Low fodmap diet has been working!! (so far)

[Backtobasics95]

Hello all,

A similar post is already on this RLS section but I thought I'd give my two cents in case someone didn't see it.

So I've been following this diet for about two weeks now.

ibsdiets.org/fodmap-diet/fo...

Wow. It's really working wonders so far. In the first week I did not get any relief, and it seemed like things were getting worse. But over the past 4 days there has been a dramatic improvement. I can safely say that I am getting 60-70% relief 24/7. At certain times of the day it feels like 95% relief. Would love to know your experiences if you've tried the diet and if you haven't, maybe a two-week trial is worth a go?

As with all treatments, it won't work for everyone. But I have found that when people on other forums tell me it hasn't worked, I ask them exactly what they've been eating the last few days. Most of the time they are eating packaged food which contains traces of milk solids and soy, so watch out for that.

Anyway, hope to hear more from you all

[wsjulz]

That's really interesting. I have been looking into the low oxalate diet and it seemed to make sense in that oxalates bind to iron and magnesium and stop your body absorbing it.

I have also just checked out the Fodmap diet and some of the foods it says are the worst for oxalates are the best in Fodmap and vice versa. I might have to try both diets.

[Joolsg in reply to wsjulz]

I found exactly the same. The lists to avoid on a low fodmaps diet are the ones you need to eat on oxalates so impossible to follow both at the same time. I don't eat any processed food- I make everything from fresh ingredients.

I have been following low fodmaps for weeks now and it hasn't made any difference. I suspect that it will only help in mild/moderate cases or where the RLS is secondary. As my RLS is caused by scarring/lesions in my spinal cord I don't think diet will help but it's definitely worth a try for others.

Jools

[Backtobasics95 in reply to Joolsg]

I have seen your posts on this forum before. I can only assume you have had rls longer than me, which means it is probably worse. All I can say is keep it up and go for the full three months. If you get absolutely no results after then, you will know it hasn't worked. Also you really have to research what you are eating and take no risks. You probably already do that so I'm just stating the obvious.

[Joolsg in reply to Backtobasics95]

I will keep it up as I have nothing to lose and everything to gain and , like a lot of people on here, I am desperate to get some relief.

Cheers,

Jools

[Backtobasics95 in reply to Joolsg]

I know exactly how you feel. If you can, I recommend just trying cannabis. You may not know the right people to be able to access it, but if you can somehow, go for it.

[Joolsg in reply to Backtobasics95]

Like you, I have tried cannabis but suffered terrible panic attacks. I think it was you who recommended growing my own and to ensure THC was around 10-15%. I can just see the headlines in my local paper- " middle aged woman guilty of running cannabis factory in suburbs"

Cheers

Jools

[Backtobasics95 in reply to Joolsg]

Yes I have gotten bad anxiety with increased use of cannabis. You know what the problem is? The bloody government won't legalise medical cannabis or decriminalise it at the least, so people like us can't experiment to find the right strand. I have talked about this with RLS sufferers living in American states where medical and recreational cannabis is legal. Even they say it's quite hard to find the right strain, and they have regular access to it! If this diet doesn't work after a good three months of trialling it, you have to at least consider cannabis. There are strains that RLS sufferers swear by with limited anxiety effects, so you do have hope. Anyway, focus all your available time and effort on this diet for now.

[Joolsg in reply to Backtobasics95]

agreed. Will do .

Jools

[Backtobasics95 in reply to wsjulz]

Do one at a time. Like jools said, it's basically impossible and irrational to do both at the same time

[Jeanniebeannie]

Just dont see how it works .when i was a wee girl we were poor and sometimes went without dinner no such thing as rubbish to eat as what we got was healthy And my rls was bad even then.

[wsjulz in reply to Jeanniebeannie]

High oxalates are in the most healthy foods so might be worth a try in case that affected you as a child.

[Backtobasics95 in reply to Jeanniebeannie]

Can't hurt to give it a try

[funnyfennel]

How bad is your RLS? Meaning have you had to resort to the drugs many of us take to get relief and continue our lives? It may be that mild cases do respond to natural and dietary solutions, glad you find relief without the awful drugs.

[Backtobasics95 in reply to funnyfennel]

Pretty bad. I went on requip and sifrol for about two years total. After augmenting both of those, I gave up on prescription drugs. I then got introduced to cannabis. It works but you have to alternate between different strands. The only way I can access multiple strands is if I grow my own. I literally went as far to buy many different kinds of seeds and was about to start growing this week. The day I received the seeds in the mail was the day I started getting results from the fodmap diet. I can only assume my symptoms will be relieved eventually based on my results so far, but if the diet stops working somehow, I will grow my own cannabis and get relief that way.

[Graham3196 in reply to Backtobasics95]

I hope the diet continues to work for you. I have found it very good with a reduction in symptoms I would estimate at about 80% (without any objective measurements of course.) I have had a few times when I thought it was stopping working. Keeping a good food diary I could sometimes trace it back to a restaurant meal or eating at a friends place who just didn't understand the problem. Sometimes I just couldnt be sure. However I can report that, so far, its always re-started after a couple of days. Hopefully there is no equivalent to augmentation.

Whether it only works if you have mild RLS rather than serious RLS depends on the definition. I would be surprised if it works where you are sure that the RLS is caused by some growth. I think that In the diagnosis process there are some questions to define severity such as the number of RLS free nights you have per week and how many hours of sleep you are missing. The IRLS

irlssg.org/diagnostic-crite...

and rls.org.au/pdf/PKGD6.pdf Gives you the idea. The diet helped me and this criteria would rate me a s severe to very severe so I think there is hope for primary sufferers and perhaps its worth giving it a go even if you have some other condition, which I presume makes you a secondary RLS. After all it might be that removing the problem with low FODMAPS removes one of the triggers. Perhaps that trigger is essential to the RLS and so it will be suppressed. We have to remember that most of these questions have not been explored in depth and the medical profession is still calling it a syndrome because they dont know much about the root causes.

In the meantime "may the diet be with you"

Good luck please keep us informed.

[Backtobasics95 in reply to Graham3196]

Thanks for that Graham, some good info there. I think I have primary RLS, because before the diet my symptoms would never go away, even on waking up in the morning. Also, I've had it since the age of 19 and never had any other health issues. As for what is known about RLS, that is extremely frustrating. For such a widespread, terrible thing, I can't believe most doctors don't know what it is. I would really like other sufferers to try this diet and report back the results. Maybe we could combine the data and inform an RLS researcher that we might be on to something? Time will tell

[Jumpey]

Hi. I would really appreciate it if you would keep us informed how you fare on the diet over a number of weeks. As we know this disease goes through active and remissive phases generally. So it's hard to know what is making a difference to it.x

[Backtobasics95 in reply to Jumpey]

Yes no problem. I will give updates week by week. I also come onto this website every morning just to read stuff about RLS, so if you have any further questions just ask and I will answer.

[Backtobasics95]

Had a minor hiccup last week. I ate a bowl of strawberries (supposed to be low fodmap) and my symptoms were non-stop for 2 days. Been about a week and a half since and things are slowly returning back to normal. Right leg is about 90% calm. Left leg has always been 2x worse, so that one about 35% relief. Thought that leg wasn't improving at all, but I can definitely tell there is a teeny tiny improvement. Expecting that to take a good 2 weeks. Have been learning as much as I can about the diet, and how it relates to digestive health. It seems that for the diet to be most effective, you have to have a steady blood flow in your intestines. When you get stressed out, the body goes into fight or flight mode which takes blood out of the intestines and into the muscles (pretty sure that's what happens). So for anyone on this diet, be sure to go for walks every day. Go to the gym and walk on the treadmill. I thought I could do yoga but the feeling in my left leg just won't allow it yet, so I'll stick to morning/afternoon bike rides. So frustrating, 99% of people on this diet are trialling it for IBS, so it is hard to get needed advice from someone with RLS. Will continue to learn more about this and maybe start my own blog 5-10 years down the road. After all, I am studying food science and nutrition....