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Acid Reflux / GERD Message Board
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Old 07-13-2008, 04:51 PM   #1
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Early Lupus/Scleroderma and LPR - Hypersensitive Esophagus?

I've been undergoing diagnosis process of possible early lupus and/or scleroderma. Symptoms are transient malar pinkness, constant mild acid reflux (started December 07) and transient generalized adenopathy.

Doc has done barium swallow (normal) and endoscopy (normal exam and esophagus and stomach biopsies normal) but did show some inflammation. I had an allergy-related sore throat the day of the exam, so not sure inflammation was reflux related or cold related.

Gastro doc recommends now that I follow a strict anti-reflux diet. I have tried that in the past, but I have reflux after everything (except fluids), so even an apple causes reflux. Heavy garlic and/or spice do make the reflux worse, but nothing reduces the symptoms. I've been on one Aciphex (20 mg) a day, and it does help, but does not fully alleviate the symptoms.

Because acidic beverages (including caffeinated and carbonated) actually alleviate the symptoms, the gastro doc thinks I may have "hypersensitive esophagus". Has anyone been diagnosed with that and is there a known cause/cure? I also have had a strange dry cough that often happens briefly when I first begin eating a meal. I have read that it can be reflux related, as well.

Gastro doc does not recommend doing the Nissan procedure due to my mild symptoms and the fact that we do not know the root cause of the acid reflux.

Any ideas on diagnosis or treatment would be greatly appreciated!
Eat Well and Stay Well--

Any other ideas?

 
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Old 07-14-2008, 08:34 AM   #2
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Re: Early Lupus/Scleroderma and LPR - Hypersensitive Esophagus?

I've only been diagnosed with the LPR/GERD (as of now) but I swear I also notice when I drink a coke on ice that I lose the mucus in my throat and sinus feeling! When my sinus feel like it's going to explode it helps me to eat something and that feeling goes away. Of course, they all come back. There are days I can suck on a peice of hard candy or drink water and my digestive system act up. Is that weird or what? ENT keep saying LPR but Nexium twice a day or more doesn't do me a lot of good. I treat both LPR and allergy. It's so frustrating. Most Dr's I've seen do not recommend the surgery or I would have already taken that road.

Good luck and let us know what your Dr's report.

CharBerry

 
Old 07-18-2008, 12:42 AM   #3
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Re: Early Lupus/Scleroderma and LPR - Hypersensitive Esophagus?

Hi, CharBerry--
Thanks for taking the time to reply. I appreciate your insight. I am only on one 20 mg Aciphex once a day, and it really doesn't take care of all the reflux I have. I actually had one "good" day last week, and I was kind of sad because it reminded of me of how my life used to be, before this condition changed it. Nothing I ate caused the reflux. But the next day, it was "business as usual".

I feel in my gut that what I have must be tied in to the potential autoimmune condition I may develop one day. It's interesting that a Coke can resolve your symptoms, too...even though it is caffeinated and also carbonated! But for me, the same is true, acidic drinks (except some teas) usually take care of the acid after eating meals or snacks. I had some watermelon tonight, and it caused reflux. My cereal this morning caused it. Just had some cherries and they caused it. Truly everything I eat comes back up. I saw my endoscopy and it said that I have "chronic gastritis" and something else. Oh, well. More things to research. Hope you are feeling well--

 
Old 07-20-2008, 12:14 PM   #4
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Re: Early Lupus/Scleroderma and LPR - Hypersensitive Esophagus?

I have scleroderma which has effected my larynx and left me hardly able to speak, but I also have a strange kind of reflux. I don't get the regular heartburn or reflux like burning acid coming back up, what I get is if I eat anything I have no burning or acid but if I lean forward to pick something up all of the food I ate within six hours just slides back up into my mouth all chewed up, but no acid and no "barfing", it just appears when I lean over. My dr. said that's scleraderma that it effected my valve or something. I also have lupus, I've had lupus for 15 years and was just also diagnosed with scleroderma about a year ago. There are specific blood tests for the scleraderma titre, you should ask your dr. to order them.

Good luck with the reflux, I did have that years ago when I had an ulcer, but not since. I only drink water, and I've heard you get it from caffeine, chocolate and nuts, so I am allergic to nuts and avoid the others due to migraines, you might try that and see if it helps.

 
Old 07-20-2008, 10:53 PM   #5
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Re: Early Lupus/Scleroderma and LPR - Hypersensitive Esophagus?

Thanks for your reply.
That's interesting about your reflux situation. I guess the doctors feel that you have MCTD or an overlap syndrome with both lupus and scleraderma? If you don't mind my asking, has your scleraderma impacted your skin with tightness? I haven't heard much about people who get scleraderma and start out with gastro problems. I know everyone's different. I have been tested for the SCL 70 and the anti-centromere marker. I was negative on those. But I do have the nucleolar pattern in a high titer. Both specialists I've seen have said that it is possible to have lupus with that pattern. But most everything I read online says it is most tied to scleraderma. I hope your scleraderma is not of the most serious type. This situation is pretty upsetting overall. I try not to let it get the best of me.

Take Care--

 
Old 07-21-2008, 07:03 PM   #6
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Re: Early Lupus/Scleroderma and LPR - Hypersensitive Esophagus?

I've just had a ton of blood tests for pre scleroderma too. The Rheumatologist says I don't have scleroderma yet and may never get it as there are no skin changes but with the reflux and all there's definitely a risk. The tests show the centromere pattern and high titer. I've had reflux for over a year and recently Raynaud's. Like you there's no particular food that causes reflux for me which makes sense if its the connective tissue problems at the root of it. I agree with you its all quite scary but very important to stay positive. I find that when I'm not stressed I can go through periods of feeling very well. Good luck and take care.

It would be helpful if this site had a board for scleroderma.

 
Old 07-22-2008, 12:44 AM   #7
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Re: Early Lupus/Scleroderma and LPR - Hypersensitive Esophagus?

Hello, JoJo--
I agree that it would be great if there were a scleroderma board. I wonder how one could get that started. Hmmm, I need to research that.

I think I read that a centromere pattern is associated most often with scleroderma, but with the milder form. I also read that it's true that just because you have the marker doesn't mean you will develop the disease. And even if you have Raynauld's, you may never develop the skinlike changes of scleroderma. Trying to think positive! Your positive words hit home with me. I get so worried at times that it's difficult to think positively, which is why I try to exercise most days.

Did your reflux symptoms start suddenly? Mine started over the course of two weeks. At first, it was just after taking multivitamins. Then within a few days, it was after everything I ate. Do fluids help alleviate your reflux symptoms? As long as I can drink something after/with food, I'm fine. But if I have even a single bite of food without something to wash it down, the reflux hits.

I hope you are able to remain stress and mostly symptom free the rest of the summer!

 
Old 07-22-2008, 08:43 PM   #8
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Re: Early Lupus/Scleroderma and LPR - Hypersensitive Esophagus?

I'm glad fluids help control your reflux - at least you can do something for it. Fluids don't seem to make much difference for me. I can have it at pretty much any time and then I can go for a while without reflux at all for no apparent reason. My reflux symptoms are basically a soreness in my throat and sometimes a sort of burning sensation. I'm on Prilosec and I have been taking some alternative meds from my naturopath which seem to have helped. One weird thing - I find it gets worse if I touch my throat or neck!

It did come on quite suddenly though for a while I didn't realize it was reflux as I had never had it before. I thought I had a throat infection or something.

It is hard to stay positive if you think about the condition too much. I think you are definitely on the right track with your exercise. Everything I've read says that that is a big help. There's a lot of healing power in exercise plus its a good mental relaxer. Have you tried yoga? I find it helps me a lot although I avoid some of the stretches where I'm bent double!

 
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