Slow digestion

General
1

I have been having problems with my digestive system for over a year. Recently though I have noticed that it has got worse. I now have to take two sachets of Laxido Orange a day in order to keep my food on the move. I was wondering if this problem is ataxia related or due to another problem or condition?

The problem is not Gluten intollerence as I have had the blood tests done which was negative. In fact I was advised by a doctor to buy wheat bran and sprinkle it onto foodstuffs before eating. I have tried this for a week now and I have only noticed a little difference for the better. I also eat more fruit and veg than I used to with no improvements.

I find if I miss a Laxido sachet then I get chest pains, stomach pains and pains under both of my rib cages. This I believe is due to food not digesting quick enough in my system. Can anyone relate to this or is there anyone with simmilar digestive problems?

2

Sorry to hear about your problems, I don't have that issue but I do know the muscles in/around internal organs etc are not the same type as in our limbs and most of the time are not affected by conditions that affect our voluntary control of skeletal muscles (ie arms and legs).

There are a few exceptions for example I believe FA can affect the heart muscle and MSA can affect the immune system and internal things like blood pressure.

If it is part of the Ataxia you have, maybe such symptoms could narrow down the possibilities to identify the type?

3

I wanted to mention that I was tested a few times for Gluten intollerance too. I also came out normal or should I say the normal range. But my GP suggested I let go of Gluten just to see how I felt. After 2 weeks I only felt alittle better but after 6 my siatic pain went away along with alot of other problems.

I never had intestional problem so I never heard of Gluten etc.or really worried about it. But I do have two salads per day and flax seeds, and 3 fruits daily that help move things. I think after I let go of prepaired foods and preservitives that helped out more than I thought it would.

Since I let go of all flour it seemed as though my brain had less fog after 3 days. The longer I'm off the better I think. I let go over 3 1/2 years ago and never think twice about those foods that include any of them. Yes I'm a lable reader now. I don't want any of that stuff in my body or going to my brain anymore! I think our food's we take in play a bigger part in rebuilding our brains than the Dr.'s give it credit! :0)

I don't think foods are a cure but are just one peice to the puzzel, and there are ton's out there! :0)

4

I agree with everything Jeannie says. I have always had digestive problems and been tested for gluten sensitivty but my gp agrees that the test is not reliable. I decided to exclude gluten and soon felt better. Gluten is in so many foods so I decided to join coeliac UK just for a year. They give you so much information .. I wouldn't have been able to do it without their help.

I don't like taking medication because there are side effects and it is better to adjust the diet first. I love my food and I have adapted and can still enjoy it without feeling ill.

5


I think meds can mess up digestion some too!


coco said:

I agree with everything Jeannie says. I have always had digestive problems and been tested for gluten sensitivty but my gp agrees that the test is not reliable. I decided to exclude gluten and soon felt better. Gluten is in so many foods so I decided to join coeliac UK just for a year. They give you so much information .. I wouldn't have been able to do it without their help.

I don't like taking medication because there are side effects and it is better to adjust the diet first. I love my food and I have adapted and can still enjoy it without feeling ill.

6

Thanks to you all for replying. At the moment though I don't have any wish to go gluten free. My reasons for this is because I have never had any problems in the past with foodstuffs and in fact I have increased adding gluten into my diet recently, which has actually proved to be more beneficial for me so far than not. I don't see the point on changing my diet just yet or ever. I cannot and will not say that going gluten free is definately not for me in the future but at the moment I don't wish to do so. I still respect all your opinions though.

7

Hi all

I am with Iain on this one>Two weeks without gluten did not have any effect on me at all.I had to read labels in Tesco and tell others who went to get me food(as it would end up on the floor)I was gluten free.I have always eaten healthily and never worried about diets .Italked with my Neurologist about it and he said it wouldn't work for me so I have just accepted . I am pleased that diet does seem to make some better but all ataxias seem different in their effect.Food used to be a problem in my past but since I have had ataxia I haven;t had those problems.I think it was the stress of my job.

8

My sister uses Linseed which we call her birdseed sprinkled on her breakfast.I have not noticed anything significant yet with my ataxia.

9

From time to time I also hear of diffrent things that help others so I usually give them a try (if they are natural) for 3-4 to see if I even feel the least bit of diffrence. If I do then I continue like I did with the gluten, if not I listen to my body and add it back really watching and listening if it made any diffrence to my body reactions at all going back (even if they aren't huge at the time. Over time they sometimes get better and better. Sometimes things don't seem to work for weeks. But I was given cootoes by my Dr. for giving diffrent foods a long try to see if they work for my body or not. Like I went with raw foods I noticed more energy but find in the winter it's more of a challenge to be able to do, so I do 80%. Maybe in the summer it will be 100%. I'm trying not to do the all or nothing approach with it! :0)

Now dairy I gave up for over 4 weeks and only saw my stomach go down a bit but nothing elce so I'm back on dairy now. It's funny how food effects our bodies and they haven't really figured out really good testing for them. The only was I was told was to let it go then reintroduce it later on and see. :0)

10

lian, I am with you on the gluten issue. I know people like Jeannie and Michael and others see a benefit by going gluten-free, but I did it for a year and a half and again recently but saw no real improvements.

It is hard to tell if it affects speech or not, and I am still figuring this out.

I eat gluten in moderation and only a few meals, otherwise I'm mainly gluten-free.

Bowel movement changes was the first noticeable symptom for me beyond my balance.

I went from going multiple times a day to every alternate day.

it's been 2 years since and I try to improve it by drinking lots of water and eat a lot of greens.

I was recommended fiber but now also read that insolube fiber is bad for you. So, now I'm confused.

I have not yet found anything to really improve bowel movements.

11

Interesting comments Sentient and Jeannie. I have been taking natural wheat grain on a daily basis now for about 3? weeks and still don't notice a great deal of benefit. As you mention Sentient how insoluble fiber is not good for you, I'll now look into it to find out in what way?

I admire your patience Jeannie to be able to try different food stuffs for weeks at a time then trying something else afterwards. I honestly couldn't be bothered with all the hastle. I'm not being ignorant. I'm just impatient when it comes to eating.

12

Sorry lain, maybe thats you're trouble, you cant be bothered with the hastle,the only way you can solve this is exprementing, when i had stomach problems, you name it i tried it, towards the end when it got really bad my gp suggested i just eat chicken and rice and then built up from there, luckily before that i went gluten free(tested for gluten twice and both results wer negative) and this worked. I've been gluten free for a year now, my ataxia has'nt improved or got worse because of it, but my stomach problems have cleared up. i'm not saying this will work but surly its worth 2,3,4 wks to try. it took 10 days for me to start noticeing the diffrance, give it a go, if dos'nt, what harm will it have done and you can come back and say i told you so, but if it does?

13

Experimenting or trial and error will not do my mental health any good. Sorry. At the moment I cope and I cope well. I'm not willing to sacrifice anything that may be unhelpful or make me feel worse. I was severely depressed many years ago and do not wish to risk anything that may push me over the edge. Badgering someone into doing something (especially when there is no clear evidence of proof) can be very detrimental to a persons mental wellbeing.

14

My apologise, i did not been to come across that way,

15

Michael,

When you talked about Dr. not exersicing eatting well, I had to laugh. I used to be a Hair Stylist and had quite a few Dr.'s as clients. That's when I also learned they were just human and not any god as I was brought up to think about them. Sure they have gone to more uears of school and understand how the body works, but they clearly don't know about everything that the body incounters. That's why they call it a practice! :0)

I figure I need to experiment with foods as meds like they did years and years ago as my meds if possible too. I do take things into real consideration when they tell me to do something, but I don't take it as law anymore. I use that 3-4 week rule with them too! :0) I figure working with them not only helps them find out what Ataxia is like but maybe it can give me idea's and things I need to incorperate too! :0)
Michael Ward said:

Iain just do what makes you feel best.

I'm guilty of badgering you.

Very Very Sorry!

Truly I was only sharing what is working for me.

You say there is no clear evidence which can be detrimental to a persons metal well being.

However the only reason I shared my views was because of the success I have experienced from my own personal quest to survive against conventional wisdom.

I never intended to make you feel worse!

Most of us on this site suffer from this dreaded illness. (Cerebellar Ataxia).

Some of us who have had some success's become zealous and feel inspired to help others that may benefit.

On my part there is no ill intention.

For years I struggled trying to find out what in the world is wrong with me?

Why do I walk funny?

Why do I always get stomach cramps after eating?

Why do I slur like a drunk in the afternoons after eating?

Why do I not have the energy I once had?

Why do I have trouble sleeping? ( I woke up at 2AM and can't fall back to sleep)

Why do I get depressed and have anxiety?

When I was finally diagnosed that I had a shrinking Cerebellum causing me to have ATAXIA I was floored!

I kept a cane handy at all times. I was very depressed.

I would snap at people wondering why they showed no compassion?

So I was at a lost thinking about what to do since there is no cure in my case as to this date!

On the site www.americanataxianetworking.ning.com and this site as well:

I read some chatter about being Gluten Free and the various things people would do to combat ATAXIA and keep it at bay. At first I was very reluctant to this non sense. However when I read and researched the numerous testimonies I gave it it shot despite my disbelief. (What did I have to lose?)

Diagnosed Nov 2010

Saw some family videos of myself and was shock at how bad I slurred my speech (just after Christmas)

Beginning of March 2011 I was at a Conference and would stagger each time I got out of my chair.

I was taking all kinds of medications to go to sleep then something to keep me alert during the day.

Trying to regulate myself so I could keep going.

When I returned home I was just plain worn out!

I was pissed off at my fate. (Sorry I don't know a better word to describe how I felt at the time.)

So my search began to find a way for me to deal with this ATAXIA Challenge.

I was very reluctant at first so I order a stack of books on the subject on a GF Diet by various authors.

Many were backed up by various Doctors at some of the top Universities here in the USA.

Finally I began my self experimentation.

The first step was what can I eat?

I really do love Bread, Pasta, Flour Tortillas, Croutons and especially Pizza.

At first is was a bummer to be honest.

However when my stomach cramps went away and I went the whole day speaking clearer I though to myself wow this is weird?

From there I started to play with PROBIOTICS on a daily routine. (I only took them before for travel)

My digestion became more regular.

Since this initial time of diet change I have added COQ10 (Bio-available Source), B-Complex (Liquid Form) and a few other things.

Plus I quit all junk food, Processed food and Fast Food.

It took a lot of work to learn how to eat correctly.

Diet alone was not enough.

However good diet helps if you want to CORE train.

I hired a personal trainer and worked on making my CORE stronger.

It was kind of expensive so after I learned the techniques I now train on my own.

This helped me to manage my GAIT.

To make a long story short after one year of my GF Diet I returned to my yearly conference.

No sleep meds, No stay away meds. Went all natural!

Saturday, Sunday, Monday, Tuesday, Wednesday made it through the week and even survived air travel.

I can say that after one year of a life style change I'm dealing with my ATAXIA better.

OK Lain I still have ATAXIA. (I just deal better with it!)

However I'm so much better today that I was a year ago or even 3 years ago.

Having said all this one day I may be slammed on my ass? (I am humbled.)

Until then I will do whatever I can to keep going.

I too am stubborn as you.

Mentally I struggle and it's not easy as you know dealing with ATAXIA.

These special diets do not help everyone however some of us do benefit.

Lain in your case just do what you think is the best way to manage. (It doesn't matter what anybody say's if it makes you uncomfortable!)

Mental Health is so important and if my comments cause you to stress out or be detrimental to your health then I have done a disservice too you and I'm deeply sorry.

I just want to do the best I can with what I have been dealt just as you.

I guess my faith in Doctors is not as strong as yours?

When we went on a surf trip to El Salvador many years ago with 5 doctors I realize how much about health they really did not know? All 5 of them were sick as dogs puking up there guts while the surf was amazing. All the surfers (health nuts) who took PROBIOTICS went surfing and did not get sick the whole trip. The Doctors went home without sun tans. When a Doctor is out of shape and has a poor diet I don't think I will take his advice.

For me to trust a Doctor concerning health he better be in much better shape than myself.

You posted Slow Digestion and this turned into another food debate.

Let me say one thing:

PROBIOTICS will help your digestion.

I have traveled all over EUROPE and LATIN AMERICA and I would be sick without them.

Of course we are all different.

These types of self experiments will not kill you however they may make you feel better!

Lain we are all going to be around for quite a while so hopefully we can support and help one other.

Who knows maybe in the next 10 years cures will be available?

Kind regards,

michael

16

Hi Iain, Thanks! See really I'll let you in on a secret! My thought is because I tend to like a bit of control ( ;0) ) sometimes, controling what I put in my mouth is really the only thing I do have control over having this Ataxia.

I tend to be impatient most of the time too. I am learning to have more and more though. I see it as mental exersicing, so it makes me feel good I'm doing two things. :0) I think in my case, there are so many little puzzle peices I don't know which one works but somehow together something is. I just had another MRI of my Cerebellum 3 1/2 weeks ago now and it looks as though I've stoped the progression of it degenerating, which is way cool! And the Dr.'s keep saying it can't be done! :0) My thought is there always has to be a first time. :0)

Lisstening to my body I think has been and is key! I think I love challenges! :0) Things are going to change anyway, so I figure if I get used to changing small things I seem to find it easier when something out of my control comes along that I don't like so I can deal with it better! :0)

Patients for me is a daily thing I have oppertunities to learn. I get over one thing and 2 more hit me! :0)

Choose to make it a great day, I'm gonna too! :0)

Iain Stevenson said:

Interesting comments Sentient and Jeannie. I have been taking natural wheat grain on a daily basis now for about 3? weeks and still don't notice a great deal of benefit. As you mention Sentient how insoluble fiber is not good for you, I'll now look into it to find out in what way?

I admire your patience Jeannie to be able to try different food stuffs for weeks at a time then trying something else afterwards. I honestly couldn't be bothered with all the hastle. I'm not being ignorant. I'm just impatient when it comes to eating.

17

It is an interesting debate.Iain youonce said to me about co-ordinating two things at once and that helped knowing why I can't do several things at once like I used to.Everything seems to slow down with Cerebellar Degeneration and there is a physical reason for it.Now I concentrate on doing one thing at a time. I don;t get distressed now I know the reason and just accept it.The trouble is we never know if our symptoms are ataxia related and that leaves us wondering.We don't tend to go to the doctor with our symptoms because we may think it is ataxia related when it is not.

I had severe depression at spells in the past and i got used to getting out of it but it took time.Everyone has different ways of coping.The things i did in the past i can no longer do but i haven't had depression now for four years.I would not like depression again.I can see now why my old dr didn't believe me as she had known me through my episodes.Now i have got something physical i don't feel depressed.Tyypical isn't it.I have my own ways of making me feel better and our mental health has to be considered as well as the physical.I think we all have different ways of coping because we are all different but we are united by the fact that many of us have been diagnosed with Ataxia however it manifests itself and whatever the cause.

Marie

18

Thank you all for your support. I just don't think that I could cope with more changes at the moment. I really appreciate your comments. I know we are all different and do things differently regarding our eating habits but I am absolutely fine with no digestive problems as long as I take my Laxido orange sachets. This will do me fine for now.

Michael. If I had any doubts about the way you have came accross to me then I wouldn't have added you as a friend. I have had many good discussions with you on LWA and I have felt for a while now that I know you much better.

I do accept your appologies Jason. I believe its just the way you put yourself accross. I took a negative view.

Yes Marrie trying to do two things at once can be a nightmare.

Having ataxia is definately a daily challenge Jeannie. We have to fight to be in control of ourselves all the time. Its not easy.

19

Hi Lain,

IThis may or may not apply to you but I thought this would be a good place to post this today!

was just reading in ShopSmart magizine (since it came today and I just got done reading the posts and replying to you) about healh nutrition and what can cause problems (I love reading stuff about nutrition for fun) anyway a few things jumped out at me that I wanted to give you or anyone elce for that matter some food for thought about digesitive issues since that's what we were talking about here.

They said in the article (ShopSmart.org Aprill 2012 page 63 either to cut back on and also what can cause problems) that sugar alcohols that are commonly used in ice creams, gums, mints and candies can cause gas and diarhea. It said, if you're having digestive problems, try avoiding foods with isomalt or ingredients ending in the suffic "ol," such as sorbitol and xylitol. Wasn't this interesting?

The other thing that they had a listed was Olestra (Olean) it a fat substitue used in Lay's, Pringles and Ruffles, light chips passes throug the system undigested, so it dowwwsn't add calories but it can cause gastroointestinal problems, including stomach cramps and loose stools. An occational serving is fine as long as it does'nt upset you stomach.

I chew allot of gum and I need to look just in case they list ithis stuff too! I never would have know this before I read it. I wonder what elce is out there that I'm eatting! :0( Ewww! :0)

I thought this was very interesting.data for people to know.

20

Yes Jeannie, very interesting.