I’m so sorry uour daughter is going through this, SEA. The pain, plus not being able to eat must be horrible. I hope you can find answers and effective treatment soon.

I went through what turned out to be a colitis confirmation during the Covid lockdown, which was no fun. Thankfully it wasn’t ulcerative, and I’m mostly symptom-free most days. But if I eat the wrong things, I am quickly reminded of it.

Crohn's Disease?

Good morning!

This turned out long. TL:DR version: You guys rock!

Sorry to have dashed when so many took the time to share time and knowledge with me. (hugs)

Rough night but today is another day, fingers crossed. I think she's simply out of fuel not being able to eat like a normal person and the constant pain is so tiring. It wears on the psyche. Very understandable feelings of she'll never get well. It has been the entire year so far...It *is* a lot for her to deal with and the fact that she has a very stressful job with long hours... She's pouring from an empty jar.

But you all are sharing more possiblities than has been offered her from medical professionals, to date. You are giving, at least me, a ray of hope and knowledge. Reminds me of when I was younger and struggling with some mystery illness for years. I had to get my own freaking at home ph.d (not a real one, just 20 years of deep dive studies and putting the knowledge into action) in the illness, then the path to wellness; got myself well, through little to no help of my own doctors. History may be repeating itself here. Many thanks to our group here.

Annie, such helpful info! Thank you for your thoughts on PPIs and mentioning sucralfate. After the endoscopy, the doctor took her off sucralfate while keeping her on rx Prilosec. Saying since there doesn't seem to be an ulcer she no longer should be on sucralfate. I'm sharing with dd about a possible low stomach acid situation as you mentioned (huge thanks) and to be inquiring about getting tested for what the stomach levels actually are. Shouldn't this be what the doctor's next move should be? How one has to guide the pros is disappointing. But it does make sense...could be a low acid situation and she's taking an acid reducer--could be why she's not making progress.

I'm making a list of the zinc you mentioned and marshmellow. I told her last night about the marshmellow you mentioned and good news, she said she had already ordered marshmellow capsules--in shipment. Not sure if caps will work as well but now she knows about the tea too. She's been leaning heavy on eggs through this saying sometimes they are not too aggrivating and other times she has high pain after eating them, so maybe with the irritating protiens you mentioned eggs might not be her friend right now.

Thanks Jilly for the Melt Butter substitute. And the thought of beet or pumpkin marinara sauce...off to google! She is really missing spaghetti sauce. I make spaghetti once a week!! This here, might help her a lot!! That's so scary the PPIs caused serious anxiety for you. I don't blame you on your never again stance. As if things weren't bad enough at the time...Goodness. Your dh must have felt powerless to help you between your belly issues and now the meds causing anxiety. All of this affects our loved ones too. I told dd last night about your situation. She gave it lots of thought as she deals with anxiety as part of her natural status. Thank you for writing in. It means a lot of me.

Pricklypear, gosh, you have been through a lot! Not fair. I'm so sorry you have had to deal with this going on for a long time at different levels. The things getting worse when not eating is a thing here too. I'm not sure how she can eat raw veggies at times...and you had to have them cooked into soups and such, that makes more sense to me. I'm really glad you shared that. The giardia and h.pylori you tested positive for, goodness. That's a lot to deal with. This dd had giardia in middle school after swimming in a stream by our house that has beavers living upstream. She was so sick from that. For a long time. She did have the stool sample done recently, which did not detect h pylori or giardia (at this time), so I guess that's good for her, but she's not good, so there's that. I am really glad you are getting better now. Thank goodness we still have some antibiotics that do work. (!!) Making note of GI-map. Maybe that is different from what dd did have tested. Yes, you and your dr did learn a lot from the investigations. Yay!! Thank you for sharing with me. ((hugs)) Your work situation in your 20s sounds a lot like what dd is going through. Where you use the word company, she could sub-out for school district and same for your mgmnt at the time, ditto for her minus the drug use (we think). I get it. Stress will ruin you. Fixing that is hard. She has made unpopular changes in her work situation, logistically and committee hat wearing but the dept is still the same and mgmnt is still troublesome. She's hoping over time her stress levels will lessen but she is not seeing it just yet. She had gone to a conference mid-year on her own with her own $$ to gain perspective with districts from all parts of the state. Eye opening. After meeting dozens of peers, she learned that yes, her district is highly problematic and she is not imagining a dumpster fire. She was shocked to learn that most of her contemporaries do in fact get up every morning, go to work, do their job, come home, unbothered, unharassed and put in supportive environments. Unlike her work situation. Leadership matters but she can't change that.

Sherry, I'm getting your alt butter along with Jilly's and I'm printing your recipe!! This would make cooking easier for both dd and me. I'm finding out I use real butter often and I get stumped at the stove, as in now what? How do I cook now? I use olive oil too, but I'm afraid to tax dd's stomach with that as well. Gah. You gave me a beam of sunshine here!! Yay!! : )

bbstx, brilliant! fodmop. I'm on it now! Whoo hoo! Your neighbor sounds like he went from worst to first with this. I'm so grateful you shared this. What a wonderful group of folks here. Thank you!!! Wish I had emojis here.

Morz, thank you for stopping by. Glad to see you. You too are tiny I've seen you mention before. You Tinys can't afford a lot of weight loss. I'm only 3 inches taller than dd, but I'm husky! I can withstand a lot more than she can with stuff like this. She takes after her paternal grandparents. Tiny people. Alright so you and I think Jilly are mentioning hiatal hernia...I really am not in the know on this. Is this a contributing factor? I've not heard this mentioned in regards to dd, but from what the group is sharing, dd's health care, to date has gaps. I'm sorry about your sister. I hope she's well now. Good to know about soft bread and sharp edges as in chips and crackers. She can't eat those now of course, but I think a part of her would happily give a year of her life for a good bag of chips and crackers, if she could. We are better for knowing this now. I too making quite concerned for her nutritional status. Things are really not good right now and haven't been for a long time. I do put protein powder in smoothies (that she can't have now) and have learned in this thread that whey protein is not good for her, which is usually what I use...on the search for different. I learned here dairy-free Ensure is a thing now, so I'm going to get that. Might fill a little gap for her. You can tell as you mentioned it, yes, thyroid and adrenal do play in this for her. She is on full replacement thyroid meds and her adrenals test as overactive. She is a hyperthyroid person who flipped into hypothyroid at some point in later high school and basically has no function of her own anymore. She does test well for thyroid levels, that's good. One less thing to worry about. She gets the whole panel done and she is properly medicated for that. Rx for overactive adrenals was stress reduction (ha) and take up running.

Thank you jojo. I'm sending your rec over to dd. I'm hoping your son is doing well now.

ljwrar! Thank you for the shake rec!! Aren't we lucky to have these now. I hope your neice is healing and doing well. : (

Thanks yeonskky and outside. I really appreciate it. Outside, colitis. I am sorry this is happening to you. Ugh. You sound like you have a handle on it though. You give me inspo for dd. Thank you for writing in.

You know, wow. I am blown away by how many of you are or have suffered with something like this! Wow. This is a lot to know and that so many of you have worked your way out of it is also a lot to know. It's heavy stuff. That's a lot of suffering. I'm really sorry you had to find your way out of this. I just wish I could hug everyone. Ack. I've had my health issues and they have been mighty and hard to overcome, but my belly has been unbothered for but a couple days of my life. There is just something extra about belly distress and imo, it sort of pushes its way to the front of the line if we are being level here. I know I've said it alot, but I really am so appreciative of everything you've all shared here and you took the time...thank you. It's been a long road here for dd and I've been trying real hard to let her deal with this. In her own way. Mind my own business, and I have. That's been hard for me, but she's a grown up and I'm keeping out of her way. Um, but yea, after the endoscopy and nothing really being written in the gameplan here, I gave it a week of biting my tongue and seeing her suffer so much and still nothing going on regarding a path to wellness; I had to ask here. Y'all, together seem to have answers for a lot of things. I had to break my MYOB policy and get to gettin' over here. This group: good people. Heart heart. I wish there wasn't so much of first hand experience with you all. I had no idea so many people were suffering with this as well. Hugs

I had severe gastritis years ago. The primary cause was h. pylori, which I was also diagnosed with after many other missed diagnoses from other doctors. At the same time, I also had gallbladder problems. Had the same symptoms as your daughter: lost a lot of weight, couldn't eat, couldn't work, pain, and on and on. Finally saw the best gastro doc in the area and he diagnosed me on the first visit (and also took out my gallbladder). I was on antibiotics for the h.pylori for quite a while, but it seems to have solved those problems, especially taking out the gallbladder.

Apropos of nothing but I went down a rabbit hole and came across fecal transplants which I've never heard of before. It sounds yecchy but in some cases is really promising for gastrointestinal issues.

A group of us were hiking probably 6-7 years ago and one person drank out of a small waterfall. He wound up with Giardia which took quite some time to diagnose, went on a course of antibiotics and was pronounced cured. But since then he has had constant stomach issues almost like IBS but worse even though he now tests negative for Giardia. He is slight build and has lost weight as well. I don't know where he is on testing/results exams right now.

I haven't read all of the posts, but I've read most of them and I'm a bit surprised that her doctor hasn't recommended a nutritional drink like Ensure or Boost, etc. Those are not just for elderly people, they're for anyone who is having eating or digestive issues. I'm very concerned about her weight loss. Fermented foods and drinks are very good for the stomach and digestive system. If she doesn't want to eat fermented foods, perhaps drinking kombucha would be a better option. I hope your daughter can get an answer for her condition soon, and find a way to return to good health.

blfenton, yes, I've heard of those transplants by way of other dd who is a research scientist. She likes to joke around and say the whole family could use one lol. It's in jest, but in all seriousness, she says lives have been changed by this proceedure. I wish I knew how one gets from hearing about such a thing to get to the 'life changed' part. Even scientist dd doesn't quite know as one has to be hooked up with the right medical team, which obviously, we are not. I'm really glad you mentioned this!

Your hiking friend sounds like someone we know, doesn't he? hmm. I wish him good health coming along very soon.

Me too woodrose. Me too. Very surprised. At least it was brought up here on this thread. I've only thought of an Ensure type of product for the elderly until it was mentioned here. smh

We are kombacha drinkers here, but it's bubbly, so dd can't have those anymore and I don't think she better for it. Does anyone know of something similar without carbonation? Short of making our own scooby, which I wouldn't trust for pathogenic contamination probability...

edit to add, we have her old kimchi jars still in the fridge. She used to eat that too, but can no longer consume with what's going on with her.

I too Am so sorry your daughter is struggling through this. I will just pass along this gut dr in case it’s helpful. He has lots of online classes and video library.

I have learned a lot, but I am not facing the same issues as your daughter. He is in Charleston SC if you’re close.

https://theplantfedgut.com/courses/

Thank you legomom23. Very nice of you to share this doctor. She is not near SC, but I will pass the link on to dd. Much appreciated!

Has she tried Kefir? There are some non-dairy versions. Lifeway brand is pretty common in grocery stores but most versions are cow's milk and the flavored versions contain too much sugar IMO. There is a coconut milk version.

I have some dairy sensitivity but the plain Lifeway does not bother me.

I was diagnosed with Gastritis over 20 years ago with my first of many to follow EGDs with biopsies and tests for H-pylori (negative.) Blood work for celiac disease (negative) . I do have a small hiatal hernia All of this started shortly before I was diagnosed with RA. Once I started on medication for RA, I went into remission with my RA for a couple of years and all my stomach issues stopped too.

But as my RA progressed and none of the meds that I could tolerate kept me in remission, my stomach issues returned , but with periods of pretty mild and then a flare up of symptoms pattern. On my last EGD in February my biopsies showed that I now have intestinal metaplasia which can be a precursor to stomach cancer. I will have a repeat EGD next February with more biopsies.

I am convinced that my RA also triggered my gastritis even though I have never been able to find any documentation that there is a connection.

There is an autoimmune gastritis which can end up causing pernicious anemia and I don't have that.

For Celiac disease, if they see anything suspicious that looks like celiac disease in the small intestine , they will have taken biopsies during the Egd. Had they been positive, she would have been told.

I just had an abdominal CT. scan after my EGD .An abdominal CT scan will show stomach, heart, liver, gallbladder, pancreas, spleen, adrenal glands, kidneys/ureters, uterus/ovaries, abdominal aorta, bones, soft tissue. Pretty much everything.

I'm sorry your daughter is having to deal with this. When you can't eat without it causing pain , even if there wasn't an emotional component to begin with, there ends up being one. I hope she will be able get to the bottom of this .

I'm with annie, Stop the PPI (prilosec) It's a nasty drug and way too many people pop them like candy. It has not helped me and I think actually made my symptoms worse.

The gastro wanted me to take it and I said no. I am taking Pepcid. He gave me an Rx (cheaper than over the counter for me) for 40 mg, but after a few months taking it, it my stomach seemed to be getting even worse . So I've cut back to 20 mg and I've been taking DGL about 20 minutes before each meal and that has calmed things down a lot, however I can't eat anything crisp, like a piece of toast , or it flares up again.

ETA Someone up thread though that she had taken licorice root when she has issues many years ago. DGL is deglycyrrhizinated licorice . That is probably what she was taking. It is important not to take licorice unless the Glycyrrhizn has been removed

Wow Trapped. I'm so sorry you've had this and RA. I agree with you in that there may be an autoimmune component. On your next scope you will know more, it sounds like. I'm keeping good thoughts for you. You have shared some valuable information here. There's a lot to unpack and think over. I'm appreciative. I wish it wasn't so for you though. : (

So hernia again. Hmm. I'm wondering if any of you feel the hernia. Does a doctor find a hernia or do you each feel like a muscle has been pulled internally, then investigations follow. Thank you for pointing out about DGL. This is good to know.

You've been wonderfully comprehensive with your situation relay. Thank you. I wish you wellness.

Dee, yes, we have several kefir bottles in the fridge. She has found each of them detrimental. : ( Has to be the dairy even though legend has it, in kefir form this should not be the case. I am back from the grocery (whole foods) and looked for non-dairy kefir. I couldn't find any today but will look at a different grocery next time. I found lactose-free cream cheese in case she can tolerate that. I figure if she can, a few more calories smeared on a piece of celery. I did find what is labeled as cheese alternative for dd--hope she can eat that in small portions. It looks like shredded mozzerella should. I found vegan butter. Not the brands shared upthread but the one and only available today, so I brought that home. Hoping for an improved outcome. I am making Zalco's chicken/rice dish her son was able to eat, at the moment, minus lemon (for now). I am hopeful she will have success with tonight's dinner. I also got bananas in case she's not ready for this.

I will tell her again about Prilosec. Several votes here against. She did say this morning she is resuming taking the sucralfate (sp?) based on the advise here. Hoping the dr will renew her rx, because like several of you have said, Prilosec does not seem to be helping her. Maybe this is part of the reason she can't improve, like you've mentioned. I gave her a bottle of Tums. Thanks again to everyone. You've been very helpful.

Sea, I’m sorry to hear that. Your daughter is going through this pain and disruption of her life. But I’m glad she’s gotten medical care that looks like they have been careful to examine her attentively. I’m trying to remember from your first note, but did you say they did not find anything like gastritis when they did the Esophageal scoping? Or did she have any stomach studies such as a G.I. series?

I had horrible gastritis when I was younger. I don’t know if a lot of women are like this, I think a lot of people might be, but maybe it’s just me my personality, but I try to just plow through what was going on with me, thinking that I could just surmount whatever it was. That didn’t work out well. I remember one evening, leaving a play with a date, and I thought I was going to have to lie down on the sidewalk in Boston to get rid of the fire very intense pain in my upper abdomen. I had been tolerating it during the play, and during the preceding days and weeks, but sometimes it would become so bad that I had to lie down. I didn’t want to have to go to a doctor because I didn’t want to have to slow down. Yep that’s right. But eventually the intense pain caused me to seek medical help. And that was crazy because I was surrounded by hospitals and medical people all week every week so you think I would have a clue, but I think denial can be really strong when you’re young and busy.

I was put on a sort of bland diet, but again I thought I could be pigheaded and do what I wanted to do and it was really hard to avoid things like a burgers, french fries, coffee, chocolate, wine. And later I thought, well milk must be good right that all the help. Actually, not at all.

The pain and discomfort got so bad, and my condition did not improve because I wasn’t listening to what the doctor suggested. But I finally had to follow their direction. I learned a lot about gastritis and what foods I could eat and not eat and how.

It is not just the foods that seem acidic or not good that sounds like it would work, but there are foods that aren’t particularly acid but that promote and increase stomach acid. Those are the foods you want to avoid if you have gastritis.

If the doctors gave her dietary directions, I suggested she had here to that regimen. Or she could ask them for guidance. I would suggest she avoid coming up with her own dietary protocols for now unless she is given a lot of latitude by her physicians.

She also might find it helpful to keep a short diary, or log of what she eats and how she feels. That will help guide her, but it can also help the doctors better pinpoint the cause of her distress. Also, she should note if she feels better after eating.

There are foods that are known to produce stomach acid and to contribute to gastritis. You could probably look things up on a real medical site (not alternative).

I will list a issue of the foods that can increase stomach acid, and that she might want to avoid again follow her doctors instructions.

Avoid fatty foods, such as meat, butter, margerine, milk, cream, animal fat, fried foods, most dairy. No ice cream. No vinegar, pickles, ketchup, chiles.

I would not eat steak, (and also gravy), but instead have small amounts of poached, skinless, boneless, lean chicken, such as chicken breast, cut into small pieces or shredded. Stick to very bland foods with low roughage. Steamed plain white rice, plain peeled potato. No cream or butter or toppings, but a bit of salt if okay. Avoid fatty meats or food like liver, cold cuts, pate’ — just keep things bland, low/no fat and simple for a few weeks.

I’d be careful of Jello — avoiding anything with citric acid in it. (The citric acid gives me increased acid.)

Avoid sodas and carbonated drinks.

White bread or toast with no butter, no cinnamon, but simple jelly is okay.

I think 1/2 banana would be fine. But avoid citrus, raw apples, fresh plums, strawberries, grapes, anything tangy.

Plain water. Avoid coffee, wine, chocolate, peppermint, menthol, most juices, dairy, milk, cream, cocoa and avoid all alcohol. I don’t know about soy, but void fatty drinks and foods. Because avocado has a lot of fat (even good fat), I would avoid it.

Fatty foods and drinks cause one’s stomach to increase the production of stomach acid. Peppermint and other mint like substances also increase stomach acid. (And, so taking mint flavor Tums doesn’t seem prudent. Mint or citric candies or gum also avoid.

Stomach acid is fine when we don’t have an ulcer or erosion of the stomach or esophageal lining. Stomach acid is Hydrochloric Acid — HCl.

Medications like Prilosec are Proton Pump Inhibitors (“PPIs”). They help reduce the amount of stomach acid. (See that “H” in HCl? That is H+ — a proton ;-) [If I have this right.]

Eat small amounts and avoid lying down right after eating. Get enough sleep, relaxation, and exercise like walking (if that feel good any the doctor says this is okay.

Avoid any harsh medications such as aspirin, NSAIDS (Aleve, Motrin). Avoid any nicotine (increases stomach acid). Because Pepto Bismol (sp) contains aspirin, I would not take it. Maalox (plain, no mint) would probably be a better choice. She shold check anything like that with her physician/s.

This is what I have learned and it should not be construed to be medical advice. DD can check with her doctor/s.

I hope that your daughter feels better soon. I trust that she will be patient with her painful situation and with her doctors’ guidance will feel much better soon.

As someone suggested, she might find counseling helpful — both to cope with the stress of being ill and to take the opportunity to explore any physical or emotional stress or unrecognized conflict she might be experiencing.

As an aside, here is something interesting. Patients in ICUs (intensive care units of hospitals) can develop stress ulcers, even if they are not conscious.

Excuse typos and errors. I am hindered in typing.

Does your dd have endometriosis? Or been checked for that? There can be lesions outside the uterus & sometimes in or around the stomach. What has caused her excessive bleeding & being on BCP? I am so sorry she has been suffering with this. Any neuro testing done such as for MS? Our dd has MS, plus endometriosis, lots of gi problems....just some random thoughts. She had a hysterectomy & that helped her alot...again, random thoughts....

My friend, who is anti PPI's said it should stand for Pray, Pray Immediately! Check here for the side effects of PPI...https://www.medicinenet.com/proton-pump_inhibitors/article.htm

This article does state that rheumatoid arthritis is connected to GERD. DH's family has this and I have heard that before so went searching.

https://creakyjoints.org/about-arthritis/rheumatoid-arthritis/ra-symptoms/rheumatoid-arthritis-and-gi-problems-what-you-need-to-know/#:~:text=Gastroesophageal%20reflux%20disease%20(GERD),and%20dysphagia%20(difficulty%20swallowing).

Thanks yeonassky. I do read creaky joints from time to time but never saw this article. People think RA only affects the joints but it is so much more than "a little joint disease" as people used to say to me. I also have eye inflammation which has greatly diminished my tear production.

I have read somewhere that Gastritis is common in Lupus .

Sea Sea,

I wonder if she has had a CRP and Sed rate They aren't normally done. They test for systemic inflammation. That was how I was diagnosed very very early with only minimal symptoms. I requested them to try and convince the internist I didn't need to take a statin. My CRP was through the roof high, 11 times normal.

They are blood tests.

Like Lizzie, I was wondering about endometriosis. My mother had it and was sometimes hospitalized for mysterious stomach ailments. This was 30+ years ago so it wasn’t diagnosed until she had a hysterectomy.

I too wondered about endometriosis. My DN has it and it is another difficult illness that runs in our family on my side. The pain she goes through is horrendous. There is a treatment that costs more money than the family has but we are putting our pennies aside in hopes that we will be able to afford it eventually.

My DD used DGL as well. With good results I must say. DH did not have as good results but had better results with peppermint oil in capsule. However that is a very strong oil and with other problems not sure how you would approach using it.

I say if possible leave no stone unturned so I'm glad you are searching and researching and being a wonderful advocate for your DD. Best to you and her.

So sorry your daughter is dealing with this. Several years ago I had erosions in my stomach (pre-ulcer). Famotidine does not coat the stomach. It is an H2 blocker. If she has low stomach acid she should not take it. Sucralfate coats your stomach and the DGL will also. PPIs are not the enemy. They should not be taken long term if possible. For short term use they can be helpful. I took one (Nexium) and it helped with the healing of the erosions. I also took Famotidine and still do. I took sucralfate while the erosions were healing. DGL works great also and I keep it on hand in case something bothers my stomach. There is a german chocolate flavor tablet. They actually taste pretty good! I used to find them at The Vitamin Shoppe, but they no longer carry them. I find them now on Amazon. I hope your daughter soon finds some answers!!

Good news from the dinner last night. I made the chicken/rice soup dish Zalco mentioned, minus lemon. It came out really nice for one! But dd was able to eat it. I'm not sure what the difference was, but we'll take it! This was her first meal in a very long time. I'm on cloud 9 today and she's feeling less peaked having had a meal. May it continue.

More good news, GI appt has been moved from Oct-something to next week. Got a cancelled slot.

Endometriosis...She doesn't know if she has it. She's trying to find out if that is visable on a CT scan as no mention of it was made in her report. I'm glad you are sharing about this. We don't know much on this front, so your information is extra valuable. I do remember Lena Dunnham just about cutting the cord on life when she was suffering it. It sounds terrible to have. How sad for your family members that have it. So much to deal with. : ( Dd will also ask about this with the GI dr.

Lizzie_grow,

I am so sorry your dd has MS. What a terrible thing. My mom had MS among a lot of other things. drs have not suggested MS to dd, thankfully. But I've let her know of your dd's situation. The poor thing. Hugs hugs for her. Not fair. Why do things like this happen to good people.

She's on bcp because her cycles were backwards. Heavy bleeds for 3 weeks, then one week not bleeding then start up again. This went on for several years until I brought her a doctor who did test her hormones before starting the bcp and found dd had very low estrogens. Menopausal levels. Dr said being in a low E state causes the body to have a period. Dd didn't know she had fibroids until the full body CT scan though. Perhaps that is the reason for heavy bleeding. We really wouldn't know...I can see why thoughts here are going to endometriosis though. I think she would do well to talk with her gyn about this if that would be of help. Hoping that would be a good place to find out.

She's better for being on the bcp though. I'm not really a fan of bcp but they definately have their place in the world. One can't replenish that blood loss with only one week a month to recoup.

Thank you Annie. I'm hearing you : ) I'm passing it on to dd. She's back on her sucralfate now--thank you, and Tina and others for writing in. I'm so grateful for you all having had knowledge to share. She is still in taking the Prilosec though. She's afraid to stop that just yet. I know.

Petal, gosh, you too. So many here have suffered greatly with this. Thank you for your detailed list. What a help. I am really sorry you've gone through so much. You are generous for sharing your experience with us. Dd really connected to the being young and thinking you could power through it--then needing to roll up on the sidewalk. I'm so glad you have a handle on this now. Thank you for your contribution here. Gratitude.

I'm going to duck now and ask a question directly from dd to those of you who have suffered with this: "Are you able to have wine and coffee now that you are healed, and not be in intense pain?" Remember, I'm ducked down and I'm the portal through which she asks : ) My answer was probably not, but I haven't had this ailment like all of you.

This has been a lot. You are all so nice to help us along here. And, she was able to eat a meal last night! I'm so relieved.

Edit to add: Trapped, she can't find a test as you mentioned in her online file. She'll ask the GI dr next week if that can be run. I hope you are feeling alright.

I'm so glad she was able to eat and it's great that she is getting into the dr soon! She shouldn't stop taking the PPI without letting her dr know. She could talk to him/her about that at her appointment. I had no side effects from taking a PPI. Under a dr's care and for a period of time, they can help heal erosions and ulcers. Once my erosions were healing, my dr changed my meds. A PPI is something I would avoid taking if I could, but there are times one is necessary. I do believe fibroids can cause heavy bleeding. Both my mother and my MIL had them and had hysterectomies the same summer LOL. I would suggest her getting an appt. with her gyn to further check on that. I'm hopeful that you all are moving forward. Keep us posted!

Good to hear she was able to eat the chicken and rice recipe.

I was reading up on giardia because some people who went to a recent music festival (glad we did not go this year) seemed to get it there, and it apparently can cause IBS as a long-term side effect which I didn't know. There were people who attended the festival with giardia for sure (like C, didn't think it would be a problem!), but there may have been contamination from a water bottle filling station (or other sources which I will spare you the gross details).

I have heard of endo migrating throughout the abdomen, so that could be something to look at.

So happy she was able to have the meal!!! GYN would be the way to investigate endometriosis & I also think it would be worth it to get her inflammation markers checked as mentioned by another poster. Those are blood tests. Some autoimmune issues have kind of vague symptoms that at first glance would not seem related. I would ask for an ANA, CRP & ESR. In her previous blood work, they may have done these, but I kind of doubt it. Look up hyperparathyroid symptoms & see if any of those apply. My sister had a terrible bout with hypo thyroidism which then became hyper plus parathyroid disease that required the removal of two of four of those glands. During that time, she suffered from very problematic gi issues & could hardly eat & lost alot of weight & she was already very slender. It was quite an ordeal for her. She is 88 & stable now. She also changed her diet to gluten free (allows herself to have some now), took dgl.

Again, I am so happy for her & you that she was able to have the soup!! It's so hard watching your child have health issues & walk that fine line of overstepping & detachment, isn't it?? She is very lucky to have you though!! All the aunties here care about her & you!!

I wish that I had something substantial to offer, but this kind of issue is outside of my (and my family's) experiences - except for the thought to get a thorough workup, with a rheumatologist, for an autoimmune disorder. And my sincere wishes for a resolution, and a prayer for healing.

I am curious - did no doctor have anything to say about the enlarged liver seen on CT?

Last year I had been quite uncomfortable for a few days with gastric distress - nothing near the severity of your DD's or what others related above - but still, not eating because of it. My DD brought me some Navajo tea aka Greenthread tea - which brought me relief in minutes, no exaggeration! Perhaps look into that, making sure that there are no reported interactions with other medications or treatments (carafate, although very useful, can be difficult to work around IIRC - I recall having to call the pharmacy to have them reschedule med dosing for patients who were on it, and it seems to me that there were some that were rendered ineffective if given within so many hours of a carafate dose).

Yes, enjoy those baby steps, one meal at a time.

There is no reason to do the ANA at the time her inflammatory markers were checked. ANA is for Lupus. ANA would be appropriately done ,as would two tests for RA and perhaps other auto-immmune diseases , only if her Inflammatory markers were elevated.

The Gastro. may be resistant to ordering them. It really isn't his area of expertise.

But on down the road if she follows all his recommendations and doesn't seem to be getting any better then I would probably have her ask her primary care Physician to check those.

I was able to tolerate wine occasionally and one cup of regular coffee in the morning (no more) when my stomach was behaving.

I wouldn't have either in her case until her situation calms down completely.

When she gets to that stage, she will be able to tell if it bothers her or not. With the wine probably pretty quickly, but with coffee she may be able to drink it a day or two before she notices whether it will bother her.

In flareups like now for me ( going on a year ) I don't drink either. And I probably won't drink either anymore now that I have these cell changes .

This is what Medscape says about seeing endometriosis on a CT Scan.

" CT scanning typically is not performed in the radiologic evaluation of endometriosis because the appearance of endometriosis and endometriomas on CT scans is nonspecific. If CT scanning is performed, endometriomas appear as cystic masses. .

So it seems that there would have been a mention of some sort of irregularity.

Medscape said the gold standard for diagnosing emdometriosis is a laproscopy

I am so sorry that your daughter is struggling, Sea. It sounds awful. I have no advice, but I am sending healing energy and prayers for answers and a treatment plan that helps her.

So glad the chicken and rice helped.

Trapped mentions wine and coffee as being intolerable to her. I have pretty bad acid reflux and have had it for years. I take prescription meds for it.

Here is what I’ve discovered about wine and coffee. I can tolerate decaf coffee without dairy. Dairy exacerbates the acid reflux. I can drink a cocktail or a mixed drink with fewer problems than if I try to drink wine. Interestingly, a member of my cookbook club has the same response. I also avoid anything carbonated.

My mama heart heart hurts for you Sea Sea. I don't have much to say except to ask the MD at what point would a PICC line and IV nutrition be considered. With her weight loss and lack of caloric intake and nutrients this doesn't seem out of the question. Hugs.

Sea Sea,

You’re welcome. I’m glad that you reached out — as you said, a lot of experience here.

To DD — Of course, I can eat lots of things and things I probably shouldn’t. Once I followed my doctors guidance (believe me, I resisted — I wanted to work under pressure, get little sleep [not a party type, but just living while early 20s], I got better quickly.

I loved a few coffees and sometimes a glass of wine. Getting together with friends. I had a very busy life and my work was fast paced and with a lot of responsibility. Then there came some decisions I had to make and some conflicts. I was like a lot of young oeople, I suppose, and had no idea I was so conflicted. But guts and heads have a way of getting our attention. Don’t want to pay attention? Gut and head ups the volume, until you listen, maybe slow down and tune in. You’ll have to admit, grabbing your upper abdomen in pain, nearly having to collapse onto a sidewalk on an otherwise lovely evening in front of theater goings and a cute date —- it does get your attention.

I wasted a lots of weeks (months?) trying to avoid my reality. I insisted that a bit of coffee (I love coffee) or a couple of fries or an icecream would be okay —just a little bit. A whole bottle of Maalox wouldn’t fix what I’d messed up ;-)

This was before PPIs and way before Dr. Barry Marshall purposely infected himself with the ulcer-causing bacteria Helicobacter pylori, that helped him establish that a bacteria could cause gastric ulcers. He won the Nobel Prize inphysiology for his discovery.

https://en.wikipedia.org/wiki/Barry_Marshall

https://en.wikipedia.org/wiki/Helicobacter_pylori

I eventually stuck to the gastritis-ulcer diet, slugged Maalox and cooled my jets. I took some time off and learned to sail, then moved and went back to school.

DD, you can do it! And after you raw stomach lining has healed properly (with the help of your coming up with some creative ways to get out from under all that pressure, you can once again enjoy coffee, chowder and wine (maybe not all at once, ha ha). A dear friend is a teacher and she loved teaching children and is great at it and her kids love her. However, she has encountered bad administrators, troubled school systems, kids with probelms (city/inner city), ‘politics’ and sometimes parents with bad attitudes. The girl has needed wine, tears and long phone calls and dark humor to sometimes cope. For the past five years she has worked at a fantastic school. She loves it and they appreciate her and the students are fun and she is loving teaching them.

I hope DD’s stressful career environment changes soon. Teacher’s are not valued enough in our culture (in the majority of places). They are asked to do so much beyond their commonly described roles. And with all of that, it is truly tough when the school system and various politics and machinations add to the burden. I guess it could be worse. Immagine being a teacher at one of those Houston elementary schools taken over by a superintendent from Dallas. The fired librarians, got rid of books and essentially made the library a sort of detention camp. Sort of like the way some of the new regimes in china and vietnam back in late 1970s had ”re-education camps.”

DD should keep the faith. She has (it seems to me) a team of good and capable doctors. Do just as they say. Don’t go off on distractions exploring whether or not she has some other ailment. They found she has gastritis (which is better than an ulcer)Think of it as Pre-ulcer. Gastric erosion —- like the insides of her stomach and environs were powerwashed with lots of extra strength hydrochloric acid. To DD, it must sometimes feel as though her gastric muscosa had been sandpapered or that she’d eaten a glass sandwich by mistake. I know that feeling. Much better now. Years later I did get tested for H. pylori and it was negative.

And THANK HEAVEN for PPIs like Prilosec and pantoprazole. Yippee! Please keep taking them, DD, as your doctors have prescribed. Stay on course.

With any medication there can be side effects. Someday read one of the long, multipage, very fine print information inserts. Anyone can drive themselves into a panic looking at the all encompassing ”possible” side effects. Not probable, but possible. (I could possibly grow 24 k gold hair from a thyroid pill, I suppose. But it not at all probable.

Drug manufacturers are mandated to list every and all reported and observed side effects. But they also (you will see if you read one of those complex inserts), must compare it to any perceived or experienced side effects from those subjects given a placebo. And, guess what? See what’s coming? Those given placebos in double blind studies often report all sorts of side effects. They do (the subjects do not know if they were given the drugs or a nothing pill). Some in the placebo group will reports such things as headache, indigestion, nausea, ache in little toe, and so on,

Researchers and scientists and clinicians compare the various statistics and side effects of the drug group to the placebo or control group. What is out the placebo group 10% of subjects developed a headache. And with the group given drug X, 10.2% complained of getting a headache? Well, that’s pretty good, perhaps.

Hundreds of thousand of people take PPIs like Prilosec (omeprazole). Maybe millions, zillions.

It is well tolerated and a huge benefit to those with gastritis, ulcers, or GERD (Gastroesophageal Reflux Disease or ”heartburn). I am sorry to hear that some here have not found it helpful or had an unacceptable side effect. But if DD is finding it helpful, I would continue. Certainly discuss any apprehension about it with her medical team.

Here is what I made for lunch. Baby Bok Choy stirfry (I added a bit of spice).

Baby Bok Choy, 3 oz ground lean pork, red bell pepper, garlic, ginger, soy and oyster sauce, toasted sesame seed oil, canola oil, green onion and sesame seeds.

There is life and joy and yummy food after an episode of gastritis.

PS I thought of a few other things DD can eat: winter squash (you can put a bit of maple syrup on it, but skip the butter and pepper). Tapioca pudding (a bit of skim milk or non-fat phony milk.

Thank you all. Just amazing the knowledge here. Dd and I are very deeply affected by your kindness and willingness to share on her behalf. Thank you. So very much. I do wish you all didn't have this much first or second hand experience with this though. It hurts to know so many of you have really, really suffered with this. : ( Sigh. Really, seeing dd go through this for so long now, I know how hard this has been for you. Hugs to all of you. And respect for getting back to a place of more comfort! It seems so far off for dd at this time. I have faith that she will improve like so many of you have. And Jilly, it special kind of hurt to read your journey. I'm so sorry dear Jilly. It's not fair. I hope you continue to heal.

Petalique, your words in your last post strike a 'that right there' with her. btw, the school library was recently stripped down and unstaffed then turned into something not needed. Things like this, and worse upset her. She is living through a systematic dismantling of what used to be a nationally recognized well oiled machine/school district. Her stress is high. More than half of her students are at high risk and in need.

Dd is reading and taking in your experiences. She's started taking slippery elm and will take marshmellow root after she feels she put enough time in with slippery elm to know she's not having a negative reaction. She will inform the GI dr of supplements she consumes. She's making a list of what to discuss with the dr. She also is awaiting DGL caps or tabs for when that can safely be worked in if she's headed that way. She's still taking all her meds that have been prescribed. Rnmom, thanks for the heads up on picc line. Yes, there is that if she can't eat enough in the near future. I'm glad you brought that up. I needed to know that.

This past weekend was not as good as she did on Friday, I think it was, with the soup. But at least she did consume a little bit of bland soft food like rice and banana, so I'm relieved about that. Pain is level 5 which she now feels is a progress is being made state, compared to where she has been. She's seeming to do well with naked sweet potato. She's had a couple of them since I last wrote in. Small portions of the soup when she is able. It sounds poor, but I'm keeping in mind this is an improvement from where she has been for too long--so baby steps, right?

This thread and your contributions are a wealth of knowledge and help. I wish I could properly express the gratitude we have. Thank you, all of you, so very much. Your kindess has been received and it is so appreciated. Your good wishes for her are being felt. I'm grateful. ((hugs)) heart heart

Did they consider fatty liver disease? Did they check her liver enzymes?

https://my.clevelandclinic.org/health/diseases/15831-fatty-liver-disease

Sea Sea, you could almost be writing about my daughter (soooo many women seem affected by this?); she's been through the mill twice now, each lasting 2-3 years. I have heard of everything I read here, most of which she has tried. (She hired a nutritionist whom she sees via zoom and who has been most helpful.) (Fodmap--yes!) There are stages in which you can eat/not eat certain foods but through it all, my darlin', who despises meat and who has been a vegetarian since she was in middle school, drinks chicken bone broth every day. She has it down to a science, using a straw towards the back of her mouth, fingers plugging her nose, water rinse-out and Listerine rinse-out. She does this in order to keep her protein levels up when she can't have beans/lentils.

There are many people who do not have colitis but have determined that eating non-organic flour brings on the pain. When dd went to Europe, she ate bread to her heart's content and had no problems at all. (I blame Monsanto for screwing up the grain seeds.)

I truly could write a book, though she would do a better job of it. It's been a journey and we think she is on the rebound with her last bout, which was brought on by the stress of having a cyst on her pineal gland. This was removed a couple of months ago and she's a new woman. She will always have to be careful about her digestive condition, but between bouts she was able to eat normally. My daughter also has spent years dealing with anxiety and ocd, and is doing so much better now on the lowest dosage of an old anti-depressant you can get.

I really feel for you as you watch your daughter suffer and lose weight. The weight will slowly come back as her condition improves and she learns which foods might set her off. You've received much good advice here and wish your daughter much better health very soon.

Just wanted to mention this about DGL It needs to taken in chewable tabs.

"To be effective in healing peptic ulcers, it appears that DGL must mix with saliva. DGL may promote the release of salivary compounds, which stimulate the growth and regeneration of stomach and intestinal cells. DGL in capsule form has not been shown to be effective.90, 91 " https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7348626/

Eileen, her primary care dr told dd that the enlarged liver is nothing to worry about. I disagree, but I don't get a vote in this. I sent your link to dd for reading. I don't know if they checked liver enzymes.

An update.

Dd had follow-up appointment with GI dr. Said it was very quick. GI dr asked how she had been feeling. Dd told her. GI dr said, then we will schedule a gallbladder scan. Dd told GI dr she had resumed taking sucralfate. GI dr was not pleased as the dr had told dd to stop taking it after endoscopy was performed (no ulcers detected). However, GI dr agreed to renew prescription for sucralfate. Dd is taking slippery elm, dgl chewable and has marshmellow caps. She's giving the first two supplements time to see how they work for her before starting marshmellow. GI dr doesn't like supplements. Dd told dr she will continue taking them as she's not improving otherwise.

Dd asked about food allergy testing. Was told she would be set up with allergist for testing. Could take 3-6 months to get appt. And that was the end of the appt.

I thought she had noticed an improvement — from a ”10” pain to a ”5”? If so, that is quite an improvement. There is no quick fix. Be patient and stay the course.

Has she been adhering to a gastritis/ulcer diet — I pretty much outline it in my first long post. Low, very low/no fat, no caffeine, no alcohol, no carbonated drinks. PPI, maybe Maalox if prescribed. No spicy foods (they increase/stimulate stomach acid). Avoid things that decrease the pressure of the esophageal sphincter (that will allow more stomach acid into the esophagus). Avoid chocolate, mint, spices. No smoking. Small meals. Adhere to her doctor’s directions and instructions and consult with him before changing anything or adding anything, even supplements.

It may not be exciting or fun, but I suggest sticking to a simple bland, gentle diet. Plain white rice (steamed or congee), plain potato or white bread, no butter or cinnamon or spices. No fats like gravies, sauces.

I may have misunderstood, but I thought her diagnosis was gastritis as demonstrated on the exam (scoping). Does she have other issues and it that why she wants to continue investigating? Gastritis can be a painful situation but it’s better than an ulcer. And the remedy is pretty simple. It takes time. If she is experiencing a lot of stress, counseling might be beneficial and she might also want to explore simple (free cheap) meditation or self hypnosis.

The issue with dairy when one has gastritis or an ulcer is not ”intolerance” or ”allergy” but the animal fat which increases stomach acid and also relaxes the lower esophageal sphincter.

Again, it may not be exotic, but I strongly suggest she sticks with only what her doctor says and give it time. If he does not want her to take supplements, then she should not take them.

Most supplements are not controlled or regulated. She can get a thousand opinions, but if she is under the care of this doctor, IMO, she should strictly follow his directions. Communicate with him before trying any other medications or remedies or supplements.

I hope she continues to improve.

PS I subscribe to science-based, evidence-based medicine

Hi petalique,

She is still at a level 5 for pain. She had been at a 9 before medications - sucralfate and prescription prilosec. She's staying steady at a 5. Still painful, but you are right, it is an improvement. Thanks for the reminder.

She is still on the gastritis diet. She appreciates your posts. She's impatient at this point and taking supplements as she's been at this level for quite some time now. The continued testing is because GI dr feels that dd should be further along with healing and improvement than she is.

Aww, SEA. I’m sorry the GI visit didn’t yield more answers, but hopefully it’s a step in the right direction. I know how hard it is to see our babies suffer. Biggest hugs to you both, and thanks for keeping us updated. ❤️❤️

Does she knit? Sometimes getting lost in a quiet creative endeavor like simple knitting or quilting can be very relaxing. I met an architect who hand quilted on her train commute. She found it very relaxing while challenging and fulfilling.

Knit, crochet, embroidery, hand quilting (paper piecing is often done as a take along even by quilters who do a lot at the machine), tatting, doddling, drawing, coloring -- all good things for stress relief.

I'm no help here, but I've known a number of young women (older teens to twenties or so) who have had all kinds of internal pain and GI issues that have been difficult to diagnose and treat. Wish I knew if there was any common thread and what it was. Hope she gets some answers and more relief soon,.

Since I don't know anything about gastritis, I did not read this thread until now. I noticed it was hanging around so I decided to see what the discussion was

First, I am so sorry to hear this new about your DD, @SEA SEA. It must be so draining and so scary. I hope she gets better answers soon. I am also so sorry to hear how many others have suffered.

I think I mentioned a while back, I was cooking dinner for a friend on a FODMAP diet. She later told to me a friend had made her clam chowder with coconut milk. Someone mentioning the green tops of onions instead of the white here reminded me of this (she used chives in the chowder). Anyway, LMK if you want the recipe.

Hugs, everyone.

Thanks everyone. Sorry for the delay in responding. My head is full these days and had to spend the last two days unloading my computer of excess weight. Last thing I wanted to do, but now computer seems to be behaving more like its old self.

I really appreciate the advise and well wishes. I'm passing it on to dd. She's surprised to know so many of you and your loved ones have had to overcome this. She is trying believe that she too can improve like a lot others have.

Yes, the clam chowder recipe would be great, if you see this mtn. Thank you.

I don't want to mention the name, but I got a notification that someone made a post on this thread, but I'm not seeing it here : ( I was looking forward to reading it. Not sure if it went poof or if the person removed it. But thank you for taking the time to write it. Just wish I could see it.

Happy news to share for those of you following along. Perhaps being back on sucralfate, or the two new supplements shared here, not sure which is in play, but dd has reported less pain in the last two days. She's very relieved. May it last! The nature of this seems to be hit or miss, so hoping she continues in a positive direction.

She did teach herself to knit for stress relief a couple years ago, but hasn't been able to bring herself to pick it up again this year. I wish she would, but...

When I was at an unhealthy work enviornment for a few years, I crocheted a lot of hats, scarves and a large blanket. I found it to be a sanity saver, so yea, I wish she would pick up knitting again. Maybe she will in the near future. I leaned heavy on crocheting to help me get through that troubled work environment.

Hugs to everyone : )

I am so very sorry your daughter is going through this. Prayers for her and you and that it resolves somehow someway.

Sea Sea, glad to hear little sea sea had a couple of good days.

Maybe it’s just as well you didn’t have sharp pointy knitting needles at that hostile work environment.

I had some simple meal that SeaSea_ette might like. Small plate of plain pasta (angelhair or spaghetti) with just a little bit of freshly grated parmesan sprinkled on it —1/2 teaspoon. Really good. And for dessert, a half of a canned pear in light syrup. Water.

BTW, a nice way to have water (or iced tea someday when she’s healed) is to put a small drop of quality culinary rose water in the glass of water. It must be culinary rosewater.

Sea Sea,

Here you go:

https://getinspiredeveryday.com/food/creamy-dairy-free-clam-chowder/

In my friend's case, she find white onions and garlic irritating so she subbed fennel and the green tops of spring onions.

My FODMOP friend can’t have garlic or onions. Like Mtn’s friend, he subbs the green tops of spring onions for onions. For garlic, he can tolerate garlic-flavored olive oil.