Food Tolerance Tests?

[CavendishCool]

Does anyone out there have any opinion on food tolerance tests for helping the inflammation of Lupus? Are they worth the money? Have they helped? I have just read an article on how they helped someone with Lyme's Disease. Is it just a silly question? Any advice or discussion would be great/helpful. Thank you and wishing you all a Happy and Healthier New Year. Namaste 🙏 🧘‍♀️❤

[PMRpro]

Were they also sellling them? IMHO - the only benefit is for their bank balance - at the expense of yours. I know of people who have tried them - and got totally different results from each of the sources. The result is often an imbalanced diet missing nutrients and actually worse for you.

A far more effective - and cheaper - assessment would be a proper dietician supervised exclusion diet where you start with a very basic diet and add foods in in turn, observing ups and down associated with it. But it must be a registered dietician - not one out to make money from you.

[CavendishCool in reply to PMRpro]

Hi there. Thank you so much for replying. No they weren't selling them, but in my heart I agree with you and I'm just grasping at straws. I haven't slept properly since before Christmas and I've been very stressed and anxious too; that has exacerbated my Lupus inflammation. The joint pain has been so bad that I've spent a few nights sitting in the chair. I have taken myself in hand and given myself a good talking to. I was just casting the net in case someone somewhere had a good experience with food tolerance testing. Thanks for the "money" shout out, I lost 80% of my clients since 2019 so money is very tight and the little bit I have mustn't be wasted. That's made my mind up. Thank you so much. I'm still relatively new to Lupus so I think I'm also trying to come to terms with the whole thing. I probably need to deal with the root of the problem. Thanks for not making me feel stupid for asking the question. Keep well yourself and many thanks again. Namaste 🙏 🧘‍♀️❤

[PMRpro in reply to CavendishCool]

There are no stupid questions - only stupid answers! If you needed to ask it, it worried you and so it wasn't stupid.

You mention stress - and that is the worst all all things for autoimmune disease. My husband has been seriously ill for most of Covid and my pred dose rose and rose to keep me going as sole carer. He died at the end of October - I am down to 2/3 of the dose I was needing at the end.

Can that stress be addressed? If not removed - and xmas is now over so that is one thing out of the way! - then talk to your doctor about other options like CBT or even medication.

[svfarmer in reply to PMRpro]

Hi PMRpro I’m so very sorry to hear of the loss of your husband- that must have been very tough for you - sending lots of love ❤️

[MrsMarigold]

Hi Cavendish. I’m in the US. Food Intolerance test like allergy testing for foods? I’m going to finally do something like that this year. Also start an Autoimmune Diet. There are many books/ info on what lowers inflammation. I know exactly how you feel about the anxiety. I’m not so new to to Lupus but I’m new to the final diagnosis

And all of its friends. It should not have taken me by surprise—the panic and the pain over the holidays. Most family members came down with Covid. My husband and I escaped to the beach ( it’s not that far from where we live). Long story short talking to myself and breathing and all the organic things I’ve done for centuries just did not work. Luckily I’ve known my GP for over 20 years. Sent an email and got some medicine to help me sleep as well as another my new neurologist recommended.

I should have sought help earlier. I was flaring on the way to the beach ( think winter beach. Not hot) now am in perhaps worst flare I recall in years. Hope you seek GP help soon. And joint pain gets better💕🥳

[Lizard28]

I asked my GP about these intolerance tests she told me not to waste my money.

[Hamptons]

I am not a big believer of anything however after a job ending flare I decided to be more brutal with foods and removed all processed and high inflammatory foods. Health certainly improved, over time I have returned to a less efficient diet and there are definite foods that cause joint pain and worsen fatigue. I have Long Covid and did a dietician directed low histamine diet and again found it reduced symptoms, had a Covid flare over Christmas which I am sure was related mainly to food. You can try identify foods that trigger symptoms. When you have a bad day look at what you ate and then try eliminating different things. I now don’t have lactose products and that makes a difference. I find tomatoes cause issues which is a shame as I am a rubbish cook so passata goes in everything. Look up inflammation foods and see if you have symptoms when you eat them.

You learn with Lupus to be your own everything otherwise it can cost a fortune. You could contact a local university dietician course and offer yourself as a case study.

Good luck

[Minnie2000]

Hi,I'm not sure if they are still on the site but during lockdown lupus UK did some virtual events - one of these was lupus and diet. I found it quite helpful so you might like to take a look. Hope it helps. Take care.

[Tanitani]

I used the test, followed the restricted diet and didnt see any benefits. I experimented with so many diets just to conclude the food isnt a trigger, but any type of stress and of course sunlight. So now Im concentrating on improving my resilience so i dont get stressed out more than i have to.

[Treetop33]

I went on a food elimination diet when I was first diagnosed and since noticed that I am actually intolerant to quite a few things. And to add to it, sometimes I become intolerant to things I wasn't before. And sometimes intolerances don't show up for a couple of weeks, and even then you think, was it the food or something else. Agh!!! But it does have an impact on the flares, it appears.

I went to a nutritionist to do this at first. You can add things back one at a time and see which ones have a bad impact.

If I was doing it all over again, I'd cut things out - gluten, dairy, etc - until I felt generally ok, then keep at that level.

[aaaggghhh]

I think they are worth it but try via recommended nutritionist and reliable sources to not be ripped off! Personally I think nutrition is important and overlooked in Lupus care. I trained as a nutritionist to help myself. I used York testing. My health definitely improves when I sort out my diet. Just my personal experience. Seek professional advice. I don't think looking for other ways tham medicine to help yourself is grasping at straws, it's proactive. Good luck.

[Hidden]

Hi

Bit late responding but for what it’s worth, many years ago I did do a test - prior to my Lupus diagnosis. I’d had food intolerances for years causing me lots of problems. I had an idea of some foods that were affecting me, but thought it’d be a shortcut to months of trying different things to see what was causing me the problems. Anyway, when the test arrived back, absolutely nothing tallied with my known food intolerances. So, it was absolutely wasted money. Also, in New Scientist magazine one person did these tests with lots of different companies and they all came back with different results - the view was that science isn’t currently able to accurately ascertain intolerances via blood reactions.

I too was only diagnosed in August last year so I get it’s a lot to get your head around. I think I’m starting to find my feet a little - well, maybe, some of the time - two steps forward and one back, then hit another flare and back to square one again.

Take care

[catblue1865]

I went on an elimination diet last year with the help of a nutritionist I found online unfortunately it didn't help.

Way back in 2006 I went to a different nutritionist who did food intolerance testing but with a machine not blood tests, she said I was testing positive for wheat, so I religiously cut it out of my diet and at first it seemed to work but then my agonising joint and muscle pain came back, so I went to see her again and she re tested me and said I was showing positive for milk as well now at which point I gave up as didn't think I'd be able to have any breakfast.

Really sorry to hear your having such a terrible time Cavendish. I'm really struggeling at moment my worst symptom at this time being acute photosensitive.