am beginning to question all that the ND has recommended (and it has been costly and ineffective). I feel if I stop consulting with the ND, I will have no doctor to work with at all. Is it wise to play my own doctor, or do I need a "professional" of some sort to help me walk through this??
The ND I consult with is 4-1/2 hours from where I live, so I have only gone to see her for my initial conference and then on days when she has wanted me to give blood for tests. Other than that, we keep in touch via email and phone calls. I am beginning to feel I need to "fire" her (so to speak), because although I am still not completely educated on all of this, I also don't feel she is leading me on the right course. Just a hunch, of course, since I do not understand all of this.
Is there anyone else here who is working alone to resolve their issues?? Or should I try to find another ND to work with??
Any comments would be appreciated.
Paula
I, like everyone else on this site, am trying to figure out all of this and many here have had trial and error with some things and are a good source of reference in hopes of avoiding wasting time and/or money.
My PCP was the one who commented by saying, "this is life altering." But when I made that comment to my ND, she stated, "this is compromising your health." However, the regimen she has had me on since the end of April, 2011 (8 months) has been almost impossible to adhere to - 25+ pills/capsules plus 5 powder mixed drinks per day with no results. I believe it was the end of September she said I should try a gluten-free diet also. When I came on this site others here were explaining why some of what she has had me on was not a good idea (Herbulk, Endefen, Digestin, Lipogen and Phosphorex), so I stopped taking those. I do continue taking the UltraInflamX, probiotics and vitamins B Complex, Calcium with D and a Multivitamin, and have gone on a gluten-free diet. I know there is already an improvement even though it has only been since 12/5/11. So...I do value comments I get from those here.
My PCP at this time only tells me I should continue with the ND recommendations (including a gluten-free diet), and will not recommend Entecort or any other drugs. Now I am beginning to question all that the ND has recommended (and it has been costly and ineffective). I feel if I stop consulting with the ND, I will have no doctor to work with at all. Is it wise to play my own doctor, or do I need a "professional" of some sort to help me walk through this??
The ND I consult with is 4-1/2 hours from where I live, so I have only gone to see her for my initial conference and then on days when she has wanted me to give blood for tests. Other than that, we keep in touch via email and phone calls. I am beginning to feel I need to "fire" her (so to speak), because although I am still not completely educated on all of this, I also don't feel she is leading me on the right course. Just a hunch, of course, since I do not understand all of this.
Is there anyone else here who is working alone to resolve their issues?? Or should I try to find another ND to work with??
Any comments would be appreciated.
Paula
Paula
"You'll never know how strong you are until being strong is the only choice you have."
"Life is not about waiting for the storm to pass... It's learning to dance in the rain."
"You'll never know how strong you are until being strong is the only choice you have."
"Life is not about waiting for the storm to pass... It's learning to dance in the rain."
I learned about treating MC on this site from Tex, Dr. Polly and the Potty People. I had to teach the info to my GI (and pay for the visit.) It was a very slow process getting her to listen to me. I guess the fact that I wasn't taking any of the meds she offered, made her take notice.
Your ND doesn't seem to be helping you........
Your ND doesn't seem to be helping you........
DISCLAIMER: I am not a doctor and don't play one on TV.
LDN July 18, 2014
Joan
LDN July 18, 2014
Joan
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MaggieRedwings
- King Penguin
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- Location: SE Pennsylvania
Hi Paula,
I feel that there are many of us here that are going this alone. I personally gave up on my Gi and at one point, had a ND but just too much "junk" prescribed that did no good for me. Going it alone for me is diet only. Also, corresponding with a doctor without seeing them is just not my cup of tea. I am sure others will give you their opinions also, but just my 2 cents.
Maggie
I feel that there are many of us here that are going this alone. I personally gave up on my Gi and at one point, had a ND but just too much "junk" prescribed that did no good for me. Going it alone for me is diet only. Also, corresponding with a doctor without seeing them is just not my cup of tea. I am sure others will give you their opinions also, but just my 2 cents.
Maggie
Maggie Scarpone
___________________
Resident Birder - I live to bird and enjoy life!
___________________
Resident Birder - I live to bird and enjoy life!
I'm seeing a DO who specializes in complementary medicine. He's also got me on UltraInflamX, probiotics and vitamins B Complex, Calcium/Magnesium, lots of vitamin D, fish oil, and curcumin/turmeric. He was very mindful of my intolerances when deciding on the supplements, so I'm glad he didn't pile more on. The shake and the curcumin were the only things I wasn't already taking through my own research. I contemplated going to NDs for a long time, but I feared all they would do was prescribe supplements. I'm lucky my doc also does acupuncture, musculoskeletal manipulation, and regular medicine.
I went to him because I was tired of being my own doctor. I'd researched nearly everything I could and I had a number of options to choose from. I needed to know that the path I selected made sense, of if I should be doing more or less. Luckily his plan was not very different from mine, but he did uncover other underlying health issues, and I'm grateful for that. He also ruled out various digestive issues which I thought could be related to the MC -- namely yeast overgrowth, lack of lactobacilli, overgrowth of pathogenic bacteria, bile acid levels, etc. Knowing there is not a more serious underlying cause to the MC further convinced me that diet and a sensable mix of supplements is the answer.
I suppose the test I found MOST helpful was the Complete Dietary Stool Analysis 2.0 from Genova Labs: http://www.gdx.net/product/10006
I went to him because I was tired of being my own doctor. I'd researched nearly everything I could and I had a number of options to choose from. I needed to know that the path I selected made sense, of if I should be doing more or less. Luckily his plan was not very different from mine, but he did uncover other underlying health issues, and I'm grateful for that. He also ruled out various digestive issues which I thought could be related to the MC -- namely yeast overgrowth, lack of lactobacilli, overgrowth of pathogenic bacteria, bile acid levels, etc. Knowing there is not a more serious underlying cause to the MC further convinced me that diet and a sensable mix of supplements is the answer.
I suppose the test I found MOST helpful was the Complete Dietary Stool Analysis 2.0 from Genova Labs: http://www.gdx.net/product/10006
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draperygoddess
- Rockhopper Penguin
- Posts: 558
- Joined: Mon Aug 29, 2011 6:49 am
- Location: Tennessee
Paula,
That's an awful lot of "stuff" you're taking! My first thought would be that any med or supplement can potentially cause a reaction (or make it worse). There are those on the forum who know much more about that than I do, so I will not presume to tell you what you should or shouldn't take, but it's a thought.
Most of us are sensitive to more than just gluten, especially in the beginning. Dairy and soy are also REALLLYY popular around here.
Like you, almost all of us are "going it alone." It seems scary at first, not having a doctor to guide you through it, but the fact is that most of the doctors out there don't know a thing about MC or gluten sensitivity, so they're not really leading us anywhere. I learned more on this forum in a month than my doctors ever told me, and the suggestions I found here were the only ones that worked for me. There is a general distrust in the medical profession for anything relating diet to digestive problems (which seems counterintuitive!), so don't expect a doctor to agree with what you see here. The difference is, there are over a thousand members on this forum, and the vast majority of them would tell you that diet was THE KEY for them getting control of their symptoms. (I would be one of them, of course!)
I found the Enterolab tests to be very enlightening, but you can figure out a lot on your own by keeping a diary of everything you eat, drink, or take, and your symptoms (GI and otherwise), and when they occurred. The food diary was how i figured out most of mine. Enterolab confirmed some things for me, and also showed I had two GS genes, which is valuable information for my children to have.
That's an awful lot of "stuff" you're taking! My first thought would be that any med or supplement can potentially cause a reaction (or make it worse). There are those on the forum who know much more about that than I do, so I will not presume to tell you what you should or shouldn't take, but it's a thought.
Most of us are sensitive to more than just gluten, especially in the beginning. Dairy and soy are also REALLLYY popular around here.
Like you, almost all of us are "going it alone." It seems scary at first, not having a doctor to guide you through it, but the fact is that most of the doctors out there don't know a thing about MC or gluten sensitivity, so they're not really leading us anywhere. I learned more on this forum in a month than my doctors ever told me, and the suggestions I found here were the only ones that worked for me. There is a general distrust in the medical profession for anything relating diet to digestive problems (which seems counterintuitive!), so don't expect a doctor to agree with what you see here. The difference is, there are over a thousand members on this forum, and the vast majority of them would tell you that diet was THE KEY for them getting control of their symptoms. (I would be one of them, of course!)
I found the Enterolab tests to be very enlightening, but you can figure out a lot on your own by keeping a diary of everything you eat, drink, or take, and your symptoms (GI and otherwise), and when they occurred. The food diary was how i figured out most of mine. Enterolab confirmed some things for me, and also showed I had two GS genes, which is valuable information for my children to have.
Cynthia
"Can we fix it? YES WE CAN!" -Bob the Builder
"Can we fix it? YES WE CAN!" -Bob the Builder
Paula,
I am not going it alone ONLY in the sense that I am now taking entocort. I am going to start cutting it down SLOWLY. But I haven't taken much from any docs I have seen. Except for the last one, (who still hasn't answered my email) they have been completely ignorant and unable (and unwilling - in the sense that they negated all other tests) to help me.
And I am not going it alone because I have the wonderful people on this board who have been helping and supporting me every step of the way.
Controlling my MC has been particularly hard because of my propensity to C dominated MC, but the patience (which I don't have) of the people here has been infinite.
When I finally get control it will be because of Tex and Co., not because any MDs, NDs, or any other letters after names, and in spite of them.
That's just my take!
Paula, one day it will happen!
I am not going it alone ONLY in the sense that I am now taking entocort. I am going to start cutting it down SLOWLY. But I haven't taken much from any docs I have seen. Except for the last one, (who still hasn't answered my email) they have been completely ignorant and unable (and unwilling - in the sense that they negated all other tests) to help me.
And I am not going it alone because I have the wonderful people on this board who have been helping and supporting me every step of the way.
Controlling my MC has been particularly hard because of my propensity to C dominated MC, but the patience (which I don't have) of the people here has been infinite.
When I finally get control it will be because of Tex and Co., not because any MDs, NDs, or any other letters after names, and in spite of them.
That's just my take!
Paula, one day it will happen!
Cynthia's comments about treatments are right on target. Doctors are an essential part of the equation if/when we need tests or prescriptions. Otherwise, for the treatments required to resolve our symptoms, and to enable us to reach stable remission, (and maintain long-term remission), most doctors don't know enough about the disease to be able to effectively treat it. Truly knowledgeable GI docs are few and far between, (as far as treating MC is concerned).Paula wrote:Is it wise to play my own doctor, or do I need a "professional" of some sort to help me walk through this?? shrug
When my GI doc told me that there was nothing wrong with me, (after I went through all the tests, including CT scans, sigmoidoscopy, X-rays, blood tests, colonoscopy, etc.), I never went back. I couldn't see any point to it. I started researching, and keeping a food/reaction diary, and I eventually found the solution in diet changes. If I had found the old discussion board much sooner, I could have saved a lot of time and misery.
With MC, (like celiac disease), once we have a diagnosis, we can effectively treat it ourselves. It's not like having cancer, or some other issue that absolutely requires medical intervention at times.
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.
Paula, I think there are quite a few of us that have had the same journey you've been on, myself included. I also went through a time of a lot of recommended (and expensive) supplements that didn't do much good (except perhaps for those who made a profit off of them). I think I've developed a mindset that I know my body better than any doctor and that one treatment doesn't fit all. I was sent home from the Mayo Clinic after my diagnosis of MC with the recommendation to take some immodium and if that didn't help come back (my PCP was on vacation at the time, but that's still no excuse). When I read about MC and how chronic it was I was quite alarmed and started doing my own research. Thankfully, I found this site and found remission.
I'm a DIY MC healer, too. I was pretty much in remission when I informed my PCP about my MC - which was originally diagnosed in 1997, but mysteriously went away for years, till it came back far worse. By then I had my Enterolab results and had been GF/DF/etc.F for months. I have not seen a GI doctor since 1997, when I was diagnosed, and though I liked him, the only thing his office wanted to talk to me about was scheduling my overdue colonoscopy. I wanted to get more mileage on my healing first, and they said I could schedule an (extremely) expensive consultation instead. And I did - but then I realized, I don't want medication, I don't want a procedure, and I seem to be doing OK. So I canceled it ;)
I am grateful that my original GI diagnosed my MC all those years ago - that gave me something to Google and find my way here when I was so sick. If I had been unable to tolerate Pepto in my first couple of weeks, I bet I would probably have gotten a doctor involved. I was having trouble stopping the extreme D and weight loss, and was dehydrated enough that it took me days to compose my first post on this forum, I was pretty dazed and confused. But I knew as soon as I got here that I was on the right track, and that I could turn it around, and that relief was enough to convince my husband that we didn't need to go to the ER.
I came here already persuaded that GF might be something I should try - I had *NO IDEA* how severely gluten sensitive I would turn out to be. I will never intentionally put a gluten-containing food in my mouth, and expect to remain grain-free and legume-free for life as well, with rare micro-portions of rice or corn, very occasionally. (And maybe similar experiments with chickpeas or lentils, 3-4 times a year? I will think about that when I do MRT.) I realize it's possible that I "can" eat all kinds of things that I don't, but that doesn't bother me ;)
I also found the Enterolab testing very helpful, and I do agree with Cynthia that you can get a lot done via your own testing. In a sense, if a lab test says something OK, and it makes us feel awful, we will always believe in our own testing anyway...
Gosh, I got long-winded. I've been 'reflecting back' in various ways this past week or so... I hope you look back a few months down the road and marvel at how far you've come!
Sara
I am grateful that my original GI diagnosed my MC all those years ago - that gave me something to Google and find my way here when I was so sick. If I had been unable to tolerate Pepto in my first couple of weeks, I bet I would probably have gotten a doctor involved. I was having trouble stopping the extreme D and weight loss, and was dehydrated enough that it took me days to compose my first post on this forum, I was pretty dazed and confused. But I knew as soon as I got here that I was on the right track, and that I could turn it around, and that relief was enough to convince my husband that we didn't need to go to the ER.
I came here already persuaded that GF might be something I should try - I had *NO IDEA* how severely gluten sensitive I would turn out to be. I will never intentionally put a gluten-containing food in my mouth, and expect to remain grain-free and legume-free for life as well, with rare micro-portions of rice or corn, very occasionally. (And maybe similar experiments with chickpeas or lentils, 3-4 times a year? I will think about that when I do MRT.) I realize it's possible that I "can" eat all kinds of things that I don't, but that doesn't bother me ;)
I also found the Enterolab testing very helpful, and I do agree with Cynthia that you can get a lot done via your own testing. In a sense, if a lab test says something OK, and it makes us feel awful, we will always believe in our own testing anyway...
Gosh, I got long-winded. I've been 'reflecting back' in various ways this past week or so... I hope you look back a few months down the road and marvel at how far you've come!
Sara