i recently was diagnosed (1 month ago) with MC- after having intestinal issues for 3 years- i'm presently taking Entocort (3 wks now) and have started the elimination diet recommended by Jean. i found wayne's book thru amazon and was validated from the start - i kept saying "oh, that's me...oh that's me again, oh that too"....it was such a wonderful feeling and such GREAT information...then i found this group...words can't express how wonderful this is...
i've been dairy free for 3 years now (GI doc had told me to go DF and meat free)...i was vegan for about a year, then introduced chicken and turkey back into diet...i was eating tremendous amounts of soy for these 3 yrs, but will now go SF...a couple more weeks on elimination diet and i will start to incorporate other foods....i'm hoping i can eat corn, but i will definitely stay GF/DF/SF ...i am so thankful for this group...nowhere else have i seen such matter of fact comments and discussions revolving around POOP (and i'm in the medical field) ...it's really great...
i was amazed at all the things i will be able to eat even though at first i was thinking of all the things i couldn't have anymore!...now though, i'm quite OPTIMISTIC about my future with foods....anything is better than these last 3 yrs of horribleness...thank you SO MUCH for all of your great info, wonderful people who know EXACTLY what this disease is and how frustrating and debilitating it is ...i've bought some Paleo books too to help with what i can/cannot eat ...
THANK YOU-NEWLY DIAGNOSED WITH MC
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Hi Sue Ann!
You may want to do testing with Enterolab.
That gave me a definitive place to start eliminating foods that I was reacting too....I was very surprised by my results, as some of the foods I ate everyday.....and some of them I never ate!
Once I began eliminating the foods that were causing reactions, I started down the road to recovery. I did not take any pharmaceuticals during my recovery. I did it by controlling my diet.
Good luck!!!
Linda
You may want to do testing with Enterolab.
That gave me a definitive place to start eliminating foods that I was reacting too....I was very surprised by my results, as some of the foods I ate everyday.....and some of them I never ate!
Once I began eliminating the foods that were causing reactions, I started down the road to recovery. I did not take any pharmaceuticals during my recovery. I did it by controlling my diet.
Good luck!!!
Linda
Linda :)
LC Oct. 2012
MTHFR gene mutation and many more....
LC Oct. 2012
MTHFR gene mutation and many more....
Hi Sue Ann,
Welcome to our Internet family. You are obviously a self-starter, and you are motivated, so I have no doubt that you are well on your way toward getting your life back.
Thank you for the kind words. It is optimistic and inspiring posts such as yours that make this a great place to share information about the disease.
I think it's interesting how most of us come here believing that we have been eating a healthy diet, and yet after this disease rearranges our priorities, we discover that it has persuaded us to eat in a much healthier way. That silver lining has to be beneficial for long-term health and longevity. It's a shame that it gets its message across by such a brutal kick in the gut, but I suppose if it didn't mean business, many of us would just try to ignore it. I know I would have.
Again, welcome aboard and please feel free to ask anything.
Tex
Welcome to our Internet family. You are obviously a self-starter, and you are motivated, so I have no doubt that you are well on your way toward getting your life back.
Thank you for the kind words. It is optimistic and inspiring posts such as yours that make this a great place to share information about the disease.
I think it's interesting how most of us come here believing that we have been eating a healthy diet, and yet after this disease rearranges our priorities, we discover that it has persuaded us to eat in a much healthier way. That silver lining has to be beneficial for long-term health and longevity. It's a shame that it gets its message across by such a brutal kick in the gut, but I suppose if it didn't mean business, many of us would just try to ignore it. I know I would have.
Again, welcome aboard and please feel free to ask anything.
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.
i'm a motivated self-starter by default i think....i had bouts of diarrhea for about 3 wks a month or so ago and couldn't do much of anything except live in the bathroom...work got fed up with me and want me to go out on disability - i used up all my sick leave / vac time...i'm an x-ray tech in a a 1 tech clinic and we are short handed as far as per diem replacement techs go, so there were lots of days with no coverage and patients had to go elsewhere for their x-rays...i would like to avoid disability at this point - i'm 1-2 years away from retiring, plus i love my job and would like to continue with it, but i understand management's frustrations (mine also) with not knowing day to day if i was going to be ok to work...there is a bathroom close to me at work - just not close enough!!....after that long bout i had an urgent colonoscopy and the Dr took LOTS of biopsies which FINALLY showed the MC.
it was when i actually had a name for my disease that i was able to look it up and get started fixing myself...i'm diarrhea free for 2 wks now and "fingers crossed" i can continue that way
i talked with my PCP about ENTERO LABS and she proceeded to tell me that i would be wasting my money because antibodies could only be checked thru blood tests...i had been hoping she would write an RX so insurance would be more likely to reimburse - arguing with her did no good (i work with this doctor also, so didn't want to upset her too much!) so i decided to skip the lab tests and try food restrictions instead..plus i didn't like the idea of false negatives so diet became my main focus...
i'll be tapering off the Entocort in several more weeks and trying to control symptoms by diet...i'm seeing GI doc in 3 more months and i hope to show him how successful i have been..."fingers crossed" once again
it was when i actually had a name for my disease that i was able to look it up and get started fixing myself...i'm diarrhea free for 2 wks now and "fingers crossed" i can continue that way
i talked with my PCP about ENTERO LABS and she proceeded to tell me that i would be wasting my money because antibodies could only be checked thru blood tests...i had been hoping she would write an RX so insurance would be more likely to reimburse - arguing with her did no good (i work with this doctor also, so didn't want to upset her too much!) so i decided to skip the lab tests and try food restrictions instead..plus i didn't like the idea of false negatives so diet became my main focus...
i'll be tapering off the Entocort in several more weeks and trying to control symptoms by diet...i'm seeing GI doc in 3 more months and i hope to show him how successful i have been..."fingers crossed" once again
Sue Ann,
I'll let Tex address your docs beliefs regarding Enterolab. She is wrong about Enterolab. It was the best use of my money to date! Tex can explain the phisological details better than I can.
If you'd rather do the food route, only introduce one new food a day for 3-4 days at a time, and see if you have a reaction. It's doable, but a long slow process.
I'll let Tex address your docs beliefs regarding Enterolab. She is wrong about Enterolab. It was the best use of my money to date! Tex can explain the phisological details better than I can.
If you'd rather do the food route, only introduce one new food a day for 3-4 days at a time, and see if you have a reaction. It's doable, but a long slow process.
Linda :)
LC Oct. 2012
MTHFR gene mutation and many more....
LC Oct. 2012
MTHFR gene mutation and many more....
Sue Ann,
Your PCP has placed you between a rock and a hard place with her confusion about stool tests. Her position is understandable however, because stool testing in the past (and IMO much of it today, for that matter), was/is (as she put it) a waste of money. The ELISA-based IgA antibody tests offered by EnteroLab are a totally different situation however. They are accurate and reliable because the same person (who holds a PhD in chemistry) performs all of the tests, so that the results are accurate, consistent, and reliably repeatable.
The antibodies to food sensitivities are produced in the intestines (not in the blood), so why on earth would any logically-thinking person expect to find them in the blood? One looks for IgE and IgG antibodies in the blood, not IgA antibodies. IgE and IgG antibodies are the result of food allergies. Most doctors mistakenly believe that food intolerances are the same as food allergies. They are most definitely not. The antibodies that lead to the T-cell inflammation that causes MC are IgA antibodies, triggered by food intolerances, not the IgE antibodies associated with food allergies.
The gut (not the blood) is the domain of IgA antibodies. By the time detectible numbers of them find their way into the bloodstream, years of damage to the intestines have already accrued. That's the main reason why the average time from first symptoms to an official diagnosis of celiac disease in this country is still over 9 years, according to the latest research statistics. The IgA antibodies associated with gluten sensitivity can be found in stool samples almost immediately, whereas it typically takes years for them to show up at levels sufficient to trigger a positive result on a celiac blood test, due to the extremely poor sensitivity of the serum tests. The medical profession has really dropped the ball on early detection of celiac disease (early detection does not exist, because of their obsolete screening methods).
But I can certainly understand why you would not want to argue with a colleague who is basing her knowledge on obsolete information. Most doctors think they know what they are talking about, because they are paid for offering "expert" advice (whether it is actually expert or not), and they take their work seriously. And so obviously it hurts their professional pride if a patient argues with them about something they "know/believe" to be correct. Unfortunately mainstream medicine has dropped the ball on the EnteroLab tests because of a professional prejudice against the policy of the owner of the lab (a certified GI specialist who has MC himself) to offer lab tests direct to patients over the internet. As you are probably aware, that's a professional no-no in mainstream medical circles.
But you can certainly track down your food intolerances by carefully using an elimination diet, and many other members here (including me) have done so in the past. In my case, I wasn't even aware of the existence of the EnteroLab tests when my symptoms were at their worst (about 15 years ago), so I had to figure out my diet by trial and error.
If you have been taking budesonide for more than just a few months, then yes, you would have a significant risk of false negative results, unless your antibody levels were very high to begin with.
You're off to a good start with your recovery, and we will try to help in any way we can, if you keep us posted.
Best of luck with your recovery.
Tex
Your PCP has placed you between a rock and a hard place with her confusion about stool tests. Her position is understandable however, because stool testing in the past (and IMO much of it today, for that matter), was/is (as she put it) a waste of money. The ELISA-based IgA antibody tests offered by EnteroLab are a totally different situation however. They are accurate and reliable because the same person (who holds a PhD in chemistry) performs all of the tests, so that the results are accurate, consistent, and reliably repeatable.
The antibodies to food sensitivities are produced in the intestines (not in the blood), so why on earth would any logically-thinking person expect to find them in the blood? One looks for IgE and IgG antibodies in the blood, not IgA antibodies. IgE and IgG antibodies are the result of food allergies. Most doctors mistakenly believe that food intolerances are the same as food allergies. They are most definitely not. The antibodies that lead to the T-cell inflammation that causes MC are IgA antibodies, triggered by food intolerances, not the IgE antibodies associated with food allergies.
The gut (not the blood) is the domain of IgA antibodies. By the time detectible numbers of them find their way into the bloodstream, years of damage to the intestines have already accrued. That's the main reason why the average time from first symptoms to an official diagnosis of celiac disease in this country is still over 9 years, according to the latest research statistics. The IgA antibodies associated with gluten sensitivity can be found in stool samples almost immediately, whereas it typically takes years for them to show up at levels sufficient to trigger a positive result on a celiac blood test, due to the extremely poor sensitivity of the serum tests. The medical profession has really dropped the ball on early detection of celiac disease (early detection does not exist, because of their obsolete screening methods).
But I can certainly understand why you would not want to argue with a colleague who is basing her knowledge on obsolete information. Most doctors think they know what they are talking about, because they are paid for offering "expert" advice (whether it is actually expert or not), and they take their work seriously. And so obviously it hurts their professional pride if a patient argues with them about something they "know/believe" to be correct. Unfortunately mainstream medicine has dropped the ball on the EnteroLab tests because of a professional prejudice against the policy of the owner of the lab (a certified GI specialist who has MC himself) to offer lab tests direct to patients over the internet. As you are probably aware, that's a professional no-no in mainstream medical circles.
But you can certainly track down your food intolerances by carefully using an elimination diet, and many other members here (including me) have done so in the past. In my case, I wasn't even aware of the existence of the EnteroLab tests when my symptoms were at their worst (about 15 years ago), so I had to figure out my diet by trial and error.
If you have been taking budesonide for more than just a few months, then yes, you would have a significant risk of false negative results, unless your antibody levels were very high to begin with.
You're off to a good start with your recovery, and we will try to help in any way we can, if you keep us posted.
Best of luck with your recovery.
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.
Sue Ann,
I know you are going to be fine and get your life back. I'm sure of it because of your attitude. I was diagnosed only a year ago and found this wonderful site days later. I did the enterolab tests and followed everyone's advise here. I had my life back in a short time. I'm still DF and GF and will have to stay that way.
Good luck, glad to meet you,
Love,
Connie
I know you are going to be fine and get your life back. I'm sure of it because of your attitude. I was diagnosed only a year ago and found this wonderful site days later. I did the enterolab tests and followed everyone's advise here. I had my life back in a short time. I'm still DF and GF and will have to stay that way.
Good luck, glad to meet you,
Love,
Connie
Live, Laugh & Love Much
thanks for the uplifting words Connie...it's all rather overwhelming, but i'm trying to break down everything into small segments of info and then it's not quite so daunting...plus i have it in my head that it's not going to be a "quick fix", but rather an entirely new way of life and i need to take it slow to adjust...it will help that i've been dairy free for 3 yrs so i've adjusted to that already...
Yes, the A1 and C1 Panels will give you the most bang for your buck.SUE ANN wrote:i think i'm going to do the testing...i've picked out the combo A1 + C1 and the yeast sensitivity....does that sound like it would get the majority of things for the money?..
If you want to ensure that you do not run the risk of receiving any false negative test results, you can request that one of your doctors order a serum IgA test to rule out the possibility of selective IgA deficiency, or immune system suppression due to a medication. Or if you don't want to get your doctors involved, you can probably get the Immunoglobulin A test from one of the independent lab services that are available in many larger cities these days, such as Any Lab Test Now.
If your serum IgA result is within the normal range on that test, then you are good to go on the EnteroLab stool tests.
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 Sue Ann,
I am newly here as of March 2015, I have had LC\MC since 2007, didn't find out results until 2012 and then when I finally had enough I found this forum and started an all out search mission ever since. I have sent stool to Genova - learned I am ok with enzymes, no parasites, and or bacteria for the most part. Sent blood work off to Meridian Lab in Renton WA and that showed I had so many allergens in my bloodstream due to my leaky gut, so many foods to avoid I was shocked. So on to Enterolab to drill it down to what I absolutely need to remove from my diet to heal myself, and that is where I am at right now. I can no longer have Gluten, Dairy, Soy or Egg, and Potato is questionable. Just those things have put my mind in a spin, as they are in everything it seems like. I am on a fairly bland diet, but I eat lots of turkey, and steamed rice, and drink lots of water or coconut milk. I am slowly testing a food here an there because I have seen my bathroom trips lessen all the time and on a Bristol scale they are changing from a 7 to a 5-6 Progress! I immediately know when I come in contact with something that my body doesn't like, as I quickly go to a 7 right away. I have accepted it is going to take me some time to heal, as I didn't catch mine very soon, life was very busy and I put myself last all the time during these last few years, shame on me.
You will heal, you will feel better, you will keep your job because the bathroom trips will not be something you have to worry about all the time. You seem very in tune to your situation, I have great faith you will heal. We all know that we never get rid of MC, once it is quieted down it is always there, but having help from this forum is huge and keeps the spirit up. It truly has been a godsend.
Here's to healing
Cheers
Erica
I am newly here as of March 2015, I have had LC\MC since 2007, didn't find out results until 2012 and then when I finally had enough I found this forum and started an all out search mission ever since. I have sent stool to Genova - learned I am ok with enzymes, no parasites, and or bacteria for the most part. Sent blood work off to Meridian Lab in Renton WA and that showed I had so many allergens in my bloodstream due to my leaky gut, so many foods to avoid I was shocked. So on to Enterolab to drill it down to what I absolutely need to remove from my diet to heal myself, and that is where I am at right now. I can no longer have Gluten, Dairy, Soy or Egg, and Potato is questionable. Just those things have put my mind in a spin, as they are in everything it seems like. I am on a fairly bland diet, but I eat lots of turkey, and steamed rice, and drink lots of water or coconut milk. I am slowly testing a food here an there because I have seen my bathroom trips lessen all the time and on a Bristol scale they are changing from a 7 to a 5-6 Progress! I immediately know when I come in contact with something that my body doesn't like, as I quickly go to a 7 right away. I have accepted it is going to take me some time to heal, as I didn't catch mine very soon, life was very busy and I put myself last all the time during these last few years, shame on me.
You will heal, you will feel better, you will keep your job because the bathroom trips will not be something you have to worry about all the time. You seem very in tune to your situation, I have great faith you will heal. We all know that we never get rid of MC, once it is quieted down it is always there, but having help from this forum is huge and keeps the spirit up. It truly has been a godsend.
Here's to healing
Cheers
Erica
To Succeed you have to Believe in something with such a passion that it becomes a Reality - Anita Roddick
Dx LC April 2012 had symptoms since Aug 2007
Dx LC April 2012 had symptoms since Aug 2007
ok Tex...i'll see if my PCP will order that blood test and go from there...thanks
thanks Erica for your input..i am hoping i can get this under control enough to keep working for a couple more years and then retire - my mind is coming to terms with MC being a lifetime condition - as long as i can mostly limit the symptoms, i think it will be fine
thanks Erica for your input..i am hoping i can get this under control enough to keep working for a couple more years and then retire - my mind is coming to terms with MC being a lifetime condition - as long as i can mostly limit the symptoms, i think it will be fine