I'm rather new to flare up of auto-immune disease. I'm used to EDS issues. So I ask if anyone else is familiar with this problem.
I finally made pasta sauce for children, used Passata instead of while tomatoes (not natural as Pop was Italian) but necessary due to Gastroparesis. Soon after dinner felt like flu then all the fun pain from ligaments and joints joined in following with migraine. Pretty tough night and still suffering 2 days later but feeling much better than I did, just shaky and unstable. It hit quite hard and quite fast.
Anyone else have this problem?
Hope you are all on a good day today!
🌻🌹☉
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Ladyuponthelake
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I haven't had this problem myself, but I have heard of others with gastric problems reacting badly to plants from the nightshade family ( I think tomatoes belong there)
My gastric problems mean I can't even persuade pasta to get into my stomach!
I can eat pasta and have been able to eat Passata because no seeds nor skin, in very small amounts. This was Lupus or Sjögrens flare. But it happened so fast? I've never had flu like symptoms starting an IBS episode, I didn't have any stomach problems just flu symtoms and high painlevel joints, ligaments and muscles.
Oh I've been told by dietician not to eat cold or reheated pastas. But it was so bad I don't dare try it again.
I can eat any meat/fish, which many can't. So count my lucky stars!
We are all so different! I'm in the no meat or fish camp. My diet is very restricted and I so much want and need to put weight on.
It sounds like it may be a reaction to the skin and pips. Or it may be a coincidence. These AI disorders are like a cryptic crossword puzzle in Ancient Sumerian! x
I can't eat so many things, I usually just eat a meat/fish and rice. Pasta in a white sauce was alright. I guess I'll find that out next time. I used to be a chef in the states so it makes it very difficult... like losing an old friend.
Having been a chef must make it quite sad. It took me some time to accept that certain foods are a very bad idea. After 4 years I still miss coffee. I haven't had alchohol for a long time, and just the occasional glass of red wine would be great! Fortunately I'm fine with dairy. Love my natual yoghurts and the protein in the Greek ones!
Unless fresh fruit and veg is toddler mashed it is a no go. I'm afraid I often don't bother much: a combination of living alone, some fear of stuff getting stuck and a very small appetire make it seem not worth it. I need to pull myself together!
Ohhh that sounds so familiar... Yes some days are hard to pull yourself together. I'm with you, and anytime you need to talk just PM me. I'm either home or at home😉.
Late to the game, but thought I’d add my two cents regarding coffee. Burnt versions are actually safe for us - otherwise known as a “Dark Roast” or level 5. It’s the only truly anti-inflammatory kind! I find other types cause me a lot of issues, my flares are really obvious with a butterfly rash, so I usually know what my body hates that I’m ingesting. Hoping a few others can reintroduce coffee or drink this kind without worrying!
I've not been fully diagnosed, just told what I need investigating. But my adrenal glands are definitely a problem!
I just saw a Rhuematologist for bone density, that I've seen years ago for joints. He said I wrote that you have EDS and Fibromyalgia. I was shocked, I'd never seen nor ever heard anything of this report. I said "I have Fibromyalgia?" He said "well Fibromyalgia is like IBS... many different symptoms that we can't distinguish or diagnose come under this classification Fibromyalgia" soooo I guess we all here probably have it?
fibro is like IBS ..lol new one to me. for me fibro is the label what they give you when they can't figure out whats wrong with you, pretty much the global delay that children have but its fibro for adults, but yes you are def right in the respect of lots of pain they call it fibro xx bless you , I have heard a few people say EDS effects your tummy badly xx
I also have Eds and have had since young although never been treated for it, just very hyper mobile growing up and lots of dislocations to deal with. I have suffered horrendously with my stomach but never been put down to anything not linked to Eds! Looks like there’s going to be a lot of linking dots for me and discovery over the next little while! X
Very interesting, I can't drink alcohol either. I could years ago. Funnily Antihistamines have always made me feel very shaky, but maybe I should retest that.
Which sounds like what Lisalou makes sense. Definitely worth researching. My dietician was surprised I could eat White Sauce Pasta but not red. She suggested the Passata tomatoes. But it wasn't a digestive problem, it was a flare of an autoimmune.
Tomatoes and benzoate (a common preservative) containing foods can give people all sorts of strange reactions. I know that if people have allergies to cinnamon/benzoates/tomato based foods, they can get really sore mouths and generally feel a bit rubbish.
Do you have problems with other preserved foods and things like chocolate or colas?
Sorry you have been feeling so unwell but good to know you are now on the road to feeling a little better!
I was initially told I could possibly have Lupus but, as it turns out, I have Behcet's and Vascuiltis. Still being monitored in spite of having this diagnosis as my many symptoms continue to flare.... migraine being one of them and it seems certain foods can be a trigger.
I began to notice many reactions to certain foods, especially tomatoes, fresh fruits, (skin peeling from inside of mouth was especially unpleasant) and most salad items....its not the best for my diet and I find it really difficult to know what I can tolerate these days. I take antihistamines -Fexofenadine and they do appear to be helping to dampen down some of the reaction to a minimum. Tongue hasn't been too swollen and mouth ulcers to perhaps one or two every three weeks, as opposed to every week with no respite. So, I make most of my meals without any form of convenience foods/ ready made sauces or anything with additives. (wonder if the passata had some other added ingredient that aggravated your stomach/system?) It is very time consuming and on days when I really do not feel like cooking I would dearly love to be lazy and have a quick fix meal. That said, I know would suffer because of it. I mainly eat, fish and chicken, rice and vegetables. I can tolerate a small amount of dairy but only a small amount as this causes reflux. I ate some cold, home-cooked salmon to try and up the Omega3 and had the most horrific reaction to that - put me off it for a while. It's a minefield as on some days I am able to eat a certain food I tolerated well, only to then eat it another day and have a reaction to it.
I have an old sieve of my mother's that removes seeds and skin, which makes the same as a Passata, it was just easier to describe. But I know what you mean one day a food is okay and another it's your worst enemy.
Having Gastric problems for so many years has put fruit and veg on the no go list. Yes, of course tomatoe is a fruit (without seeds and sjin it was fine cooked) but it never caused a flare of any kind. But Gastric wasn't a problem this time. Some new venture. Could be Sjögrens. It's just a guessing game sometimes.
I can’t eat passata or any fresh/concentrated tomato products! I feel so ill after, it makes my malar rash worse and I feel really fluey after. I’m sometimes like this with onions and garlic too. I can handle ketchup though but that’s hardly fresh! Good to know I’m not the only one! X
I have to be careful with all belladonna foods including tomatoes, but eat only occasionally and only one or two - never processed tomatoes - I just cook them with my beans, but no grains either including pasta or any other.
I've never had a problem until age 56, how bizarre. My range a foods is becoming smaller and smaller and starting to lose weight again. I remember when that as a good thing!
I suggest you read Tom O'Bryans The auto immune Fix which gives amazing insight into current research around auto immune disease and our gut health. Tomatoes are part of the nightshade family along with potatoes and aubergine and for many can exacerbate symptoms alongside comm on main issues being around gluten and dairy. Tomatoes contain something that is used in vaccines to trigger an immune response and the body reacts to this as a bad thing and it sets up an immune response. If you can get other leaky gut issues fixed, then sometimes you can come back to these foods. I have been on gluten and dairy free diet since Jan and my lupus is so much better,but I definitely can feel a difference when eat tomatoes. Just try gluten and dairy free for 3 weeks and see how you feel.
Funnily this didn't affect my gastric problems at all, just flu like symptoms and ligament and joint pain, fairly severe pain this flare. But it also went away much quicker than normal.
I'm still undiagnosed other than Sjögrens and EDS. But my Rheumatologist clinic letter states to investigate other autoimmune diseases.
Yep the tomatoes and nightshades trigger the inflammatory response, so pain in joints and other parts of body. Its hard to get your head around the fact that issues with the gut can enable the body to have an auto immune response, but when you read about it, it does make sense. Once you have a break from the foods that are exacerbating it, you can notice the difference when you have them again.
Thanks so much for your information. My gastric problems seem turned on their head since autoimmune system is in constant flare, just sometimes worse than others. However my gut doesn't seem as bothered as usual. I guess whatever is attacking me is attacking the weakest point which isn't my stomach just now. Ligaments & muscles spasms and joint pain are the weakest.
My newest gig is sleeping all the time, dreaming of leg pain.... gotta love this ride 😉
Yep, thats the thing you get all the pain in other places because your auto immune system has been triggered. Many functional medicine Drs believe that the route of these issues goes back to the gut. Things like Gluten cause damage to the gut, which means it allows things to get into the blood stream which over time stimulate the immune system. Then the body cannot distinguish between these and itself and you get the pain. If you address the underlying issues, which can be a food allergy and heal the gut with probiotics etc then the auto immune system can heal. Anyway I will leave you in peace now
I thought of the probiotics a while back and it didn't seem to have any affect. Lately my gut is only happy meat, so carbs have cut themselves out. Again strange how the body instinctly works.
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