Gluten free

Hi all,

After two years of having RA and no joy with medications, I have yet again been taken off all meds whilst they try to sort out the optic neuritis I have; which is on the mend (500mg steroids a day helps a lot lol). Luckily my next appointment with the Rheumy consultant is in the first week of January so hopefully will get somewhere then to try to get the joint pain under control.

Last week I was given the good news that I have also developed MS and am now also waiting for further tests and to see the constultant to get this under control too; happily this is January too. I am just hoping both consultants speak to each other and don't put my on meds that dont work together (surely this would never happen).

I was just wondering if any one has tried a gluten free diet and whether it has helped them with RA or MS symptoms. From what I have read a lot of people seem to advocate removing gluten as it reduces some of the issues with joint pains and can help with abdominal problems such as bloating etc which I have been getting recently.

I feel a bit stuck in a rut at the moment having now had no treatment for my RA for 7 months, and want to get more proactive in my road to feeling a little more human; the irritable mummy bear has been very present at the moment; and if this helps with the MS, well bonus!

I have read that you can get gluten free products on prescription for coliac disease but am unsure if this is the case with other diseases (a recent study has linked gluten with a reduction in MS systems; according to the MS website) but perhaps this is a question I need to ask my MS nurse; gluten free does seem to be rather expensive when you are on a limited budget.

Any pointers would be greatfully received.

take care all, gentle hugs

Ruth

15 Replies

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  • Hi Ruth sorry to hear about the MS jumping in on the act.

    I keep my gluten down by choosing gluten free cereals and gluten free bread when they are on offer and at other times I eat yoghurt and fruit for breakfast or poached eggs on a bed of lettuce or with beans but no toast. I also reduce my dairy by using almond milk (unsweetened), avoiding cheese and such like (the lactose in yoghurt is different as the processing changes it somehow so I still eat yogurts). I try to eat predominantly plant based meals and avoid process foods to a degree but I do not go 'fully free' on any of these as it's too intense for me and I just want to live my life as 'normal' as possible. This all seems to help and take the edge of things... I also avoid tomatoes, potatoes and chilli peppers as they can encourage inflammation.

    You might like to look at HBOT and where your nearest MS therapy centre is and explore if it is an option that may help you.

    All the best

    Ali

  • Hi Ruth, sorry to hear you have been diagnosed with MS as well as RA, not good. My sister had optic neurotis about 10 years ago, then in December last year she was having problems with her ankles and had blood tests taken which showed she had Vitamin B12 deficiency. The GP immediately said, because of the optic neurotis, that it had to be MS and sent her for further tests and then consultant appointments for MS. Further tests by the MS department, including MRI scans, have indicated it is highly unlikely to be MS but simply Vitamin B12 deficiency because a lot of MS symptoms are apparently the same as B12 deficiency symptoms. She's subsequently been taking B12 supplements and things have improved a lot, which has been a great relief for her. Her optic neurotis in recent years hasn't been anywhere near as bad as it was originally, and apparently when it first occurred she had MRI scans which didn't show she had MS at that point either. The strange thing is that there appears to be a history of B12 deficiency in our father's family (his mother and brother both have had treatment for the deficiency and in fact our father has just been diagnosed too). Apparently some GPs, including our Uncle's son in law, claim that B12 deficiency doesn't run in families, but in our case it does look that way. My RA has been inherited from our mother's family, both her grandmother and aunt suffered from it. I hope things improve for you. Take care.

  • Thank u both for your replies. I'm not sure I could go the whole gluten free route either so cutting out certain ones may be the way to go. I don't like cereal anyway so that's one less on the list.

    Nicola, I'm so glad for your sister that it wasn't ms. They did mention vitamin deficiency to me to but I have other indicators for

    Ms am going to ask if it worth taking a vitamins just incase. I get moody at the time of the

    Month and know this is a b vitamin that causes this, although I never take any.

    Like u my RA is inherited from

    My mothers sides I was kind of expecting that; just not in my early 40s lol.

    Take care

    X

  • Hi Ruth

    Its worth asking about whether the tests showed B12 deficiency because from what my sister has said, it seems to be little understood by many GPs. My sister was sent down the MS diagnosis route apparently because she had previously had Optic Neurotis, but she was also suffering from burning sensations in her ankles and she's also had Rosacea (although I'm unsure if that can be a symptom of MS, but the B12 supplements have albut cleared it) and problems with her back. I gather NICE guidelines, though, suggest that B12 deficiency should be investigated ahead of any investigation into MS. Thankfully the MRI scans and further tests did indicate that it was unlikely to be MS. You may find with further tests that yours may not be, its always possible. Even if it is, I gather from what I've seen that the majority of sufferers only have mild symptoms.

    I can empathise with RA in your earlier forties, I was diagnosed 5 years ago after it flared up a few months after my 40th birthday. Unfortunately I gather the most common age is between 40 and 50, although it can obviously happen at any time. The strange thing in my family is that as far as we know the only other sufferers from the last four generations have been my great grandmother and one of my grandfather's six siblings. Nobody in my mother's generation has suffered at all. It seems to have skipped quite a lot which does make me wonder why I was so lucky. Having been started on biologics in September, along with Salazupyrin which I had previously taken with MTX, I now for the first time in five years feel that things appear to be improving at last, just hope it continues. I never felt this way when on MTX and Salaz.

    I wish you well.

  • If you are wanting to try a gluten free diet, I would first ask to be screened for coeliac disease (a blood test) before changing your diet. Then, if by chance you are coeliac, it means you can be properly assessed, and then get gluten free food on prescription. Unfortunately you can't get GF foods on prescription unless you are medically diagnosed coeliac - and for adults that means a positive blood test, followed by a positive biopsy (on endoscopy) and diagnosis by a gastroenterologist. I do think its worth at least doing the blood screening to start with though, as too many people try a gluten free diet, then that makes blood tests meaningless (false negatives if you aren't eating gluten) and you never really know for sure if you should be totally avoiding gluten.

  • Hi I am sorry to hear about your struggles. When I was first diagnosed with RA the meds that I was put on did help me for a while but since then I struggled with the meds that I was put on so. So I Decided to see an alternative therapist and functional Health dr. I also started talking and following to someone called dr Tom o'bryan who talks about why we should not eat gluten (because our body does not properly digest gluten) etc. I also started eating a high raw food, low fat plant based diet and I also take Chinese herbs etc.

    There is no one size fits all when it comes down to health but this is just what has helped me.

    I should also say my friend has ms and is getting help from a hospital that specialises in alternative medicine. If you need me to send you some details about what she is doing let me know?

    I am not saying you should not take prescription meds but. Do believe there isn't one size fits all when it comes to out health and. We All need to do what is best for us and our bodys.

    This is a good website that you may want to check out

    nutritionfacts.org/about/

    Also a book called the medical medium is a great book and he also has tons of Info on fb and his internet page about night shade veggies etc.

    You should also check someone out called dr John mcdoughall

    Hope everything works out for you, all the best

  • Have you looked into Jason vale juicing? Or Nutri bullet... Look into recipes for ease pain with swelling. Be very careful with the MS I had the whole checking into MS before then was just another side of the RA. Of cause stress is one of the causes of our RA flare ups but I for one stress more when in pain and so the circle begins again hey.... Hope you find something that helps soon x

  • Hello - like you I am also looking at other things I can do to improve my RA but as far as Ive got is buying a bag of gluten free bread flour which has sat in my cupboard for some months but I do mean to sort my diet out next year - that's my New Years resolution - I am so fed up of sticking needles in myself and swallowing tablets and being in pain. I will be very interested to hear how you go on with your gluten free diet - good luck x

  • I know I am not Ruth but just wanted to say that I have been Gluten free for over 7 years and since doing this and eating whole foods and taking supplements etc this has really helped my ra. I also see someone here because I also got fed up with the whole needle thing so to speak. uclh.nhs.uk/OurServices/Our...

    What works for me might not work for you but I would def recommend going gluten free because our body does not digest gluten properly and this can lead to all sort of problems in the body. Good luck

  • Hello kalel thanks for reply I am starting to change my diet by staying away from processed foods and eating grains veg and fruit and hope to get into the swing of it properly after xmas. Ive been a veggie for years and years but find cake chocolate and biscuits such a temptation and such a comfort !!! Once I was into the swing of things I was going to slowly try to eliminate gluten - I am researching diet etc and finding what works but as you say what works for you might not work for me but its worth a try thanks again and thanks for the link take care xx

  • Hi be careful with grains because I know that they say that people with autoimmune issues should stay away from grains. Also if you ever feel like reducing the amount of sweet treats that you eat look up people like fully raw kristina, Megan Elizabeth. If it helps you out at all I really like either make my own chocolate raw chocolate or I buy raw chocolate from places like raw living eu. I don't know how much fruit you eat but fruit is a great way to curb cravings or making things like date balls with coconut and spices in the food processor is also a good thing to do. There are lots of good books out there but I really like a book called the medical medium at the mo. Good luck with everything. All the best.

  • I'm Celiac and you have to be eating it for the blood test to be accurate, its vital not to stop eating it as restarting is awful. You also have to have a camera down to look at the villi in the tum and then yes you get an allowance of gluten free stuff on the NHS, but be warned its vile the bread is nasty the flour unsafe and I cook, and so go to M&S or Sainsburys were you can Dove Fsrm flour which cooks up a treat and make sure the baking powder is gf free as well. Go to the Celiac website it has loads of info and read the packets before buying as gluten can be hidden in all sorts of stuff even chocolate!

    It is easy to mistake Celiac for IBS so please get tested asap. Good luck

  • Ruth,

    I feel so awful for you that you cannot take any meds while your RA (and other issues!) run rampant. My aunt has MS and has felt much better on a gluten free diet.

    I would strongly suggest you read about Dr Terry Wahls story. She healed herself of MS through diet and has put it in a book for other MS sufferers.

    One of the best decisions I made for myself was not to just give up gluten, but to go grain free. So I didn't try to replace my wheat pasta with gluten-free pasta, I "freed" myself from those options altogether. Unfortunately, piles upon piles of stress has changed that over the past year, and I am definitely suffering from eating GF breads, pastas, and treats.

    I know that Dr Wahls suggests about 9 cups of leafy greens per day, so if you do decide to go that way, expect lots of smoothies and salads! I'm pretty sure her diet would help with your RA too, as it shares a lot of similarities with the autoimmune protocol of the paleo diet (AIP). Dr Wahls was interviewed by Eileen from phoenixhelix.com so you can learn about the differences between The Wahls Diet and the AIP. A combination of the two would surely help you since you are suffering from both RA and MS. (Dr Wahls doesn't eliminate nightshades - potatoes, eggplant, tomatoes, peppers - but AIP does as those are common inflammatory foods and a lot of AIP followers have found issues specifically with tomatoes.)

    Good luck to you! I would love to hear your story if you do try this approach.

    As I mentioned above, I have been "cheating" quite a bit with gluten-free junk foods (GF bread, pasta, pizza, cookies and chocolates) over the past year and I've put on 20 lbs. My RA has somehow magically stay well controlled but I worry that I am relying too much on the drugs and setting my body up for other health issues. So I have recommitted today to the AIP, and given myself a plan to follow to help me succeed. Not fun at Christmas time, but I can be creative. There are a lot of sources out there for support and I really don't feel like I can put it off until January!

    Gentle hugs.

    Karen

  • HI Karen just wanted to quickly say I am pleased to hear that I am not the only one worried about the long term effects of drugs. If it helps you out at all I have been seeing an alternative therapist and slowly trying to wean myself off meds but of course it can take a long time to do this. Good luck with everything.

  • Thanks and good luck to you!

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