How will I know?
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How will I know?
Hello All-
I've been doing some looking around on your forum, and am quite overwhelmed by the amount of information here! Wow! I'm going to spend some time sifting through it, but I have a couple of questions first.
A bit about me: After seven weeks of constant diarrhea, abdominal pain, and 8-10 pound weight loss, stool studies and a colonoscopy with biopsy, I was given the diagnosis of lymphocytic colitis, a prescription for 12 weeks of Entocort EC and a followup appointment. I'm a nurse, but I have never even heard of this illness. While I wait for that appointment I'm reading reading reading.....
Here are some of my questions, and I welcome any and all answers, recommendations, and opinions:
1. Is there any chance I don't have LC? (long shot, I know)
2. My medical history includes anxiety, depression, GERD, esophageal spasm, canker sores, and fibromyalgia. Probably all related, right?
3. My biggest question- if I begin an elimination diet now in an attempt to figure out what might be causing all this, how will I know whether the results are related to the medication or the food? Should I try both of these at the same time? I feel like maybe I need to get these symptoms under control first, before taking that on.
Right now I am avoiding fat, dairy, processed foods, raw veggies and fruit, caffeine, sodas, and alcohol. Truthfully, I feel best when I don't eat at all.
Thanks for your input!
Nancy
I've been doing some looking around on your forum, and am quite overwhelmed by the amount of information here! Wow! I'm going to spend some time sifting through it, but I have a couple of questions first.
A bit about me: After seven weeks of constant diarrhea, abdominal pain, and 8-10 pound weight loss, stool studies and a colonoscopy with biopsy, I was given the diagnosis of lymphocytic colitis, a prescription for 12 weeks of Entocort EC and a followup appointment. I'm a nurse, but I have never even heard of this illness. While I wait for that appointment I'm reading reading reading.....
Here are some of my questions, and I welcome any and all answers, recommendations, and opinions:
1. Is there any chance I don't have LC? (long shot, I know)
2. My medical history includes anxiety, depression, GERD, esophageal spasm, canker sores, and fibromyalgia. Probably all related, right?
3. My biggest question- if I begin an elimination diet now in an attempt to figure out what might be causing all this, how will I know whether the results are related to the medication or the food? Should I try both of these at the same time? I feel like maybe I need to get these symptoms under control first, before taking that on.
Right now I am avoiding fat, dairy, processed foods, raw veggies and fruit, caffeine, sodas, and alcohol. Truthfully, I feel best when I don't eat at all.
Thanks for your input!
Nancy
Hi Nancy,
Welcome to our internet family. Please don't feel alone in your impression that this is an overwhelming disease. The medical community tends to treat it as a nuisance disease, since it is rarely fatal, but the fact is, MC is as life-altering as any of the other IBDs, and unfortunately GI specialists know far less about treating it than they do the other IBDs. That's why this discussion and support board exists.
Definitely. Those associations are very common, and most of us find that as we bring the inflammation that causes our MC under control, our symptoms associated with those other issues usually either significantly improve, or disappear completely.
There is one exception to the need to change your diet. In some cases where the MC is drug-induced (and many cases are), if it's caught and corrected in time, food sensitivities may not develop. IOW, in a few cases of drug-induced MC simply discontinuing the use of the drug (or drugs) that is/are causing the inflammation can bring lasting remission, without further intervention.
Based on your list of autoimmune type issues, I'm going to guess that you are probably taking more than one drug that is frequently associated with causing MC, and in that situation, the odds of not having food sensitivities are rather low. Drugs that often cause MC include (but are not limited to) antibiotics, NSAIDs, PPIs, SSRIs, SNRIs, statins, bisphosphonates, beta blockers, and based on the experiences of a number of members here, it appears that the anti-TNF drugs may also either cause or perpetuate MC. In some cases, H2 blockers can be a problem, but this seems to be a low-risk item for most patients.
To further complicate the issue, if you are taking any of those drugs, and they are indeed associated with the inflammation that is causing your MC, then it will almost surely be necessary to discontinue the use of those drugs in order to control the inflammation. IOW, just changing your diet will not be sufficient, if you have drug-induced MC and you continue to use any of the drugs that are implicated in your particular case.
Incidentally, the serum tests used by doctors to rule out celiac disease/gluten sensitivity are worthless for detecting gluten sensitivity in most cases. Most of us here are extremely sensitive to gluten, but we always test negative to the classic celiac blood tests. Mainstream doctors have no way to officially diagnose gluten sensitivity, because they refuse to accept the validity of the stool tests used by EnteroLab to detect food sensitivities (even though those tests are several orders of magnitude more sensitive than the blood tests, and they are very reliable).
Using the current diagnostic criteria for celiac disease, the extent of villus damage in the small intestine has to reach at least a Marsh 3 level before most GI docs will acknowledge celiac disease/gluten sensitivity. Using the standard celiac tests, the average length of time from first symptoms to an official diagnosis of celiac disease is still 9.7 years. That's a long time to suffer simply because the GI docs don't know how to diagnose gluten sensitivity before the damage to the gut becomes extensive. Most GI docs don't even realize that MC also affects the small intestine. In fact, it can (and often does) affect and inflame any and all parts of the GI tract.
Again, welcome aboard, and please feel free to ask anything.
Tex (Wayne)
Welcome to our internet family. Please don't feel alone in your impression that this is an overwhelming disease. The medical community tends to treat it as a nuisance disease, since it is rarely fatal, but the fact is, MC is as life-altering as any of the other IBDs, and unfortunately GI specialists know far less about treating it than they do the other IBDs. That's why this discussion and support board exists.
Well, the probability of a misdiagnosis is not zero, but it is so low as to be zero for all practical purposes. I have never heard of a case where MC was diagnosed when it was not present. GI docs (and pathologists) very frequently fail to diagnose MC when it does exist (they mistakenly call it IBS, especially if the GI doc fails to take enough biopsy samples from all segments of the colon), but they virtually never diagnose it when it does not actually exist, because that would require an almost impossible level of incompetence.Nancy wrote:1. Is there any chance I don't have LC? (long shot, I know)
\Nancy wrote:2. My medical history includes anxiety, depression, GERD, esophageal spasm, canker sores, and fibromyalgia. Probably all related, right?
Definitely. Those associations are very common, and most of us find that as we bring the inflammation that causes our MC under control, our symptoms associated with those other issues usually either significantly improve, or disappear completely.
For many patients (though not all) Entocort EC (budesonide), can mask the symptoms of MC. It takes a while for the diet changes to bring improvement, because the damage caused by the extensive inflammation is slow to heal. So many members here use Entocort while they are getting used to their diet changes, and allowing their gut to heal. But the time when you should be making your diet changes is early on, because if you do not eliminate all of the foods that are causing the inflammation, then as you begin to reduce the dosage of Entocort (or in some cases, few days to a few weeks after the drug is discontinued, depending on how fast you wean off of it), your symptoms will all return, and you will be back to square one. Drugs can mask the symptoms, and reduce the inflammation, but they cannot prevent the inflammation form being regenerated. Therefore, when the medication regimen is ended, if the inflammatory foods are still in the diet, the symptoms will soon return. So if you believe that the medication is sufficient for remission, that's easy to verify by simply not changing your diet. Most patients who trust the drugs to bring lasting remission though, end up very, very disappointed.Nancy wrote:3. My biggest question- if I begin an elimination diet now in an attempt to figure out what might be causing all this, how will I know whether the results are related to the medication or the food? Should I try both of these at the same time? I feel like maybe I need to get these symptoms under control first, before taking that on.
There is one exception to the need to change your diet. In some cases where the MC is drug-induced (and many cases are), if it's caught and corrected in time, food sensitivities may not develop. IOW, in a few cases of drug-induced MC simply discontinuing the use of the drug (or drugs) that is/are causing the inflammation can bring lasting remission, without further intervention.
Based on your list of autoimmune type issues, I'm going to guess that you are probably taking more than one drug that is frequently associated with causing MC, and in that situation, the odds of not having food sensitivities are rather low. Drugs that often cause MC include (but are not limited to) antibiotics, NSAIDs, PPIs, SSRIs, SNRIs, statins, bisphosphonates, beta blockers, and based on the experiences of a number of members here, it appears that the anti-TNF drugs may also either cause or perpetuate MC. In some cases, H2 blockers can be a problem, but this seems to be a low-risk item for most patients.
To further complicate the issue, if you are taking any of those drugs, and they are indeed associated with the inflammation that is causing your MC, then it will almost surely be necessary to discontinue the use of those drugs in order to control the inflammation. IOW, just changing your diet will not be sufficient, if you have drug-induced MC and you continue to use any of the drugs that are implicated in your particular case.
Incidentally, the serum tests used by doctors to rule out celiac disease/gluten sensitivity are worthless for detecting gluten sensitivity in most cases. Most of us here are extremely sensitive to gluten, but we always test negative to the classic celiac blood tests. Mainstream doctors have no way to officially diagnose gluten sensitivity, because they refuse to accept the validity of the stool tests used by EnteroLab to detect food sensitivities (even though those tests are several orders of magnitude more sensitive than the blood tests, and they are very reliable).
Using the current diagnostic criteria for celiac disease, the extent of villus damage in the small intestine has to reach at least a Marsh 3 level before most GI docs will acknowledge celiac disease/gluten sensitivity. Using the standard celiac tests, the average length of time from first symptoms to an official diagnosis of celiac disease is still 9.7 years. That's a long time to suffer simply because the GI docs don't know how to diagnose gluten sensitivity before the damage to the gut becomes extensive. Most GI docs don't even realize that MC also affects the small intestine. In fact, it can (and often does) affect and inflame any and all parts of the GI tract.
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.
That makes sense, and is very helpful, thank you. I have been taking Protonix and will stop that now. I'm also on Wellbutrin and Lamictal. Do you know if either of those could be contributing to the problem? I take Omega-3, calcium, and vitamin D as well.
I was impressed with this GI doctor, who talked with me for five minutes, did the colonoscopy and biopsy based on our conversation, and had a diagnosis a few days later. He said he wouldn't have even done a biopsy based on the way my colon looked, but my symptoms made him suspicious. It will be interesting to get his feedback about diet and lifestyle changes.
Trying to boil it all down to something I can cope with, it seems I need to:
1 Stop taking the Protonix
2 Take the Entocort
3 Eliminate gluten from my diet
Easy, right?
I was impressed with this GI doctor, who talked with me for five minutes, did the colonoscopy and biopsy based on our conversation, and had a diagnosis a few days later. He said he wouldn't have even done a biopsy based on the way my colon looked, but my symptoms made him suspicious. It will be interesting to get his feedback about diet and lifestyle changes.
Trying to boil it all down to something I can cope with, it seems I need to:
1 Stop taking the Protonix
2 Take the Entocort
3 Eliminate gluten from my diet
Easy, right?
Hi Nancy,
I formerly took Celexa for anxiety. After my LC diagnosis, my doc switched me to Wellbutrin. I haven't had problems from it. I am gluten-free, dairy-free, and as soy-free as possible for about 2-1/2 years now. I took Entocort for the better part of a year with good results.
I am thankful every day that I found this board. Good luck with your recovery. I know the people here will be immensely helpful to you.
I formerly took Celexa for anxiety. After my LC diagnosis, my doc switched me to Wellbutrin. I haven't had problems from it. I am gluten-free, dairy-free, and as soy-free as possible for about 2-1/2 years now. I took Entocort for the better part of a year with good results.
I am thankful every day that I found this board. Good luck with your recovery. I know the people here will be immensely helpful to you.
Suze
Welcome Nancy.
Tex has given you some excellent advise. he has written a book that is in the upper right hand corner of this page. You might want to order one. it's a great source of information. Just click n it.
Abou 1 1/2 years ago, I went on Entocort also. I started with the highest dose ( 9mg) and stayed on that dose until I started to feel a bit constipated ( about 1 month) . At the same time, I took out everything you have- plus gluten and soy. The drug helps us to live our lives, but the diet is what helps us heal. it takes a while. I was on 6 mg. for another two months and then I slowly weaned down to one pill a day for another 2 months. At that level, you can tell what might still be bothering you and adjust the diet. The sixth month was spent slowly weaning completely off. ... and have been off ever since. I also have been able to add some stuff back in ( like some raw veggies, and beans) since then. I can also now tolerate GF breads and such. Try not to rush it. Higher success rate if you take your time and heal.
This process takes some times and some dedication , but you CAN get better. You are on the right track and now that you have found us, I think you will do great :)
Take Care and keep us posted.
Leah
Tex has given you some excellent advise. he has written a book that is in the upper right hand corner of this page. You might want to order one. it's a great source of information. Just click n it.
Abou 1 1/2 years ago, I went on Entocort also. I started with the highest dose ( 9mg) and stayed on that dose until I started to feel a bit constipated ( about 1 month) . At the same time, I took out everything you have- plus gluten and soy. The drug helps us to live our lives, but the diet is what helps us heal. it takes a while. I was on 6 mg. for another two months and then I slowly weaned down to one pill a day for another 2 months. At that level, you can tell what might still be bothering you and adjust the diet. The sixth month was spent slowly weaning completely off. ... and have been off ever since. I also have been able to add some stuff back in ( like some raw veggies, and beans) since then. I can also now tolerate GF breads and such. Try not to rush it. Higher success rate if you take your time and heal.
This process takes some times and some dedication , but you CAN get better. You are on the right track and now that you have found us, I think you will do great :)
Take Care and keep us posted.
Leah
Leah thanks, you just clarified it for me. It sounds like there will come a time, as I am weaning off the Endocort, when I will be able to tell what foods are giving me problems. I was worrying that the drug would just mask all the symptoms and make it impossible to know.
I do appreciate the warm welcome, and hearing what has worked for others.
I do appreciate the warm welcome, and hearing what has worked for others.
- Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
Nancy,
You have received very good advice/info
I will add that you may have to remove more than gluten from your diet. Most people here have multiple intolerances.
They don't always make themselves obvious at first....
Good luck for your mc journey....
You have received very good advice/info
I will add that you may have to remove more than gluten from your diet. Most people here have multiple intolerances.
They don't always make themselves obvious at first....
Good luck for your mc journey....
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
Nancy,
I agree with Suze that Wellbutrin is one of the least-likely drugs in the antideppressant/anti-anxiety category to cause problems for MC patients. While there are isolated case studies where Lamictal caused diarrhea as part of a spectrum of symptoms that can result from an adverse reaction to the drug, in general, it does not have a history of causing colitis. You might keep it in the back of your mind, in case all your efforts to control your MC symptoms prove to be unsuccessful, but there is a very good chance that it won't negatively affect your recovery from MC.
Good luck with your recovery program.
Tex
I agree with Suze that Wellbutrin is one of the least-likely drugs in the antideppressant/anti-anxiety category to cause problems for MC patients. While there are isolated case studies where Lamictal caused diarrhea as part of a spectrum of symptoms that can result from an adverse reaction to the drug, in general, it does not have a history of causing colitis. You might keep it in the back of your mind, in case all your efforts to control your MC symptoms prove to be unsuccessful, but there is a very good chance that it won't negatively affect your recovery from MC.
Good luck with your recovery program.
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.