What causes our gastro symptoms?

[Sharon]

Since my SJS began I've lost 15 kg in weight because:
Most food gives me boating, nausea, stomach pain and various digestive issues
and I have NO APPETITE. When I do eat I feel full after a few bites.
I also developed allergic reactions to some foods.

My blood tests show positive APCA (anti parietal cell antibodies) which points to inflammation of the stomach lining.

So I had a colonoscopy and gastroscopy done and biopsies were taken.

Results: NOTHING! No signs of inflammation or anything else, not even signs of APCA! 
(I had that APCA blood test taken 4 times so I know it wasn't a "false positive")

So...what causes all these gastro issues? 
I know a high percentage of SJS sufferers deal with gastro issues,
so what is the cause and the cure?

[Judie P]

I wish I knew.  I am thinking that it has to do with neuropathy (auto?) and that everything slows down when it is elevated.  No doctor has been able to give me an answer on that.

[ohiolady]

I have autonomic neuropathy and gastroparesis.  Your symptoms sound a lot like gastroparesis.  A gastric emptying test can be done to check for this.  I feel for you because the stomach stuff is so miserable.

Anna

[Sharon]

My gastro doc actually wanted to refer me to do a gastric emptying test
but I'm so tired of all these tests already...
What can be done if it is gastroparesis?

[SjoGirl]

FYI the lining of the stomach is a moisture producing part of the body so can be affected along with other areas of the body. I too lost a lot of weight at first,I was down to 99 lbs due to lack of appetite and issues with reactions to multiple foods. I suffered from terrible reflux and also had the first stages of cancer of the stomach.

I have to take Nexium daily or can't stand the reflux. I also have found that I seem to metabolize vitamins, from food and supplements, when I am taking Nexium.

Yes, testing is tiring, but it can be worthwhile (I have been scoped at least twice and had three colonoscopies and my pre-cancerous condition has subsided). That said, depending on what your symptoms are you might ask what treatments exist and try one. Sometimes that is a way to determine what the issue might be .

[ohiolady]

I take Domperidone to help empty the stomach.   It is taken 30 minutes before you eat.  I,also, take Zofran for nausea and a PPI, Dexilant.  I use a herbal supplement Iberogast, which helps with stomach pain.  I would vomit every day without treatment and eat very little.

Hope you get some answers.

Anna

[irish]

A lot of people have the gastroparesis that is basically a neuropathy that decreases the peristalsis of the colon. It also slows the peristalsis of the esophagus which can cause the slowing of the food from the mouth to the stomach. This causes its own group of issues like the bloating, big time constipation, food loading up in the stomach and intestines which us can result in pain and also some loss of absorption of nutrients. It feels like a basketball is sitting in your stomach and makes it hard to eat also. Many issues that can occur and I know I missed most of them.

The one thing that happens to almost everyone with Sjogrens is the decrease in saliva production in the mouth which makes swallowing food more difficult. This part in the mouth is the first part of the digestion of food. The esophagus produces mucus and this is decreased and adds to the swallowing issues. Then there is the stomach which also produces mucus and this is decreased. When we eat the stomach is also called to produce acid and with less mucus and saliva the acid is not diluted and thus we feel like the lining of our stomach is being chewed and digested----it literally is. Thus we end up on the pills to decrease the amount of acid we produce. There is nothing to be done at this time that doesn't require these meds which can cause us other issues.

The small and large intestine also have decreased production of mucus and this makes it harder for the stool to slide down to be evacuated. Then we get to the pancreas and the liver. Both of these manufacture products that help in the digestion of food. We end up with more digestive and metabolic issues.

It has taken the doctors a long time to realize just how much misery we have from the Gastrointestinal issues. I have been dealing with heartburn and reflux since the early 1980's and have taken so many of the meds and currently on the Omeprazole, Tagament and Carafate.

I get my scoping done and my immunologist wants me to have the colonoscopy every 3 years as he says that autoimmune disease puts one at higher risk for cancer. I have had 2 gastroscopies in one year one time. I have pink tinged mucus membranes a lot of the time which is a small amount of inflammation on biopsy. I do have one very small area of Barretts esophagus in the lower end of my esophagus. This is just new in the past couple of years. This is tissue that has been affected by the acid long enough that the tissue has changed and the cells are needing to be watched for cancerous changes. A lot of people with GERD develop this after years of heartburn and reflux. Hope this answers some of the questions you might have.

Our stomach problems aren't in our heads!!!!Good luck. Irish

[MAT51]

I have all the same symptoms plus constipation. Because it's less acknowledged that we have these issues with SJS I have pushed to be also rule out Scleroderma. My reasoning is that we are always told that SJS is either primary or secondary where other CT diseases don't get categorised in this way -apart from Raynauds, which is not serious in primary form as it is as a secondary. So why can't we see other diseases such as Scleroderma, Lupus or RA as milder secondaries? And yet as soon as these diseases flag up SJS gets relegated to secondary when it might have been our main rheumatic disease and the cause of many of our GI symptoms?

My neurologist has acknowledged a degree of dysautonima which she calls mild Ganglionopathy. I'm not sure if she thinks this is responsible for my constipation and swallowing issues plus GERD. To my mind these could equally be explained by hardening of the GI tract and this is what mine feels like. My colonoscopy earlier this year was extremely painful and I don't think the endoscopy nurses who conducted it would be trained to spot Scleroderma,which is rare. And yet my ANA pattern points to this disease over Sjogrens so I suspect, in my case, that it's a combination of Sjogrens and Scleroderma with some SJS related autonomic issues as well.

Maybe the hardening of our GI tracts accounts for many of us with SJS having severe GI issues. Interestingly I'm feeling much healthier in the lower GI since starting Cellcept two weeks ago. Constipation has resolved!

[irish]

I am of the opinion that there is too much emphasis on whether the Sjogrens is primary or secondary. I have had Sjogrens since in the mid 1960's and not diagnosed until 2003. I also have had other autoimmune issues over the years that just didn't have a name until in 2006.

As far as I am concerned it doesn't make any difference which one of them came first. The bottom line is I have the symptoms and can feel bloody miserable from any one of the diseases at one time or another. Actually, some of these diseases are so insidious in nature that we are not even aware of them because often some other disease has front and center stage at the same time.

I had so many symptoms of Sjogrens before I had the dryness in mouth or eyes and no doctor ever picked up on any of my autoimmune issues until in 2003 long after I had doctored and spent a fortune on all these other symptoms. If I was to guess I would say that I had Hashimotos and Sjogrens early on but the symptoms of weakness and fatigue were bad enough that they took center stage. This, of course, was my myasthenia gravis that I have had for years also. Doesn't make much difference what comes first, what matters is how the doctors treat your symptoms. Irish

[daisymay]

I had a Dr tell me that, before the invention of all of the fancy tests they have now, the original Dr who recognized sjogrens said that to have sjogrens you only had to have dry eyes, dry mouth, and joint issues to be diagnosed. It's only been in the modern era that diagnosing and classifying sjogrens has gotten so complicated.

[bluegardenia]

i know that u know better than me whats going on. im in this nightmare just since 4 years and was lucky enough to have a nice lips biopsy( that I insisted to do after few months with dry mouth) positive so  i did not have to wonder around for a long time.
BUT i just wanted to say that  milions of people without sjogren have reflux, milions have difficulty in swallowing, have acidity or things that get stuck in their throat and all the disconfort that come with this . i dont have a friend who never took an antiacid for  a long time. so , just to be hopeful,  may be its not said that everybody with sjs could develop miastenia or gastroparesis or their symptoms are related  to these deseases. may be yes but also may be no.

[MAT51]

I couldn't agree more with Irish re primary or secondary - although the literature often states it's important because those with primary SJS are more at risk from Lymphoma. Perhaps this is a myth though and all with SJS are equally at risk?  And of course those with secondary are at an advantage in the sense that they do at least qualify for proper treatment where those who only have Sjogrens don't - or not in the UK at least. But I do care that I'm diagnosed correctly this time although, like you, I'm quite sure I've had sjogrens and Hashimoto's since I was young.

What annoys me more, on principle, is the way that Sjogrens is divided into primary and secondary, where other rheumatic diseases are only viewed as primary, even if they develop long afterwards. This seems to me to be a nonsense because all primary means is the disease that presents first. The reason this distinction concerns me is because I think it says so much about the way SJS is viewed by the medical profession compared to the others. 

[MAT51]

i know that u know better than me whats going on. im in this nightmare just since 4 years and was lucky enough to have a nice lips biopsy( that I insisted to do after few months with dry mouth) positive so  i did not have to wonder around for a long time.
BUT i just wanted to say that  milions of people without sjogren have reflux, milions have difficulty in swallowing, have acidity or things that get stuck in their throat and all the disconfort that come with this . i dont have a friend who never took an antiacid for  a long time. so , just to be hopeful,  may be its not said that everybody with sjs could develop miastenia or gastroparesis or their symptoms are related  to these deseases. may be yes but also may be no.

I'm same as you with lip biopsy positive but also agree about millions of people suffering heartburn and taking anti acids etc. Same goes for dry eyes and dental decay. This is why I wouldn't have pushed for a lip biopsy for these symptoms alone. But coming after aggressive treatment for RA followed by progressive SFN, I had to know what was going on despite my supposed RA being inactive.

I think diagnosis is still made mainly by a person's history of autoimmunity as well as the combination of SJS type symptoms, plus the severity. For me it was only important to get a proper diagnosis by lip biopsy if this would help me to access more effective modifying drugs and research ways to self manage my symptoms.

I have had the moisture deficit symptoms since I was young so it was only when bilateral joint pain started during my menopause that I needed a formal diagnosis in order to understand and treat before it caused joint or organ damage. To me this is about preventing debilitating erosion caused by systemic inflammation rather than just helping my symptoms. Drugs have never helped my symptoms too much. If anything they have caused me further problems -especially the neuropathic meds. This is why I believe diagnostic criteria are actually quite important for those of us rheumatic diseases. Otherwise everyone says "oh I have that too!" But in fact they don't.

[felpeyu2]

Hello. After several unbearable pains in the chest/shoulders/stomach I am waiting for a gastroscopy (the heart is OK). I am taking Nexium right now and I have lost about 5 kg in the last months. I do not know how much time I have to wait for the gastro, I will write then if the doctors find something or not.

[Sharon]

Thank you everyone for your answers!
The issue could indeed arise from a number of conditions or SJS-related complictions.
I used to take Domperidone for years when I "only" suffered from IBS and it had been my "miracle drug"
back then, but today it does nothing for me.
I do wonder sometimes how much of it is related to our saliva: How much saliva is needed for proper digestion, if our saliva lacks specific enzymes...

So many questions, so few definite answers....