Newly diagnosed and have questions
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Newly diagnosed and have questions
I was diagnosed dec 2012, but had symptoms since a stomach bug back in June 2012. My question is this, I had no issues with "D" until I had a terrible bug, sick to my stomach, crapping that was so painful that I was doubled over, violent "D" and even had to get up multiple times throughout the night. My symptoms and pains did not subside until I visited my primary care physician and he prescribed antibiotics. So the violent "D" subsided, cramping disappeared and I was able to sleep through the night. Did any of you start this disease with some kind of bug ? I guess I'm looking for a reason this happened to me ?
I also read online about Kefir? But I have not seen this mentioned on this site? Should I be looking into probiotics in pill form of liquid drink like Kefir? And last: all of my celiac test came back negative . I have an endoscopy Friday and they will be collecting sample for biopsy and test for celiac ? Is this how many of you found your gluten allergy, whoops one more, did any of you get tested for a lactose intolerance ? I believe that is a breath test.
Looking for some advice.
-Lynn
I also read online about Kefir? But I have not seen this mentioned on this site? Should I be looking into probiotics in pill form of liquid drink like Kefir? And last: all of my celiac test came back negative . I have an endoscopy Friday and they will be collecting sample for biopsy and test for celiac ? Is this how many of you found your gluten allergy, whoops one more, did any of you get tested for a lactose intolerance ? I believe that is a breath test.
Looking for some advice.
-Lynn
-Lynn
Hi Lynn,
Welcome to the board. Several members here blame their MC on infections due to parasites, and others associate the origins of their MC with bacterial infections or viruses. MC can be caused by many different types of triggers. In many cases, it is an antibiotic treatment that triggers the disease, rather than the pathogen itself. IOW, when the antibiotic exterminates the existing gut biota, the gut is often taken over by pathogenic bacteria before the beneficial bacteria can become reestablished. In many cases, some other drug, used to treat some other issue, triggers the disease.
There are at least 54 old threads where "kefir" is mentioned or discussed. Here is one of them, for example, and it includes links to additional threads where kefir is discussed:
http://www.perskyfarms.com/phpBB2/viewt ... ight=kefir
Unless you have fully-developed celiac disease, those tests that you will have on Friday will yield negative results. The standard medical tests used by most doctors are not capable of detecting the type of gluten sensitivity that most of us have associated with microscopic colitis. Those tests are only capable of diagnosing fully-developed celiac disease, so they are worthless for detecting any earlier stages of the disease, or any other form of gluten sensitivity. Most of us here determined our food sensitivities either by submitting stool samples to EnteroLab in Dallas, TX, or by careful trial and error testing, beginning with an elimination diet.
Many of us cannot tolerate probiotics until after we are in remission. While we are still reacting, they seem to either do no good, or make our symptoms worse. A small percentage of members find them to be beneficial while they are still reacting — the rest of us have to wait until we are in remission.
Everyone will be lactose intolerant whenever they have enteritis, because the brush border regions of the small intestine will cease to produce adequate quantities of lactase enzyme when the intestines are inflamed. After the inflammation is controlled, the ability to produce an adequate supply of lactase enzyme will typically resume, and lactose intolerance will disappear. That's a moot point for most of us, though, because most of us are sensitive to casein (the primary protein in all dairy products), and that trumps lactose intolerance, because even trace amounts of casein will cause our immune system to generate an autoimmune-type reaction.
Again, welcome aboard, and please feel free to ask anything.
Tex (Wayne)
Welcome to the board. Several members here blame their MC on infections due to parasites, and others associate the origins of their MC with bacterial infections or viruses. MC can be caused by many different types of triggers. In many cases, it is an antibiotic treatment that triggers the disease, rather than the pathogen itself. IOW, when the antibiotic exterminates the existing gut biota, the gut is often taken over by pathogenic bacteria before the beneficial bacteria can become reestablished. In many cases, some other drug, used to treat some other issue, triggers the disease.
There are at least 54 old threads where "kefir" is mentioned or discussed. Here is one of them, for example, and it includes links to additional threads where kefir is discussed:
http://www.perskyfarms.com/phpBB2/viewt ... ight=kefir
Unless you have fully-developed celiac disease, those tests that you will have on Friday will yield negative results. The standard medical tests used by most doctors are not capable of detecting the type of gluten sensitivity that most of us have associated with microscopic colitis. Those tests are only capable of diagnosing fully-developed celiac disease, so they are worthless for detecting any earlier stages of the disease, or any other form of gluten sensitivity. Most of us here determined our food sensitivities either by submitting stool samples to EnteroLab in Dallas, TX, or by careful trial and error testing, beginning with an elimination diet.
Many of us cannot tolerate probiotics until after we are in remission. While we are still reacting, they seem to either do no good, or make our symptoms worse. A small percentage of members find them to be beneficial while they are still reacting — the rest of us have to wait until we are in remission.
Everyone will be lactose intolerant whenever they have enteritis, because the brush border regions of the small intestine will cease to produce adequate quantities of lactase enzyme when the intestines are inflamed. After the inflammation is controlled, the ability to produce an adequate supply of lactase enzyme will typically resume, and lactose intolerance will disappear. That's a moot point for most of us, though, because most of us are sensitive to casein (the primary protein in all dairy products), and that trumps lactose intolerance, because even trace amounts of casein will cause our immune system to generate an autoimmune-type reaction.
Again, welcome aboard, and please feel free to ask anything.
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.
Thanks Tex
I appreciate your reply and info. Have most of "The Potty People" used Entero Lab to find their food intolerances ? I have great medical insurance and the thought of paying out of pocket is very scary for me. I am currently out of work because my "D" is completely out of control and I now show symptoms of malnutrition and constant dehydration. Symptoms first presented in June of 2012 and I was diagnosed in dec '12. When work and home became extremely stressful in January ....the flood gates opened, but then I developed acid reflux, gerd, a weird sensation of something being stuck in my throat and a nasty vinegar taste when ever I ate. That is when I lost about 17 lbs in about 6 weeks. My life stopped and I knew I needed to really get my MC under control. After my endoscopy on Friday I will begin a GF, dairy free diet. Is SF sugar free ?
-Lynn
SF is soy free. You can find definitions for abbreviations and such on the information screen for this website.
I paid out of pocket for Enterolab. It was very expensive and my insurance would not cover it, but some do. It might be worth a call to Enterolab to get the code. Then, call your insurance,give them the code and find out if you are covered. There are some members who have had their insurance pay the whole thing.
Our symptoms of MC started at about the same time. Mine started the end of May '12 and I was finally diagnosed in Dec '12. I had been GF since November of '11, so when I started taking Pepto Bismol 2 tabs 4 times a day for 15 days and going DF as well as Soy Free and sugar free, the diarrhea stopped. However, now I am constipated even though I am able to go everyday, it is a lot of straining and abnormal bowel movements.
I still am not sure what foods I am sensitive to and this elimination diet is very hard. I just sent my specimens off to Enterolab on Monday so won't know anything for about three weeks.
Good luck with your endoscopy on Friday and don't let yourself get too dehydrated.
I paid out of pocket for Enterolab. It was very expensive and my insurance would not cover it, but some do. It might be worth a call to Enterolab to get the code. Then, call your insurance,give them the code and find out if you are covered. There are some members who have had their insurance pay the whole thing.
Our symptoms of MC started at about the same time. Mine started the end of May '12 and I was finally diagnosed in Dec '12. I had been GF since November of '11, so when I started taking Pepto Bismol 2 tabs 4 times a day for 15 days and going DF as well as Soy Free and sugar free, the diarrhea stopped. However, now I am constipated even though I am able to go everyday, it is a lot of straining and abnormal bowel movements.
I still am not sure what foods I am sensitive to and this elimination diet is very hard. I just sent my specimens off to Enterolab on Monday so won't know anything for about three weeks.
Good luck with your endoscopy on Friday and don't let yourself get too dehydrated.
Jane
Diagnosed with Lymphocytic Colitis 12/19/12
"When it gets dark enough,you can see the stars."
Charles A. Beard
Diagnosed with Lymphocytic Colitis 12/19/12
"When it gets dark enough,you can see the stars."
Charles A. Beard
Lynn,
I'm not sure what the percentage of members who have used EnteroLab for food sensitivity testing might be, but I would guess about half. Besides the cost, some members don't use the lab tests because they are have a condition known as selective IgA deficiency. About 1 in 300 people in the general population have this problem, and we have a fair number of members who have selective IgA deficiency.
For anyone who has the condition, neither the classic celiac blood tests used by doctors to screen for celaic disease, nor the ELISA tests used by EnteroLab for detecting food antibodies can be relied on for accuracy. Since those individuals cannot produce normal amounts of immunoglobulin A, their tests will almost always yield false negative results. Therefore they have to use trial and error for determining their food sensitivities.
I see that Jane has already covered your questions about "SF", insurance coverage, and insurance codes.
A lot of us were in the same boat when we were at your current stage with the disease — we were unable to work, and most of us were unable to get insurance coverage for the cost of the tests. I went through this about a dozen years ago, and I wasn't even aware of EnteroLab back then, so I used trial and error food testing, and I kept a detailed food/reaction diary, to figure out which foods were causing my problems.
Acid reflux/GERD often goes along with MC. Research shows that IBDs are associated with low vitamin D levels, and GERD especially, seems to respond well to supplementation with significant doses of vitamin D. We have several members who have managed to suppress their GERD problems by taking vitamin D daily.
The sensation of something stuck in the throat, and the aftertaste, are often associated with a hiatal hernia, and a number of members here have dealt with that issue. It is caused by the upper part of the stomach protruding through an enlarged opening in the diaphragm. In some cases, though, the symptoms may be caused by acid-burned areas in the esophagus, due to GERD, and if that's the case, then the remedy that I am about to describe will not work.
If a hiatal hernia is causing the problem, there is a simple home remedy that can help to slip the stomach back into it's proper place, and relieve those symptoms. The first step is to drink a glass of warm water (to add some weight to the stomach). Then stand on tiptoe, and suddenly drop down onto your heels. It's probably best to do this on a carpeted or otherwise cushioned floor, to prevent causing heel pain. In most cases, the sudden jar will pull the stomach back down to where it should be. Sometimes the maneuver has to be repeated a time or two, to get it just right, but it is a cheap and usually effective remedy.
If you plan to try a dietary treatment, it's usually easier to eliminate only gluten and dairy from the diet (along with fiber and raw fruits and vegetables) at first. With any luck at all, after a few weeks to a month or so, you should see some significant improvement in your symptoms. If you have any additional food sensitivities, then your symptoms will begin to deteriorate again after a couple of weeks or so. That's a sign that it's time to eliminate soy or possibly eggs from the diet, to see if that helps.
Some people are lucky, and within a few days to a week or so on a GF diet, they will see significant improvement. For most of us, though, it takes longer, unless we are also taking an anti-inflammatory drug to help suppress the inflammation level.
At any rate, my point is that anything that you can do to reduce your stress level, will be a huge help toward resolving your symptoms, and getting your life back. The reason why the disease can be so debilitating is because it seems to be self-perpetuating. It's caused by stress, and it causes additional stress in return, which multiplies the problem. Chronic stress (either physical stress or emotional stress) appears to be the main reason why we are all in this situation. IMO, someday, someone will develop a program to prevent and/or treat MC, based on stress relief techniques carried to new levels.
Tex
I'm not sure what the percentage of members who have used EnteroLab for food sensitivity testing might be, but I would guess about half. Besides the cost, some members don't use the lab tests because they are have a condition known as selective IgA deficiency. About 1 in 300 people in the general population have this problem, and we have a fair number of members who have selective IgA deficiency.
For anyone who has the condition, neither the classic celiac blood tests used by doctors to screen for celaic disease, nor the ELISA tests used by EnteroLab for detecting food antibodies can be relied on for accuracy. Since those individuals cannot produce normal amounts of immunoglobulin A, their tests will almost always yield false negative results. Therefore they have to use trial and error for determining their food sensitivities.
I see that Jane has already covered your questions about "SF", insurance coverage, and insurance codes.
A lot of us were in the same boat when we were at your current stage with the disease — we were unable to work, and most of us were unable to get insurance coverage for the cost of the tests. I went through this about a dozen years ago, and I wasn't even aware of EnteroLab back then, so I used trial and error food testing, and I kept a detailed food/reaction diary, to figure out which foods were causing my problems.
Acid reflux/GERD often goes along with MC. Research shows that IBDs are associated with low vitamin D levels, and GERD especially, seems to respond well to supplementation with significant doses of vitamin D. We have several members who have managed to suppress their GERD problems by taking vitamin D daily.
The sensation of something stuck in the throat, and the aftertaste, are often associated with a hiatal hernia, and a number of members here have dealt with that issue. It is caused by the upper part of the stomach protruding through an enlarged opening in the diaphragm. In some cases, though, the symptoms may be caused by acid-burned areas in the esophagus, due to GERD, and if that's the case, then the remedy that I am about to describe will not work.
If a hiatal hernia is causing the problem, there is a simple home remedy that can help to slip the stomach back into it's proper place, and relieve those symptoms. The first step is to drink a glass of warm water (to add some weight to the stomach). Then stand on tiptoe, and suddenly drop down onto your heels. It's probably best to do this on a carpeted or otherwise cushioned floor, to prevent causing heel pain. In most cases, the sudden jar will pull the stomach back down to where it should be. Sometimes the maneuver has to be repeated a time or two, to get it just right, but it is a cheap and usually effective remedy.
If you plan to try a dietary treatment, it's usually easier to eliminate only gluten and dairy from the diet (along with fiber and raw fruits and vegetables) at first. With any luck at all, after a few weeks to a month or so, you should see some significant improvement in your symptoms. If you have any additional food sensitivities, then your symptoms will begin to deteriorate again after a couple of weeks or so. That's a sign that it's time to eliminate soy or possibly eggs from the diet, to see if that helps.
Some people are lucky, and within a few days to a week or so on a GF diet, they will see significant improvement. For most of us, though, it takes longer, unless we are also taking an anti-inflammatory drug to help suppress the inflammation level.
I don't know how much you have read on this site, or if you've read my book, but I have a theory about the reasons behind the development of not only MC, but all autoimmune disease, and it is based on the damage that chronic stress causes in the intestines, which creates an environment that predisposes to autoimmune disease, and inflammatory bowel disease, especially. There is strong evidence that GERD is also an autoimmune disease.Lynn wrote:When work and home became extremely stressful in January ....the flood gates opened, but then I developed acid reflux, gerd
At any rate, my point is that anything that you can do to reduce your stress level, will be a huge help toward resolving your symptoms, and getting your life back. The reason why the disease can be so debilitating is because it seems to be self-perpetuating. It's caused by stress, and it causes additional stress in return, which multiplies the problem. Chronic stress (either physical stress or emotional stress) appears to be the main reason why we are all in this situation. IMO, someday, someone will develop a program to prevent and/or treat MC, based on stress relief techniques carried to new levels.
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.
Welcome Lynne.
We have all been where you have been, but know that you can get better.
When you described how this started with "a bug", I'm thinking that it wasn't a bug at all, but the trigger of your MC. My symptoms started out of the blue also. I thought I had a parasite or something. But I had a colonoscopy/endoscopy with biopsies within a month and got the DX of MC.
It sounds like you have had a very rough time. And have lost way too much weight. Has your gastro asked if you wanted to try a drug therapy? Many of us here have used a drug called Entocort ( budesonide). For me, it was a lifesaver. My multiple trips to the bathroom was down to one trip within a few days. The thing is that you must work on the diet at the same time because a relapse will likely happen when you wean off the drug if you don't.
I am one of those people who are IgA deficient and couldn't use Enterolab for food intolerance testing :( If you are thinking about it, you might want to ask your doctor for a simple blood test first to determine if you produce IgA antibodies . I didn't know this and wasted a lot of money trying to do the tests.
As for the diet, a major elimination diet will make you feel best. When our guts are inflamed, the can't handle any fiber, so RAW fruits and veggies ( including salad), beans and legumes should be out for now. Gluten and dairy should also be removed. The less processed foods you eat the better because of all the additives in them. Our "in a flare diet" usually consists of meats, cooked veggies, rice and it's products, and soup broths. I also ate sweet potato, apple sauce, and CHEX cereals with unsweetened almond milk, and corn tortillas.
I also took out acid foods like tomato, citrus, coffee, and black tea. We are all a little different to what really irritates our guts, but it is an experiment and it's better to play it safe at the beginning and then add things back in later when you have healed somewhat.
I know it sounds daunting right now, but try to think of this period as a time to heal your intestines and that a few months down the road will be better for sure. It has been a little over a year for me and I am basically in remission. I only go once a day. Yay. There are things I will never add back in ( gluten and dairy) and I still have slight issues with fresh fruit ( fructose malabsorption), but I have added most other foods back in and can actually go out to a restaurant! All my weight has come back. Things can get better if you are diligent and patient right now.
You might want to buy Tex's book. There is some great info in it. Read as much as you can here on the forum.
Ask any question. We are here to help
Leah
We have all been where you have been, but know that you can get better.
When you described how this started with "a bug", I'm thinking that it wasn't a bug at all, but the trigger of your MC. My symptoms started out of the blue also. I thought I had a parasite or something. But I had a colonoscopy/endoscopy with biopsies within a month and got the DX of MC.
It sounds like you have had a very rough time. And have lost way too much weight. Has your gastro asked if you wanted to try a drug therapy? Many of us here have used a drug called Entocort ( budesonide). For me, it was a lifesaver. My multiple trips to the bathroom was down to one trip within a few days. The thing is that you must work on the diet at the same time because a relapse will likely happen when you wean off the drug if you don't.
I am one of those people who are IgA deficient and couldn't use Enterolab for food intolerance testing :( If you are thinking about it, you might want to ask your doctor for a simple blood test first to determine if you produce IgA antibodies . I didn't know this and wasted a lot of money trying to do the tests.
As for the diet, a major elimination diet will make you feel best. When our guts are inflamed, the can't handle any fiber, so RAW fruits and veggies ( including salad), beans and legumes should be out for now. Gluten and dairy should also be removed. The less processed foods you eat the better because of all the additives in them. Our "in a flare diet" usually consists of meats, cooked veggies, rice and it's products, and soup broths. I also ate sweet potato, apple sauce, and CHEX cereals with unsweetened almond milk, and corn tortillas.
I also took out acid foods like tomato, citrus, coffee, and black tea. We are all a little different to what really irritates our guts, but it is an experiment and it's better to play it safe at the beginning and then add things back in later when you have healed somewhat.
I know it sounds daunting right now, but try to think of this period as a time to heal your intestines and that a few months down the road will be better for sure. It has been a little over a year for me and I am basically in remission. I only go once a day. Yay. There are things I will never add back in ( gluten and dairy) and I still have slight issues with fresh fruit ( fructose malabsorption), but I have added most other foods back in and can actually go out to a restaurant! All my weight has come back. Things can get better if you are diligent and patient right now.
You might want to buy Tex's book. There is some great info in it. Read as much as you can here on the forum.
Ask any question. We are here to help
Leah
Hi Lynne, I was diagnosed the first week in January, and can't tell you how fortunate I am that I found this site. What a knowledgable, caring group! I eliminated gluten dairy, soy and eggs immediately, and within about three weeks was pretty normal, only going once a day. I just about lived on homemade chicken soup with very soft carrots and celery, bananas, almond milk, green tea, etc. I started out eating rice and rice cereals but have now eliminated them for the most part as I felt better without them. Everyone is different, though, and we have to test to see what works.
I went through a period of mourning after I was diagnosed when I thought about all the foods I could no longer eat. But I found that I am enjoying the foods I eat now and am missing them less and less as I try new recipes.
As Leah said, Tex's book is well worth buying. All the info you need to know.
I hope all goes well for you. So glad you found us!
I went through a period of mourning after I was diagnosed when I thought about all the foods I could no longer eat. But I found that I am enjoying the foods I eat now and am missing them less and less as I try new recipes.
As Leah said, Tex's book is well worth buying. All the info you need to know.
I hope all goes well for you. So glad you found us!