Here's yet another great question from another awesome reader:
I wanted to ask you about your gastro symptoms specifically, as I've seen you make reference to it. I've never had any problems with GERD or gastritis until these other symptoms intensified (dry mouth and eyes have become much, much worse), along with intense anxiety, fatigue, irritability and just feeling sooo crappy.
Now I have GERD almost constantly, with some brief periods of relief. My rheumatologist said, "Oh, that's nothing to do with your disease. See a gastro." And I'm like... what?? It's my main, most debilitating symptom. All gastro docs seem to know nothing of Sjogren's, don't care to listen, and prescribe protonix. I tried protonix for 2.5 years, they just kept upping the dosage and yet I kept getting worse. I finally just stopped them completely and my symptoms have gotten soooo much better but it's still so uncomfortable, and at times debilitating. I also deal with chronic constipation, which hasn't been a problem until recently as well. (Now that you know my pooping habits, we're friends, right? XD)
First off, yes.
Anyone who feels comfortable sharing their pooping habits with me is immediately one of my closest friends. Absolutely.
So on to your questions about Sjogren's syndrome and it's gastrointestinal effects........
Again, yes.
There is no question that Sjogren's syndrome can and does affect the entire GI tract in multiple ways. For me, personally, I have noticed some issues with gastro esophogeal reflux disease (GERD) and take omiprozole which helps considerably. I have also noticed a slow-down in the motility of my colon, and I have developed some food intolerances since my diagnosis.
However, there's so much more that can be affected. This online book written by Dr. Joop D van de Merwe entitled Sjogren's Syndrome: Information for Patients and Professionals, is a very thorough discussion of all things Sjogren's. The book is twenty one lengthy chapters and is a very large file if downloaded. The terminology and explanations are geared toward health care providers, but for those with a reasonable understanding of the immune system and anatomy, it is a very informative read and was updated as recently as April 2012.
Of particular interest is Chapter Nine - Gastrointestinal Disorders, found here. Dr. Joop P van de Merwe describes the many, many ways that Sjs can change the GI tract. Here are just a few of his comments:
Difficulty in swallowing
Difficulty in swallowing food can have a variety of causes in Sjögren's syndrome. One obvious cause is dryness of the mouth and throat. In addition, the function of the oesophagus may also be impaired, not only due to dry mucous membranes but also to disorders in the pattern of contractions in the oesophagus. The cause of this may lie in the muscles themselves or in the nerve fibres that "control" the muscles.
Chronic atrophic gastritis
Chronic atrophic gastritis is the medical term for chronic inflammation of the gastric mucosa (lining of the stomach), resulting in a gradual deterioration of the structure and function of the mucosa. This can lead for example to a reduction in the production of gastric acid. This form of inflammation of the gastric mucosa also exists as a separate medical condition, but occurs more commonly in Sjögren's syndrome patients (maybe as many as 50%) than in the remainder of the gastric mucosa. However, this generally concerns a mild form without detrimental consequences.2,6,7
Gastric ulcer
A gastric ulcer, with or without bleeding, in Sjögren's syndrome is mainly the consequence of using older types of NSAIDs. This occurs less frequently with the modern variant of NSAIDs, the selective COX-2 inhibitors (coxibs) or the combined use of NSAIDs with proton-pump inhibitors such as omeprazol. NSAIDs are discussed in chapter 5.
Functional dyspepsia
Functional dyspepsia (FD) is defined as the presence of symptoms thought to originate in the gastroduodenal region, in the absence of organic, systemic, or metabolic disease that is likely to explain the symptoms.31
Typical dyspeptic symptoms are epigastric pain, early satiety, postprandial fullness and epigastric burning. Bloating, belching, nausea, and vomiting may also occur but are less typical.
It is extremely important to realize that dyspeptic symptoms may be due to underlying peptic ulcer disease and gastroesophageal reflux disease (GERD).
Impaired gastric emptying and gastroparesis
Impaired gastric emptying (IGE) and gastroparesis are defined on the basis of the time from the ingestion of a bolus of food until 50% of the bolus has been cleared from the stomach and/or the bolus is beginning to be cleared from the stomach. Gastroparesis is the more severe variant of impaired gastric emptying.
The chapter goes on for considerable length, so head over to read it all.
I wanted to point out one item in this list which I have not discussed before but is interesting and may be important to the reader, which is atrophic gastritis.
Atrophic gastritis is described this way in The new Sjogren's Syndrome Handbook Edited by Daniel J. Wallace, MD, pg. 73:
.....a proportion of patients with Sjogren's have reduced acid secretion by the stomach. This is a result of long-standing inflammation that destroys the cells that produce acid (chronic atrophic gastritis), an immune process similar to the one that destroys the salivary glands. Atrophic gastritis can cause indigestion (dyspepsia) and pain over the upper part of the abdomen. Diagnosis is made by endoscopy.........A biopsy is often taken to confirm the diagnosis.
In other words, among the many potential GI issues in Sjogren's, two are almost opposite in cause: chronic atrophic gastritis, which causes damage to the mucosa of the stomach due to decreased production of normal stomach acids; and GERD (gastro esophageal reflux disease): the presence of gastric acid -- in all the wrong places. GERD is explained by the Sjogren's Syndrome Foundation in another of their excellent fact sheets here:
While the exact reasons are unknown, may patients with Sjogren's suffer from gastro esophageal reflux disease. (GERD). This can cause a wide variety of symptoms that can be mistaken for other conditions. Symptoms may include persistent heartburn and/or regurgitation of acid, stomach pain, hoarseness or voice change, throat pain, sore throat, difficulty swallowing, sensation of having a lump in the throat, frequent throat clearing and chronic cough (especially at night time or upon awakening).
The reader may want to ask their physician a few other questions regarding her GI symptoms, such as, Why did my GERD symptoms get better after stopping protonix (which decreases the acid production in the stomach)? Is it possible that my problem isn't actually GERD, but rather something else?
Of course, I'm not a doctor and I don't even play one on TV. And I certainly would never play doctor here on Reasonably Well. But the reader may have a good reason to have a new discussion with his/her doctor in exploring options to calm that GI system down.
12 comments:
my earliest issues were GI related to be sure. I was diagnosed with gastroparesis and IBS before any notable ( to me anyway!) eye or mouth dryness .
I have not taken any allopathic (mainstream) treatments for these but have found great relief from:
identifying foods that trigger issues and eliminating them,( for me this is gluten, casein,soy,too much fruit,chocolate,caffeine)taking hydro-chloric acid supplementation, not eating to close to bed time, and taking at LEAST 600mg daily of magnesium to keep things " running smooth". I can't take any form of NSAID's, haven't for at least 15 years now, the stomach pain after just one aspirin leaves me sweating profusely and writhing on the floor.
It works for pain alright- I tend to forget whatever pain it was that I took it for very fast indeed!
Today's topic couldn't have come at a more opportune time ... just about everything I put in my mouth seems to exacerbate GI symptoms; swallowing has been an issue for a long while. (Not to label myself a Redneck Girl, but I nearly choked to death on pork rinds. Serves me right!) Minimal food intake has ='d hypoglycemia and way too much weight loss. NSAID's are no longer an option so my joint & muscle pain are uncontrolled. In addition, chemical & drug sensitivities are off the charts (xylitol, sugar, epinephrine, etc)
Anyone else experience this?
Thanks for the reference Julia - intend to print pertinent chapters & read w/yellow highlighter in hand!
I was diagnosed with GERD in 1979, haven't been able to take NSAIDs for 5 years, stopped taking Protonix 2 years ago when it stopped working, was diagnosed with Sjogren's recently after many years of trying to figure out what was causing all of the symptoms, I've described my heartburn/reflux as "burning all the way up to my eyeballs" & think it took so long to get the Sjogren's diagnosis because I don't have what I'd describe as "dry mouth" or "dry eyes", because I seem to have enough saliva & tears, but for years I've described my symptoms as "burning mouth, throat, eyes, skin" & I still feel like I've got acid oozing from every moisture producing gland in my body...it's definitely worse when I'm having a flare & my rashes will start itching immediately when I'm experiencing the slightest bit of stress & will spread if it's more than a little. I've never gotten a good solid diagnosis when it comes to the rashes..I've had 5 or 6 biopses done & the only thing we know is what I don't have, meaning it's nothing contagious...anyway, I know that the gastric symptoms & Sjogren's go hand in hand & also feel like if I were a pool, I'd know how to treat myself...I'd give myself a large dose of "Ph up", & would test myself on a weekly basis...maybe this is the wave of the future for us...wouldn't it be great if there were places we could go & bring "samples" to whenever there was a problem & they'd do a free analysis & let you know what "chemical" to use to correct it, or even better, have a "pool guy" come to our houses once a month to take care of us (I don't think my husband would go for that one!) & I'm certain whoever started this franchise would end up being a billionaire within a year! Thanks again Julia for sharing this info. in such an enjoyable way...I like your blog better than any magazine or anything on tv...my vote is for you to be the next American Idol in the blogosphere! (seriously, is there anything like that? because I'd vote for you if I could)
Today's topic couldn't have come at a more opportune time ... just about everything I put in my mouth seems to exacerbate GI symptoms; swallowing has been an issue for a long while. (Not to label myself a Redneck Girl, but I nearly choked to death on pork rinds. Serves me right!) Minimal food intake has ='d hypoglycemia and way too much weight loss. NSAID's are no longer an option so my joint & muscle pain are uncontrolled. In addition, chemical & drug sensitivities are off the charts (xylitol, sugar, epinephrine, etc)
Anyone else experience this?
Thanks for the reference Julia - intend to print pertinent chapters & read w/yellow highlighter in hand!
Before I was diagnosed with Sjogren's, I was diagnosed with Barrett's esophagus (through endoscopy), due to years of acid reflux. All of this came as a surprise, because I just thought I had mild indigestion, and treated it with TUMS! Anyways, I now must have an endoscopy every 2 years from now on, as Barrett's is a pre-cancerous condition in the esophagus...I'm thinking it must be related to Sjogren's somehow..have you ever seen anything, anywhere regarding the link between the two, Julia? Thanks again for all you do for us!
Like you Miss Julia... I have Sjogren's and I have GERD and I am on Omeprazole. I experience the hoarseness talked about (3rd paragraph from the bottom) my Ear, Nose & Throat doctor is the one that made the connection... I thought I was having allergy/asthma voice hoarseness issues... he was right I was wrong.
ToOdLeS.
I've had increasingly severe gastritis and esophagitis for about four years. Here's an idea, that not one doctor has ever suggested: saliva neutralizes stomach acid, and when you don't have enough saliva, it eats away at your stomach lining! My endoscopy showed extreme irritation, but it was not "atrophic". Both rheumys and gastros just give me a "deer in the headlights" look when I suggest this, but neither do they argue against it. Do you have any thoughts on this? I also find the side effects of PPI's intolerable :(
I may be "a day late and a dollar short" leaving my comment but, I've just found this blog. Gastro symptoms kill me and I've been plagued for over 15 years. I''m hoping to find some support here. Thank you, Julia, for this blog. I've just been diagnosed. It's overwhelming...
I thought I had bronchitis recently so went to doctoR who treated me for bronchial spasms. The coughing never stopped no matter what meds or remedies I tried that she gave me ,,inhalers and such. I began to make the connection with eating or drinking even water, noticed the tickling, strangling cough that built and built. Red faced, coughing. I have been treated for GERD with the prescription omeprazole for the past month. I had h-pylori 2 yrs ago. Well Since I got this bronchial condition I stopped taking omeprazole while on all this other medicine. I too have sjogrens, diagnosed 4 years ago. Now I'm worse with a choking cough, burning eyes and constant headache. I feel like I can't swallow all the way so I keep drinking hot liquids. I don't want to go to Dr because they usually misdiagnose. If you tell them what you think it is then they really won't listen because the patient is neurotic and always thinks something is wrong. Allergy medicine does not help me!! They don't understand. Thank you for this blog.
I thought I had bronchitis recently so went to doctoR who treated me for bronchial spasms. The coughing never stopped no matter what meds or remedies I tried that she gave me ,,inhalers and such. I began to make the connection with eating or drinking even water, noticed the tickling, strangling cough that built and built. Red faced, coughing. I have been treated for GERD with the prescription omeprazole for the past month. I had h-pylori 2 yrs ago. Well Since I got this bronchial condition I stopped taking omeprazole while on all this other medicine. I too have sjogrens, diagnosed 4 years ago. Now I'm worse with a choking cough, burning eyes and constant headache. I feel like I can't swallow all the way so I keep drinking hot liquids. I don't want to go to Dr because they usually misdiagnose. If you tell them what you think it is then they really won't listen because the patient is neurotic and always thinks something is wrong. Allergy medicine does not help me!! They don't understand. Thank you for this blog.
Hello
I like to share that I was diagnosed with ulcers and gerd in 2014 , I changed my diet did not drink coffee anymore , stopped orange juice and lemon juice and spicy foods. I was led by The Lord to Kefir grains I found them on online. The kefir grains grow in milk and are a powerful probiotic. I feel normal again, my stomach was almost back to normal last August when I had another endoscopy, without any medications.
I have problems with constipation for years now. So again I was led by God to coffee enemas sept 2015.
By the way out of no where I started having dry eyes dry lips and dry mouth last year in 2/15.
I have not been diagnosed with sjorgens but I have a feeling I have it.
I'm tired a lot take a nap every afternoon. I chew gum a few times a day and use lip balm through out the day and ristases for dry eyes.
Some days i have very little dryness some days more dryness.
I use a good organic vitamin and use plant probiotics in the evening drink kefir smoothie in the morning.
Coffee enemas are amazing, they clean your liver and blood relieve pain and clear your mind.
It cleans you out and detoxes your body. I been doing them for 9 month now.
I hope this information blesses someone.❤️ Carola
I had my first bout of functional dyspepsia about 4 years ago now (although at the time I did not know what it was). I went through two MRI's, multiple blood tests, two endoscopys and saw so many 'ologists' I've lost count. I spent two weeks in hospital before being discharged with no diagnosis and the doctors telling me there was nothing they could do. After about a year the whole thing calmed down. Then just over a month ago it came back, 100 times worse than the first time. I spent another weeks in hospital here I was on IV fluids (because I couldn't drink or eat without vomiting). I had another endoscopy, CT scan, more blood tests, biopsies of my stomach etc. All results were absolutely normal and I tested negative for H.pylori. I have now been diagnosed with functional dyspepsia. As soon as I eat or drink anything my stomach throws a fit. I am currently on so many pills that I don't know what half of them do but I know that none of them are working, While I was in hospital my son found at about dr George cure to functional dyspepsia so i email him and order for his product which i use for 3 weeks, now i can tell you am so happy with my life THANKS TO DR GEORGE. You can always contact the Doctor through his email for more information. (georgeadam65@gmail.com) His herbal is the only permanent cure to functional dyspepsia
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