tag:blogger.com,1999:blog-690850457652849477.post484044648414253887..comments2024-03-19T09:10:47.280-07:00Comments on Reasonably Well: Gastrointestinal Effects of Sjogren's SyndromeJulia Oleinikhttp://www.blogger.com/profile/04857783768340014545noreply@blogger.comBlogger108125tag:blogger.com,1999:blog-690850457652849477.post-34590656349895077762022-03-17T18:05:33.432-07:002022-03-17T18:05:33.432-07:00I cannot tolerate plant fibre anymore so basically...I cannot tolerate plant fibre anymore so basically had to give up vegetables and fruit. Even before developing Sjogren's I couldn't tolerate bread, legumes, (and any other fermentable carbohydrates). Now I definitely don't do well on dairy. If I have dairy I will take charcoal capsules with it so it doesn't affect my breathing during the night (I have a narrow airway and the dairy seems to make my airway "stickier" for the next couple of days unless I have the charcoal with it. I have stumbled across some stories of people going into remission from Sjogren's by doing an all-meat elimination diet and slowly reintroducing only a few well-tolerated plants that don't upset their gut or trigger an autoimmune flare. That has helped me feel okay about eating mainly meat. It's just the thing that sits best in my stomach. And it's fantastic for evening out blood sugar (I used to get hypoglycemia often, which can trigger anxiety in me). Another bonus about the mainly meat diet is that after a few years on it my bone density is actually increasing. I was diagnosed with osteoporosis in my early forties. The bone specialist was quite surprised at my improvement. Khttps://www.blogger.com/profile/01326725006300632038noreply@blogger.comtag:blogger.com,1999:blog-690850457652849477.post-68244477508681159192022-03-17T14:54:12.594-07:002022-03-17T14:54:12.594-07:00I have had SS for over 20 years with lung involvem...I have had SS for over 20 years with lung involvement. I just recently started having GI problems. I have been combing through the posts looking for natural remedies for upset stomach. Seems like even a simple salad makes me sick.Andreahttps://www.blogger.com/profile/12458802343884549033noreply@blogger.comtag:blogger.com,1999:blog-690850457652849477.post-60690502187367953862022-01-24T19:19:31.460-08:002022-01-24T19:19:31.460-08:00From a study published in 2021: "Most patient...From a study published in 2021: "Most patients with primary Sjögren’s syndrome experience gastrointestinal problems but have no recommended treatments available due to lack of information about the underlying causes, a pilot study reports.<br /><br />Future studies will be needed to identify these causes and to explore the possible relationship between these symptoms and other conditions, such as depression and fibromyalgia, researchers say.<br /><br />The findings were reported in the study “Abdominal symptoms during Sjogren’s syndrome: a pilot study,” published in the journal Advances in Rheumatology."<br /><br />https://sjogrenssyndromenews.com/2021/02/22/gastrointestinal-issues-common-primary-sjogrens-patients-pilot-study/Khttps://www.blogger.com/profile/01326725006300632038noreply@blogger.comtag:blogger.com,1999:blog-690850457652849477.post-66845752417528965602021-03-31T15:55:22.058-07:002021-03-31T15:55:22.058-07:00I have been dealing with Sjogren's and the eff...I have been dealing with Sjogren's and the effects of dry eyes for about 6+ years. I did the plugs, cauterized the ducts and then finally found out about IPL-Intense Pulsed Light. My eye doctor was the one to diagnose me and then led me to a dry eye specialist that completed IPL in 4 appointments 2 weeks apart with the final one including a heated massage on my lids. I now have some oil gland secretion which is what you need for productive tears. Closing your ducts isn't helping you have productive tears---as I found out. I too use celluvisc eyedrops at night before wearing an eye mask. Prior to this I have a mask that is heated in the microwave and applied to my eyes for 6 minutes. I take Eye Promise vitamins for eye health as well as their Restore vitamins. I use Xiidra drops...Restasis didn't do anything for me. Hope this helps those of you with dry eye issues!Anonymoushttps://www.blogger.com/profile/03188088603416463762noreply@blogger.comtag:blogger.com,1999:blog-690850457652849477.post-20332300756432392582019-05-21T18:08:50.887-07:002019-05-21T18:08:50.887-07:00I was diagnosed with secondary SS about 10 years a...I was diagnosed with secondary SS about 10 years ago. The worst for years was the fibro - constant pain everywhere. I was ready to give up on life. My youngest son suggested I try CBD oil. I had nothing to lose, so I did. My fibro pain stopped almost immediately. That was almost 2 years ago. I have come off of my SS meds - plaquenil, savella - all of it. The CBD oil gave me normal gastro for 10 months but those problems came back. I recently was diagnosed with diverticulitis and an infected colon. I took antibiotics for 3 weeks. The gastro problems continue and I have another gastro appointment in about 2 weeks. Some days I poop 8, 10 times a day and sometimes I cannot make it to a bathroom. Stress makes it worse but who wouldn't be stressed if they were always worried about not getting to the bathroom and making a terrible mess?! Despite my gastro problems, CBD oil has helped me tremendously. It has helped my osteoarthritis some as well. I just wish it had continued to alleviate my gastro issues. Best of luck everyone. I hope others will try CBD for SS issues.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-690850457652849477.post-710912456914923542019-05-07T17:06:07.198-07:002019-05-07T17:06:07.198-07:00Hi, unfortunately I have Sjogren's. I am mana...Hi, unfortunately I have Sjogren's. I am managing my dry mouth with vitamin B1 (300mg per day in the morning) and vitamin B6 (150mg per day spread over the day). I also take omeprazole 20mg per day for reflux.<br />I am trying to manage my dry eyes which are presently my worst problem with Ikervis (ciclosporin) and celluvisc eye drops.<br />The dry bowels I can only manage with laxatives. Every morning I lie with my knees on my chest for about 5 minutes which helps!<br />I try to remember to take a tablespoon of olive oil every day since a trial showed it improved heart function.<br />As far as my teeth are concerned, my dentist says considering my lack of saliva, by rights I should be losing my teeth but he congratulates me every 6 months on my exemplary dental hygiene! My secret is a plastic tooth pick!<br />I hope some of these tips help someone; I like most had to learn the hard way.<br />I have picked up a few tips from this site. Thank you!Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-690850457652849477.post-36616996090707267212017-07-03T16:37:41.298-07:002017-07-03T16:37:41.298-07:00It is very important that you seek professional he...It is very important that you seek professional help before trying any technique and sleep pattern could have a great contribution to your overall health as well. Erinhttp://www.hghgurus.com/releasers/the-genf20-plus-review-can-this-hgh-relaser-help-you-look-young-againnoreply@blogger.comtag:blogger.com,1999:blog-690850457652849477.post-8614773117924154672017-03-31T16:52:35.058-07:002017-03-31T16:52:35.058-07:00For those people who are lupus sufferer and maybe ... <br /><br /> <br />For those people who are lupus sufferer and maybe reading this, I find it hard that people are still ignorant when it comes to LUPUS and have no idea what the illness is all about and still flippant about it even in the medical world.<br />After my daughter collapsed at home she was seen by one of the Consultants in the Lupus Unit who performed more tests and confirmed that she was negative with the Anti-RO antibodies. when I was told this, as I was slowly thinking I was losing my marbles and this was all in my head.<br />The Doctor prescribed a course of treatment but said that it would take about 8-9 months for the drugs to start working. I felt relieved to think that there was light at the end of the tunnel but still quite daunted by her having to cope feeling the way. After 2months of taken the medication the symptoms seemed to get worse, She had fevers, cold sweats, chest pains, constantly nauseous and she was finding it difficult to breathe. Her Doctor thought that the difficulty breathing may have been caused by one of the anti-inflammatory drugs and stopped them straight away. <br />But Everything started to get easier from the point we came across Justin Herbal Medicine. When I first contacted Justin he told us that the drugs they'd used had aggravated the Lupus and caused it to flare more badly. The miraculous new treatment (Herbal Medicine) was for her to start the medicine sooner which was my thoughts, which of course was helpful.<br />His medicine is very effective, she experienced no symptoms for the past 1year. If you/your relative have same problem, do not expose yourself to more danger, use a herbal remedy that is safe and effective. Contact him directly for more info. with this address: lancejustin54@gmail.com <br /> Anonymoushttps://www.blogger.com/profile/00966373209086459322noreply@blogger.comtag:blogger.com,1999:blog-690850457652849477.post-88256211580042432722017-03-12T07:17:13.918-07:002017-03-12T07:17:13.918-07:0034, recently diagnosed with sjogren's after 6+...34, recently diagnosed with sjogren's after 6+ years of debilitating stomach issues. Ibs, hiatal hernia and reflux are ever present. I also have tmj and fibromyalgia. I feel thirty years older than I am. And I wish I could find some relief. If my digestive issues aren't acting up, I'm so fatigued I don't know how I function. If my body isn't in extreme pain, my throat, nose and eyes are so dry I want to cry....but I can't. Very helpful blog and it's nice to know I'm not alone.Krissynoreply@blogger.comtag:blogger.com,1999:blog-690850457652849477.post-20025428773559010282017-02-04T20:04:12.293-08:002017-02-04T20:04:12.293-08:00Amen!!!Amen!!!Reluctantsjoggiehttps://www.blogger.com/profile/02933780382366659152noreply@blogger.comtag:blogger.com,1999:blog-690850457652849477.post-17633354274551933972016-11-29T14:11:53.996-08:002016-11-29T14:11:53.996-08:00I came across your blog while researching an artic...I came across your blog while researching an article on Sjogren's and diet, a topic which is of personal interest to me--not only do I have Sjogren's but collagenous colitis and all it involves. A marvelous dietician took me off gluten products, even though I don't have celiac disease, and the results are remarkable. I certainly don't miss the foods I should avoid. Thank you for this information that will be of use long after I complete this article.Anonymoushttps://www.blogger.com/profile/06131966240255391389noreply@blogger.comtag:blogger.com,1999:blog-690850457652849477.post-70509830270943978272016-09-21T22:09:23.105-07:002016-09-21T22:09:23.105-07:00Nothing compares to the healing power of nature. A...Nothing compares to the healing power of nature. Almost every health problem can be addressed in one natural way or another. Digestive issues rank among the ones that can be dealt with through the selection of herbal remedies.Margo Dillhttp://margodill.com/blog/pills/why-we-gave-five-stars-for-perfect-biotics-by-probiotics-america-lets-find-outnoreply@blogger.comtag:blogger.com,1999:blog-690850457652849477.post-66271883497533505152016-08-27T20:05:06.501-07:002016-08-27T20:05:06.501-07:00consider corn rather than or in addition to gluten...consider corn rather than or in addition to gluten...would explain issues with beverages (corn syrup being issue not fizz)and Chinese takeout...Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-690850457652849477.post-13968531532791289182016-07-29T14:20:46.647-07:002016-07-29T14:20:46.647-07:00The pulling out of the eyelashes is probably and a...The pulling out of the eyelashes is probably and anxiety disorder called trichlomania. I have it too, except I pull out my hair. I am also young, got a sjogren's diagnosis at 17. I would suggest seeing a cornea specialist for her dry eyes. I am on Restasis which has helped a lot and use systane ultra tear drops. These work like magic! They stay in your eyes for longer because they are more gel like. I also sometimes use systane ointment at night. This helps, although is a bit uncomfortable at first. Most of all, please go see a opthomologist (cornea specialist if possible) and ask him/her to take a look. Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-690850457652849477.post-79841383246969130532016-07-24T01:19:19.738-07:002016-07-24T01:19:19.738-07:00I'm not sure if anyone can still reply or rece...I'm not sure if anyone can still reply or receive replies? I would however love to know more about the elm powder. My stomach is always painful for me and in so many different ways. I choose not to eat quite a bit because if repercussions or I have no appetite at all. Any info would greatly be appreciated! Ty Lisa Wheeler Milton...Amandahttps://www.blogger.com/profile/07016232296035620362noreply@blogger.comtag:blogger.com,1999:blog-690850457652849477.post-35748146905987624322016-07-18T06:27:49.632-07:002016-07-18T06:27:49.632-07:00I have suffered dry mouth dry eyes since 2009 and ...I have suffered dry mouth dry eyes since 2009 and in 2011 was put on plaquenil by a rheumatologist. It started with stomachache and feeling of sour taste, dry mouth then I was diagnosed with GERD. Never had that before and then suddenly all hell broke loose. Bad breath due to acid reflux, burning tongue. Saw different doctors, from ENT to Gastro, to Rheumatologist. They put me on proton inhibitors to stop the reflux and I was on and off it for 2 years. Had burning tongue pain in 2011...persisted for a year and then suddenly it went away. It was painful and I didnt want to talk. Imagine teaching with it. I tried DGL licourice, etc. Temporary solution. I started to exercise more often and persisted with the exercise regime did yoga, running, etc. I think the exercise helped me a lot. Later in 2014, Dr took me off plaquenil. A friend recommended milk thistle...for the first time, my tongue was a nice pink...before it was pale with white stuff. Been taking milk thistle quite regularly...sometimes I stop...but I wlll keep that as a must have, I also tried different brands of digestive enzymes...Enzymatic brand gave me a weird breath sometimes. Then I tried GNC digestive enzyme and it has helped me ever since up to now. I started taking it beginning of 2016. So milk thistle and GNC D.E.. However, I noticed 2 things, when I take milk thistle, my mouth doesn't feel dry then I take D.E., my mouth feels dry...but no breath odor from digestive issues. Weird!!<br />I dont have the dry eyes that I first felt when I was diagnosed as having suspected SS. Till today, the Drs couldn't ascertain that what I have is SS...<br />However, exercise,vitamin D, fish oil, lots of fruits and vegetables, Brown rice, milk thistle, occasional digestive enzymes have helped me. Take coffee, tea, anything sour in moderation. Sour cream, yoghurt is alright though. However, I noticed that chewing on certain meats have become tough for me...meats like frog legs, beef steak...but fish and chickens are ok. I have reduced my meat intake, processed food intake, cut down on glutinous rice, sweet stuff, too. But exercise helps tremendouslyAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-690850457652849477.post-65984632902176509762016-07-08T15:00:28.841-07:002016-07-08T15:00:28.841-07:00Probiotics are beneficial bacteria that live in th...Probiotics are beneficial bacteria that live in the digestive tract. These microorganisms are very important for our health. For a start, they kill pathogens and reduce the colonies of harmful bacteria. In addition, the probiotics play a role in digestion and the absorption of nutrients.Nury Martinezhttps://www.nurymartinez.com/pills/a-guide-to-buying-top-probiotics-essential-culture-supplement-by-leaf-origin-review.htmlnoreply@blogger.comtag:blogger.com,1999:blog-690850457652849477.post-75953519558076646462016-06-07T23:36:50.435-07:002016-06-07T23:36:50.435-07:00Ulcer disease occurs because of the stomach acid s...Ulcer disease occurs because of the stomach acid so that injure the stomach wall <a href="http://caplanbagels.com/cara-mengatasi-maag-saat-bulan-puasa/" rel="nofollow">Cara Mengatasi Maag Saat Bulan Puasa</a>Anonymoushttps://www.blogger.com/profile/15103981747981090479noreply@blogger.comtag:blogger.com,1999:blog-690850457652849477.post-44656207040707752742016-06-06T21:33:10.169-07:002016-06-06T21:33:10.169-07:00coconut water after becoming the new sensation in ...coconut water after becoming the new sensation in the world of health, especially in weight loss naturally, to learn more read on <a href="http://www.guitarticles.net/cara-cepat-menurunkan-berat-badan-dengan-air-kelapa-muda/" rel="nofollow">Cara Cepat Menurunkan Berat Badan Dengan Air Kelapa Muda</a>Anonymoushttps://www.blogger.com/profile/15103981747981090479noreply@blogger.comtag:blogger.com,1999:blog-690850457652849477.post-17693808725725010432016-05-23T21:45:13.508-07:002016-05-23T21:45:13.508-07:00may be useful for all of you, please visit our web...may be useful for all of you, please visit our website <a href="http://obatsyarafmata.com/" rel="nofollow">Obat Syaraf Mata</a>Anonymoushttps://www.blogger.com/profile/00112888788122537385noreply@blogger.comtag:blogger.com,1999:blog-690850457652849477.post-64581027656982931452016-04-26T21:16:04.851-07:002016-04-26T21:16:04.851-07:00williams6650 is my old id... not sure how to chang...williams6650 is my old id... not sure how to change it. April Williams, williams7540@gmail.com <br />Looking for help for my daughter.April Williamsnoreply@blogger.comtag:blogger.com,1999:blog-690850457652849477.post-90028005919692588562016-04-26T21:14:08.548-07:002016-04-26T21:14:08.548-07:00Please tell me, what is your reason for putting th...Please tell me, what is your reason for putting the vaseline on your eyelids? My daughter is 12 and I believe she may have undiagnosed Sjogrens. She has picked out her eye lashes and eye brows. williams6650https://www.blogger.com/profile/17144646813360361215noreply@blogger.comtag:blogger.com,1999:blog-690850457652849477.post-7180268844443331492016-04-26T21:09:10.305-07:002016-04-26T21:09:10.305-07:00Interesting that you put it that way... my daughte...Interesting that you put it that way... my daughter was diagnosed with Dysautonomia and "celiac"... had tried Gluten free. She has not yet been diagnosed worn Sjogrens but I'm thinking she could have it. She's only 12. :(April Williamsnoreply@blogger.comtag:blogger.com,1999:blog-690850457652849477.post-20994733912716654772016-02-25T13:46:15.636-08:002016-02-25T13:46:15.636-08:00Thank you! Your blog is full of great information...Thank you! Your blog is full of great information (and photos/clip art). I'm going to write this in Reader's Digest form. Diagnosed with colon cancer 2009. Colorectal surgery 2010. Post surgery, bowels never returned to normal. 3 challenging years later, Enter colostomy. Chronic IBS-C IBS-D, non functioning bowels. Multiple hospitalizations. So many "cures". (No celiac, thankful). Speeding forward. 5 years + of Widespread chronic pain, dry eyes, had no clue about dry mouth until recently diagnosed with a bout of oral yeast (like trying to swallow a very large cotton ball and having it remain in your throat). Peripheral neuropathy in feet and hands. This was part of chemo, who knew it would never go away? The pain in my fingers is intensifying. Dry skin. Of course, I live in the desert. Who doesn't have dry skin, eyes, mouth? But pain? Flu like symptoms/fatigue/I went from being SO fast/multi-tasker to Soooooo slow. I experienced chemo brain during and post chemo. Normal. Why has it lasted for 5 years? What happened to my brain? Why am I so sad, sad, sad to see the return of spring and summer? Too much sun! I work in the shadows from lights burning in adjoining rooms. Small lamps with dark shades are ok. "Do not turn on the lights" - my evening plea. Then! the soapy, metallic, soapy/minty burning taste/lips. Everything except peanuts in the shell (not even my favorite food) tastes like soap/mint/metal. I discovered a blogger in Australia who wrote about this weird symptom. I heard about Sjorgren's Syndrome so many years ago. My oncologist ordered all of the appropriate tests and helped open the door to see a rheumatologist before next year. I have one autoimmune disorder but it is not connected to Sjogren's Syndrome. Thank you for this post. I'm waiting for lab work to return. I would like my lab work to confirm what I believe has been going on for sometime. If I am one of the 50% who's body doesn't confirm a diagnosis, I do hope my doctor's will treat these Sjogren's like symptoms. Finally, if this is a positive thing? and to me it is, all of my symptoms collided at one time. Yes, I feel bad, yet there is something that is beginning to make sense. Sjogren's. Thank you! Best to you. kathryn Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-690850457652849477.post-11986928421745156992016-02-20T17:39:02.787-08:002016-02-20T17:39:02.787-08:00I am from rural Kentucky. I also rely on God to h...I am from rural Kentucky. I also rely on God to help me live with this disease. Without Him I could not bear up. Had to quit working June of 2015: which was probably one of the best decisions I have made. I have found if I only use Bausch & Lomb eye wash, I can control the irritation better. The ointments and drops made my eyes more problematic. I have the dental issues as mentioned in the other post, but never thought about the medical side of the loss of teeth. Forcing my tongue loose from the roof of my mouth is not fun at night, or pulling my lips loose from my gums during the day. I was raised to work and do a good job. It has been hard not being a tax payer. Had a hysterectomy at 23, years later gall bladder, then over 13 years ago, had to remove thyroid gland, and a parathyroid gland, from tumors that was hurtle cell and hashimoto's, 3 weeks later chronic pancreatitis and my autoimmune system has targeted my pancreas, ever since then. I will not go into detail about my pancreas, other than to say I do my best, because I am accountable to God, my family, and myself. If anyone who has this disease drinks alcohol, they are nuts. I control the diabetes with diet by God's amazing grace. My GI issues have been a problem for most of my life. Since Obomacare, I limit my trips to the doctor because our deductible is huge. When I leave this earth I want to be with God forever and I trust Him for my future. Be wary of home remedies because they can cause problems with prescription medicine. Best wishes to all who have posted. Anonymousnoreply@blogger.com