I have had classic celiac symptoms for the last 6 months (Nausea, frequent bm, but not diarrhea, fatigue, weakness, anxiety, depression, weight loss, muscle aches). All my celiac tests were negative. I had a normal endoscopy and a sigmoidoscopy that revealed MC.
I have been trying to read all I can about MC and it doesn't seem like there is a lot of info. Some places suggest a GF diet but some sites just talk about medication. It seems like the medical profession knows less about MC than they do about CD. It is very frustrating, I am sure you know.
I got my results back on Monday from the medical records at the hospital and my GI doc has yet to call me to give me results. Frankly, my GI doc is an idiot and I have no desire to hear what he has to say. I am sure he'll tell me to take pepto and go along my way. I highly doubt they will even mention dietary changes.
The thing that I find to be weird is that I don't have the classic symptom of MC. I dont' have watery diarrhea. I feel like I have celiac. I know that symptoms can differ and maybe there just isn't a comprehensive list of MC symptoms out there. Are my symptoms consistent with a MC diagnosis? Do a lot of people with NCSG also have MC? Are all people with MC gluten intolerant?
Do you think that MC is really as rare as they say it is? They say it is a disease of older women, ages 60-70. I am a 33 year old woman. My theory is that they don't find it a lot because they don't look for it a lot.
How do I find out what foods I don't tolerate? Is it just trial and error? (Please tell me that there is a way to test for intolerances.)
Any comments or help would be greatly appreciated. I want to feel good again! The anxiety and depression are the worst out of anything. I have never had those problems before this and it is by far worse than any GI symptoms I have.
Newbie here. Need help!
Moderators: Rosie, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
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no-more-muffins
- Adélie Penguin
- Posts: 90
- Joined: Wed Jun 24, 2009 5:37 pm
Hi no-more,
Welcome to our internet family. I like your username, by the way.
You seem to have a pretty good grasp of the situation - because your conclusions are pretty much on the money. You're apparently a good researcher.
In fact, MC is fairly common, and the histology for MC can be found in many individuals in the general population, according to research. The confusing part seems to be that some people promptly get over it, (and don't even realize that they had it), while some of us have a tough time achieving and maintaining remission. Your reasoning is correct - they rarely found the disease in the past, because they didn't look for it. It can affect someone at any age. One of our members has a daughter who was diagnosed at about two and a half years of age. A few diet changes was all that she needed to achieve remission, and she is now a healthy, happy, growing girl.
Yes, most GI docs don't realize this, but it is indeed possible to have MC without diarrhea. Some of us have alternating diarrhea and constipation, and a few have constipation, only. There is a good chance that you are a latent celiac. The diagnostic criteria for celiac disease need to be revised, because for every celiac successfully diagnosed, about a hundred are missed.
Yes, there is a lab in Dallas, Texas, founded by a GI doc who has MC, himself, (Dr. Kenneth Fine - who is also a cutting edge MC researcher), where you can order lab tests, (stool tests, which are at least 300% more sensitive than the blood tests used by the mainstream medical community). These tests can save a lot time and trouble, if you don't want to have to go through elimination testing, by trial and error.
https://www.enterolab.com/Home.htm
Not all of us have experienced the severe neurological issues that you mention, but most of us have, (myself included), and we definitely understand what you are talking about. Please feel free to ask anything. With your "take-charge" attitude, I have no doubt that you will soon have your life back.
Again, welcome aboard,
Tex (Wayne)
Welcome to our internet family. I like your username, by the way.
You seem to have a pretty good grasp of the situation - because your conclusions are pretty much on the money. You're apparently a good researcher.
In fact, MC is fairly common, and the histology for MC can be found in many individuals in the general population, according to research. The confusing part seems to be that some people promptly get over it, (and don't even realize that they had it), while some of us have a tough time achieving and maintaining remission. Your reasoning is correct - they rarely found the disease in the past, because they didn't look for it. It can affect someone at any age. One of our members has a daughter who was diagnosed at about two and a half years of age. A few diet changes was all that she needed to achieve remission, and she is now a healthy, happy, growing girl.
Yes, most GI docs don't realize this, but it is indeed possible to have MC without diarrhea. Some of us have alternating diarrhea and constipation, and a few have constipation, only. There is a good chance that you are a latent celiac. The diagnostic criteria for celiac disease need to be revised, because for every celiac successfully diagnosed, about a hundred are missed.
Yes, there is a lab in Dallas, Texas, founded by a GI doc who has MC, himself, (Dr. Kenneth Fine - who is also a cutting edge MC researcher), where you can order lab tests, (stool tests, which are at least 300% more sensitive than the blood tests used by the mainstream medical community). These tests can save a lot time and trouble, if you don't want to have to go through elimination testing, by trial and error.
https://www.enterolab.com/Home.htm
Not all of us have experienced the severe neurological issues that you mention, but most of us have, (myself included), and we definitely understand what you are talking about. Please feel free to ask anything. With your "take-charge" attitude, I have no doubt that you will soon have your life back.
Again, welcome aboard,
Tex (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.
Welcome No More Muffins!
I am new as well and have only been dealing with this a few months. Figuring out your food intolerances is a bit of a process, but as Tex said, getting the Enterolab tests helps tremendously. Have you already gone gluten free (based on your name??) - if so, that could have given you a false negative blood test for CD. Sometimes going GF is just the start - many people with MC have numerous intolerances - I am GF, casein free, soy free and also sensitive to salicylates. I actually had numerous symptoms of food intolerance outside of my GI tract. I had peripheral neuropathy, leg pains, insomnia and headaches. After removing the foods I reacted too, these symptoms also went away.
BTW, diarrhea is more than 3 stools per day - doesn't necesarily have to be watery. You already have the diagnosis, so don't get hung up on the diagnostic criteria. You can have both CD and MC. Many of us have had numerous frustrations with the medical community - you may need to shop around for a new doctor that you like, but the truth is, many doctors just weren't trained to deal with MC. You will find alot of info and support on this site.
Mary Beth
I am new as well and have only been dealing with this a few months. Figuring out your food intolerances is a bit of a process, but as Tex said, getting the Enterolab tests helps tremendously. Have you already gone gluten free (based on your name??) - if so, that could have given you a false negative blood test for CD. Sometimes going GF is just the start - many people with MC have numerous intolerances - I am GF, casein free, soy free and also sensitive to salicylates. I actually had numerous symptoms of food intolerance outside of my GI tract. I had peripheral neuropathy, leg pains, insomnia and headaches. After removing the foods I reacted too, these symptoms also went away.
BTW, diarrhea is more than 3 stools per day - doesn't necesarily have to be watery. You already have the diagnosis, so don't get hung up on the diagnostic criteria. You can have both CD and MC. Many of us have had numerous frustrations with the medical community - you may need to shop around for a new doctor that you like, but the truth is, many doctors just weren't trained to deal with MC. You will find alot of info and support on this site.
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
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no-more-muffins
- Adélie Penguin
- Posts: 90
- Joined: Wed Jun 24, 2009 5:37 pm
Yeah, I have also had headaches, insomnia and hand tremors. I am very short, 5'2" and was definitely a "late bloomer". I was never on the growth charts and my parents were always worried about me because I wouldn't grow. All the symptoms match celiac so I was frustrated when that diagnosis came back negative. It would just be easier to have a paper that said: celiac so I'd feel like I know what I need to do.
When I did the testing I was eating gluten. I stopped eating gluten the day after my endoscopy.
I have an internist that I like better than the GI guy but I honestly don't think he knows that much about celiac. I kind of feel like I am on my own here, which is unfortunate. Everything says you shouldn't self-diagnose but I feel like I know more about some of these diseases than these doctors.
Tex,
Thanks for the nice words and warm welcome. What you said about the possibility of me being a latent celiac was nice to hear. I have felt that way all along and it is nice to have that validated by someone. I asked my GI doc right before my endoscopy if he had any NCGS patients and he said "no". That was a bit of a red flag to me. To him you either have CD or you don't. No gray area in the middle.
It is so wonderful to find this board. I am sure I will have lots of questions. It is nice to find people who actually know about this stuff because they have lived it!
Thanks guys!
When I did the testing I was eating gluten. I stopped eating gluten the day after my endoscopy.
I have an internist that I like better than the GI guy but I honestly don't think he knows that much about celiac. I kind of feel like I am on my own here, which is unfortunate. Everything says you shouldn't self-diagnose but I feel like I know more about some of these diseases than these doctors.
Tex,
Thanks for the nice words and warm welcome. What you said about the possibility of me being a latent celiac was nice to hear. I have felt that way all along and it is nice to have that validated by someone. I asked my GI doc right before my endoscopy if he had any NCGS patients and he said "no". That was a bit of a red flag to me. To him you either have CD or you don't. No gray area in the middle.
It is so wonderful to find this board. I am sure I will have lots of questions. It is nice to find people who actually know about this stuff because they have lived it!
Thanks guys!
Welcome No More Muffins!! 
Most of us are managing this disease on our own. Once we get the diagnosis, we discover that our GI knows very little about managing MC. My GI told me that I was his second patient with the disease. I am taking Entocort, a commonly prescribed corticosteroid for those of us with persistent diarrhea. I only call my GI when I need the prescription refilled. I'm managing my diet with the help of the wonderful people on this site.
If you've just started a gluten-free diet, you might begin to feel better quickly, but the fatigue and some other symptoms will take longer to resolve. I didn't notice any change in my condition once I went gluten-free because I also have several other intolerances. I did the Enterolab testing that Tex mentioned and it accurately told me that I was intolerant to gluten, casein, soy, yeast and eggs. The tests saved me a lot of experimentation.
I agree with Tex - you seem very proactive and determined to do what is necessary to feel better. We are here to help in any way we can. Don't feel embarrassed to ask any questions.
Gloria
Most of us are managing this disease on our own. Once we get the diagnosis, we discover that our GI knows very little about managing MC. My GI told me that I was his second patient with the disease. I am taking Entocort, a commonly prescribed corticosteroid for those of us with persistent diarrhea. I only call my GI when I need the prescription refilled. I'm managing my diet with the help of the wonderful people on this site.
If you've just started a gluten-free diet, you might begin to feel better quickly, but the fatigue and some other symptoms will take longer to resolve. I didn't notice any change in my condition once I went gluten-free because I also have several other intolerances. I did the Enterolab testing that Tex mentioned and it accurately told me that I was intolerant to gluten, casein, soy, yeast and eggs. The tests saved me a lot of experimentation.
I agree with Tex - you seem very proactive and determined to do what is necessary to feel better. We are here to help in any way we can. Don't feel embarrassed to ask any questions.
Gloria
You never know what you can do until you have to do it.
"Latent" is technically an incorrect term for your condition, of course. I sometimes, (incorrectly), use it, because I'm not aware of a correct term to better describe the situation that you find yourself in. In medical terminology, latent celiac disease refers to the situation where a patient has blood test results that are positive for celiac disease, but no detectable level of damage to the villi of the small intestine. At this point, you have gluten sensitivity, but not celiac disease, according to the, (incorrect, IMO), medical diagnostic critera for CD, (which is exactly what you said, of course). (Of course, using mainstream medical testing technology, you are not even gluten sensitive, but I realize that you're not buying that line of BS any more than the rest of us are). Trying to locate a GI doc who recognizes that gluten sensitivity without celiac disease is even possible, may prove to be a daunting task. I suspect that about 99 % of them deny that such a thing is possible. There are only a handful of GI docs known to recognize a spectrum of gluten sensitivity. Many alternative medicine practitioners do recognize it, however.
Have you ever had an "upper" endoscopy? It is certainly possible that you might have significant damage to the villi of your small intestine, even though your blood test was negative. Those blood tests are notoriously unreliable for detecting celiac disease. They don't normally yield any false positives, but they have a horrible record for giving false negatives.
True, the medical community hates to see patients self-diagnose, but their diagnostic rate for celiac disease is so pathetic, that they're lucky that they aren't smothered with malpractice suits. At any rate, as a group, they're certainly in no position to cast stones. You can get your answer at Enterolab. The stool tests they've developed are so sensitive, that they can reliably detect gluten sensitivity, up to at least a year after the GF diet has been adopted.
You're most welcome,
Tex
Have you ever had an "upper" endoscopy? It is certainly possible that you might have significant damage to the villi of your small intestine, even though your blood test was negative. Those blood tests are notoriously unreliable for detecting celiac disease. They don't normally yield any false positives, but they have a horrible record for giving false negatives.
True, the medical community hates to see patients self-diagnose, but their diagnostic rate for celiac disease is so pathetic, that they're lucky that they aren't smothered with malpractice suits. At any rate, as a group, they're certainly in no position to cast stones. You can get your answer at Enterolab. The stool tests they've developed are so sensitive, that they can reliably detect gluten sensitivity, up to at least a year after the GF diet has been adopted.
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.
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MaggieRedwings
- King Penguin
- Posts: 3865
- Joined: Tue May 31, 2005 3:16 am
- Location: SE Pennsylvania
Welcome No-More-Muffins - Great Handle!
I agree with what Tex, Gloria and Mary Beth have posted and for some they achieve remission with just drugs, or drugs and diet and for some of us it just takes longer. As you will notice in my post, to the left, that I am a MI (one who has multiple intolerances) and it took some time to figure them all out.
GIs in general do not concur with the diet route but it definitely has helped a great number of us. Take your time and really delve into this board since we have the best compilation of information out there.
Maggie
I agree with what Tex, Gloria and Mary Beth have posted and for some they achieve remission with just drugs, or drugs and diet and for some of us it just takes longer. As you will notice in my post, to the left, that I am a MI (one who has multiple intolerances) and it took some time to figure them all out.
GIs in general do not concur with the diet route but it definitely has helped a great number of us. Take your time and really delve into this board since we have the best compilation of information out there.
Maggie
Maggie Scarpone
___________________
Resident Birder - I live to bird and enjoy life!
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Resident Birder - I live to bird and enjoy life!
I, like you, am also short (4 feet 11 inches) and my entire family is small. I was absolutely convinced I had celiac. I suggest getting the Enterolab genetic testing - this will let you know if you even carry the celiac genes (DQ2 and DQ8). I do not - I have double DQ1, which seems to explain some of my neuro symptoms. There are genes for gluten intolerance and genes for celiac. Also, the symptoms for celiac and gluten intolerance can be identical, except for the flattened intestinal villi. Celiac disease has been the most heavily researched but we are now learning that gluten intolerance has many faces - in fact some never get GI symptoms at all, like with dermatitis herpetiformis and gluten ataxia.
I think most of us can relate to how you are feeling - angry, frustrated, confused, and depressed. There seems to be a grieving phase we go through, and with good reason. Stay with us on this site - go through some of the old threads. You will hear alot of hope and feel like you have a place to go to when no one else understands what you are going through, not even your doctors.
The Enterolab tests take a few weeks - you could start to try some other diet manipulations to get some releif. Dairy and soy are common offenders - for me, soy and other legumes sent me running to the bathroom.
Hang in there!
Mary Beth
I think most of us can relate to how you are feeling - angry, frustrated, confused, and depressed. There seems to be a grieving phase we go through, and with good reason. Stay with us on this site - go through some of the old threads. You will hear alot of hope and feel like you have a place to go to when no one else understands what you are going through, not even your doctors.
The Enterolab tests take a few weeks - you could start to try some other diet manipulations to get some releif. Dairy and soy are common offenders - for me, soy and other legumes sent me running to the bathroom.
Hang in there!
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
No-More-Muffins Really glad you found us and I'm sure you will keep right on researching until you find the best path for you. Good for you!!!
I really can't add anything......... the others have pretty much said it all. I will say that MC definitely can give you body aches. I am VERY familiar with those.. lately I have even had trouble sleeping due to my legs/hips aching. (Besides my normal insomnia.) Also, the nausea/vomiting was a big problem for me in the beginning. It's amazing how many symptoms this disease can cause.
Shirley
When the eagles are silent, the parrots begin to jabber"
-- Winston Churchill
-- Winston Churchill
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no-more-muffins
- Adélie Penguin
- Posts: 90
- Joined: Wed Jun 24, 2009 5:37 pm
What an amazing warm welcome! I love you guys already! It is good to find people who understand. I find that I really need and want to talk about this with people and learn more but I am afraid I am buring out everyone around me. I am sure they are sick of my gluten-theories and my dr. bashing. My husband is really supportive but he kind of defends modern medicine and I am sure he just thinks the drs are doing their best. (Which maybe they are, but it isn't good enough. They are not listening to their patients which cannot be overemphasized.) I edited my original post to say that I did have an endoscopy and the results were normal.
It is great, really great to find a board like this.
About the testing at Enterolab, is this something that insurances will cover or is it totally out of pocket?
It is great, really great to find a board like this.
About the testing at Enterolab, is this something that insurances will cover or is it totally out of pocket?
Yep, no one truly understands this disease unless they have it, and don't worry, we never get tired of listening, talking about it, and learning new information about it.
Yes, I suppose one could say that most doctors are doing their best, based on their limited, (and obsolete), knowledge of the disease, but we all know that they could do much better, if they would just bother to research some of the more current literature, and actually learn how to treat the disease. Your comment, "They are not listening to their patients", is right on target, and is precisely why so many of them aren't making any progress in learning how to treat the disease. Fortunately, a few of our members have found that their doctors are open minded, and they have actually begun to incorporate much of what they have learned, into their treatment program for other patients. The tide is slowly turning, thanks to doctors who are willing to listen, and who are willing to "think out of the box", when necessary. Unfortunately, it seems that for every GI doc who is willing to listen and learn, there are about 8 or 10 who just become upset, if a patient tries to "update" their knowledge of the disease. Some GI docs get "mad as a wet hen", if a patient even tells them that they have been spending some time learning about the disease on the internet. I guess they prefer ignorant patients, since naive patients are surely more easily fooled, and those patients may not notice that their doctor doesn't have a clue about the disease.
With both a negative endoscopy, and negative serology, you definitely do not have celiac disease - yet.
Concerning the tests at Enterolab - many doctors refuse to recognize the validity of stool tests, (due to past negative experiences with "snake oil" operators), simply because this is fairly new technology, and most doctors are still unaware that it actually works. Consequently, it's not surprising that insurance companies are only recently, slowly beginning to pay for these tests. The folks at Enterolab can give you the proper insurance codes, if you want to check that out, but be aware that many insurance companies will not pay for these tests, and some, (probably most), require that a doctor order the test. Most of us paid for the tests out of our pockets, and I'm not aware of anyone who felt that they didn't get their money's worth. The bottom line is, it depends on your insurance company - some do, most still don't.
Tex
Yes, I suppose one could say that most doctors are doing their best, based on their limited, (and obsolete), knowledge of the disease, but we all know that they could do much better, if they would just bother to research some of the more current literature, and actually learn how to treat the disease. Your comment, "They are not listening to their patients", is right on target, and is precisely why so many of them aren't making any progress in learning how to treat the disease. Fortunately, a few of our members have found that their doctors are open minded, and they have actually begun to incorporate much of what they have learned, into their treatment program for other patients. The tide is slowly turning, thanks to doctors who are willing to listen, and who are willing to "think out of the box", when necessary. Unfortunately, it seems that for every GI doc who is willing to listen and learn, there are about 8 or 10 who just become upset, if a patient tries to "update" their knowledge of the disease. Some GI docs get "mad as a wet hen", if a patient even tells them that they have been spending some time learning about the disease on the internet. I guess they prefer ignorant patients, since naive patients are surely more easily fooled, and those patients may not notice that their doctor doesn't have a clue about the disease.
With both a negative endoscopy, and negative serology, you definitely do not have celiac disease - yet.
Concerning the tests at Enterolab - many doctors refuse to recognize the validity of stool tests, (due to past negative experiences with "snake oil" operators), simply because this is fairly new technology, and most doctors are still unaware that it actually works. Consequently, it's not surprising that insurance companies are only recently, slowly beginning to pay for these tests. The folks at Enterolab can give you the proper insurance codes, if you want to check that out, but be aware that many insurance companies will not pay for these tests, and some, (probably most), require that a doctor order the test. Most of us paid for the tests out of our pockets, and I'm not aware of anyone who felt that they didn't get their money's worth. The bottom line is, it depends on your insurance company - some do, most still don't.
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.