The Australian Sjögren's Syndrome Association

Sjogren's Syndrome and allergies

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

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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..

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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.

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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...

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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

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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...

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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.

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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?

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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

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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

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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

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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

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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

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