Some of the latest IBD information from Sweden

[Jonas]

I've been to a lecture about IBD and microscopic colitis. The specialist who had the lecture has done a lot of research about IBD and MC.

Here is some of the information:
If you have the genes for MC, it is highly likely have the genes for celiac disease, hasimotos, diabetes. But not for other IBD's. Crohn's and ulcerative colitis have similar genes.

All with IBD have dysbiosis: They have tried to restore the intestinal flora by transfer from healthy people. Unfortunately, it did not work so well, most clients relapse within one month.
They know that increases the risk of dysbiosis are caesarean, hygienic, antibiotics, high fat, low fiber, less exercise, stress.

There is a strong connection with the stomach flu, malnourished and wheat leading to celiac disease (if you have the genes for it).
A country in Africa has the highest number of people with celiac disease, they are malnourished, eating in mainly wheat, and often stomach flu.

Stress is not as important as previously thought.
Antioxidants are also not as important as previously thought, on the contrary, some may be harmful in large quantities.

High salt intake increases the risk of autoimmune illnesses, especially ME

The diet does matter, nutrient-poor junk food increases the risks considerably. However, they can not recommend any special diet method. They would not recommend to only eat foods with very high fat, that could lead to death.

Something that reduces the risks is vitamin D, zinc, fish (omega 3), fruit and vegetables.

Diarrhea is only on the 5th place of the usual symptoms of IBD, more common are fatigue, nausea, stomach noise, abdominal pain.

Things such as when you are born in the year plays a role in how likely is that you become ill.

The Swedish expert believe that they will find a solution to the IBD problems within a near future.
There is at lot of research going on, and they have come a long way.



Here are some facts about MC (CC, LC) and symtoms.

Prevalence of symtoms in MC

Active CC
Abdominal pain 70%
Fatique 62%
Arhralgia 60%
Myalgia 50%

Inactive CC
Abdominal pain 45%
Fatique 55%
Arhralgia 61%
Myalgia 52%

Active LC
Abdominal pain 74%
Fatique 85%
Arhralgia 53%
Myalgia 57%

Inactive LC
Abdominal pain 41%
Fatique 61%
Arhralgia 51%
Myalgia 42%

This was not to fun to read. Although the disease is inactive, it seems many of the symptoms persist.

[tex]

Jonas,

They are definitely making progress, and that was a very interesting presentation. I agree that he's correct about the typical hierarchy (and significance) of symptoms for active disease, but he's wrong about the inactive phases. And the reason why he's wrong is because he is talking about inactive disease without diet control. With proper diet change, most of those symptoms he listed would not be significant, let alone as prominent as he has noted (in most cases).

But most importantly, I disagree with his claim that stress is not a major factor in the disease. I wonder what he is basing that claim on.

All in all though, it certainly seems that they are finally making some significant progress. They must be listening to patients more, otherwise they wouldn't be rating fatigue and pain so highly. He's right about the gene associations too, according to the experience of the members of this discussion board.

Thanks for sharing that information.

Tex

[mcardle3]

I've been to a lecture about IBD and microscopic colitis. The specialist who had the lecture has done a lot of research about IBD and MC.

Here is some of the information:
If you have the genes for MC, it is highly likely have the genes for celiac disease, hasimotos, diabetes. But not for other IBD's. Crohn's and ulcerative colitis have similar genes.

All with IBD have dysbiosis: They have tried to restore the intestinal flora by transfer from healthy people. Unfortunately, it did not work so well, most clients relapse within one month.
They know that increases the risk of dysbiosis are caesarean, hygienic, antibiotics, high fat, low fiber, less exercise, stress.

There is a strong connection with the stomach flu, malnourished and wheat leading to celiac disease (if you have the genes for it).
A country in Africa has the highest number of people with celiac disease, they are malnourished, eating in mainly wheat, and often stomach flu.

Stress is not as important as previously thought.
Antioxidants are also not as important as previously thought, on the contrary, some may be harmful in large quantities.

High salt intake increases the risk of autoimmune illnesses, especially ME

The diet does matter, nutrient-poor junk food increases the risks considerably. However, they can not recommend any special diet method. They would not recommend to only eat foods with very high fat, that could lead to death.

Something that reduces the risks is vitamin D, zinc, fish (omega 3), fruit and vegetables.

Diarrhea is only on the 5th place of the usual symptoms of IBD, more common are fatigue, nausea, stomach noise, abdominal pain.

Things such as when you are born in the year plays a role in how likely is that you become ill.

The Swedish expert believe that they will find a solution to the IBD problems within a near future.
There is at lot of research going on, and they have come a long way.



Here are some facts about MC (CC, LC) and symtoms.

Prevalence of symtoms in MC

Active CC
Abdominal pain 70%
Fatique 62%
Arhralgia 60%
Myalgia 50%

Inactive CC
Abdominal pain 45%
Fatique 55%
Arhralgia 61%
Myalgia 52%

Active LC
Abdominal pain 74%
Fatique 85%
Arhralgia 53%
Myalgia 57%

Inactive LC
Abdominal pain 41%
Fatique 61%
Arhralgia 51%
Myalgia 42%

This was not to fun to read. Although the disease is inactive, it seems many of the symptoms persist.

Jonas,

Thank you for sharing this. Reading this bit "The Swedish expert believe that they will find a solution to the IBD problems within a near future.
There is at lot of research going on, and they have come a long way" made my afternoon!

[Gabes-Apg]

If the research is funded by Big Pharma then I wouldn't put much faith on better solutions....

[tex]

Gabes,

I have to agree with you that this part of the presentation:

The Swedish expert believe that they will find a solution to the IBD problems within a near future.

struck me as more than slightly overly-optimistic. When has medical research ever actually cured any disease? They're in the business of treating symptoms, not curing disease.

Tex

[Gabes-Apg]

Well most of the meds prescribed for myalgia struggle to even help the symptoms, never mind actually solving the root cause.

Until nutritional deficiencies, cell health, methylation etc becomes part of the mainstream approach, and there is more of a focus on slow and steady rather than quick fix... They will be chasing their tails...

[Tor]

Jonas, can you give the name of this researcher? I've read most Swedish research om MC (and BAM), and there are some rally good swedish researchers in this field. Too little emphasis on diet and the gluten connection, though. They should look up Kenneth Fines published works and do more along those lines.

--Tor

[Jonas]

It is not the frequency but the consistency that's important if you have active disease or not. You learn something every day.
http://www.diva-portal.se/smash/record.jsf?aq2=[[]]&c=16&af=[]&searchType=SIMPLE&query=&language=sv&pid=diva2%3A723079&aq=[[{%22person%22%3A[%22M%C3%BCnch%2C+A.%22]}]]&sf=all&aqe=[]&sortOrder=author_sort_asc&onlyFullText=false&noOfRows=50&dswid=7611

Gabes
Since he and many others like him work for the government, university hospital and I this case Lund University. I do not believe that the money comes from big pharma.
Maybe that is the case in Australia or in the US, but that is not always the case here in Sweden.

Tor:
The name of the professor is Klas Sjöberg
http://www.lu.se/lucat/user/53bb222e575 ... 439468171a

I agree that he's correct about the typical hierarchy (and significance) of symptoms for active disease, but he's wrong about the inactive phases. And the reason why he's wrong is because he is talking about inactive disease without diet control.
Tex

Those numbers about MC are not from him, I found in this report:
https://www.google.com/url?sa=t&rct=j&q ... JA&cad=rja

I like to think that I have my diet under control, and I still have (Fatique), Arhralgia, Myalgia and from what I have read here on the forum many others seem to have the same problem.

So if you are in remission (inactive LC), and maybe have been for a couple of years and you don't use any medication, you still don't have your diet under control?
We don't know if the subject in this report have there diet under control or not.
Remission or not it seems the symptoms like fatique, arhralgia, myalgia is still present.

I have seen that there is different solutions to that problem here on the forum (when diet alone does not work), for some it's LDN, others magnesium. For me LDN took care of the fatique.

Would be interesting to know for those of us who have had long time issue with arhralgia and myalgia and got better. What was the turning point?

[tex]

I like to think that I have my diet under control, and I still have (Fatique), Arhralgia, Myalgia and from what I have read here on the forum many others seem to have the same problem.

That's true. But it's also true that if one does a survey of the general population, the results will probably show a similar percentage of similar symptoms. So we don't actually know what is causing specific symptoms that may remain after remisson, and having MC does not make us immune from suffering from the same common maladies suffered by others in the general population. I do agree though that in many cases, lingering symptoms do remain for MC patients. It's impossible to pin down the cause in every case, but it is very likely that in many cases it could probably be traced to remaining diet or environmental sensitivities. In some cases, these sensitivities may be so numerous that avoiding all of them is virtually impossible.

I have seen that there is different solutions to that problem here on the forum (when diet alone does not work), for some it's LDN, others magnesium. For me LDN took care of the fatique.

But the fact that LDN resolved those symptoms in your case suggests that the symptoms were caused by something other than MC. We know by experience that those who have only MC (no other AI issues) have seen no significant benefits from the use of LDN. Only those who have other AI issues have experienced relief from symptoms.

Would be interesting to know for those of us who have had long time issue with arhralgia and myalgia and got better. What was the turning point?

That's a very good question. For me, there was no obvious turning point. As my gut healed, my fatigue slowly faded away. But it took so long that I really didn't notice when it happened. One day it dawned on me that I no longer had the problems of fatigue and brain fog that had been with me for so long.

That said, I would be dishonest if I claimed that I never wake up with a stiff, sore back or neck, or any other aches or pains. But if I think about it a bit, this almost always occurs after I have been doing some type of physical work or activity that I'm not accustomed to doing routinely. Occasionally I have no idea why I have an ache or pain, but this also happened to me long before my symptoms began, and it probably happens to almost everyone from time to time.

Tex

[Gabes-Apg]

For me, a lot of the extra symptoms, decreased dramatically when I fixed key nutrient deficiencies and cleared /cheated excess toxins.

In regard to when LDN works etc, it links with my thinking that there are some where MC is a symptom, not necessarily the root cause. The inflammation and intense reactions keep occurring until the root cause is known and dealt with.

[tex]

MC can be caused/triggered by many different mechanisms, and one of those possibilities is other AI diseases. For example, it's well known that untreated/unresolved celiac disease can lead to the development of MC.

Tex

[tex]

Those numbers about MC are not from him, I found in this report:

Thinking about that, it just occurred to me that most doctors believe that when "remission" (of some arbitrary symptom, such as diarrhea) occurs, that meets their definition of "remission", so all is well. But we know from experience that for most of us, the fatigue and brain fog typically do not resolve until approximately 2 years after remission of diarrhea. So clearly, if these are also symptoms of the disease, then remission does not necessarily occur when it is arbitrarily claimed to occur, namely with the cessation of diarrhea. Maybe remission actually occurs with the cessation of all symptoms, including pain and brain fog.

Therefore the problem with physician understanding of the disease (or lack of understanding) seems to lie with the nomenclature — the definition of remission. When is MC actually in remission? We probably should view remission in 2 distinct stages:

1. Remission of the gastrointestinal symptoms

2. Remission of abdominal pain and extraintestinal symptoms

It does seem that some of us are unable to get past stage 1, despite our best efforts. And it is definitely encouraging that physicians and researchers are beginning to understand that. I can remember when GI specialists denied that pain was even associated with the disease.

Tex