I am having a lot of digestion issues. Nausea, diarrhea, constipation, stomach cramping, achy, fatigue, you name it! It is causing me to have anxiety again too.
All my bloodwork has been normal. Normal urine tests. Normal for hpylori, normal for other bacteria in the small intestine. Normal gastric emptying test...
I did have an ultrasound yesterday and don't have the results back from that.
I'm starting to wonder if I could be intolerant to some foods?!
I do have celiac disease and the feeling is similar to when I have gotten glutened. But I haven't gotten glutened at all and we even checked my antibodies to make sure.
I have cut out coffee, eggs and dairy for the passed few weeks. I ate some dairy a week ago and had zero problems. Yesterday, I had my gastric emptying test and guess what I had to eat? Eggs. I ate them fine, didn't seem to have any issues and later in the day wanted coffee so bad that I drank 1/2 cup. By the evening I had nausea and anxiety and felt bloated and miserable. I slept 12 hours and still feel horrible. So it kind of seems like eggs and/or coffee could be the culprit.
However, I have felt horrible for 3 months now with just a little normalcy when I started cutting foods out. Ugh. I also have a scope scheduled in 3 weeks.
Hope I get some answers soon. I need relief from this! Luckily, I have today and tomorrow off to eat gently and relax. I need to stop worrying too :( Engy
Stop worrying is the first step. The second you have started with taking your own action. Coffee seams to be a problem. What about Tea? What about Gluten?
It takes about 3 weeks to get off caffeine. They will seem like the worst 3 weeks of your life. I took aspirin / Aleve when I was withdrawing. I found that pop and Ice Tea was too strong for me. Currently, I mixed ice tea and Lemon aid 50/50 (Arnie Palmer). It seems to provide the caffeine and helps with moisture when I eat. I mix it in bottles with caps so I do not have to take it all at once. I sip it with each bite. Then I go back to sipping water. What is left of the tea mix goes back into the fridge. This has helped me. I hope it helps you.
Joe,
You must be the calmest person! You always do a good job at telling people to relax, don't worry! It's great.
I've been off coffee for 2 months now but convinced myself I was fine with it but apparently I'm not.
Also struggling to eat any red meat and fried or fatty foods. I can eat fruits, veggies, turkey and chicken. Some gluten free bread.
I found some Traditional Medicinal tea for soothing stomach and that seems to be okay right now.
Thanks for the pep-talk. Hoping to get answers sooner rather than later.
I am seeing my holistic psychologist again to help keep my nerves/worries in check.
Have you lost weight with this?? If you are following your gluten free diet things should remain pretty stable. My hubby had Celiac as do one son and one grandson so have 39 years of cooking gluten free. Have you been eating oats? These days they say that there are oats that can be eaten by people with celiac disease. Many people still can't tolerate them. Also soy oil and canola oil are both oils that give people trouble. Check out what your cooking oils are made from.
The other thing that is possible is that your colon issues aren't causing the anxiety but the anxiety is causing the colon issues. I had lots of colon issues and times with many months of diarrhea and could hardly eat anything but the poached eggs, rice, potatoes, etc. Many years later my new immunologist asked me if the doctors back then had tried prednisone burst and taper to see if things settled down. Sometimes we can get autoimmune attacks on our gut without bleeding. Sometimes it is even hard to get a biopsy that will prove inflammation. Just a thought to present to your doc.
Then there is the fact that the colon/brain relationship is very close. The brain secrets serotonin and the colon secretes serotonin also. Most of my colon issues settled down when I was put on an antidepressant for depression. I was not expecting that to happen but I was really happy not to have all those stomach cramps, etc. anymore. If your anxiety is bad be aware that autoimmune diseases have a very high incidence of depression and anxiety and the latest info is saying that depression can be an autoimmune issue in itself.
As a side light I would also advise you to be super vigilant about reading labels and keeping a log of your food intake. It may be that there is one food additive that could be causing you problems. Also, deodorant and toothpaste can also contain gluten.
The website http://www.celiac.com is really pretty good about covering all aspects of life as far as gluten exposure. Also, makeup can also have hidden gluten. Good luck. Irish
I see that you are taking magnesium. I went through a period of about six months last year feeling similar to you. I would have uncontrollable diarrhea some days and constipation other days. I finally realized it was the day that I took magnesium that I would have diarrhea. Unfortunately I still get constipated, but it's better than diarrhea almost every day.
Jenny, magnesium hasn't been a problem for me. I'm looking into all of my supplements and medicines again just in case though.
Irish, we are really careful about gluten as my entire family is gluten free so I don't think it's that. Plus we check my gluten antibody levels and those aren't elevated at all. I do think it's possible that another food is bothering me (intolerance) so I am keeping a food journal. I have lost about 6 pounds so far.
Most of my pain/nausea is high, right between my ribs and even goes to my upper back. My doctor wants me taking Prevacid now even though I do not feel any acid or heartburn at all.
I don't think the diarrhea is from my anxiety because the anxiety has been just once in a while and the yellow diarrhea (TMI-sorry) is multiple times a day. I feel the anxiety only when the pain/uncomfortable gnawing is bad.
I agree that it could be inflammation and if everything comes back negative then I will ask for a short cycle of prednisone.
Thanks for your ideas/suggestions/thoughts! I appreciate it more than you know!
There are really educated people on this site (more than some of our doctors) and it's a blessing!
Did they do an ultrasound of your gall bladder? I'd be interested to see what those results show. If that doesn't show anything, I'd press really hard for a CT scan.
I am an old retired RN and the symptoms your describe sure sound spot on for a gallbladder issue. THe gallbladder is on the right side under the rib cage and if a doctor places his and slightly up and under that right lower rib cage there can be some discomfort that could be the gallbladder. Pain can radiate to the back either right or left side. Watch for orange urine or tinge of orange skin cause the stones or infection can plug up the bile duct and cause the color of bile to end up in the skin.
I would run, not walk and ask for scans, dye testing, etc or whatever they are doing to check out gallbladder. Be aware that many times the testing for gallbladder can be negative but when they remove the gallbladder there can be lots of stones and often infection in the organ. It can be a tricky thing to diagnose but keep at them and even get a second opinion if necessary as if a bad gallbladder is left to simmer it can cause huge problems with bad infections, and has been known to occasionally be fatal.
Don't be scared, just be persistant. Good luck. Irish
My ultrasound I had on Wednesday was looking at pancreas, gallbladder, stomach, and liver. I haven't heard back from the doctor yet, which is unusual for him. I will put a call in today.
Thanks!
Hi :)
Check out all the meds you are on. Read the information leaflets and see if any of them can cause the symptoms you mention. Some meds have alternatives.
I've been bothered by awful hot sweats since menopause. I read that Omeprazole could cause sweating so I asked if my doc could switch me to something else. She did. The sweating stopped - which was bliss - but unfortunately Ranitidine didn't 'do the job' and I had to go back to Omeprazole. Sweats back - but I know now its a choice between sweating or stomach acid. so I feel more in control cos it's my choice.
Also check if any of the meds interact with each other. Some meds shouldn't be taken close together.
Take care - Scottie
I came across my notes for serotonin production in the body. The notes I had said that the intestinal tract produces 95% of the bodies serotonin. This is amazing. It will be interesting to see what your gallbladder tests show. The amount of pain you have in the back is significant I would think. I wish you luck. Irish
I checked my meds and a lot of them could be causing my issues but I've been on them for years so I'm not sure it's the meds.
My gallbladder has a small polyp on it, no stones. My gastro. Isn't worried about the polyp because of its size and he doesn't think it's causing my pain.
My liver does show fatty liver disease, which I've known about. My liver enzymes are perfect so he doesn't think that is the issue either.
I had found some foods that didn't irritate me and I had a few "almost normal" digestion days. Then yesterday I had stomach issues all day and now diarrhea today. UGH. I've been keeping a food journal and the only things I had different were cilantro and quinoa.
So, the mystery continues...
2 weeks until endoscopy...
Wishing you all well!
I have gastric issues and came across information regarding digestive enzymes in some Sjogren's patients.
The New Sjogren's Syndrome Handbook, Dr. Wallace. p. 74
https://books.google.com/books?id=gs-IupKFYmIC&pg=PA74&lpg=PA74&dq=sjogren%27s+digestive+enzymes&source=bl&ots=u0Q7Tezz0F&sig=xaoWMp707n5MjdCzuDqMNfx3_hQ&hl=en&sa=X&ved=0ahUKEwjF4avzrvLSAhWKNiYKHSoxBAkQ6AEIWzAJ#v=onepage&q=sjogren's%20digestive%20enzymes&f=false
older post on enzymes;
https://sjogrensworld.org/index.php?topic=19022.0
https://sjogrensworld.org/index.php?topic=24723.0
I had similar issues. A dietician suggested taking a probiotic. This works about 95% of the time. I take one everyday.
When Im flaring, my stomach is a nightmare..its always a nightmare it seems. Also, you could have yeast overgrowth, which is hard to test for. Maybe your doc can let you take diflucan for a month to see if it helps. I take 100mg everyday for last 5 years. I take tons of probiotics and about 4 different digestive enzymes, which are a godsend.
I hope you can find some answers. It just maybe the SS unfortunately. I have to say, the stomach issues are my #1 issue. My gastroparesis is just horrible.
Gursie
Let me tell you what I have just gone though with my colon. I have been having issues for over 3 years and have done all that I could think of. I did ask my internist for an antibiotic that is for anerobic bacteria in the colon--several years ago I did this. It did help, but she ordered it for 7 days and I could only take it for about 5 days as I got such a gut ache from it. But I was a lot better--for a while.
Well it has gotten worse and the past year or so it has been bad. Interfered with my life also, shopping, etc. Finally got a referral to a new GI who is really good. She questioned me up and down and asked the questions that needed to be asked. She also calls poop---poop. I got a kick out of her.
She decided that it sounded like a had an infection in my small bowel and treated me with this same antibiotic I had years ago only for 10 days and for 2 times a day instead of 3 times a day. This hasw knocked the problem down about 9 % but I still feel like there is something going on only at a smaller level.
Then she also had be do the stool testing that checks for pancreatic enzyme insufficiency. This results in colon issues related to lack of pancreatic enzymes. These enzymes help in absorption of nutrients in the bowel. Without enough of these enzymes one has malabsorption of our food with resultant health issues. I had negative tests but I don't see her until the 1st of May and I will see how things go. I sometimes wonder if a small dose of enzymes would help me some.
The sjogrens affects secreting glands and the pancreas secretes these enzymes. Soooo, it is entirely possible that a lot of us with these issues could have a low grade malabsorption issue. At least with all the research I have done this does seem like a possible scenario. Good luck and hope you can get this figured out. Irish
I had my endoscopy this week. Doctor said everything in my stomach looked good. I do have a mild hiatal hernia and he thinks some stomach acid is coming up to my esophagus. He suggested I take Gaviscon and see if it helps my symptoms. I have been taking Pepcid and it seems my symptoms are 40% better but I still have discomfort.
I'm not sure if my upper back pain is from my stomach now or not. I may head to my chiropractor on Monday to see if he can help me some.
I am going to look into enzymes when I eat and I'm still trying to determine if I am reacting to certain foods or not.
Thanks for all your suggestions and ideas, I am reading them thoroughly!
Engy
I have recently bought slippery elm powder, which can be made into a drink. It's an old remedy meant to be good for digestive issues - though of course I'm not suggesting you shouldn't talk to your doctor about symptoms. However I have to say it is delicious. :)
PS. What was the endoscopy like - I dread ever having to have one, having read some lurid account online.
The endoscopies are not bad at all. IV drugs are used to cause one to be in a light state of anesthesia and it seems like you get into the room for the scoping and before you know it you are waking uphan back in the recovery area.
The worst part is the not being able to eat the night before and having to have the colon cleansed. I must say the newer products used to cleanse the bowel are much less traumatic as they don't make one nearly as nauseated as the old drugs. These tests are the necessary evils that need to be done to make sure we don't have cancer in our colon. Also, the scoping of the esophagus and stomach are necessary at times. It is amazing but we can have these precancerous polyps in our GI tract that need to be removed before they do cause us cancer. Some people make more polyps than others. Irish
The endoscopy went well, painless & simple. No need to worry at all!
I will look into slippery elm, thank you.
I feel like my entire digestive tract is inflamed & dry. I need to create some moisture in there!
I am seeing a functional doctor in June and I am very interested to see what he says. He sees my niece and sister-in-law and comes highly recommended. For me, the combination of traditional and functional medicine has helped me get my life back and I am willing to seek further to heal my gut!
Irish, all the tests for infections and bacteria have come back negative but I am interested in pancreatic enzyme insufficiency.
I am interesting in pancreatic enzyme insufficiency also. I have been having some issues for over 15 years and they have gotten worse. Antibiotic for my colon helped a lot in some things but there are still things going on that make me very suspicious about malabsorption issues. Will discuss this with my GI in a few weeks.
Seems like every time I have an issue it ends up adding a diagnosis and another medication. The meds are starting to add up so will have to go through them again and try to get rid of one or two. Irish
Earlier in replies, probiotics were suggested. I started taking probiotics 6 or 8 years ago. I still had "the" problems...but much less severe---and much shorter. The occurrences would happen perhaps twice yearly. I stopped taking them within the last 6 to 8 months. I had yet another colonoscopy (NEVER reveal a thing) and so that was it. I did take them during a recent round of antibiotics...which is how many people use them. I didn't check your age, but bottom line is: there are no answers to many things in the day of modern medicine.
I hope you are feeling better. Nothing stopped me dead in my tracks like the gastro ordeals.
ccc
ccc, I do take probiotics. They have helped some but I have been taking them for years.
I have had a colonoscopy and that was fine too.
Thanks! Engy
I think that I have EPI. Apparently it can be triggered by celiac. I have never had a definitive dx of celiac because seronegative. But Sjogren's can obviously also cause it. I believe that this is the cause of my frequent diarrhea and low weight. When I take OTC pancreatin, I notice a positive difference. I guess that I should take it all the time but it's a pain to do. Probably worth it, though.
I would think that one should take that med as much as possible because it is literally keeping you from starving to death. With malabsorption a person is losing nutrients and can end up having issues because of lack of the vitamins and minerals.
People with celiac disease general have a certain amount of malabsorption
that generally improves once they go on the gluten free diet. The amount of malabsorption after that depends a lot on the amount of damage to the villa in the small intestine before the gluten was withheld from the diet. The problem is that when a person gets low on a mineral like calcium celiacs do have problems building this back up. Good luck. Irish
True, thanks.
Okay, so I have been taking pancreatic enzymes at least twice a day for the last couple of weeks. My diarrhea has almost completely cleared up! I think I've had it once in that time, down from 4-5 times per week. I will be very interested to see if there is any positive change in my weight on my next doctor's visit. I feel like I am putting on weight. :D
I guess that I have EPI. I can't think of any other explanation.
If you can get by with taking the pill 2 times a day and are gaining weight I would consider yourself lucky. You now know what the problem is and you are not having to take all that many pills to get some relief. I do think that this is more of an issue with sjogrens patients than we previously were aware of. Good luck. Irish
Yes, the only other issue would be if this is progressive. The only treatment for autoimmune pancreatitis I have seen mentioned are steroids. Still learning. For now I am happy with what seems to be an easy solution. I should probably take the enzymes with every meal and snack to get the maximum benefit.
Pancreatic insufficiency is not caused by pancreatitis but by the insufficient amount of pancreatic enzymes that are being excreted by the pancreas. The pancreas is a secreting organ and these enzymes are the ones that help digest food and allow the nurtients to be absorbed through the small intestine into the blood stream. This helps to provide the vitamins and minerals that help our body function. Sjogrens is a disease that affects secreting organs, ie, the salivary glands, sweat glands, liver secretions, thyroid, pituitary, adrenal glands, etc.
This condition is something that I think has been missed a lot with autoimmune patients with sjogrens. It is just recently that sjogrens patients have been diagnosed in such a large number and also lived to such a ripe old age. Therefore, the pancreatic insufficiency is now becoming a much larger issue. I think the Gastrointestinal doctors had better get updated on their autoimmune information.
I am also wondering if out of this newer digestion problem the doctors will learn more and be able to find better treatment for the reflux and GERD.
Also, I did not know that there was an OTC pancreatic enzyme medication. Who makes it and where do you buy it?? Thanks Irish
Thank you, Irish. That is helpful. I bought the NOW brand, "Pancreatin 10x - 200 mg," which I believe I found at Puritan Pride, but is likely available elsewhere as well.
Looks like I am going to need a lot of this stuff. I need a better-paying job with all the supplements I take!
I have to say, though... I've started to get reflux now that the diarrhea's stopped. Meh. :-\
I just read through all the supplements that you are on and now I am wondering if there is something you are taking that could have been causing your GI issues. If you check many of the supplements they cause nausea, diarrhea quite often. The probiotics could be causing you issues. I can't take them every day as I get loose stools and that is what we are supposed to take it for. I have found that I can take them occasionally. Also, yogurt gives me GI upset if I eat it every day.
Probiotics work when there is an imbalance of bacteria and we need some bacterial growth kicked up a notch to control things. However, there are times when we can get an overgrowth of normal bacteria and this can cause gastric upset/nausea/diarrhea. Maybe a review of your supplements by someone would be worthwhile. Good luck Irish