So, quick background story, my partner was diagnosed with MS early this year - and is due to start on Rebif (the highest dose) this week.
A symptom that seems to have coincided with her diagnosis of MS, has been an upset stomach / diarrhea, which upon looking back over what she’s eaten / drunk, appears to be linked to milk-based dairy (milk, cheese, yoghurt etc etc).
At first we couldn’t really pin what seemed to be the trigger for these stomach issues, and we decided to eliminate gluten first. It then appeared to be milk-based dairy that was the trigger. So my first question, was has anyone else experienced stomach issues from either / or gluten or dairy?
My second questions, is that one of her first symptoms that led to us investigating MS as the cause, was numbness and tingling (common I know), but she had it across her stomach, and since the numbness and tingling has subsided, it has left her feeling like she has a “ball” on her right hand side, just underneath her last rib. Has anyone experienced this? We were thinking it could be a “hug”, but she’s had it for months now…?
Third and final question - greedy i know - but I can’t see any research anywhere that links alcohol consumption to a relapse and exacerbating symptoms. My other half is convinced that alcohol also plays a part in bringing on a symptom / upsetting her stomach / making her feel pretty horrendous - event though she never drinks a lot, and drinks very rarely. Has anyone else had any expereince of this?
I am lactose intolerant but that happened after I started having MS symptoms. I was about 20 when I started to become lactose intolerant and get horrible stomach issues if I have anything with milk in it. You do learn to check labels when shopping a lot more and somethings might be fine to eat, depening on how sensitive the person it. cheese is a tricky one, there are a lot of cheese with low or no milk in them since it gets taken out during the process of making it. GPs told me that pretty much the only way to diagnose someone with lactose intolerance is to give the person a lot of lactose and see what happens. um no, pass on that. dont feel like being ill
With some people the MS hug can last a long time or it could just be numbness that hasn’t gone away. numbness for me can feel like a ball stuck somewhere. def/ talk to her GP or neuro about it tho since they might be able to give her something to help
I was told to not drink a lot as it could trigger a flare up or relapse and with my balance being bad it might make it worse. I don’t really drink a lot anyway, but the very few times I have had a few I seem to walk better for some people alcohol is a huge trigger, for others its fine. if she feels like it does make her symptoms worse, then she shouldn’t drink, simple as that.
sadly its a bit of trial and error to find things she can eat and if she can drink
Thanks for taking the time to respond! The (seemingly) lactose intolerance has definitely started since MS symptoms surfaced - I was seeing if I could find a link between the two…and from what I can see it’s to do with the bodies overly sensitive immune system. I definitely know what you mean about looking more in supermarkets now! We now look at ingrediants for anything with milk-based dairy and gluten!
I’m pretty sure the intolerance to one or either of gluten / dairy, has also led to quite a bit of weight loss - which to be honest, she doesn’t have a lot of weight she can lose. I think it’s because it’s made the diet initially restrictive - but we’re now looking into some dairy / gluten free recipes!
In regards ot the “hug” I think that’s definitely something we’ll check out with the neuro / GP! She’s had it for months, and naturally, worries it’s something else “wrong” with her! Guess that’s one of the worst things about MS, never knowing whether something is a symptom that’s related to MS, or something else entirely!
You’re definitely right about trial and error - unfortunately, that can be a bit of a pain in the backside!
Thanks for taking the time to respond! The (seemingly) lactose intolerance has definitely started since MS symptoms surfaced - I was seeing if I could find a link between the two…and from what I can see it’s to do with the bodies overly sensitive immune system. I definitely know what you mean about looking more in supermarkets now! We now look at ingrediants for anything with milk-based dairy and gluten!
I’m pretty sure the intolerance to one or either of gluten / dairy, has also led to quite a bit of weight loss - which to be honest, she doesn’t have a lot of weight she can lose. I think it’s because it’s made the diet initially restrictive - but we’re now looking into some dairy / gluten free recipes!
In regards ot the “hug” I think that’s definitely something we’ll check out with the neuro / GP! She’s had it for months, and naturally, worries it’s something else “wrong” with her! Guess that’s one of the worst things about MS, never knowing whether something is a symptom that’s related to MS, or something else entirely!
You’re definitely right about trial and error - unfortunately, that can be a bit of a pain in the backside!
Hi Dan.
Not sure if this is much help but at the age of 58 and copeing with MS for about 20 years I recently realised I have a lactose intolerance.
I had a “light bulb” moment when I recently ran out of milk for my morning coffee!
I have also had the “numb body patch” which did leave some after effects ahich now seem to have subsided.
As far as drinking goes I used to find a few beers actually helped my walking!
Sadly since my MS seems to have morphed to SPMS walking has become even more challenging.
A good life philosophy is “yes I have MS, but MS does not have me!”.
Thanks for taking the time to reply! I absolutely agree with that philosophy - albeit, it’s a lot easier for me to agree, as it’s my other half who’s been diagnosed! I try to help reinforce that MS shouldn’t dictate who she is!
Do you think the lactose intolerance was as a direct result of MS, or something that you already had? It definitely seems as though she has developed an intolerance due to MS, rather than it being something she had before!
Thanks for taking the time to reply! I absolutely agree with that philosophy - albeit, it’s a lot easier for me to agree, as it’s my other half who’s been diagnosed! I try to help reinforce that MS shouldn’t dictate who she is!
Do you think the lactose intolerance was as a direct result of MS, or something that you already had? It definitely seems as though she has developed an intolerance due to MS, rather than it being something she had before!
Hi Dan.
Sorry can’t be much more help on this.
For many years I used to work abroad (a lot) and very rarely suffered stomach problems.
I noticed for many years I started having probs within a few days of comming home.
I tried cutting out all the usual stuff, black pepper, chocolate (which I love), even gave up my beloved fags! But as I say it was a real “light bulb” moment to realise I was lactose intolerant (very recently).
Unfortunately the details seem to have faded into the mists of time.
i don’t have any problems with lactose, but i find that my worst symptom (pain) is exacerbated by consumption of anything but very small quantities of alcohol or citrus fruit. i’ve recently added cranberry juice to the list too. of course, i loved citrus/cranberry, so i was annoyed when i realised there was a link, but the pain levels involved left me no choice but to all but cut them out. ms is such a peculiar condition.
i think coconut and soy milk actually taste better then normal milk lol
adult humans do not need to drink milk, and that is one reason they have problems digesting it (one of many) a lot of adults just think its a funny belly/stomach upset when it can be because of lactose but they dont stop to think about it since the might have been drinking/eating it their whole life
not sure of the link if any between ms and lactose intolerance, sometimes people just get hit with one problem after another and they are not linked would be interesting to see if there is a link tho
if she is losing a lot of weight, talk to a gp as soon as possible since it might mean something is wrong and they can help slow the weight loss and you guys might be able to find out if its gluten, or lactose causing a problem. yes it can be very hard to know if a symptom is the MS acting up or something else, but when in doubt, talk to a neuro/gp and over time it does get easier to know when its MS rearing its ugly head or if it is another health concern. tell her to try not to worry, (easier said then done i know), it can cause a flare up/relapse to worsen or last longer
oh and tell her to try to take the rebif before bed because then she should sleep through any side effects if she has any
grown-up people don’t have to drink milk, and that is one reason they have issues processing it (one of a lot of people) a ton of grown-ups simply think its an amusing gut/stomach upset when it could be a direct result of lactose yet they dont stop to consider it since the may have been drinking/consuming it their entire life . To get more detail about Helth or ditetion tips please visit : Alcohol Detox at Home .
Before Dx I used to drink a lot of milk & eat a huge amount of dairy products. When I decided to cut with the dairy (almost one year ago ) it was quite difficult at the beginning but I immediatly noticed how much better i felt. In the morning my stomach was always upset and i was always extremely tired .Now I see an improvment, I eat many more things (porridge, fruts, nuts,soya\almond milk), but no upset stomach…
I am even convincing my husband to try a month without dairy and so far he is not complaining.
As someone suggested, it is alway better to talk to a nutritionist,I was reffered to a dietitian when I decided to change diet (also to check for any food sensitivities).
I didn’t eat any dairy (or gluten or legumes) for many years, from about 2000 to 2011. I was diagnosed with MS in 1999 and was OKish for seven years, then started to go downhill much faster in about 2008. One neurologist I saw said it was my disease entering a new phase. I started eating all food groups again when it began to get too hard for me to cook every meal from scratch. I saw a slowing in my rate of deterioration a while after I started eating everything again.
I have never liked milk much but I have it in porridge at breakfast time and I often have cheese. I never have stomach upsets or bloating. I did have horrible, continuous cystitus (no bacteria, my urine just very acidic) after a couple of weeks on the Wahl diet. I wish I believed diet could improve the horrid MS symptoms I experience. But experience tells me that for me diet has no effect on my MS and that it is likely that Ashton Embry, Dr Wahl and their ilk are just cashing in on the poor people who have MS.
I had glandular fever at the time of my wedding and I had the lump feeling under my ribs. I stopped eating dairy and gluten and tuna I paid for the York test. Got pregnant the lump feeling went away and my ibs. Then was fine until this pregnancy when ms went on a rampage and the lump feelings came back. Glad to hear others feel it though I wish none of us had it x
I definitely think that there is something to this, when I was reading this the first time I was eating cake, as soon as I had done so I started fizzing with pins and needles. I think that I am gluten intolerant and I try to avoid it but I have a very sweet tooth. So I do succumb occasionally.
I also avoid dairy and sugar. I don’t drink and I don’t smoke either. I just have great looking hair.
but seriously I think that anything that agitates your immune system is going to have a negative effect on the evil MS.
Hi, I follow a Paleolithic diet. I’m now of the opinion that there aren’t specific foods that cause problems with health, it’s more that so much of our food is “messed around with” we’re told for our health and convenience. Milk is pasteurised, wheat is engineered to contain 50x more gluten than wheat of old, tap water is treated and has chlorine and fluoride added, supermarkets sell “food” full of artificial sweeteners, colourings, flavourings, there’s preservatives, junk food…we live in a world where people are out to make as much profit as possible using as cheap ingredients as possible. Then there’s the stuff we put on our skin, wash our clothes with, breathe in. When you think about what we put our bodies through, there’s no wonder we’re ill. Being Paleo doesn’t make me a health freak. I just want to eat real food. It’s important to adjust your idea of portion size as a lot of the bad stuff is calorific, so you need to eat lots of the good stuff to maintain calorie intake. Heather
or it could just be numbness that hasn’t gone away. numbness for me can feel like a ball stuck somewhere. def/ talk to her GP or neuro about it tho since they might be able to give her something to help