Anyone having G.I.problems like IBS, reflux, etc? I saw a specialist at the University of Pennsylvania Hospital and he informed me that sarcoid does attack the nervous system and there are many nerves around the bottom of the rib cage, and above the waist. This is called a sensory nerve reaction. I now understand why the G.I. problems, but it took three specilaists to finally get the answer.

Report post

16 replies. Join the discussion

Yup! I was diagnosed with IBS several years ago and have had reflux for over 10 years. Prilosec 40mg/day has controlled the reflux.

The IBS symptoms that I have come and go, I was never sure it was the correct diagnosis. I can't tolerate the medication (levbid) that my internist prescribed.

I found out accidentally that the Lexapro I was taking for depression helped my gut stay relaxed b/c when I went off Lex, my abdominal pain increased. Apparently we have serotonin receptors in our gut and that's why lexapro helped. It has since leveled off but I still have some pain immediately after eating.

I haven't had my followup since initial dx with sarc 3 weeks ago but will see a new pulm this week. I have a LOT of questions for him. :)

Report post

Ditto for me on the GI problem...
Dx with IBS, Idiopathic GastroParesis, and as with a lot of us,... acid reflux (gerd?)

I also have the on again off again (transitory) stomach issues....sometimes much worse than others and vary in degree of pain.

Thanks you all.....so, this is certainly from the sarcoid right?...meaning chronic....

Have a great week,

Report post

Youe exact symptoms (GI) are what finally got me into the doc. After the sarc dx, the docs said musch of the same as in srb's post. Multi organ sarc and inflammation can lead to GI/GERD symptoms. The prilosec I am now taking to counter another drug has relieved most of the GI issues.

Report post

Hi SRB and All

Gastro issues, oh my, yes. Every moment of every day. You would think I would be a toothpick but I refuse the jello and broth diet so I end up in the ER every 4-8 wks. Aft over 10 drs a gastro finally said it has to be sarc and I see 2 surgeon's this wk. One for my gallbladder, that got stones from taking D, and my pancreas, that appears to have a partial blockage from a stone cause the gastro says a gall bladder does not come out until it is inflamed or infection. It has partial wall thickening and the bilerary tract has a slight enlargement. A stone? And the other surgeon is for my enlarged liver, spleen with granulomas, intestines, stomach and ?. Hello. What I can eat changes almost moment by moment. When I can leave the house is about the same or take 12 Imodiams. I have to be careful exersicing.

I have had GERD for over 10 yrs.

Have issues with my stomach, the pylorus doesn't always work like it should and so I have sudden dumping syndrome with occ delayed dumping syndrome.

Sometimes parts of my intestines are inflamed and look in a wk or 2 and they are fine and drs can't figure this out, hello, sarcoidosis.

I will find out more by Thurs but I am suppose to have a 20" inscion and have my entire gut explored for Sarc. That would be a 10 day hospital stay. My poor critters, tears for me too. I can't wait for this to be over. I have been a bit depressed lately over my gut getting worse, gastro quitting because he doesn't have the time for me and seeing 2 surgeon's that work on different days and I am hoping that they will team up together 1 day so I only have to do this 1 time.

I am not on Sarc meds since all of them effect the gastro tract exept pred and I can't take pred.

Hope this helped and sorry it was so long.

Report post

Hi, a subject I can warm up to. My rheumatologist diagnosed me with C.R.E.S.T. syndrome. The R is Raynaud's, the E is esophageal reflux, and the T is small red spots appearing on your fingers....lips....and inside my mouth.

Yes, I had all of this. The S is sclerderma (?) which I didn't appear to have. Crest does not seem to affect your lungs or eyes unless you have sclerderma. I may or may not have been misdiagnosed.... or I have that and sarcoidosis.

I have been treating the acid reflux since it first appeared in 1988. At first I took Nexium but I was paying for my own drugs and it was around $150.00 a month....I went to OTC prilosec... until the pharmacist told me there was a generic of prilosec and the doctor could prescribe it instead of Nexium. The generic is called omeprozole (sp ??) and I take one in the morning and one at night and I rarely have any problems. When I eat Mexican at night, or chocolate before I go to bed.... I may have a little problem.

Before prescribing this medicine I was sent for a test of the esophagus.... I had to drink this white, thick, viscous liquid..... before and during the x-rays and let me say "This was one of the worse hours of my life!"

That's my acid reflux story except to say I finally understood my father and brothers, and why one of their most common questions was: "where is the baking soda?" Thanks for listening. carosu

Report post

I have been diagnosed with COPD in the past before the sarcoid hit. Well when I would get sick I would take what I now call short term predisone treatments. The would be anywhere from 20 to 60 days in length. When I was in the hospital and had my surgery and they started me on predisone I was told at that time to take something like nexium, or previacid, or whatever to help with the predisone. I didn't know predisone could cause so many GI problems. When I used to get predisone short term I would take tums or rolaids with it and that is a no no. I would take advil to help with fever and pain and that is a no no. So after being on it long term I have learned that predisone can lead to major GI problems. So I take my nexium every day with the predisone and it does help. I still have problems but nothing like before when I would take nothing with it. Just some food for thought since I know how they love to treat the sarcoid with predisone.


Report post

Gastrointestinal problems was one of my first problems, before i even heard of sarcoidosis. I had my gallbladder out because of this. Later found out by having a ct scan of my intestine that my colon was inflammed and that i possibly had diverticulitus/diverticulosis. But basically the GI did an colonoscopy and said that he found only diverticulosis (which is out-pockets that forms on the colon walls) and that was not of too much of a concern of his. That was it. Also, basically he said I was fine and not to bother him any more with my symptoms. He said the prevacid I was taking already should do the trick. So but l kept bugging him about my symptoms and I asked for other test and he did the barium x-ray with the with the white chaulky stuff you have to drink. After that one he said I had a little GERD. Didnt see him anymore after that. So, 1 and a half year later I'm diagnosed with strong possibility of having sarcoidosis by pulmy and I have seen many doc's in between. I had all kinds of symptoms you could imagine before diagnosed with possibly sarcoid. I've seen a gyno, neuros, bone and joint specialist, ENT, pediatrist, reg. doc's, opthamo, tried to get a refero, to a rheumo, but neuro, wouldnt excepto. Finally I went to an internist and she was the one who referred me to pulmy and allergist so thats where I'm at now. Asthma, Sarcoidosis or both. Don't know. It just amazes me how a person can have so so many symptoms. And the doctors just says your fine. But never says you're crazy, but makes you feel like thats exactly what they're saying.

My GI symptoms, first nausea, diarhea, bad heart burn, bloatedness, gas, stomach cramps, no appetite, and adventually weight loss. I feel you guys with the GI symptoms. Thank goodness though symptoms are not as bad as before.

God Bless You All.

Report post

Yes yes and yes. Just started this past year with the stomach issues. Have been on low dose Prednisone for 3 years now. I just had a Endoscope to look down the stomach and I am lucky it is only acid reflux. Have a perscription to fill called Previcid I think. Hope it helps. I do get some pain, lots of bloating and gas and heartburn.

Report post

I have also had Gi problems since my youngest was born 10 years ago, bloating, gas, pain. I would look like I was 6 months Pregnant! Always in the afternoon, I was finally dianosed with IBS, which means to me just that that Drs. just didn't know what was causeing my GI symtoms. Since I have been trying everything to see what would stop the GI bloating and pain. I was told I was latose intolerant so I gave up dairy. My diet was so restricted I was down to 110 pounds.

What I found has worked is a 80% raw plant based diet which is rich in digestive enzymes and I take W-Zymes Proteolytic Enzymes and Probiotics, available at any health food store. I have not had a symtom since I started taking them 7 months ago. Which is great I can go out and eat in the evening and not worry about having to leave and go home in pain.

Report post

Thank you everyone. I know the feeling going to all the docs. Sure get tired of multi symptoms. Peace Susan

Report post

Hi Susan,

I noticed you live near me and have had similar GI issues. That's how I was dx'd last May; from a liver biopsy I had at Grand View Hospital in Sellersville.

I had severe nausea and vomiting and actually lost 50 lbs between February and August of last year. But, since I've been on prednisone and 5mg of reglan, the GI issues aren't a problem, except for the occasional flare up.

My biggest problem is that the sarc set up shop in my heart, lungs, spleen and now suspected bone marrow and peripheral nervous system. I've got a bunch of great docs associated w/ St. Luke's in Bethlehem.

I'd like to know how you're doing.

Take care,

Todd from Quakertown

Report post

ok not sure what I have. this G-d bless does not happen every morning. but their are times no matter if it is hot or cold .,what ever I eat sends me doubled over in pain. I have had this all my life. the doctors have never been able to find out,what was the cause. I have have had other simpleton but again no one knew just what,when my legs would hurt some would say it was growing pains well I am tall. so I have just lived with them.Who knows I might have had this all of my life and it never had a name until the 80's. Now I still live with some of the pain unless it hurts so much that I have to se a doctor.I have become accustom to pain.

Report post

Hi Todd,

Thanks for the reply. I also see a group of docs from St. Lukes. I also am going to the sarc clinic in Hopkins on March 31. We live close to each other, maybe we could get a support group going in the area.Susan

Report post

Yup IBS and lactose intolerant years before being diagnosed with sarc.

Report post

Makes sense. I had so many diagnosises of various things wrong with me since I was young but it wasnt til I got a large sarcoid in my neck and had it removed that I ever heard of sarcoidosis.
As a teen I had what they said was 'gout' .Then the ulcers started- GERD - IBS yep- abdominal pain, constant nausea, by the time I was in my 30's I would get gall bladder attacks but never bad enough to remove it til in my mid 40's when some test finally said it was bad, so they removed it. Meanwhile I had the stomach surgey to fix the GERD, but it didnt fix it-6 wks of pain for nothing! Then the degenerative disc disease began in my 30's, causing 4 discs to rupture but later naturally fused - agonizing months of bed rest, interrupted constantly with raising 5 kids. Miscarriages too~ 7 confirmed & 1 possible other, that I didnt go back to the DR for. My abdomen has been hurting for over 40 years.I suspected nerves had something to do with it as there was no rhyme or reason for an attack.When I was 37 I was told it was SLE- Lupus~ but somehow I never felt that was quite right, but my ins wouldnt pay for the other specialized tests needed . I was also diagnosed with Chronic Fatigue, Fibromyalgia, so then on and off pain killers. Prilosec, Gaviscon,Zantec and a few others didnt help. Then I was put on Prevacid 30mg x3 a day when they were $7 each.Frustating. Debilitating. My kids couldnt understand it nor my husband as I was always developing something 'new' to add to the list.Eventually I tried to convince myself it was nerves- mental ones- so I asked the doctor for an antidepressant as they sometimes relieve pain - didnt work either~ Due to the stomach problem, I got into snacking starches which seemed to relieve the heartburn for a while and began gaining weight, taking prednisone intermittently and gaining 20 lbs every time it was used & didnt lose the weight. Combination of meds over the next 10 years had me topped att 374- made the back worse, the knees worse , everything worse etc.

I began taking more Prevacid & stopped drinking all soda and cut out most starches & while it hurt [stomache renching nausea etc] the first 10 days I decided to eat only once a day and only what would fit in one hand.It was like a make believe stomach bypass~ I thought, had I got that gastric bypass, I would only be able to eat a little, so did that for a year and lost 130 lbs.and for a while was able to walk better so I was doing alot better, less pain meds too, [but got clipped by a car and sedentary again and gained 1/2 back already.]

As the weight dropped my stomach stopped hurting as much compared to hurting all the time.

Back on the Prevacid, but over the last 2 years my right side now has started these spasms that are so excruciating, it makes me want to die [but not suicidal] as they are increasing but the doctors cant find a reason for them other than the scar tissue from the gall bladder removal, but also say now I have a cyst in the liver and an adenoma in the rt adrenal cortex.

I just had another CT scan the other day as my right side progressively hurt more each day over several days and on the day of the scan, stepping out of the shower my back spasmed too and the both were killing me, so back on high doses of pain meds.

I had only 1 spot in my lung for a few years but it reabsorbed and is now gone. Most doctors think you have to have the lungs loaded with sarcoids to confirm the diagnosis. I get them in my skin and in fat layers - little burning beads. They float too and can be moved a little by touch~ My leg got so bad with them that after a fall, it got gangrene [almost lost it] but in the debridement, they pulled alot of those pearl like things out and each day pulled out more as it took 3 months before they could do the graft but never sent any to a lab, just dealt with the gangrene.

If I wasnt in that other car accident where the seat belt snapped on my neck causing one of the small beads to grow rapidly - to the size of a walnut in about 3 wks - requiring its removal, I never would have found out about the sarcoidosis!

I dont know how many things can be attributed to sarc as they originally blamed lupus, but likewise they never could explain the origins of many of the conditions I suffer with.

Now finding this site and seeing how many similar symptoms people with sarc and neurosarc have, it makes me wonder as the neurosarcoidosis really seems to pull it all together, at least giving a more reasonable explanation over unknown speculation and vague answers I have gotten for many years before the sarc granuloma was removed and tested.

Have any of you had the GERD or stomache & IBS issues before being diagnosed with sarc or were they onset after having children perhaps? I heard some symptoms dont show themselves til after you have a baby, but wondered if that was just another excuse or if there is any bearing to it.

My doctors also say that the treatment is standard for all autoimmune diseases - He started me out with Prednisone but a few weeks & 20 lbs later I refused anymore.

Next were these types:
1.antacids - such as proton inhibitors like Prilosec or Prevacid, Nexium and some others
2. antinflammatories - such as asprin, naprosen, ibuprofen, advil, nsaids, relafen [nabumetone]
3.muscle relaxers- for the spasms, like methocarbomal, butazoliton etc.
4.pain meds - tylenol, percocet, lorcet, vicodin, oxycoton, demoral, morphine etc.
5.nerve meds- neurotin/garapentin?
6.asthma meds- inhalers, breathing treatments, epipens~ antihistamines
7.bowel cleansers & or stool softeners, fiber to get the colon moving - [btw with the IBS sometimes it seems my intestines just shut down and dont even have that peristalsys action, how bout any of you/? Other times for no reason, its all soup~,rarely normal - but always painful..

Although I am said to have chronic fatigue in the mix, I rarely sleep more than 2 days a week~ zombie, kind of , weak, but paced to stay awake all the time, since sleeping always seems to bring back more pain and stiffness, but cat naps 2-3 hrs at most every other day, will renew my eyes enough to see better for a while. .. oh yeah - eyesight has deteriorated alot over the last 10 yrs...

Even when I stop my meds to give my system a rest, I always have to take my Prevacid and heart meds -

I wish there was one med that could answer most of these, perhaps sif it is nerve innovated generated pains,

Report post

I've been having gi problems almost from the begining. I've gone through periods where I couldn't eat or drink. I also have IBS so everything that goes with that. I still find red meat is a disaster. Currently for the past year I vomit alot. My GI did everything he could for me but has finally made me a appointment with a major hospital his choice. I've often thought about the nerve possibility and the gastric sarc. I've been told that I have stomach sarc but we'll let the pros figure it out! Thanks for the info I'll be sure to mention it as a possibility.

Report post

This discussion is closed to replies. We close all discussions after 90 days.

If there's something you'd like to discuss, click below to start a new discussion.

Things you can do

Support FSR

Help the Foundation for Sarcoidosis Research reach its goals and support people like yourself by making a donation today.

Donate to the Foundation for Sarcoidosis Research

Discussion topics

Help and information from FSR

Sarcoidosis and the Body
Sarcoidosis is a "multiorgan" disease - meaning it almost always involves more than one organ. It's unpredictable and affects different people in different ways.

You can learn about the ways in which sarcoidosis affects the body in FSR's Sarcoidosis and the Body brochure.

Community leaders