I now have four diagnosis all affecting my digestive system. Erosive gastropathy, collagenous colitis, gall stones, fatty liver and delayed stomach emptying. Are they all related? My GI advises consulting with a surgeon for a gallbladder consultation, 6 small meals a day consisting of soft foods (no salad :/). The first test showed the colitis and she kept insisting I add fiber - but it seemed to make things worse.
Words of wisdom?
Thank you.
Five diagnosis - a bit overwhelmed
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Five diagnosis - a bit overwhelmed
Recently diagnosed w/collagenous colitis & erosive gastropathy. Sonogram & emptying test next week. Pain, nausea, feel lousy. 20 + lb gain, abdomen distended to 42". All food makes me sick. Help :(
Hi,
Welcome to the discussion board. As to your question about whether all your diagnoses might be related, IMO they probably are (though your doctors would probably disagree). Collageous colitis can affect any part of the GI tract, and it commonly does, for many of us. Under a microscope, the source of the inflammation in all of the issues you mentioned (except for the liver issues) will appear to be very similar — there will be lymphocytic infiltration into the mucosa, and thickened collagen layers in the (submucosal) lamina propria layer. Gastritis is very common for MC (CC or LC) patients, and so are gallbladder problems. Gastroparesis (delayed stomach emptying) is rather common also — I often had that symptom during flares.
The fatty liver problem is a slightly different issue. Of course the most common cause is alcohol, but if the problem is due to non-alcoholic fatty liver disease (NAFLD), then there is a very good chance that it might be due to untreated gluten sensitivity. Untreated gluten sensitivity is a documented cause of NAFLD, and many doctors seem to be unaware of the connection. Gluten sensitivity is strongly associated with MC. All but a handful of us here are at least as sensitive to gluten as the average celiac (even though we typically show negative results to the classic celiac blood tests used by doctors). Those tests are so insensitive that it takes years for enough damage to accrue to the small intestine for them to show a positive result even for someone who has fully developed celiac disease. And the blood tests absolutely will not detect the type of non-celiac gluten sensitivity that most of us with MC have.
NSAIDs are a very common cause of MC. Do your doctors have any idea what caused your erosive gastropathy? If it was NSAIDs, then NSAIDs were probably the cause of your CC, also.
The no salad part is correct, but apparently your GI doc is not very familiar with treating MC (at least she is unfamiliar with treating it successfully), because fiber is definitely contraindicated while we are trying to recover from this disease. After we have been in remission for a while, we are able to handle fiber again, but during the recovery stage, fiber is so abrasive to our inflamed gut that it can prevent us from being able to achieve remission if we insist on eating it.
Again, welcome aboard, and please feel free to ask anything.
Tex
Welcome to the discussion board. As to your question about whether all your diagnoses might be related, IMO they probably are (though your doctors would probably disagree). Collageous colitis can affect any part of the GI tract, and it commonly does, for many of us. Under a microscope, the source of the inflammation in all of the issues you mentioned (except for the liver issues) will appear to be very similar — there will be lymphocytic infiltration into the mucosa, and thickened collagen layers in the (submucosal) lamina propria layer. Gastritis is very common for MC (CC or LC) patients, and so are gallbladder problems. Gastroparesis (delayed stomach emptying) is rather common also — I often had that symptom during flares.
The fatty liver problem is a slightly different issue. Of course the most common cause is alcohol, but if the problem is due to non-alcoholic fatty liver disease (NAFLD), then there is a very good chance that it might be due to untreated gluten sensitivity. Untreated gluten sensitivity is a documented cause of NAFLD, and many doctors seem to be unaware of the connection. Gluten sensitivity is strongly associated with MC. All but a handful of us here are at least as sensitive to gluten as the average celiac (even though we typically show negative results to the classic celiac blood tests used by doctors). Those tests are so insensitive that it takes years for enough damage to accrue to the small intestine for them to show a positive result even for someone who has fully developed celiac disease. And the blood tests absolutely will not detect the type of non-celiac gluten sensitivity that most of us with MC have.
NSAIDs are a very common cause of MC. Do your doctors have any idea what caused your erosive gastropathy? If it was NSAIDs, then NSAIDs were probably the cause of your CC, also.
The no salad part is correct, but apparently your GI doc is not very familiar with treating MC (at least she is unfamiliar with treating it successfully), because fiber is definitely contraindicated while we are trying to recover from this disease. After we have been in remission for a while, we are able to handle fiber again, but during the recovery stage, fiber is so abrasive to our inflamed gut that it can prevent us from being able to achieve remission if we insist on eating it.
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.
Thank you, Tex.
Fatty Liver results did not indicate what type - we do drink red wine - it would stink if that also has to go out the window. All the tests for celiac came back negative - she did a biopsy in addition to the blood test. The fiber she recommended is a powder mixed with water - but to eat soft foods. I honestly do not know where to start with my diet. An elimination diet? Just cut out all grain completely and see if that helps?
NSAID's probably did play some part. After five head injuries over a period of years, I have chronic neck and back pain as well as weather related headaches. During radiation treatment for breast cancer I was prescribed 800 mg of Ibuprofin for the discomfort and used that almost daily for two years. As an alternative she has prescribed a topical pain relief from a compounding pharmacy.
I have a good deal of stress in my life right now. Does that have an impact on all this?
Sick and tired of being sick and tired :-O - my husband is incredibly supportive but I am sure he is weary of all this too.
Fatty Liver results did not indicate what type - we do drink red wine - it would stink if that also has to go out the window. All the tests for celiac came back negative - she did a biopsy in addition to the blood test. The fiber she recommended is a powder mixed with water - but to eat soft foods. I honestly do not know where to start with my diet. An elimination diet? Just cut out all grain completely and see if that helps?
NSAID's probably did play some part. After five head injuries over a period of years, I have chronic neck and back pain as well as weather related headaches. During radiation treatment for breast cancer I was prescribed 800 mg of Ibuprofin for the discomfort and used that almost daily for two years. As an alternative she has prescribed a topical pain relief from a compounding pharmacy.
I have a good deal of stress in my life right now. Does that have an impact on all this?
Sick and tired of being sick and tired :-O - my husband is incredibly supportive but I am sure he is weary of all this too.
Recently diagnosed w/collagenous colitis & erosive gastropathy. Sonogram & emptying test next week. Pain, nausea, feel lousy. 20 + lb gain, abdomen distended to 42". All food makes me sick. Help :(
I doubt that the wine caused fatty liver disease. That's usually caused by long term use of distilled liquors that contain much higher levels of alcohol.
An elimination diet involves more than just cutting out grains. You can find information about reasons for choosing an elimination diet, and a description of an elimination diet at the links below:
GF or Elimination diet? Which do I try first
Elimination Diet
Instead of doing an elimination diet, many members here choose to order stool testing from EnteroLab, located in Dallas, Texas. EnteroLab was founded by a GI specialist who has MC himself, and we find the test results to be very accurate and reliable in almost all cases. You can see test results for some of us at these links:
Food Sensitivity Test Results For Names A–J
Food Sensitivity Test Results For Names K–Z
You might find the results of this poll of member opinions about the lab helpful:
EnteroLab Testing
If you feel that you might be interested in ordering a stool test kit that will allow you to collect a sample to send to the lab, instead of doing an elimination diet, here's a link to the tests offered. Most members choose to order the Panel A1+C1:
https://www.enterolab.com/StaticPages/T ... #PanelA1C1]
Regarding topical analgesics, we (the members of this discussion board) have found that even NSAIDs do not seem to cause any digestive system issues when applied topically, so topical painkillers of that type are generally safe for use by those of us who have MC.
Yes, stress can be a huge factor in this disease. Some of our members who have been in remission for as long as 10 years have suffered a relapse of symptoms when a very stressful event occurred. We have to try to find ways to minimize stress as much as possible.
You are very fortunate that your husband is so supportive. This disease can be very difficult for others in our life, because they also have to adjust because of the effects of the disease. His support will be very helpful in your recovery. Some of us are not so fortunate to have that support from our family.
Tex
An elimination diet involves more than just cutting out grains. You can find information about reasons for choosing an elimination diet, and a description of an elimination diet at the links below:
GF or Elimination diet? Which do I try first
Elimination Diet
Instead of doing an elimination diet, many members here choose to order stool testing from EnteroLab, located in Dallas, Texas. EnteroLab was founded by a GI specialist who has MC himself, and we find the test results to be very accurate and reliable in almost all cases. You can see test results for some of us at these links:
Food Sensitivity Test Results For Names A–J
Food Sensitivity Test Results For Names K–Z
You might find the results of this poll of member opinions about the lab helpful:
EnteroLab Testing
If you feel that you might be interested in ordering a stool test kit that will allow you to collect a sample to send to the lab, instead of doing an elimination diet, here's a link to the tests offered. Most members choose to order the Panel A1+C1:
https://www.enterolab.com/StaticPages/T ... #PanelA1C1]
Regarding topical analgesics, we (the members of this discussion board) have found that even NSAIDs do not seem to cause any digestive system issues when applied topically, so topical painkillers of that type are generally safe for use by those of us who have MC.
Yes, stress can be a huge factor in this disease. Some of our members who have been in remission for as long as 10 years have suffered a relapse of symptoms when a very stressful event occurred. We have to try to find ways to minimize stress as much as possible.
You are very fortunate that your husband is so supportive. This disease can be very difficult for others in our life, because they also have to adjust because of the effects of the disease. His support will be very helpful in your recovery. Some of us are not so fortunate to have that support from our family.
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.
My labs also show very low Vitamin D and low B12. I am currently taking 50K of D once a week to raise the level. I am incredibly tired, body aches and foggy brained at times. I thought the Ibuprofen was masking the aches and once I quit they were evident. Also thought the fatigue was due to the excessive diarrhea.
Have decided to take the plunge and eliminate grains - is there a thread that will assist me? Should I replace my cooking utensils? I have used the same iron skillets for 50 years - and my mother used them before I did.
I know I am asking a lot of questions and don't want to be a pest. I am seriously overwhelmed by all this. Finding a surgeon is not as easy as one would think. I am in the Dallas area and will look up the lab - wasn't sure if a food sensitivity test would be worth the money - my husband is no longer working so our income has dropped by about 75% - I have great insurance through work but probably won't cover this test. Although, it might not hurt to call HR and ask since the company is self insured.
Thanks Tex.
Happy Fourth of July.
Enjoy your weekend.
d
Have decided to take the plunge and eliminate grains - is there a thread that will assist me? Should I replace my cooking utensils? I have used the same iron skillets for 50 years - and my mother used them before I did.
I know I am asking a lot of questions and don't want to be a pest. I am seriously overwhelmed by all this. Finding a surgeon is not as easy as one would think. I am in the Dallas area and will look up the lab - wasn't sure if a food sensitivity test would be worth the money - my husband is no longer working so our income has dropped by about 75% - I have great insurance through work but probably won't cover this test. Although, it might not hurt to call HR and ask since the company is self insured.
Thanks Tex.
Happy Fourth of July.
Enjoy your weekend.
d
Recently diagnosed w/collagenous colitis & erosive gastropathy. Sonogram & emptying test next week. Pain, nausea, feel lousy. 20 + lb gain, abdomen distended to 42". All food makes me sick. Help :(
Yes, IBDs deplete vitamin D, and vitamin D is vital to keep our immune system working correctly. And as you are aware, B-12 is vital for many neurological functions. It appears that you may have been having malabsorption problems for years if you are B-12 deficient.
The fatigue, body aches and pains, and brain fog are all side effects (or symptoms) of MC. Not all of us have those symptoms, but most of us do. As we recover, the diarrhea, gas, bloating, and pains (IOW, symptoms due to digestive problems) will end first, allowing us to feel much better. But it typically takes a year or 2 of continued healing for the fatigue and brain fog to fade away.
http://www.perskyfarms.com/phpBB2/viewforum.php?f=6
Here are some lists of foods, ingredients, and food derivatives to be avoided (depending on which foods cause you to react). Some members find it helpful to print these lists out to take with them when shopping:
http://www.perskyfarms.com/phpBB2/viewforum.php?f=52
Here are some meal suggestions from other members:
http://www.perskyfarms.com/phpBB2/viewforum.php?f=53
Here are several hundred recipes that are free of gluten, dairy, and soy. Dee is a professional chef, and she has personally developed and tested all of the recipes that she posted. This section also contains posts by other members who might have different food sensitivities, so be sure to compare the ingredients in those recipes against your own requirements before using them. But as I mentioned above, all of the recipes posted by Dee are free of gluten,dairy, and soy. And some of these recipes taste better than the conventional recipes that they replace.
http://www.perskyfarms.com/phpBB2/viewforum.php?f=7
The question about iron skillets is a good one. Cast iron is somewhat porous, and it tends to absorb things. Because of that, cast iron skillets might possibly contain molecules of gluten. The risk may depend on how they were "seasoned" originally. IOW, they may or may not be a problem. Wooden bowels and spoons, and any cracked pots can definitely hold gluten to contaminate food that may be cooked in them. Ordinary cooking temperatures will not destroy gluten, but extremely high temperatures (such as on grill) can deactivate gluten.
Also beware of baking dishes that might have baked on residue that often contains gluten. Toasters are notorious for contaminating gluten-free bread with crumbs from wheat bread that accumulate in toasters. If you like toast, it's best to use a new, dedicated toaster that is never used with any wheat bread. The same risk applies to toaster/broiler ovens, but of course you can use a sheet of aluminum foil beneath your food in a toaster/broiler oven.
Regarding insurance and EnteroLab tests: if you email or phone the lab, they can give you the insurance codes for the tests, and you can use those to find out whether your insurance would cover the tests, when you call HR.
You are very welcome, and I hope that you're having an enjoyable Fourth of July weekend, also.
Tex
The fatigue, body aches and pains, and brain fog are all side effects (or symptoms) of MC. Not all of us have those symptoms, but most of us do. As we recover, the diarrhea, gas, bloating, and pains (IOW, symptoms due to digestive problems) will end first, allowing us to feel much better. But it typically takes a year or 2 of continued healing for the fatigue and brain fog to fade away.
In addition to the discussion on the Elimination Diet (at the second link in my post above), there are many other posts in that subcategory of the discussion board that might be helpful.denicave wrote:Have decided to take the plunge and eliminate grains - is there a thread that will assist me?
http://www.perskyfarms.com/phpBB2/viewforum.php?f=6
Here are some lists of foods, ingredients, and food derivatives to be avoided (depending on which foods cause you to react). Some members find it helpful to print these lists out to take with them when shopping:
http://www.perskyfarms.com/phpBB2/viewforum.php?f=52
Here are some meal suggestions from other members:
http://www.perskyfarms.com/phpBB2/viewforum.php?f=53
Here are several hundred recipes that are free of gluten, dairy, and soy. Dee is a professional chef, and she has personally developed and tested all of the recipes that she posted. This section also contains posts by other members who might have different food sensitivities, so be sure to compare the ingredients in those recipes against your own requirements before using them. But as I mentioned above, all of the recipes posted by Dee are free of gluten,dairy, and soy. And some of these recipes taste better than the conventional recipes that they replace.
http://www.perskyfarms.com/phpBB2/viewforum.php?f=7
The question about iron skillets is a good one. Cast iron is somewhat porous, and it tends to absorb things. Because of that, cast iron skillets might possibly contain molecules of gluten. The risk may depend on how they were "seasoned" originally. IOW, they may or may not be a problem. Wooden bowels and spoons, and any cracked pots can definitely hold gluten to contaminate food that may be cooked in them. Ordinary cooking temperatures will not destroy gluten, but extremely high temperatures (such as on grill) can deactivate gluten.
Also beware of baking dishes that might have baked on residue that often contains gluten. Toasters are notorious for contaminating gluten-free bread with crumbs from wheat bread that accumulate in toasters. If you like toast, it's best to use a new, dedicated toaster that is never used with any wheat bread. The same risk applies to toaster/broiler ovens, but of course you can use a sheet of aluminum foil beneath your food in a toaster/broiler oven.
Regarding insurance and EnteroLab tests: if you email or phone the lab, they can give you the insurance codes for the tests, and you can use those to find out whether your insurance would cover the tests, when you call HR.
You are very welcome, and I hope that you're having an enjoyable Fourth of July weekend, also.
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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Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
the other aspect to the Vit D - MC'ers tend to do better if they take small doses of Vit D3 daily rather than taking the large dose of D2 once a week...
the other way to improve absorption is to use a lingual version of Vit D3, that way it is absorbed through the saliva and you are not trying to absorb it via the inflammed gut.
with good levels of Vit D in your cells, inflammation will reduce and digestion will improve.
hope this helps...
the other way to improve absorption is to use a lingual version of Vit D3, that way it is absorbed through the saliva and you are not trying to absorb it via the inflammed gut.
with good levels of Vit D in your cells, inflammation will reduce and digestion will improve.
hope this helps...
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama