Hi guys,
I haven't been on the site for ages! I've been waiting for ages to hear back from my GI regarding further ideas... of what may be wrong and the doctors keep changing so I have to keep going back to square one!
I've been on budesonide for months (6mg) now and it keeps me 'ok' (I have small bowel villous atrophy that looks like coeliac but they don't think it is... due to -ve bloods and failure to respond to GF diet - and microscopic colitis) and they've sent my results overseas for the opinion of a specialist there...
One of my previous doctors thought I had 'autoimmune enteropathy' and now apparently this is what the overseas doctor suspects.. but he needs to do more tests (which aren't available in NZ). I've been waiting months and months for news but due to changing of doctors and everything and resultantly slow communication I am no more the wiser but on the budesonide I continue...
Has anyone had a similar 'diagnosis'?
The other possibility is refractory coeliac with MC - as I don't have the blood results that align with coeliac...
I had a repeat gastroscopy last year (on steroids) which didn't change from the last one (on gluten diet)
Any dietary changes haven't worked - including 18 months strict GF
I'm about ready to go to my friends Chinese herbalist!!
Autoimmune Enteropathy
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Hi Kate,
I'm sure that your doctors are trying to do their best, based on their inadequate training, but unfortunately they appear to be quite lost, and when doctors are lost they try desperately to come up with some kind of diagnosis to save face. IMO, here is why they are confused and lost:
I'm not sure what "-ve bloods" means, but I will assume that means that your celiac blood tests showed negative results. That's not surprising. It happens quite often, especially if the patient happens to be on a GF diet. The blood tests have very poor sensitivity, and IMO they are pretty much worthless. In addition, the blood test results are irrelevant if you have villus atrophy. Villus atrophy = celiac disease. Period. No other validation needed. If your doctors can't understand that, there doesn't appear to be much hope for them as effective celiac and MC doctors.
And here is why you are refractory to the GF diet:
You have microscopic colitis. If your doctors actually understood MC, they would realize that you are not responding to the GF diet because you have other food sensitivities that are preventing remission. But unfortunately they are stuck in the same rut that still catches many/most GI docs, and that is the failure to recognize that diet changes are the key to controlling the inflammation that causes MC (just as with celiac disease).
In order to control your symptoms, you must avoid all of your food sensitivities at all times. It's that simple. I'm not saying that it's simple to do — I'm just saying that the concept is simple. If you want your gut to heal (both the large and small intestine), you must avoid all of your food sensitivities. After you do that, all of the mysterious diseases that your doctors suspect will go away.
If I were in your situation, I would forget my confused doctors and change my diet, so that I could get my life back.
I'm sure that your doctors are trying to do their best, based on their inadequate training, but unfortunately they appear to be quite lost, and when doctors are lost they try desperately to come up with some kind of diagnosis to save face. IMO, here is why they are confused and lost:
I'm not sure what "-ve bloods" means, but I will assume that means that your celiac blood tests showed negative results. That's not surprising. It happens quite often, especially if the patient happens to be on a GF diet. The blood tests have very poor sensitivity, and IMO they are pretty much worthless. In addition, the blood test results are irrelevant if you have villus atrophy. Villus atrophy = celiac disease. Period. No other validation needed. If your doctors can't understand that, there doesn't appear to be much hope for them as effective celiac and MC doctors.
And here is why you are refractory to the GF diet:
You have microscopic colitis. If your doctors actually understood MC, they would realize that you are not responding to the GF diet because you have other food sensitivities that are preventing remission. But unfortunately they are stuck in the same rut that still catches many/most GI docs, and that is the failure to recognize that diet changes are the key to controlling the inflammation that causes MC (just as with celiac disease).
In order to control your symptoms, you must avoid all of your food sensitivities at all times. It's that simple. I'm not saying that it's simple to do — I'm just saying that the concept is simple. If you want your gut to heal (both the large and small intestine), you must avoid all of your food sensitivities. After you do that, all of the mysterious diseases that your doctors suspect will go away.
If I were in your situation, I would forget my confused doctors and change my diet, so that I could get my life back.
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.
-
Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
Kate
sorry there is no clear answer and guaranteed solution.
there are many here that have had similar situations, multiple Dx's, specialists changing their minds.
Long story short, in line with what Tex says above, whether you call it MC, autoimmune enteropthy or even if you call it Bro! it is inflammation,
If the villi, gut state did not improve after 18months of strict GF, then there are other ingredients that are major triggers for you (and the budenside is masking things a bit) main offenders for people here would be Dairy, Eggs, Soy, next level of irritants would be yeast/nitrates, alcohol, corn, rice,
I think I mentioned via our email chats a while ago, that major triggers can be non food related such as stress, environmental pollutants/chemicals/pollen, quite often linked to histamine inflammation.
are you taking Vit D3?
are you avoiding fibre?
Until you minimise the inflammation, (removing as many triggers as possible) things will not improve.
One area that has become relevant to AutoImmune issues is the Methylation cycle. Many of us are noticing vast improvement since starting active forms forms of B6 and B12.
I would tread cautiously with chinese herbs, they can be a bit potent/intense while you are chronically inflammed. I could not do too many supplements for a couple of years, until i got inflammation levels down and some good quality gut healing underway.
the chinese herbs may help things a bit, but until you remove as many triggers as possible they will not solve the root cause of what is causing the inflammation.
hope this helps
sorry there is no clear answer and guaranteed solution.
there are many here that have had similar situations, multiple Dx's, specialists changing their minds.
Long story short, in line with what Tex says above, whether you call it MC, autoimmune enteropthy or even if you call it Bro! it is inflammation,
If the villi, gut state did not improve after 18months of strict GF, then there are other ingredients that are major triggers for you (and the budenside is masking things a bit) main offenders for people here would be Dairy, Eggs, Soy, next level of irritants would be yeast/nitrates, alcohol, corn, rice,
I think I mentioned via our email chats a while ago, that major triggers can be non food related such as stress, environmental pollutants/chemicals/pollen, quite often linked to histamine inflammation.
are you taking Vit D3?
are you avoiding fibre?
Until you minimise the inflammation, (removing as many triggers as possible) things will not improve.
One area that has become relevant to AutoImmune issues is the Methylation cycle. Many of us are noticing vast improvement since starting active forms forms of B6 and B12.
I would tread cautiously with chinese herbs, they can be a bit potent/intense while you are chronically inflammed. I could not do too many supplements for a couple of years, until i got inflammation levels down and some good quality gut healing underway.
the chinese herbs may help things a bit, but until you remove as many triggers as possible they will not solve the root cause of what is causing the inflammation.
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
Kate,
One thing that I forgot to mention, if you happen to have selective IgA deficiency, your celiac blood test results will always be negative, no matter how severe your celiac symptoms might be. Did your doctors test you to make sure that you do not have selective IgA deficiency?
About 1 in 500 people in the general population have it, but for people who have celiac disease, about 1 in 300 have selective IgA deficiency. We have quite a few members here who have selective IgA deficiency, so they cannot use such tests, because the results will always be false negative results.
Tex
One thing that I forgot to mention, if you happen to have selective IgA deficiency, your celiac blood test results will always be negative, no matter how severe your celiac symptoms might be. Did your doctors test you to make sure that you do not have selective IgA deficiency?
About 1 in 500 people in the general population have it, but for people who have celiac disease, about 1 in 300 have selective IgA deficiency. We have quite a few members here who have selective IgA deficiency, so they cannot use such tests, because the results will always be false negative results.
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.
Hey Guys,
Thanks for the messages - appreciated. Yes I do have a slight IgA and a slight IgG deficiency Tex... The immunologist discharged me and she wasn't sure what was going on but thought they may be leaking through the gut. The did more sophisiticated celiac tests which don't use IgA (deaminidated gliadin peptide I think... - which was negative also)
I'm getting pretty mad being on these steroids with no direction. I'm hoping to travel in April and I'm worried being on steroids will harm my chances of being accepted for aid working... I get mixed messages on the safety of budesonide. I have now been on it since May last year.
What do you suggest I do?
I don't know if I can get the food sensitivity tests here in NZ. I have tried combined GF/DF before. Absolutely no change so I don't think dairy is a large component... I'm loathe to do an elimination diet but I guess that's my next best fix?
Do I get off the budesonide first?
It's funny the GI's dont' pay much attention to the colitis... they seem fixated on my small bowel! Then they say my villous atrophy is mild but the histology says marsh grade 3b which I think is reasonably bad? And this was ON steroids...
I shouldn't drink wine and rant! (histamine release and verbal diarrhoea!!) I'm fine most of the time but then I get angry and frustrated and I don't get very far with the GI's at the moment. Been waiting for answers since September and I'm close to making a complaint.
Thanks for listening.
any advice as to what I should try next is gratefully received. I've given up on western medicine.
Thanks for the messages - appreciated. Yes I do have a slight IgA and a slight IgG deficiency Tex... The immunologist discharged me and she wasn't sure what was going on but thought they may be leaking through the gut. The did more sophisiticated celiac tests which don't use IgA (deaminidated gliadin peptide I think... - which was negative also)
I'm getting pretty mad being on these steroids with no direction. I'm hoping to travel in April and I'm worried being on steroids will harm my chances of being accepted for aid working... I get mixed messages on the safety of budesonide. I have now been on it since May last year.
What do you suggest I do?
I don't know if I can get the food sensitivity tests here in NZ. I have tried combined GF/DF before. Absolutely no change so I don't think dairy is a large component... I'm loathe to do an elimination diet but I guess that's my next best fix?
Do I get off the budesonide first?
It's funny the GI's dont' pay much attention to the colitis... they seem fixated on my small bowel! Then they say my villous atrophy is mild but the histology says marsh grade 3b which I think is reasonably bad? And this was ON steroids...
I shouldn't drink wine and rant! (histamine release and verbal diarrhoea!!) I'm fine most of the time but then I get angry and frustrated and I don't get very far with the GI's at the moment. Been waiting for answers since September and I'm close to making a complaint.
Thanks for listening.
any advice as to what I should try next is gratefully received. I've given up on western medicine.
-
Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
Kate,
The recommendation we give is to follow a low fibre, low inflammation, bland eating plan, with all major triggers removed.
If you were eating high fibre when trying GF/DF then it was not a true way to ascertain if they are an issue. Also gluten antibodies have a long life so it can take a while before improvement is noticed.
The enterolab poop testing is available to any country.... It costs a bit more to NZ AUS, due to intl courier costs. At the time of Dx I couldn't afford it so I did elimination.
It took me 6-9months to confirm major and medium food triggers.
It stinks that this is happening, and there is no easy, guaranteed solution.
The harsh reality is, it is happening.
As I see it, from what you have written, if you don't want to stay on budenside long term, a strict eating plan is your best foundation for long term wellness
Strict eating plan is not the end of the world, or your life goals. You can get your life back. I won't lie, it is not easy at first and takes time, and for a few months is 2 steps forward and 1 step back. Albeit the sooner you get onto the right eating plan, and heal, the sooner you can reassess long term things like aid working overseas.
The 'right' strict eating plan has helped hundreds and hundreds of people here. For those that need meds and the strict diet there are alternatives to budenside. The sucky part, what works for one, does not always work for another.... Only you can figure out what is going to work for you.....
I can provide quite a bit of research that if the inflammation, leaky gut, compromised digestion and other issues continue, you will end up with other AI issues, and bigger risk for chronic conditions....
I am 45, have 5 AI issues. 4 Dx'd in past 5 years, plus other health issues, major dental issues one of them. 10 years of constant at times chronic inflammation and Lifetime of digestion issues have made their impact, and I have limited scope of doing full healing.
I don't want others to end up on this path, if you make the right changes early enough, there is good chance you can avoid a multitude of issues later in life.
NB not only is wine histamine, any alcohol increases inflammation...
The good news with all this.... There are lots of supportive caring people that can help. They can provide short cuts and make the transition easier...
Take care
The recommendation we give is to follow a low fibre, low inflammation, bland eating plan, with all major triggers removed.
If you were eating high fibre when trying GF/DF then it was not a true way to ascertain if they are an issue. Also gluten antibodies have a long life so it can take a while before improvement is noticed.
The enterolab poop testing is available to any country.... It costs a bit more to NZ AUS, due to intl courier costs. At the time of Dx I couldn't afford it so I did elimination.
It took me 6-9months to confirm major and medium food triggers.
It stinks that this is happening, and there is no easy, guaranteed solution.
The harsh reality is, it is happening.
As I see it, from what you have written, if you don't want to stay on budenside long term, a strict eating plan is your best foundation for long term wellness
Strict eating plan is not the end of the world, or your life goals. You can get your life back. I won't lie, it is not easy at first and takes time, and for a few months is 2 steps forward and 1 step back. Albeit the sooner you get onto the right eating plan, and heal, the sooner you can reassess long term things like aid working overseas.
The 'right' strict eating plan has helped hundreds and hundreds of people here. For those that need meds and the strict diet there are alternatives to budenside. The sucky part, what works for one, does not always work for another.... Only you can figure out what is going to work for you.....
I can provide quite a bit of research that if the inflammation, leaky gut, compromised digestion and other issues continue, you will end up with other AI issues, and bigger risk for chronic conditions....
I am 45, have 5 AI issues. 4 Dx'd in past 5 years, plus other health issues, major dental issues one of them. 10 years of constant at times chronic inflammation and Lifetime of digestion issues have made their impact, and I have limited scope of doing full healing.
I don't want others to end up on this path, if you make the right changes early enough, there is good chance you can avoid a multitude of issues later in life.
NB not only is wine histamine, any alcohol increases inflammation...
The good news with all this.... There are lots of supportive caring people that can help. They can provide short cuts and make the transition easier...
Take care
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
Kate,
Since your blood tests aren't working, or at least they aren't working properly, your GI specialists are lost. That's unfortunate, but rather common it seems. I don't understand why they are lost, because the level of damage they found in your small intestine is clear evidence of celiac disease. When the small intestine has that much damage, blood test results are irrelevant. So why in the world are they hung up on that? Their behaviour is absurd.
Probably another thing they are confused about is the fact that both celiac disease and MC affect and inflame both the small intestine and the colon. Most GI specialists don't realize that, and they insist that Celiac disease only affects the small intestine, and MC affects only the colon. That's incorrect. Those mistakes were made when the diseases were first defined, and since they were never corrected in the official descriptions of the diseases, doctors continue to be confused about them.
I agree with everything that Gabes wrote. If I were in your situation and I wanted to get my life back, I would forget about lost doctors, and either order the EnteroLab tests, or start an elimination diet, so that I could figure out all of the foods that are causing problems, and avoid them. Not all of us are sensitive to milk and dairy products, but it's still a good idea to avoid it while recovering, because when our gut is inflamed, the sugar in milk tends to ferment, causing gas, bloating, and diarrhea. After you have been in remission for a while, then you can test it back into your diet to make sure that it is OK.
And yes, you will need to eventually stop using Entocort in order to track down all of your food sensitivities, but that doesn't necessarily have to be done immediately. It's possible that the Entocort may begin to work after you change your diet to remove the worst food sensitivities, and that would allow you to enjoy freedom from your symptoms much sooner than would be the case without it (because it takes a while for the diet to begin to work, in most cases). And if you have been using Entocort for that long (roughly 8 months), you will need to taper off of it anyway, to insure that withdrawal doesn't cause any adrenal problems. It's usually a good idea to take at least a month or 2 of slowly tapering the dose, in order to minimize the chances of any rebound effects from the withdrawal. The first few dose reductions can be done relatively quickly, but when the dose gets down to 1 capsule per day, the slower the taper, the better.
Good luck and please keep us posted.
Tex
Since your blood tests aren't working, or at least they aren't working properly, your GI specialists are lost. That's unfortunate, but rather common it seems. I don't understand why they are lost, because the level of damage they found in your small intestine is clear evidence of celiac disease. When the small intestine has that much damage, blood test results are irrelevant. So why in the world are they hung up on that? Their behaviour is absurd.
Probably another thing they are confused about is the fact that both celiac disease and MC affect and inflame both the small intestine and the colon. Most GI specialists don't realize that, and they insist that Celiac disease only affects the small intestine, and MC affects only the colon. That's incorrect. Those mistakes were made when the diseases were first defined, and since they were never corrected in the official descriptions of the diseases, doctors continue to be confused about them.
I agree with everything that Gabes wrote. If I were in your situation and I wanted to get my life back, I would forget about lost doctors, and either order the EnteroLab tests, or start an elimination diet, so that I could figure out all of the foods that are causing problems, and avoid them. Not all of us are sensitive to milk and dairy products, but it's still a good idea to avoid it while recovering, because when our gut is inflamed, the sugar in milk tends to ferment, causing gas, bloating, and diarrhea. After you have been in remission for a while, then you can test it back into your diet to make sure that it is OK.
And yes, you will need to eventually stop using Entocort in order to track down all of your food sensitivities, but that doesn't necessarily have to be done immediately. It's possible that the Entocort may begin to work after you change your diet to remove the worst food sensitivities, and that would allow you to enjoy freedom from your symptoms much sooner than would be the case without it (because it takes a while for the diet to begin to work, in most cases). And if you have been using Entocort for that long (roughly 8 months), you will need to taper off of it anyway, to insure that withdrawal doesn't cause any adrenal problems. It's usually a good idea to take at least a month or 2 of slowly tapering the dose, in order to minimize the chances of any rebound effects from the withdrawal. The first few dose reductions can be done relatively quickly, but when the dose gets down to 1 capsule per day, the slower the taper, the better.
Good luck and please keep us posted.
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.