Too often, uninformed health care providers assume that Sjogren's Syndrome is simply a disease that affects tears and saliva production, period. When reading the message boards for Sjogren's Syndrome or other autoimmune diseases, time and time again I read comments similar to this:"I was told that Sjogren's will make my eyes dry, and my mouth dry. If that's all it is, why do I feel so tired? And achey and sore? Why can't I think straight on some days, and why does sunshine make me feel so awful? Why can't I eat some of the foods that I used to, and why do I get so much heartburn these days? What's happening to my body?"
There is no question that Sjogren's Syndrome can be a systemic condition, which means that this disease can affect the entire body, not simply the eyes and saliva glands. You can read more about the systemic effects of Sjogren's here and here and here.
This post focuses on the effects that Sjogren's can have on the digestive system. Most Sjoggies can attest to the changes that occur in our intestinal tract after the onset of Sjogren's. When researching the link between Sjogren's and digestive tract effects, I found very little literature out there to explain this apparent relationship.
When discussing this with my rheumatologist, Dr. S. acknowledged that often her patients have complaints regarding their digestive tract. They may have symptoms similar to irritable bowl syndrome and intolerance to various foods. Some experience frequent heartburn, and others constipation. If the symptoms are significant, a referral is made to a gastroenterologist to rule out other conditions.
In my case, I developed an intolerance to wheat products. So, to rule out another autoimmune disease; celiac disease, and other GI conditions, I dutifully reported to my GI appointment. I won't go into detail, but every part of my intestine was scoped and examined and viewed and probed. This was not an exceptionally pleasant examination, but the information gained from it was valuable.
I left the GI doctor's office with a clean digestive bill of health and a diagnosis of irritable bowl syndrome, which basically means that my innards are cranky but otherwise normal. I was relieved that I didn't have celiac disease , this definition from the National Institutes of Health: When people with celiac disease eat foods or use products containing gluten, their immune system responds by damaging or destroying villi—the tiny, fingerlike protrusions lining the small intestine. Villi normally allow nutrients from food to be absorbed through the walls of the small intestine into the bloodstream. Without healthy villi, a person becomes malnourished, no matter how much food one eats.
The question seemed to remain unanswered - so why can't I eat bread and cereal and pasta anymore without some really embarrassing results? I was perfectly capable of ingesting pastries and breads before Sjogren's. It seemed suspicious to me that the irritable bowel syndrome made it's appearance at about the same time that Sjogren's showed up.
Last week, I came across an interesting source of useful information regarding the link between the digestive tract and Sjogren's Syndrome. Written by Dr. Joop D van de Merwe, this online book titled 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.
Chapter Nine - Gastrointestinal Disorders provided some useful potential explanations of the Sjogren's link to these problems. Dr. van de Merwe outlined several possible reasons for GI problems. Among them are these common problems:
Swallowing difficulties can be caused by decreased saliva production.
Constipation may also be a result of the decreased fluid in the intestinal tract when less saliva is produced. A potential link between the effect of Sjogren's and the smooth muscle that propels food waste products along the intestines is also discussed in this chapter.
Food intolerances and Irritable Bowel Syndrome: Dr. van de Merwe hypothesizes that these problems may be due to decreased mucous production in the intestinal lining. Since the mucosal lining is a protective barrier for the intestine against irritation, a decrease in mucous production, which is evident elsewhere in Sjogren's, could potentially allow this protective lining in the intestines to be less effective resulting in an irritated bowel. The National Institutes of Health offer these additional explanations and suggestions for IBS patients: IBS means your bowel doesn’t work the right way.IBS can cause cramping, bloating, gas, diarrhea, and constipation.IBS doesn’t damage the bowel or lead to other health problems.The doctor will diagnose IBS based on your symptoms. You may need to have medical tests to rule out other health problems.Stress doesn’t cause IBS, but it can make your symptoms worse.Fatty foods, milk products, chocolate, alcohol, and caffeinated and carbonated drinks can trigger symptoms.Eating foods with fiber and eating small meals throughout the day may reduce symptoms.Treatment for IBS may include medicine, stress relief, and changes in eating habits.
Frequent Heartburn and stomach upset may be caused by inflammation of the stomach lining related to the inflammatory action of Sjogren's. Another, more common cause of the problems may be related to the side effects that many of our medications produce. NSAIDS - or non steroidal anti inflammatory drugs such as Motrin, are often very irritating to the stomach and intestines. Other medications frequently used in treating Sjogren's Syndrome such as Plaquenil and Methotrexate may cause stomach upset.
Like most other Sjoggies, I have learned by trial and error which foods are problematic for me. I have grudgingly come to accept the fact that my days of turning out loaves of golden, fragrant, yummy, home made bread are a thing of the past. Sigh. Cookies, cakes and pies need to be an infrequent treat consumed in close proximity to a bathroom. Drinking a Starbucks latte requires a follow-up antacid.
It helps a great deal to have an explanation of sorts.
6 comments:
I think Sjogren's definitely wreaks havoc on the digestive system. I've had problems with swallowing food and heartburn for years; my pregnancies were misery as a vomited most all nine months, to the point of being dehydrated.
So, I went to a GI and after they stretched my esophagus out, they did a biopsy and sure enough, I had EE (eosinophilic esophagitis). My rheumy thinks it's related to SS.
(I recently started using a slippery elm powder in applesauce in the mornings. It's soothing and adds a slippery surface to the GI tract. I've been impressed.)
Julia, another tremendous post from you including your trademark wonderfully helpful synopses. Thank you!!!
The "here" links are terrific. The second one (Medifocus) is really excellent for being both very well-organized and exhaustive.
Speaking of GI effects--long before my Sjogren's diagnosis, I'd found Heather Von Vorous's IBS website, so had already figured out a couple of tricks, namely dairy-avoidance and limiting bread to French or sourdough (have you tried this?). Instead of milk I live on Rice Dream and yogurt. What a difference this made. But it wasn't until going through GI work-ups as you did to rule other conditions, and trying and abandoning several gut-upsetting anti-inflammatories, that things have finally settled down. At least for that end of the digestive tract. I've just learned all about angular cheilitis. No fun. But a shot of B-12 seems to have helped.
Thank goodness for your blog. I hope you have a "visits" counter because I'm sure your audience is huge. Continuing to enjoy all your posts whether highly informative or utterly silly. Thanks so much, keep 'em coming.
Wendy, thank you for your very kind comment!
Thank you for putting a spotlight on this. I went through the same thing. The gastro doc, the okay from the doc, and labeled ibs. It is a relief to get an all clear result. SS can do so much more than just affect the eyes and mouth.
Hi Julia,
firstly i want to tell you how grateful i am to all your hard work on this blog. i have had ss for a year and only just diagnosed and your info is excellent. i developed food intolerances and am on tablets for my acid and oesophagus that also act as anti-histamines. when i eat the wrong things i actually get hives, urticaria. unfortunately i still have failed to isolate these foods!!!! thanks soooo much!
Thank God for the internet. I knew my SS had something to do with my indigestion. I see my rheumy on Monday and I will bring this up to him. My primary had me believing it was just age and ibs.
I have more of a systemic SS (began with Pancreatitis). I've yet to meet another male with SS on a SS blog. Thank you for your insight! Does anyone have skin crawling itches when they get out of the shower??? The worst!
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