Dealing with multiple GI issues

Thank you for the tips. Established her with a patient ID today so now need to go through the referral process of getting her in. These tips will help to get her by until she can get a doctor that can truly help her.

@jwool89

Along with small meals .. 4-5 or more a day .. have her keep a journal. It can help with finding triggers for her pain .. after eating certain foods or exercising or taking medicine or stress situations or simply bending (like doing laundry or tying shoes).

This is great. She is seeing a dietician who has been great about adding fermented foods & making her eat immune boosting foods. She had been prescribed antibiotics which did not help at all. She started a journal three weeks ago. She had issues with formula as a baby & decided two days ago to give up dairy after feeling awful following consuming Skyr. I think she may be lactose intolerant but not sure how you know for sure. We’ll see if that helps.

Hi there, I'm beginning to think that the DRS are less than useless. What genetic condition do you have? Any autoimmune diseases? You said food tests and celiac look normal. Have either of you had an endoscopy with biopsies tested at a pathology lab?
I have plenty of severe GI issues that no dr. and no meds help. I have Celiac with severe villi destruction, yet I am asymptomatic on/off gluten; pSS, primary Sjögren's syndrome, this affects SO MANY OTHER BODILY ISSUES, not just dryness. My pSS is increasing lymphocytic infiltration in lungs and pancreas (due to pSS), CIC -completely Treatment resistant for 17 yrs. I have to keep my poop very thin with miralax. I am 65, fighting everything for 15+- yrs.
If you want to, what are yours and your daughters symptoms? I am just another sufferer like you guys... but maybe we have ideas, from trial and error, that we could share. Take care, Shelley

Oh wow I never heard of this and I am sorry you have suffered so long. Ours is called Alpha-1 Antitrypsin Deficiency and it affects mostly lung and liver but also many other organs in the body. Not technically autoimmune but there are similarities. All of the women with this gene in our family have lost their gallbladders. My issues are esophageal & just discovered I have a small hiatal hernia on top of severe asthma/allergies/sinus. My daughter has severe stomach pains after eating, sometimes gas & bloating. Diarrhea only sometimes. Also major sinus issues. She has been off dairy one week and I am suspecting lactose intolerance. What is the test for that? She has been allergy tested and is not celiac. As for me inflammation is my biggest problem (I get a lot of pain in neck & shoulders). I am still trying to figure out what foods cause it in me the most. Mayo Clinic is allergy testing us both end of July & very happy we are both visiting GI too. I now know how impossible it is to see GI.

Did your daughter have an endoscopy to rule out celiac? For the lactose intolerance, you might try NOT ANYTHING with lactose, it sneaks into many foods and medicines. Or, try using Lactaid, it supposedly cancels out the lactose, I don't know, hey, thanx, you reminded me of something I DO NOT HAVE, that seems rare. On the severe gas after eating, I suffered with that as far back as a teenager. I got to a point that I didn't even want to go on a date, if a meal was involved. I learned about Activated Charcoal years ago and I am never without it. It's cheap, zero side effects, no bad taste.. but it needs to be taken away from any other meds, cause it will be trying to absorb the gas and the meds too. I take 3-6 capsules depending on how bad the pain is. Drink lots and lots of water with it, you need to get it down to your stomach as fast as you can, you don't want it dissolving in your throat or esophagus. I use a heating pad too. I had horrible period cramps, my mom had me use it, curled up with a pillow and, this is a weird one, keep your/hers feet warmer than usual. I don't know why this helps but it does. Tell your daughter I will swap my 💩CIC for her diarrhea, at least for a few weeks we could both get a break. 🤪I have no idea what you're family alpha-1 ...is, I will read up on it. Inflammation, I think, plays havoc in almost every aspect of our body troubles. Ginger, turmeric/curcumin are all good but, I have learned it really needs to be pharmaceutical grade and very reputable company. I add ginger plus Phenergan for my nausea from migraines, it helps... but again lots and lots of water. Don't take it if you feel like you really might 🤮, it 🔥coming out your mouth. My hubby started Krill Oil, Kirkland brand at Costco, 500mg 1x daily, he has noticed that it's helping with his inflammation. He rarely uses any supplements ever, so for him to get a benefit from this means something, I am going to try it, after my parathyroid surgery is over, I just can't add anything else to my body right now. Oh, you mentioned that you have a hiatal hernia, me too. My dr said leave it be if it is not causing problems, I was skeptical....then I read a post here, 2-3 different people had surgery for it and maybe another problem, anyway their stories were pure HORROR. The fix involves attaching body parts to the stomach or esophagus and their stories scared me far away from surgery. I had an inguinal hernia at 16, very odd for a teenager and even odder for a female. But it was nothing like the hiatal surgery. Pain in your neck and shoulders, why is food involved? Have you had a recent MRI? I have primary Sjögren's syndrome, it causes a lot of joint pain, whole body. It also has been causing my discs in my neck, other places too, my discs are disintegrating, bone spurs (osteophytes) are on the C-4,5,6 vertebrae in my neck. Best I can find has been a very intelligent and gentle chiropractor, heat, never reach out, high, or low, the pain shoots through my neck and arms like being electrocuted. I have seen 5 completely different chiropractors, who knew there was such a huge difference in treatments. Shelley

Gastroparesis ? means Slow emptying. I see GI this Tuesday to schedule test. 2019 diagnose gastroparesis. 2022 diagnose Chronic Gastritis. My Chart is extremely helpful. Know what drs do not tell you. I got off Colesevlam & dicyclomine for diarrhea. If you get this let your dr know when you have accomplished Stop. I told mine in 12/2023. he didn't listen. 4y's diarrhea turned to constipation entire 2024. w stomach Distensions so huge, look & feel 10 mo pregnant. Painful. Maternity tops at 66yy. Last 3 weeks got off GERD med., Fiber supplement & try anything to help go. I bought 8000mg Artichoke & take 1 a day w meal. I'm day 4 w going every day. Relief.

Hi,
After having all those symptoms for years and been poked prodded and investigated from both ends, all manner of diagnosis have been theorised through my journey, with no actual proof to back them up. Latest diagnosis is Autonomic polyneuropathy (ANS) which gives me SIBO regularly. This came about from gas testing the stomach, finally some hard evidence. It took an astute ED Dr to recognise the Autonomia symptoms, otherwise I would still be none the wiser. With no treatment for ANS I have been able to throw away all the medication that was supposed to deal with the symptoms and now concentrate on SIBO medication when required. With no hope of stopping the symptoms I'm left dealing with them as best I can in my own way. Whatever works for me is what I do to get though the days. Having good days is now a thing of the past with each day a challenge to get through. Some days it is sitting it out waiting for a "better" day to come. My days are spent trying to manage the corrupted digestive system which has become a permanent feature of life for me and trying to ignore the other symptoms ANS causes randomly. I'm left in limbo unable to get the help I would like, but acknowledging that there is no help available anyway. All I can do is wait for ANS to stop the heart and end this invasive disease.
Cheers

Please keep me posted on your condition. I was diagnosed with gastroparesis about eight months ago. I have always suffered from constipation and now it is horrible with gastroparesis. They don’t want you to eat any raw salads, nuts, fiber, etc. I had a fun application operation for years ago and they cut my esophagus and I think damage my stomach. I had it because of heartburn now the heartburn is back and the constipation is horrible. My food stays in for a couple of days at least and, like you I have the swollen stomach. I am now taking lactose every eight hours sometimes it helps they called in a new drug for me, but I found out it was 500 of month and I can’t afford that , so still trying to figure out what foods I can eat that don’t give me heartburn or make me so bloated

@bmtrumps hi, shawnkthryn here. I've gotten off all supplements. Mirilax, Metamucil, the bottle w a purple cap. GERD med stopped 3-4 wks. Four days w regular bm. Tonight 1st time I'm w D since 12/12/23. I'm eating sunshine bars. Peeled potatoes, carrots w ginger (for pepper) & Lil bouillon. Stopped all spices incl s&p. Squash, sweet potatoes. No seeds, no popcorn, no preservatives no meat. Boost 30g protein 2-3 a day. Drinking juice diluted w water. Gastroparesis- slow to empty; I'd only go 1x wk - 10 days. Trying to get my biological clock working w o all the taking stuff everytime I turn around. Let you know re my appt this Tues. & food emptying test. Wish you the best. Oh stop rice & corn. Can fruit & can veggies. I'm at 83#'s. Was 105 wt prior to all the crap.