Hi everyone, I have diagnosed Sjogren's Syndrome, and allergic rhinitis. But cannot find what I am allergic to.I eliminated gluten , sugar , chocolates, dairy ,egg , pork and nightshade veges, still sneeze after meals , nose been blocked then feel tight chest and hard to breathing. Is that a part of Sjogren's Syndrome? Anyone else has the experience?
Thanks for sharing
SS can leave you with dry tissues - nose can get sores in them, eyes can get scratched if you don't keep them hydrated, and it can cause a lot of other issues. Yes, you can get shortness of breath from SS. It almost sounds to me like you might have asthma. Obviously we are not professionals for the most part on here, so I would really recommend that you get to your GP as soon as you can.
There are other ways to check for allergies too. After you see your GP, I would secondarily recommend that you see an allergist for testing. My hubby and I had AlCat tests done a few years ago when we could afford it, but the tests are around $1,000 each. They did give a clear picture however of what we needed to avoid, and it was much more extensive than we realized.
I wish you luck getting it under control, but like I said, GP as soon as you can. That lung involvement can be really serious and worse if left uncontrolled. Let us know how you do..
Hi thanks for your advise. I have been my GP, he was going to ask me to take X-ray but I have no wheeze no caught so I didn't do it. Yesterday and today I was staying inside at home whole days, not in sun at all so my nose , throat and breathing all felt much better. Really is the sun impacted on the symptoms.
I am been allergy specialist 4 years ago,had done a lot of tests with no outcome.it took long ti.e also . he test all about chemical but I feel i am allergic to food such as chocolates, pork etc as i know. I woul like to know what sore test was your specialist did and how long it took totally ? I wish i can get it done in short periods, I can't stand it if take years, 😓
I have got GERD as well , maybe it cause breathing problem.
Hi Xiao - the test I did was a mail in, and they test your blood. You sign up and pay the money, and they tell you where to get the blood drawn. They also send you a package with test tubes and mailing envelopes. You give the people that draw the blood the mailing package, and they send it in for you. When you get your results, you can see (based on what you pay them to test) what you are allergic to (red), sensitive to (orange), warning (yellow), and okay with (green). AlCat is the name of the firm, but like I said, it can be very expensive. They will test food, chemicals, medications, molds, etc. based on what you select.
Another method I have used in the past was the standard "scratch and apply" method at the allergist. They check somewhere around 10 or so substances at a time, but usually not food as far as I can tell. My concern with that method is that people react in different ways and times. My husband is one of those that flashes immediately when he is scratched with something he is allergic to, getting a large red bump within 2 - 5 minutes. Then his bump goes away in about 15 minutes. I do not react for about an hour, but the bump turns purple and lasts for about 3 - 4 weeks. so, they claimed that I had no allergies, but he did. They were wrong in terms of mine.
Another way to check for allergies is to take a small piece of whatever you are testing and tape it to your forearm with a Band-Aid... Leave it over night if you can. If you turn red or itch from the chocolate, or whatever you are testing, you are probably sensitive to it. This is slow, but free. I would only test one item every few days to keep from confusing your system, and I would be really careful using this method with chemicals and medications. That can be really dangerous if you ARE allergic to something, and you can burn your skin with many substances.
Finally, you can try the elimination diet where you stop eating the substance for a couple of weeks (search online for the exact time and processes), and keep notes of how you feel. Then add it back in and make notes of how it affects you. If no effect, you are probably okay with the food. Obviously, this is aimed toward edible substances only.
I'm not sure that any of this will help you, but they are the only ways I know of off hand to check for allergies. And yeah, GERD can definitely cause breathing issues. Good luck with getting all of it under control. It can be hard I know...
Hi Caeryl , I am appreciated that you been very patien with me.
I have lost my patien with allergy test because it took a lot of time and financially without no answer. I am using elimination of food. No gluten,no dairy , sugar and egg. But i have lost a lot weight,is it connected with elimination of food?
For myself i don't believe that be cause i eat a lot of oat bread , rice and beef . That why I am very anxiety and tried to find out the answer. It's frustrating.
Thank a lot for you take time to help me.
Xoxo
Yeah - The scratch test is painful and takes a long time. The end goal for them I think is to give you allergy shots to counteract your allergic reactions. Have you noticed that you feel better by removing those foods? If not, you may be limiting unnecessarily..
I am assuming that you don't need to lose weight. Be careful to replace your caloric intake with other foods. Figuring you have eliminated sugars, and carbs (more or less the same as sugars), you may be taking in too few calories. Add some veggies and maybe other grains and fish in to keep your calories up. Also consider some good oils - like EV coconut oil, EV Olive Oil, EV sesame oil, etc. Just avoid Canola like the plague. It is made from rapeseed oil using a chemical extractor.
I still think that you need to talk with your Doc - none of us are clinical (well few of us are anyway), and a guide through this journey would be good, especially if you are losing too much weight. My concern would be what if it isn't just the foods you've eliminated?
Take Care Xiao and let us know how you are doing...
Oats can contain gluten depending on the way it is processed. Sometimes some wheat flour is added to keep the oats from clumping. Also it causes bloating in me even if it is gluten-free. I hope your are avoiding processed foods mostly.
I recommend Omega3 fatty acids to help with dryness.
I have my SS fairly well under control but still have some allergy responses or stuffy sinuses. Saline nose sprays help, no medicine in them. I also use essential oils to help my sinuses drain. It lessens the post-nasal drips which causes my coughing. Try to Veriditas website for info. about oils, or another reputable one.
Hi SusieW2, thanks for your information. How you manage your SS, what allergy responces do you have? I stopped gluten, milk/ dairy food,suger,egg , nuts and beans( I am intolerent of amine also) etc.
Is Omega3 fatty acids not cause you sneeze ?
Thank you again
Xiaoqin
I have an allergic reaction to high acid foods like strawberries, citrus fruit, tomatoes & peppers as well as coconut of all things. I can use black pepper and small amounts of pepper, tomato, orange peel, etc. as flavorings, just not much more concentration. My allergic reaction is more on the eczema side with tingling, itching and tiny pockets of liquid under the skin which then gets rashy and my skin cracks a little before it heals. Gluten makes me feel bloated, gassy & my joints ache. I think corn does this, too. I have to look up amine.
One of the things that is helping me to manage SS symptom of mouth sores and cracked/chapped lips is a homeopathic remedy called Natrum Phos. It is just potassium sulfate but has a little lactose in it. When I feel like my lips are getting chapped or sore, I take 4 tabs under my tongue 3-5 times a day. I try to stop when the flare-up quietens as I don't want to take it all the time. I am afraid of building up a tolerance to it and lessening its effects. I buy it online at 1-800--homeopathy. It isn't costly.
I take the fatty acids in the form of fish oil, the burpless variety. I don't all. It has really helped my dry eyes so think it probably helps with all of the dryness areas. I also use a product, Theratears to wash my eyelids. It seems to help expecially if my eyes are feeling gritty.
My sinuses drain slowly often giving me a tickle at the back of my throat and sometimes gets stuffed up. This gives me headaches. When this happen I use an essential oil blend made by Veriditas. Young Living brand also has one but is more expensive. I don't trust the supermarket brands. Anyway, I rub a drop around the nostril, just a tiny bit inside. Sometimes it really makes me sneeze. But the my sinuses run, helping the thick mucus to drain out. If your nose is really dry or you have a cough, some people use it in a diffuser mixed with water that mists into the air.
For joint & muscle pain I use Turmeric, or dark cherry capsules and cinnamon to reduce inflammation. Your new diet will also help this. I also take white willow bark in capsules when I use it for pain. But this contains Salicin which is similar to aspirin so you need to be careful if aspirin is a problem for you. Here's a web link. webmd.com/vitamins/ai/ingre...
For general digestion I take a daily probiotic and try to start each meal with a raw fruit or vegetable. They contain enzymes which help digestion and are often killed by heating. But this differs for each food and I'm not sure of the details. But it seems to lessen my intestinal gas and burping.
I also try to drink lots of water and exercise regularly. I'm looking into Alkaline water for better hydration. I think acupuncture could be a help but have only tried it a few times.
This is a lot but it comes from a lot of trial and error when doctors were not able to to help with symptoms. A Naturopathic doctor has also prescribed a testosterone cream which has helped to fight my tiredness. Keep trying and learning!
Hi SusieW2, thank you very very much ⚘⚘⚘you shared a lot of your experiences which very helpful.
My allergic reaction are sneezing, blacked nose and short breath. Nutropathy doctor rekcon I have got Leaking gut and I believe it. I do eliminating food and take Vitamin D x 3 times per day , I found its helped my sneesing. For the blooting I take digestive aid which I have got from Chemical wherehose. Maybe I should try raw veggies.
For my tiredness I use American ginseng to make tea, it seemed helped me, also my specislist prescripted plaquenil which worked on tiredness. Have you take any medication for SS yet ?
For my dry nose I use humidifier in my home all the winter time, and I tried put essential oil but made me sneesing worse. So I only use water. Also its help dry eyes.
I have got sore tongue,for this i take vitamin B12 and foliac acid and eat beef daily which really helps.
I will put fish oil back on my diet, I use to take it for some reason I had stopped.
How did you find you are allergic to high acid dood ? My dietitian fingered out i was allergic to amine and high acid fruits.
The worset thing is SS seemed involved my heart. 😥
Wish you keeping try and share your experience.
I think I'll try Ginseng again. I tool it years ago. I also humidify in the winter and have a diffuser in the bedroom. Beef every day, that's a new one to westerners who are told to eat less red meat. I'll look into it.
I found out about the acid on a trip to Florida. Eating much citrus and my eczema and inflammation got so bad I couldn't close my fist. Old dermatologist said, "there's no connection." So I got a new, younger dermatologist who said the patients were self-reporting food connections with eczema rashes & inflammation responses.
Yes, the scariest part is damage to organs. I hope you find some things that help you feel better and protect your heart.
Yes I had severe rhinitis (assumed to be allergic) for a few years well before the Sjögren’s was diagnosed. As well as SSI also have autoimmune Hypothyroidism.
I’ve never been diagnosed with Mast Cell Activation Disorder but I’ve had anaphylaxis three times and a lifetime of eczema, childhood alopecia, phompholyx, random allergies and more recently, very severe reactions to medications. I was told by a Sjögren’s expert that this is very common for us.
Anaphylaxis is terrifying to me. I'm asthmatic and lack of air can send me up quickly... Interestingly enough, I never had much as a kid. Nothing started until my asthma - that was the first, then came endometriosis, then hypothyroidism.. It seems like they tend to follow a path for many of us, huh?
This is interesting CaerylUSA.
I can totally empathise with your fear of anaphylaxis. I too have asthma. And strangely enough, prior to this 20 years ago I had endometriosis. Had to have total abdominal hysterectomy-my insides were in a poor state! Now I am trying get to the bottom of many strange symptoms and a number of them appear to be allergy driven. I am not yet diagnosed with a specific autoimmune disease but have had a number of investigations that suggest there is something amiss but not enough criteria to fulfil a specific title. So yes, after reading many posts about different types of autoimmunity they do appear to follow a path -or cross over.
Do hope your asthma is well controlled and you have regular check ups?
Chin up.
Sue.x
Hey Sue - Thank you - Yes - It took me about 5 years to get a handle on the asthma, but it has been good since then. While I would not wish any of this on anyone - even an enemy, I will hope that you get identification soon. As hard as the news can be, vague suspicion can be light years worse as we imagine the worst. Take care
Good to hear your asthma symptoms are being alleviated! 👍🏼
And you are right, so very true - certainly doesn’t help the cause, does it?
And thank you! x
All above ladies , thank you so much for sharing your experience which very helpful. About allergic to the medications will be scarier. I have got becarful of it. I find out that some food and uv really cause my nose and breathing problem. If I stay home all day then my nose and breathing been very good. I only go out after uv gone. Also if my acid reflux under control i feel much better.
Wish you all get top of the asthma and the allergies.
Cheers
Xiao
Thank you Xiao!
And you too.
I have read somewhere that reflux (silent) can cause asthma type symptoms. Slightly different to the GERD we tend to read about more often.
Keep well.
Sue. x
A cold Kiwi with Raynaud's and now Sjogren's syndrome, needs help..?
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