Do you think I have Sjogren's?

[rubyslippers]

The doctors cannot figure it out. My ANA test is less than 1 and clinically very insignificant. The A and B tests also show nothing. I have acid reflux which causes hoarseness, dry eye, dry mouth. I do not have all these symptoms all the time. Can be free of all but the dry eye for months at a time, but often the few days just before my period they all return as a group with a vengeance for a few days and then abate. The acid reflux is no longer responding to the Nexium during these bouts. The dry mouth is quite mild even when it occurs. I do not have fatigue or muscle aching.

The doctors say if I have it it is too mild to treat and may just stay that way. They also say it is likely, but they cannot make a diagnosis at this time.
What do you think?

[NYer]

Ruby,

I can't speak to the Sjogren's issue, but I can speak expertly to you on the acid reflux issue.

I don't think the dry mouth and dry eyes are from the reflux, Ruby...
Nexium and the other PPI's suck for those of us with dry eye. They all exacerbated my dry eye horribly and I also got extreme dry mouth, which I don't normally have. As soon as I stopped those, the dry mouth went away and the dry eyes went back to my normal state of lousy instead of horrible.

I had a terrible time from the reflux for the past 4 months. And it was worse because the doctors were clueless as to what to do since I couldn't take PPI's or H2 blockers (like Zantac). So I got worse symptoms (including bronchial problems).

I finally went to see a Naturopath. I'm feeling dramatically better based on her treatment. So I want to tell you what I've been doing and you can give it a try if you want to. I hope it helps you.

The Naturopath has done acupuncture on me once a week for the past three weeks.

In addition, she had me do the following (which I'm still doing):
I chew two DGL Licorice tablets 20 minutes before each meal and at bedtime. (very soothing to digestive tract and supposed to help build up mucous layer)
Before breakfast and dinner, I drink a tablespoon of black raspberry powder mixed with water. (very good for esophagus, supposedly helps reverse Barrets). It's a little hard to find the black raspberry powder but it's actually really tasty.

I take 3 digestive enzymes after each meal. (I take "AbsorbAid")
After that, I take 1/4 teaspoon of powdered calcium mixed in yogurt or applesauce in a spoon. (powdered Calcium Citrate absorbs faster than a tablet and the idea is that it help close your lower esophageal sphincter - tablets won't do that because they're much further along in your digestive tract by the time they dissolve).
If I feel some heartburn, I open two capsules of digestive enzymes and put them in room temperature water and drink it.
I attribute a lot of my improvement to the digestive enzymes.

Just before bedtime, I chew two Gaviscon Extra Strength tablets with water. (do not eat or drink after taking the Gaviscon with water- it will not work the way it's designed to.) I don't find Gaviscon to be helpful at other times but it blocks reflux at night for me.

You can pick all that stuff up at a health food store - except Gaviscon, which is at any drug store. And none of it is expensive.

After doing this for a week, my symptoms improved ALOT and after 2-1/2 weeks and MY SYMPTOMS IMPROVED DRAMATICALLY.

And it's all good for you.

By the way, make sure you're sleeping with your head and upper chest very elevated above your tummy, so you don't reflux into your throat at night.

Good luck - I hope you feel better. I lost a lot of weight in the past 4 months from not being able to eat and feeling horrible. I'm back to eating 3 meals a day and very happy about it!

[rubyslippers]

Your information is very helpful. I am going to try as much of what you mentioned as I can. The Nexium is just not doing the trick any more and I developed esophageal spasm and LPR (reflux up into the voice box). I am worried. My grandma had to have most of her esophagus removed due to acid reflux. Several of us have it. I am the only one who is of normal weight though. The others found relief by losing weight but I don't need to do that (well, maybe 5 pounds). I do use the Gaviscon a lot too and drink Maalox all the time.

I do have my head up about 8 inches. My husband put some sort of jacks under there. I also do not eat within 2 hours of bed. I am not eating so many things that I miss (no citrus, chocolate, caffeine, carbonation, spicy, acidic foods). No matter what I eat though, an hour after eating and I am hoarse.

I think stress brought this on and am also working on learning meditation.

Your post was quite helpful and just what I am looking for. I find the drugs to cause more problems than they fix. I wonder if I should stay on the Nexium while I introduce this new stuff?

[sandberg4]

Hi,
I don't really know if it would be helpful but have you ever heard of a product called Prelief? It takes the acid out of food before you eat it.
I have IC (a bladder disease) where I can't eat acidic foods and it really
does work.
Just a suggestion.
Anne

[NYer]

Healthy, Natural Help for Reflux

Ruby,

Get off of the Nexium. THAT is what's causing your dry eyes and mouth. If you already had dry eyes prior to taking it, it'll take a few days and your eyes will be back to their former dry state but not like they were on Nexium.
Reflux is not necessarily ACID reflux. You can also be refluxing bile or pepsin or other stuff. Nexium is only designed to stop ACID production.
In addition, you may have LOW acid production rather than too much acid production, so stopping the acid won't help anything. You can still reflux when you have low acid.

Reflux is caused by the LES (lower esophageal sphincter) staying open when it should close. It can be too relaxed or it can just remain open all the time in some people. That allows contents in the stomach to splash up into the esophagus.

If you don't have enough acid in your stomach, or for some other reason you don't digest food fast enough, the food sits in your stomach and has too much opportunity to splash back into your esophagus.
If you don't have enough acid, then you also don't have enough digestive enzymes. Taking over-the-counter natural digestive enzymes helps your system digest the way it's supposed to and speeds up the process of emptying your tummy. That way, you don't feel so bloated after meals and also, you will start absorbing nutrients the way you're supposed to. This worked astoundingly well for me. And what you don't use, your boddy just gets rid of.

In the meantime, the DGL coats and protects your esophagus and tummy while it heals AND it helps aid in the healing process. If you don't like the flavor of black licorice, it takes getting used to the taste. I recommend Enzymatic Therapy "GastroSoothe". It's sugar free and tastes much better than their same product, simply called "DGL" that has sugar in it. I'm not a black licorice fan but I've gotten used to it. DGL is the safer version of black licorice root (straight black licorice root can affect your blood pressure).
The black raspberry powder will be really good for you, Ruby, in particular. It is really good for your throat and esophagus. It's hard to find, though. There is a company called Nutri-Fruit that makes a nice one and you can mail order from them if you can't find it locally.

Here is a link to a really good explanation of this stuff. An excellent doctor explains what and why. An easy read and worth reading:

http://www.msnbc.msn.com/id/19352872/

Finally, even though you have your bed elevated by 8 inches, I didn't find that to be enough. I'm sleeping up higher than that. Pick up a wedge at Bed Bath and Beyond or someplace like that. In your case, you have so much bothering your upper esophagus and larynx, that you really need to fight gravity and get up higher.

Here is a link to a site, very similar to this one but for feflux and heartburn issues, where people post stuff and are very helpful, like here at DEZ.
www.heartburn-help.com

Get off of the PPI's. Your eyes and mouth will thank you.

If I can help just one other person with this info, I'll be very happy. I want to "pay it forward". I hope you feel better soon.

-NYer

[NYer]

Sandberg,
Thank you for that post about Prelief - a friend of mine recommended it and I bought it but haven't used it yet (since I don't eat anything acidy anymore) but it's good to know that it works well. And it's just made of healthy stuff, too.

[kimby2007]

Sjogrens

As someone with Sjogrens I can tell you that my dry eyes/dry mouth don't come and go. Unfortunately, they are constant. However, just because you don't have positive bloodwork doesn't mean that you don't have Sjogrens. But based on what I have read seems very doubtful to me.

[rubyslippers]

Wow! I feel like I hit the jackpot NYer with your info. I just went out and purchased the DGL Licorice, the calcium citrate powder, the digestive enzymes. I ordered the Black Raspberry Powder last night after reading your post--the very one you mention here coincidentally. I am going to titrate down off the Nexium. I tried to get off it a few weeks ago and I literally was horribly miserable. I am going to have to do it slowly. As soon as I tried to go off I started to have esophageal spasms horribly (I was hospitalized 2 years ago with it when they thought I was having a heart attack).

What rings true here for me is that my whole digestion is out of wack. Have had irritable bowel off and on too. I have had the whole work up, colonoscopy, endoscopy, etc. Nothing they do works for the long term and the drugs have so many nasty side effects that I have to get off them. I am keeping a list of which foods set me off and which do not. As this point the first list is a whole lot longer than the second. Also, the more Mylanta I take the worse this all gets. Vicious circle.

I feel that you are helping me get on the right track.

By the way, I love anything licorice flavored so that part will be a breeze. In fact I just bought a small pouch of Panda Black Licorice. I have very low blood pressure so will probably be fine with that.

I cannot thank you enough for giving me some hope here. I really believe that stress has caused everything to get out of kilter. I am also reading "Full Catastrophe Living" by Kabat-Zinn and am finding that the mindful meditation taught there is useful too.

I strongly believe that there is a mind-body connection here for me. I had 3 very, very intense years with deaths, lost my hearing, 2 immediate family members diagnosed with neurological diseases, etc. Not to mention I have a job that I love but is very stressful.

I got back to running a couple of weeks ago and that helps immensely too. Thank you SO much for your help here.

Where do you get Prelief? Also are there foods I should be avoiding besides the list the doctor gave me (coffee, orange juice, tomatoes, chocolate, alcohol, etc? I find that applesauce of all things, actually makes my stomach feel better.

[rubyslippers]

Thanks, kcoffiner. I was told that by another person too. I can have days with no symptoms at all and other days that are horrible. I do not have fatigue or dry skin or some of the other things on the Sjogrens' list---just the dry eye part of the time, dry mouth from time to time but infrequent, and the stomach problems a lot of the time. I am going to get myself off that Nexium.

[calli66]

NYer-

I found your post REALLY helpful---all those ideas and things to take for stomach/digestion problems. I not sure if I have reflux---I'm a bit unsure what the symptoms are, so maybe I DO get it occasionally.

I wish you had a blog and could post the info there, so I can find it again. I read all these good things, and then forget where they are! I am so sensitive to the "wrong food at the wrong time," and suffer from bloating/slow stomach-emptying. Years ago I tried some enzymes, but I wasn't serious about it---so you've motivated me to try again.

Ruby Slippers---I have Sjogren's and I agree with kcoffiner that the dry eyes, especially, never go away---they just exist in various states of "under control" or not. While it's possible you have it with negative bloodwork, you'd likely have more constant and obvious symptoms for it.

Calli

[NYer]

Hey Ruby!

You are very welcome!
I felt really good just now reading your post - I am so disgusted with all of the MD doctors who didn't help me and were blaming my symptoms on me being "neurotic". I finally found, both, a Naturopathic doctor and an actual ENT who is an MD (Harvard trained) who took the route of holistic medicine and has been very helpful with all of this. I feel like they saved my life, more or less. I was having such a horrible time of it with the reflux for the past four months.
So I am really happy to help someone else out of the sludge and into the sunlight if I can!!

Regarding Nexium withdrawal, you are right to do it slowly. A lot of people get bad rebound problems when they go off of PPI's. Sounds like you're one of them. But you can certainly do all of the other stuff at the same time while you're withdrawing and it'll most likely help relieve a lot of the rebound problems, too.

Do check out that heartburn-help site that I mentioned. Lots of people talk about PPI withdrawal.

I found Prelief on Drugstore.com. It's cheap, something like $6.99. I'm pretty sure they also had it on Amazon.

Funny that you mentioned that book "Full Catastrophe Living". I just bought that, too! I haven't read it yet. Someone on this site had recommended it and it sounded appropriate for me. I've been taking Yoga for the past month with the intention of learning how to do relaxing breathing and meditation. I'm careful not to do a lot of the poses because I don't want to lay flat on my back nor do I want to lean forward and set off reflux. But one of the big problems I've had has been wheezing and shortness of breath (and sinus problems) all stemming from the reflux. So I thought it would be a good idea to be able to control my breathing the right way when I need to and, certainly, to be able to relax with meditation.

I'm so sorry to hear about what you've been through. Yeah, I'd say those things individually were enough to set off stress-induced heartburn, let alone having all those things happen at once. Meditation would probably be really good for you. I'm speaking in assumptions, of course, at this point. I am no expert yet - nor even a qualified beginner! But I do feel good after I do the yoga so far.

By the way, I'm still doing the acupuncture, too. I think it's helping. You may want to consider that, too. And I think the way to go is to have a Naturopath who is also qualified in acupuncture do it. You can try to find a naturopath in your area at this site: www.naturopath.org
Not all of them do acupuncture, but many do.

If you like black licorice, you're golden with this stuff ...LOL! Apparently, you can't take too much of the DGL. And make sure you get the chewable, so it starts working before it even hits your esophagus. The capsules, obviously, don't open till they hit your stomach.

By the way, I had some heartburn yesterday and today for the first time in 3 weeks. Don't know why, but it's not nearly as bad as what I was getting before. And I just keep chewing the DGL's and taking some extra digestive enzymes. So it's not perfection but it's still much much better than it was.

Oh, and let's see, regarding what to avoid...Alcohol, coffee (regular AND decaf), tea (you can have chamomile if you're OK with chamomile), tobacco, citrus, cigarettes, onions, peppers, black pepper, garlic, tomatoes, hot sauce (haha, like you'd do that anyway), carbonated beverages. Avoid ice in your drinks. Don't drink or eat anything very cold. I'm told many people have issues with ice cream. Some people with esophageal spasms have said that it's helpful to drink warm water before starting a meal. One guy on that site said that smoking pot was very helpful, but frankly, that would make you hungry and who knows what you'd eat then? LOL
Oh, don't eat chocolate or peppermint. They both relax your lower esophageal sphincter and that will allow reflux to start.
Don't eat fried foods or anything very greasy. If you cook with oil, stick to olive oil. I eat lots of fish and chicken - no red meat. But that's must me.
There is a guy who swears by very low carbs and many people on that site seem to agree with it. I don't. I do low carbs because I have type-2 diabetes and that keeps it under control...but it doesn't do squat for my reflux. But you should stay away from sugary foods.

Whew. What's left? I eat lots of veggies and fruit and whole grain stuff.


Well, I really hope you have great success with this and I'm really glad to hear that you are giving it all a shot.
All best wishes to you,
NYer

[rubyslippers]

Yes, I have the shortness of breath too. I am just miserable enough to consider the pot, but with my hoarseness the thought of the strong burning smoke keeps me from going out to find a deal, LOL--that and working in the justice system will probably keep me in line. My husband put some little jacks under the bed and I am going to go raise it a bit more. I feel like I am crawling up a mountain all night though. I slide down and crawl up all night long, but I will do most anything. I will check out the site and the Prelief. When do you take the Prelief?

I got the Fizzy Calcium Citrate Powder and love it in applesauce. It gives it a real kick. The DGL Licorice, as much as I like licorice, is a bit intense. I have started having some nausea so will have to time that not to set that off.

I am going to check out acupuncture and a naturpath too. The scariest part is going to be getting off the Nexium. When I got off Prilosec last year the rebound was horrible and I think this might be worse. In a few days, after I get all these other things in my system, I will try going from 40 to 20 mg. and see how that goes. Also my GERD is much worse just before my period and I am past that now so this is a good time to move forward.

Do you ever feel like eating standing up? I am not overweight at all, but just bending while eating (normal sitting position) does not feel right.

I just discovered that eating really cold stuff sets off my wheezing. Wont' be doing that again. I have not liked cold drinks for several years and prefer lukewarm liquids. Must have been kind of subconscious that it bothers me. Fortunately I don't drink or smoke and have never been a coffee drinker, nor do I like spicy foods at all. Pinneapple will nearly kill me or orange juice. Just the thought is horrible. I cannot eat much ketchup or tomato sauce. I love onions, but haven't been having them for about 6 months.

I have also figured out NOT to eat within a couple hours of bed and to eat right when I get up so I don't get the gnawing feeling.

I wonder if there are any foods that are positive and helpful?

You are helping me so much!! Chewing one of those DGL's as I type here. Not nasty but intense!

(I am adding a note here because I discovered that I can manage the DGL's much better by just sucking on them like a lozenge. Did some reading and found that the more saliva that mixes with them, the better anyway).

[NYer]

Hi Ruby,
Prelief is actually for de-acidifying food. Supposedly, it works on the acid in the food you're eating...not on your stomach acid. So you take it any time you are eating something that might be acidic. Since I don't eat any food like that, I hadn't taken it till last night. Since I had heartburn, I figured I'd give it a shot and see if it helped but it didn't. But it really isn't designed for that anyway.

I gave up on trying to raise the head of the bed. We had it up 8 inches and my fiance was very unhappy. We kept waking up half-way down the bed with our feet hanging off the bottom! So now I just use a big (10") wedge pillow. It starts elevating you at around your butt and the lift is gradual so your head is elevated. (If you just used pillows to do that, all it would do is bend your neck and that's not good.) I'd really like to get an adjustable bed but then I'd have to elevate him, too, and that's not fair (he sleeps on his side) (that's my preference, too, but it's not an option right now. )
Alternatively, you could get two twin adjustable beds together and and adjust to your heart's (or esophagus's) content...but my apartment is too small to fit two twins (which equals one king size). sighhhhhhhh.

One thing about the fizzy calcium powder...if it's fizzy, it probably has some sort of acidic quality to it so be careful. Ironically, the best type of calcium you are supposed to use, they say, is Calcium Citrate. But I just got the stuff made by "Now". It's cheap. The pain is measuring out 1/4 teaspoon-ful after every meal. I made little tiny envelopes of pre-measured powder and put them in my purse for when I eat out. I either take it with yogurt or applesauce or simply pour it onto a spoon, pour a little water on it to cover it, and eat it off the spoon in one slurp. Then wash it down with water. It works a lot better than pouring it into a glass of water and trying to drink it. It just doesn't work that way because it doesn't dissolve.

Yes, not eating for 3 hours before laying down is an important one. I think I forgot to tell you that.

Today, I have bad shortness of breath. Clearly, that is due to the fact that I had heartburn most of the day and most of the night last night. And I still don't know why. So many of the idiot doctors assume that the shortness of breath is from anxiety. It is NOT from anxiety. It is from the irritation in your esophagus triggering the vagal nerve which sets off various types of bronchial reactions, including shortness of breath, wheezing, asthma, and sinus issues. I had a number of idiot doctors who poo-poo'd it and blamed psychological issues (that I don't have) and the same thing happened to tons of people who posted on that heartburn site. When I went to an allergist, who also deals with asthma (which I never had), he said, "Oh, yeah, the wheezing and breathing issues are definately from GED. Half of my patients who have asthma also have GERD and vice versa!!!!!!!!!!!!!!" So that confirmed it for me.

I hope we both have a better day today. I'm so glad to be able to help you.

-NYer

[rubyslippers]

Yes, the calcium citrate fizzes when I mix it into the applesauces and it gives it a kick, but it is SO soothing to my stomach the instant I take it that I take it between meals too (called the doctor and he said it is fine to take more than recommended). It makes me burp once and my heartburn literally instantly goes away.

I got the head of the bed up 12 inches and slept fine. My husband has Parkinson's and he says the elevation seems to help him for some unknown reason, but yes, we do have to crawl up during the night and sometimes get the giggles over it. One nice thing--no more cold feet for me. Must be the circulation is better that way.

I may check into Prelief. Sounds like an option. When traveling I find it difficult to avoid the bad stuff.

Yes, my hoarseness, coughing, and sinus issues are all directly related to my GERD. I have found the Neti Pot to rinse my sinuses to all but cure that part of the problem too.

[NYer]

Very cool about the Calcium Citrate...what kind is it? I'll try it!