Sjogrens Disease and severe mouth dryness

Hi Jennifer,The night I had gotten bread stuck in my esophagus and had to call 911, I had dipped in lots of butter and I was dry and knew I should have moistened my mouth and throat with a a couple drinks of water but I was careless and wasn't doing what I usually did by not chewing well enough and eating way to fast. I am now going to avoid the bread, chips etc. Try may taste good but not worth the risk. I never want to experience that that pain and fear again. I hope this helps others who read this to just be more cautious and careful when they eat. I dont want anyone else to have to go through something like this that may have been prevented by just changing diet, chewing food, taking time and not eating to fast or too large of bites and keeping our throats and mouths moist.

I'm so sorry you had a painful experience while you were eating pretzels. U may have something regarding starches in these dry foods. Its definitely a wake up call to everyone even if you don't have ss. God bless you, Kristy k

Hi Jordan, I agree about the stickiness. Potatoes actually get stuck much more often than bread, and I'm sure it's the stickiness that does it. Fortunately, as potatoes are softer and easier to break down than bread, I can usually dissolve the lump quite quickly by taking tiny sips of water. Once bread gets stuck, I'm in for the duration of course.

We don't eat pretzels where I come from. The only time I ever tried one I thought it was among the most disgusting things I'd ever tasted - so no temptation there!

Hi Jordan, Omega 7 is one of the rarer omega oils. As far as I know, the only abundant source is sea buckthorn oil. I've recently re-started this, having stopped it for a while when I believed it was causing my very severe diarrhoea (which turned out to be down to ubiquinol).

After three months of taking sea buckthorn oil at the end of last year I noticed a slight improvement in my dry eyes and a marked improvement in tendinitis and joint pains. In fact, the tendinitis has cleared up almost completely, after several years of pain which became disabling in the final year. However, I don't know whether this is really due to the sea buckthorn or whether it would have happened anyway, as my SS has always been unusually prone to flare-ups and remissions. In any case, I plan to complete the current three-month course, started last month.

As already mentioned in these forums, my main concern is that omega 7 only occurs in minute quantities in most foodstuffs (mainly dairy I believe). This may mean that our metabolism isn't really geared to cope with it. As it's only very recently started being extracted, there isn't enough historical data on this. I suspect that if there are any harmful effects they would show up in the liver.

It's for this reason that I've decided only to take it for three months on, three months off. Having said that, I stopped the original three-month trial last November and a blood test taken in March actually showed my liver enzymes to be in a better state than they've ever been!

Does SS actually cause tendonitis? I 1st had it when I was overdoing it in gym with free weights about 14 yrs ago (across the shoulder blade and also at the top of the same arm) It comes and goes depending on what i lift... I think.. I also slipped had a nasty fall 4 yrs ago on a marble floor ...with all my weight on the   same arm as the tendonits ...this time it was my elbow..in a cast for 2 weeks for a possible minute fracture..though xrays showed nothing...Last April the elbow started to act up ...where i cant straighten it..without pain ...a rhuem diagnosed it as reactive arthritis....put on arcoxia for 10 days...made no difference ..told to take it for another 10 days ...noticed a couple of non painful non itchy lesions on the same arm..told a mild reaction..would clear up once med stopped.......few days later ..all over body ...1 of the 3 skin specialists diagnosed it as Pityriasis Roscea...and another rhuem also diagnosed me with SS through positive blood tests.... ..i have never associated SS with either my elbow or arm tendinitis flare up. At the moment my elbow is giving me trouble and in contant pain (except when actually asleep) 

Could this just a coincidence or is SS causing it to flare?

I think when you have a condition you walk a fine line - being aware of your particular symptoms and how to identify and manage them, and not blaming all your health issues on the SS. Sometimes you get it wrong. Sometimes you have to fight for yourself with the doctor to be heard. It isnt easy, but just be careful of tunnel vision and thinking everything is SS. Best wishes. 

Hi shaq,

I too was surprised by tendinitis in both upper arms a few years ago. It wasn't too bad for the first couple of years so I didn't take too much notice of it, and didn't associate it with SS either. However, a year ago, after a scary fall down an escalator, I had a really bad flare-up of a lot of SS symptoms, and the tendinitis got very much worse. Someone on these forums (Pam or Christine I think, but can't remember) pointed out that tendinitis (or tendonitis as it's sometimes spelled) is indeed part of SS, which attacks the body's connective tissues.

I went through a very bad year, but am now almost completely pain-free.

Bought macadamia nuts tonight. They are not as tasty as I remember, but if they have omega 7, I will eat them. 

Google sea buckthorn oil. Much more omega 7 and easier to take in capsule form!

I always attribute all my ills to getting old and probably stemming from bad old days when we didnt know about proper exxercise footware or certain excercises ...I have done high impact aerobics and step areobics in soft comfy shoes outdoors in tennis courts or barefoot in gyms with parquet flooring...now i pay the price

i could go and see the rheum I suppose but i know he will stick me back on plaquenil...(he was shocked I took myself off them after a few months when my symptoms improved)..perhaps I should try brufen for a few nights and see if that improves the elbow and now the knees..painful going up or down stairs (maybe due to me walking up escalators in not flat heeled footware) or just flare of SS...arggggggg 

I eat a lot those nuts but they do me good i will increase the quantitiy

Maybe try waiting it out and see if the tendinitis eventually clears up? That's what finally worked for me, though I went through a very difficult year at the end of it. The macadamia nuts might be a good idea too - I'd forgotten they were the one other thing that had quite a lot of omega 7. As already mentioned, my tendinitis finally cleared up after three months on sea buckthorn oil, which contains a lot more omega 7 than macadamia nuts, but that may have been coincidence.

I'd be inclined to up your intake of macadamia nuts if you don't want to take the oil.

I 'll try looking for the seabuckthorn oil...but I doubt I'll find it (currently living in Middle East) so only option is eatnig more of macademia and hopefully that will help

Shaq, the Livestrong* site states that you can also get Omega 7 from fatty acids in whole and 2% milk products. Of course those items may not be available where you are.

*Please no one start in on me about The Great Cheater AKA Lance Armstrong. I was one of only 2 people in Austin Tx who ALWAYS said he had to be cheating This belief meant I had to keep head down mouth firmly closed in all public situations in order to avoid flogging. I also have always been appalled at the 6-figure salaries paid to Livestrong Foundation employees.

That said, I tend to trust them on health science.

That's true, aitarg, but the concentration of omega 7 is still very low in full-fat dairy products. It's much higher in macadamia nuts, so I think they're the better option if you can't get sea buckthorn oil.

I know but Harvard says that both the nuts and sea b. oil contain the harmful palmitic acid in addition to the helpful palmineolitic (sp? ) acid so we don't knowthat those are safe sources

Really I was just giving Shaw some additional sources. I read the info on dairy and almost wept because during the 25th years I've drunk only fat free milk I've acquired more and more belly fat.

Oh, that's interesting. Still, the SBO really does seem to have cured my tendinitis and helped a little with my moderately dry eyes, so I'm going to stick to my three-on/three-off schedule for the next couple of years. 

I too switched to semi-skimmed milk (which is 1.5% fat in this neck of the woods) 25 years ago when I was half convinced by all the hoo-ha about dairy. I stopped believing that stuff more than 10 years ago, but the trouble now is that I've got used to semi-skimmed and actually find the texture of full-fat milk quite nauseating.

However, I've always made up for that by eating moderate quantities of butter. 40 years ago I spent some time working for the European HQ of what is now one of the most reviled US chemical companies in the world, which shall remain nameless (but is infamous for its work with GMOs and pesticides). They also had a food division, and what I learned there ensured that I'd never touch artificial sweeteners or low-fat spreads for the rest of my life!

I also enjoy full-fat, natural yoghourt and rich cheeses. After reading your post, I checked out the Chaource cheese (one of my favourites) I bought in the supermarket this afternoon: 50% fat! Cue Homer Simpson drooling noises... I've got belly fat too (and back fat and neck fat and scary upper arms) but with a waist measurement of 86cm/34in I manage to delude myself that I'm just about within the limits!

Not that it's only the Yanks who mess about with natural foods, of course. As a matter of fact, when I was walking home this afternoon I noticed a new poster on a billboard near my house. Translated, it said: "Half-fat butter. Real butter!" Really...? 

Half fat butter indeed! As to your cheese, Livestrong says all cheese is good for the O7.

It's funny, I waffle back and forth on butter. There's always some in the house. For quite a while I've been using a plant oil based spread for toast, potatoes, etc. But I could never convert to reduced fat on cottage cheese. Back in the '80s I read that four-day cottage cheese had health benefits not to be found in lower fat versions. They never said anything about milk fat.

I'm with you on fake sweeteners. Give me the real stuff or I'll do without. I have come to like the erythromycin-stevie combo, but there's nothing fake about those 2.

here's to half fat real butter, obviously taken from the smaller-side udder!

i can get whole fat , low fat, skimmed ,semi skimmed milk. I now use skimmed milk. ..will have to check out what gives 2% and switch

thanks aitarg.

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and continue with increased macademias (though have a huge problem digesting nuts...suffer from GERD ,Barretts esophagus and have mild chronic gastritis and not on any meds)

Hi Shaq

You probably already use these but just in case, if you want to know about parsley and basil helping with GERD, PM me.

Aitarg