Hi, first thank you all for this excellent forum for exchange of information. It has been more helpful than anything else on or offline.
My husband, who has had MS for 30 years and is a wheelchair user, was diagnosed with Lymphocytic Colitis this past Feb. after several months of severe attacks of diarrhea. We believe the condition existed for a longer period of time, but was kept at bay by Tysabri (an immune-suppressant drug, which he can no longer take).
Prior to diagnosis, he tried every OTC and prescription anti-diarrheal, as well as Cholestid to no avail. He also tried the anti-Candida diet, but experienced rapid weight loss. His Dr. at the time ordered a full GI panel—blood and stool. No sensitivities were found, and everything appeared normal.
His MC was discovered via colonoscopy and biopsy. After diagnosis, he started Budesonide (9 mg), went off it once since it did not appear to be working, and is trying it again with antihistamine (it has been about two weeks now). He had another bad attack this morning and was devastated.
While he has some relief with the low residue diet, it is not enough to maintain his caloric intake, and his energy level and functioning decline rapidly. He is hungry all the time, and if he eats enough to satiate himself, he is sleeping on the toilet. We are at the end our rope. Could I ask for some advice?
1. How much anti-histamine should be taken? He has been taking ½ a tablet at night (he weighs about 165 lbs.)?
2. How long does it take for the Budesonide to work, or when can we assume it is not working?
3. Are there any safe ways (shakes, powders) to gain weight and keep it on? Ensure seemed to make the D much, much worse.
4. Is it possible to have had a "false negative" to food sensitivity tests?
Thanks so much,
Stacey
Lymphocytic Colitis with Multiple Sclerosis
Moderators: Rosie, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
.jpg){kind=avatar}
Stacey,
If you continue reading on this forum or if you buy Tex's book (look at the upper right hand corner of this page) you will discover that most everyone here controls their MC by diet primarily and that the principal food offenders are gluten, dairy, soy and eggs. Virtually everyone here is sensitive to gluten and a very high percentage are sensitive to dairy too. Soy and eggs are also common and there can be other food sensitivities as well. Blood tests are not sensitive enough to pick up these food sensitivities. The test that most of us rely on is the Enterolab test which is a stool test not a blood test. It is possible to figure out food sensitivities by a strict elimination diet but having the Enterolab test helps in the process of figuring out what to avoid. Fiber tends to make things worse too. A simple diet of meat and well-cooked veggies, avoiding processed foods, especially those with long ingredient lists, is a good way to go. Ensure may be gluten free but it has dairy and soy in it plus lots of sugar and other nasty stuff and should be avoided.
I am sorry your husband is having such a hard time, but if you work on his diet, practicing strict avoidance, things can get better. There are plenty of us here who can attest to that.
Jean
If you continue reading on this forum or if you buy Tex's book (look at the upper right hand corner of this page) you will discover that most everyone here controls their MC by diet primarily and that the principal food offenders are gluten, dairy, soy and eggs. Virtually everyone here is sensitive to gluten and a very high percentage are sensitive to dairy too. Soy and eggs are also common and there can be other food sensitivities as well. Blood tests are not sensitive enough to pick up these food sensitivities. The test that most of us rely on is the Enterolab test which is a stool test not a blood test. It is possible to figure out food sensitivities by a strict elimination diet but having the Enterolab test helps in the process of figuring out what to avoid. Fiber tends to make things worse too. A simple diet of meat and well-cooked veggies, avoiding processed foods, especially those with long ingredient lists, is a good way to go. Ensure may be gluten free but it has dairy and soy in it plus lots of sugar and other nasty stuff and should be avoided.
I am sorry your husband is having such a hard time, but if you work on his diet, practicing strict avoidance, things can get better. There are plenty of us here who can attest to that.
Jean
StacyPlease Google "MS and Low Dose Naltrexone" together. If you are on Facebook there are many LDN groups including a secret one of some of our Potty People members. It's only secret so our discussions don't show up in our newsfeeds for all the world to see. We are in various stages of using LDN for our microscopic colitis.
http://www.perskyfarms.com/phpBB2/viewt ... ht=francie
http://www.perskyfarms.com/phpBB2/viewt ... ht=francie
Lots of LDN MS videos on You Tube. Sample: https://www.youtube.com/watch?v=36b1bIk ... 6EEF45BD6A
DISCLAIMER: I am not a doctor and don't play one on TV.
LDN July 18, 2014
Joan
LDN July 18, 2014
Joan
Hi Stacy,
Welcome to our internet family. I'm sorry to hear that your husband is having to deal with this disease in addition to MS. Like MS, MC is a life-altering disease, but the good news is that someone who is motivated can control the symptoms, and it's clear that you and he are willing to make the changes needed to bring the symptoms under control.
Many of us here also have other autoimmune diseases. And interestingly, most of us find that when we control our MC symptoms by diet changes, our other autoimmune symptoms also tend to diminish, and in some cases, the issues disappear altogether. So that can be a silver lining to a diagnosis of MC, if the symptom are properly treated. And this tells us that inflammation in the digestive system may well be the source of inflammation that fuels AI issues anywhere in the body. If you look at the success stories of members here, it doesn't take a rocket scientist to see that controlling digestive system inflammation may be the key to controlling inflammation virtually everywhere in the body, for many of us.
Of course, there are never any guarantees in life, and bringing a disease such as this under control is never easy, but it is doable, and most certainly worth the effort. The trickiest part of it is tracking down our food and drug sensitivities (yes, many drugs are also known to trigger MC), and totally eliminating them from our diet. After that, the digestive system will slowly heal itself, and we can get our life back.
As Jean pointed out, the blood tests are notoriously inaccurate for diagnosing food sensitivities. They can often detect foods or chemicals that trigger classic allergy symptoms (IgE-based reactions), but they are pretty much worthless for trying to pinpoint foods that trigger IgA reactions in the gut that lead to digestive system inflammation. That is where the EnteroLab tests excel. They are by far the most helpful tool that we have found for tracking down the foods that cause us to produce antibodies (which trigger inflammatory reactions). Like any tests, they may not be 100 % perfect, but they are as close as any test can possibly be, and for our purposes, they are sensitive, and reliable. Most of us find them to be the best money we ever spent, because they can remove any doubts that we may have, concerning whether or not we need to avoid certain foods.
Regarding your specific questions:
Note that for some of us though, budesonide will not work without diet changes. And in the more difficult cases, budesonide will only begin to work after we have eliminated our worst food sensitivities, and the gut has had a month or so to heal. So if that applies to your husband, don't give up hope prematurely. It might begin to work after some diet changes. Budesonide won't help with healing (in fact, it will slightly retard healing), but it makes life so much more pleasant, if it works to mask the symptoms while the diet changes are healing the gut.
Regarding Low-Dose Naltrexone (if you haven't already tried it), if I were in that situation I would make the proper diet changes first, and allow some healing time, and then I would give some thought to a low-dose naltrexone treatment program (depending on my symptoms at the time). IOW, with MC, it's better to reduce the inflammation, and promote some healing of the intestines, before taking on an LDN treatment program, IMO.
Again, welcome aboard, and please feel free to ask anything.
Tex
Welcome to our internet family. I'm sorry to hear that your husband is having to deal with this disease in addition to MS. Like MS, MC is a life-altering disease, but the good news is that someone who is motivated can control the symptoms, and it's clear that you and he are willing to make the changes needed to bring the symptoms under control.
Many of us here also have other autoimmune diseases. And interestingly, most of us find that when we control our MC symptoms by diet changes, our other autoimmune symptoms also tend to diminish, and in some cases, the issues disappear altogether. So that can be a silver lining to a diagnosis of MC, if the symptom are properly treated. And this tells us that inflammation in the digestive system may well be the source of inflammation that fuels AI issues anywhere in the body. If you look at the success stories of members here, it doesn't take a rocket scientist to see that controlling digestive system inflammation may be the key to controlling inflammation virtually everywhere in the body, for many of us.
Of course, there are never any guarantees in life, and bringing a disease such as this under control is never easy, but it is doable, and most certainly worth the effort. The trickiest part of it is tracking down our food and drug sensitivities (yes, many drugs are also known to trigger MC), and totally eliminating them from our diet. After that, the digestive system will slowly heal itself, and we can get our life back.
As Jean pointed out, the blood tests are notoriously inaccurate for diagnosing food sensitivities. They can often detect foods or chemicals that trigger classic allergy symptoms (IgE-based reactions), but they are pretty much worthless for trying to pinpoint foods that trigger IgA reactions in the gut that lead to digestive system inflammation. That is where the EnteroLab tests excel. They are by far the most helpful tool that we have found for tracking down the foods that cause us to produce antibodies (which trigger inflammatory reactions). Like any tests, they may not be 100 % perfect, but they are as close as any test can possibly be, and for our purposes, they are sensitive, and reliable. Most of us find them to be the best money we ever spent, because they can remove any doubts that we may have, concerning whether or not we need to avoid certain foods.
Regarding your specific questions:
Some of us see improvements with a single antihistamine dose. Others find that a non-drowsy antihistamine in the morning, and Benedryl at bedtime (for example) works better. Allergists use up to 4 times the labeled dose for treating chronic urticaria, so we know that this is a safe dose. I would be hesitant to take more than a 4x daily dose though, because research shows that about 10 times the labeled dose can be toxic, for most antihistamines, and for most people.Stacey wrote:1. How much anti-histamine should be taken? He has been taking ½ a tablet at night (he weighs about 165 lbs.)?
Most users see improvement within a couple of weeks. A few see benefits in only a day or so, while others don't see improvement until after they have been using it for about a month. If no benefits are apparent after a month of use, the chances that it will ever help seem slim.Stacey wrote:2. How long does it take for the Budesonide to work, or when can we assume it is not working?
Note that for some of us though, budesonide will not work without diet changes. And in the more difficult cases, budesonide will only begin to work after we have eliminated our worst food sensitivities, and the gut has had a month or so to heal. So if that applies to your husband, don't give up hope prematurely. It might begin to work after some diet changes. Budesonide won't help with healing (in fact, it will slightly retard healing), but it makes life so much more pleasant, if it works to mask the symptoms while the diet changes are healing the gut.
You're quite correct, and I agree with Jean. I tried Ensure, Boost, Encore, etc., early on when I was still reacting. They tasted good, and they provided some energy, but all of them are loaded with inflammatory ingredients, and I had to avoid them like the plague during my recovery. There may be some protein supplements that are safe, but I found that I reacted to most processed foods back when I was healing, even when the label said that they were free of the ingredients that caused me to react. In general, the more ingredients a product contains, the more likely it will cause a reaction (because of the increased risk of cross-contamination). Processed foods that contain more than about 5 ingredients are typically very risky for many of us (at least until we are in remission, and our gut has healed for a few months or longer). Eating whole, pure, home-cooked foods, with minimal, bland seasoning, is the key to recovery.Stacey wrote:3. Are there any safe ways (shakes, powders) to gain weight and keep it on? Ensure seemed to make the D much, much worse.
As I pointed out above, the skin tests and blood tests are extremely unreliable for our needs with MC. The inflammation is located in the intestines, and very few antibodies show up in the bloodstream. That makes stool tests the obvious choice, and EnteroLab is the only lab anywhere in the world that has proven itself capable of truly accurate and reliable testing for food sensitivities.Stacey wrote:4. Is it possible to have had a "false negative" to food sensitivity tests?
Regarding Low-Dose Naltrexone (if you haven't already tried it), if I were in that situation I would make the proper diet changes first, and allow some healing time, and then I would give some thought to a low-dose naltrexone treatment program (depending on my symptoms at the time). IOW, with MC, it's better to reduce the inflammation, and promote some healing of the intestines, before taking on an LDN treatment program, IMO.
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
Thank you so much for your thoughtful advice. My husband is starting on the elimination diet today (and is handling it better than I am), and he's going to get the Enterolab tests this week. Now we feel like we have a direction to go in. We are both very grateful.
-
Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
Stacey,
Sorry that you and your hubby had to find us, awesome to hear that you have already started the elimination diet.
As tex mentioned, many here have multiple autoimmune issues.
I am pretty confident that if you remove all the major food triggers, get some good healing in the gut, inflammation issues elsewhere in the body will improve.
There is lots to digest, (pun intended) arriving in MC world is almost being on another planet. Everything you knew about nutrition, health, medical system, seems to not apply anymore or has lots of hidden complexities. ...
Take your time, read the topic areas, sections for new people.
A lot of the issues can be resolved with removing the triggers, correcting any deficiencies.
None of this is new per say, the catch is, there is no quick fix or guaranteed protocol that will work.
It takes time, months and years
It takes every ounce of patience, and a heap of tenacity that you may not realise you both had.
There will be hiccups, setbacks along the way, these are learnings,
I can assure you, the effort is worth it, living life with minimal symptoms is a beautiful gift.
If you have the time, read some of the posts in the success stories area, this will reiterate/support all that is written in the replies in this post.
Take care
Healing hugs for you and your hubby
Xo
Sorry that you and your hubby had to find us, awesome to hear that you have already started the elimination diet.
As tex mentioned, many here have multiple autoimmune issues.
I am pretty confident that if you remove all the major food triggers, get some good healing in the gut, inflammation issues elsewhere in the body will improve.
There is lots to digest, (pun intended) arriving in MC world is almost being on another planet. Everything you knew about nutrition, health, medical system, seems to not apply anymore or has lots of hidden complexities. ...
Take your time, read the topic areas, sections for new people.
A lot of the issues can be resolved with removing the triggers, correcting any deficiencies.
None of this is new per say, the catch is, there is no quick fix or guaranteed protocol that will work.
It takes time, months and years
It takes every ounce of patience, and a heap of tenacity that you may not realise you both had.
There will be hiccups, setbacks along the way, these are learnings,
I can assure you, the effort is worth it, living life with minimal symptoms is a beautiful gift.
If you have the time, read some of the posts in the success stories area, this will reiterate/support all that is written in the replies in this post.
Take care
Healing hugs for you and your hubby
Xo
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
Welcome Stacey!
I understand your feelings so well. When I found this group I was sure I was going to die. I had diarrhea 24/7, couldn't leave the bathroom, let alone the house. I was washing myself of in the shower 5 or 6 times a day.
Finding this group and doing the enterolab tests changed that picture completely.
My MC is constipation dominated so it has been a struggle. I also have lupus and fibromyalgia, nd a very bad problem with my back. The thing that has helped me most is LDN. Joan referred to it above. Please look into it because it could help immensely.
I understand your feelings so well. When I found this group I was sure I was going to die. I had diarrhea 24/7, couldn't leave the bathroom, let alone the house. I was washing myself of in the shower 5 or 6 times a day.
Finding this group and doing the enterolab tests changed that picture completely.
My MC is constipation dominated so it has been a struggle. I also have lupus and fibromyalgia, nd a very bad problem with my back. The thing that has helped me most is LDN. Joan referred to it above. Please look into it because it could help immensely.