any thoughts on MC being caused by bacteria overgrowth??

[barbiem]

Just wondering, after belonging to the SCD group for so long before finding this group, what everyone's thoughts are about bacteria and trying not to feed the bad guys with carbs?? I have read that a lot of you eat potatoes and some rice but on SCD that would be considered illegal. I am confused as to what to believe and just want some clarification from this group as well or thoughts on the subject. I do get the mast cells play a part for a lot of us - I am finding that myself now but it seems to be getting worse than before when I was originally diagnosed back in jan. I went on SCDiet with a few cheats but finally stopped every starchy food etc. and am way too skinny now. anorexic looking!! So I want to add in potatoes and rice and find when I do I get extremely gassy - lots and lots of gurgling like something is alive in there LOL. I was lead to believe this is a bad response meaning I am feeding the bad guys and now they will come back in full force. What I don't understand is why they cannot ever eat carbs again - it is as if those bad guys even though we are not feeding them are still there lurking waiting for the carbs to feed them.

any thoughts??
babs

[tex]

It's possible that bacterial overgrowth may cause some cases of MC. That has been a suspected cause virtually ever since the disease was originally defined (along with umpteen other possible causes). And researchers have been trying to prove that bacterial overgrowth is the problem for almost as long. But so far, despite all the speculation and suspicions, no one has ever proven that it's even possible, let alone likely.

If bacterial overgrowth were the problem, then antibiotics and/or probiotics should promptly resolve the problem. Instead, antibiotics trigger the disease, and probiotics make the symptoms worse for most of us, so that obviously isn't the answer.

The bacteria are there simply because they are opportunistic, and so they take advantage of the poor digestion that MC causes (which provides them with a lot of partially-digested food to decompose). But that isn't what causes MC — it's a symptom of MC.

Until someone comes up with proof to the contrary, my bet is on the cascade of events described in the last chapter of my book, as the primary cause of MC.

Tex

[sunny]

Wow! The info about probiotics making things worse was startling!
Like SCD, the Gaps diet includes probiotics, the Cdiff group I was on did also.
So are you saying that the probiotics could be another piece of the puzzle? Wow!

[tex]

Sunny,

I can count on my fingers the number of members here (out of well over a thousand) who have posted that probiotics have actually helped them to achieve remission. By contrast, I can think of many, many, members who have tried probiotics and posted that they either had no effect, or made their symptoms worse. They don't always make symptoms worse, but the point is, for most of us, they usually don't help, so what's the point in taking them. They simple add an unnecessary risk.

At one time, Dr. Fine (like many doctors) recommended probiotics, but he never could find one that he would recommend, because of the problems finding one that actually helped. I'm not sure what his exact recommendations concerning probiotics might be at the moment, but I doubt that he recommends them during recovery any longer.

Many people can tolerate probiotics just fine after they have been in remission for a while. But while they are recovering, it's rare to find someone who derives any benefits from most conventional probiotics, and it's easy to find examples who tried them and became sicker as a result.

My take on probiotics is, "If they don't help during recovery, then why would anyone want to take one after they are in remission?" It's unnecessary at best, and it could upset the applecart at worst.

Tex

[barbiem]

Wow so me eating this homemade SCD yogurt to try and overtake the bad bacteria is unnecessary? I have been eating it even though it causes a bit of stomach upset in order to at least get some good bacteria into my gut to hopefully help heal it, as well as get some much needed fat (I use half and half cream to make my yogurt to fatten me up - not working though!!). It never bothers my stomach mid day or at night just first thing in the morning. But I love it for breaky cause I don't want to have chicken for breakfast and veggies YUCK!

So I had some red skin white potatoes (baby ones) and cut them into fries and tossed with olive oil and baked in oven - delicious !! But I have been extremely gassy all night long for hours!!!! Now SCD would say that is bad!! that is the bad bacteria coming to life and you have just given them a party LOL!! But gas is a normal part of digestion isn't it?? I have had gas before I was sick so why all of a sudden is it a bad thing??

babs

[JFR]

Wow so me eating this homemade SCD yogurt to try and overtake the bad bacteria is unnecessary? I have been eating it even though it causes a bit of stomach upset in order to at least get some good bacteria into my gut to hopefully help heal it, as well as get some much needed fat (I use half and half cream to make my yogurt to fatten me up - not working though!!). It never bothers my stomach mid day or at night just first thing in the morning. But I love it for breaky cause I don't want to have chicken for breakfast and veggies YUCK!

So I had some red skin white potatoes (baby ones) and cut them into fries and tossed with olive oil and baked in oven - delicious !! But I have been extremely gassy all night long for hours!!!! Now SCD would say that is bad!! that is the bad bacteria coming to life and you have just given them a party LOL!! But gas is a normal part of digestion isn't it?? I have had gas before I was sick so why all of a sudden is it a bad thing??

babs

Lots of people are sensitive to casein, the protein in dairy. No matter how beneficial the bacteria in your yogurt may be (lots of people here have experiences that say it is not beneficial) it cannot help you heal if the casein in the yogurt is causing damage. If I were you I would stop eating it. In fact I did stop eating it. I used to make a quart of scd yogurt every week and I ate some every day. It is not the only change I made to my diet so I cannot say specifically that eliminating it is what made the difference but I have no intention of ever eating any dairy again, including scd yogurt. It is theory that says that we need to ingest "good" bacteria to help heal the gut. That theory may very well be wrong. Try eliminating the yogurt and see what happens.

Jean

[dfpowell]

I followed the SCD for quite some time and found out I was reacting to dairy, so the yogurt I was eating daily did not help me.

[barbiem]

crap! Its the only food I look forward to eating and eat it 3x a day!! It is also the only fat I get in my diet. So you both are saying healing started when you stopped the dairy?? Even butter? Where do you get your fat from then?? Did you get the intolerance tests done as well which indicated casein for you?? I am wondering if a RAST test for casein would be beneficial as that is free for us here in Canada.

What about eggs?? If I could eat eggs, life would be better LOL!!! I just don't want to give it up without finding something else to replace it. I need to put on weight! :(
babs

[dfpowell]

I was not healing, so I did the Enterolab test for a second time and found out I was reacting to dairy, almond and eggs. These were all foods I was eating a lot of because of the SCD. Once I eliminated those foods I started doing better, however, at times I struggle with symptoms and need to use Imodium or pepto. So I am not in complete remission, however, I can go for days without symptoms.
I get most of my fat calories from meat, I usually cook ground pork and bacon for at least one meal, and eat 4-5 ounces of meat at my other meals. I use bacon drippings or olive oil for frying potatoes as another fat source.
As a substitute to your yogurt you could try coconut milk, "Aroy d" has the only one I have found without additional ingredients. Last summer, Leah had posted a recipe that combines coconut milk with rice and members were posting variations they were making.

[barbiem]

Thanks Donna!! Are you on any meds anymore??? I am finally at a place where my 9 mg of entocort is keeping me at bay!! I have 1 BM a day if I stay on my yogurt/chicken/beef/green beans and carrots and the odd cashew nut flour cookie or nut butter muffin. When I eat too many of those which is not hard to do I start having stomach aches.

That is why I am not sure yogurt is an issue although this morning I decided to skip the yogurt and try for the first time egg yolks scrambled. Well I immediately was nauseated from them. No stomache ache or BM as of yet (only been 20 mins LOL) but will see. Hate feeling nauseas though and would have rather ate my yogurt and had a BM.

I can tell you I don't like being on the ketotifen as then I am not sure what is causing a reaction?? I know tex mentioned on here that being on an antihistamine has helped others reach remission but are you really in remission if you still need an antihistamine? If the gut is truly healed then we shouldn't be reacting right?

So many questions!

carol.
LC jan 2013
entocort 9mg since may 2013
tried to wean off aug but relapsed
pancreas MT4
desscicated thyroid 25mg

[lorimoose]

Hi Babs and Carol,

You seem to be 2 people.

Lori

[barbiem]

LOL used wrong name LOLOL!!

thxs
babs

[tex]

but are you really in remission if you still need an antihistamine? If the gut is truly healed then we shouldn't be reacting right?

Yes, that's true, if the gut is truly healed, but you obviously have unrealistic expectations about what it takes to heal the intestines. Unfortunately, the intestines don't heal overnight. In fact, it typically takes 2 to 5 years for healing of the gut to be completed. That doesn't mean that we have to wait that long for remission, but it does mean that we remain in a more vulnerable position until the gut completes at least most of it's needed healing.

Typically many members who use antihistamines need to use them for a few weeks to a few months, or on an as-needed basis, and after their mast cell activity returns to normal, then they can usually discontinue taking the antihistamines, just as they would discontinue any other medication when it is no longer needed. If they make a mistake and eat something that they shouldn't, then they may have to take an antihistamine (or some other medication) until they are able to get their digestion back on track.

There is no cure for MC, and just because we are taking a medication, doesn't mean that we cannot be in remission. Since there is no cure, the best we can do is to prevent the symptoms from returning. If we have no symptoms, we are in remission, by definition. If we continue to have symptoms, then we are not in remission. It's that simple.

Ideally, the obvious goal is to be able to maintain remission without a need for any medications, and most of us are able to do that. In the most severe cases however, it's often necessary to take a small maintenance dose of Entocort, or an antihistamine, or whatever, in order to be able to maintain full, stable remission.

But the bottom line is, if we continue to eat a food to which we are sensitive, no matter how "healthy", or tasty that food might be, we will never be able to enjoy full, stable, antibody-free remission. Even if we develop a tolerance to the food, so that it doesn't cause clinical symptoms, we will still produce antibodies to it, and those antibodies tend to perpetuate a state of inflammation in the body, and keep the immune system in a condition of high alert, which makes us more vulnerable to developing additional autoimmune type diseases.

Tex

[barbiem]

thanks tex for the clarification. I do have severe brain fog and forget previous posts you may have already sent me LOL. so please forgive me If I seem to repeat questions over and over again.

this just SUCKS big time. I hate every waking minute of it and am still just plain pissed off. 2 to5 years !! that is insanely crazy. why does the gut take soooo long to heal when a wound is healed in weeks or a broken bone in a few months. surely our body has the ability to regenerate itself faster than that??

And this MC being an autoimmune disease that we know is caused by inflammation and we reduce that by not eating high inflammatory foods right? then why does it take sooo long if you are eating the right foods still??


Sorry if I am repeating questions over and over again - just doesn't make sense and maybe its not supposed to. maybe I am reaching for something that just isn't there. :(

I guess I am in search of a faster fix that just isn't there either. from all your experience with this group and all the people tex nothing heals those with MD other than diet restrictions and a bit of meds. no supplements? no herbs? no homeopathic remedies? etc.

babs

[tex]

Barb,

We all know that it sucks, because we've all had to deal with the symptoms, and those of us who have recovered, have made the necessary diet changes to stop the inflammation. We miss some of the foods that we can no longer eat, but getting our life back is more important to us than those foods, so we did what we had to do, so that we could get on with our life.

If we do whatever is necessary to stop producing the inflammation, our intestines will heal without any additional intervention. But as long as we eat foods (or take medications) that cause inflammation, the intestines cannot heal, and they just become more inflamed, instead. Most of us heal faster if we take no supplements, because a lot of the supplements that are promoted for "health and healing" cause inflammation or irritation in one form or another.

We have one member who believes that L-glutamine helped her to heal, because she went into remission within a day or so after she started taking it. But she had already been on the GF diet for months, so her gut was already healing. And we have one more member who also feels that L-glutamine helped her. The rest of us who tried it couldn't see any benefits. You can try it if you want. It shouldn't hurt.

The reason why it takes so long for the intestines to heal, is because of the nature of the inflammation that causes MC. It causes the healing process to get stuck in the first stage of healing (which is inflammation), and it can't get past that stage until the inflammatory T cells disperse. And as long as there are any antibodies being produced, those T cells are not going to disperse. As a result, it takes years for those T cells to return to normal numbers, so that the healing can proceed at a faster rate.

Please don't confuse healing with remission. They are not the same. Some healing is necessary before remission can occur, but all of us reach remission long before our gut finishes healing. After we make all the necessary diet changes, some of us reach remission within a few weeks (especially if we are taking budesonide), but most of us take more like 6 months to a year before we reach remission (provided that we avoid all of the foods that cause us to react). Everyone is different in the way that we respond to diet and medications, and some of us have much more damage that has to heal, due to years of inflammation before we perfect our diet.

We all wish that we knew of a quick, easy solution, but if one actually existed, this discussion board wouldn't even be here, because our doctors would be able to treat the disease. This board is over 8 years old now, and most GI specialists are not much better at treating the disease than they were when we started. That should tell you how difficult this disease is to control.

Tex