Should I consult a dietician?

[Abe]

I'm wondering if anyone here consult a dietician to help with stomach issues.  I have tried so many things diet wise and nothing has worked.  I and very frustrated right now. Just don't know if it worths the expense. 

[Pistol]

@Abe - yes, I consulted with a dietician when dysautonomia caused a lot of GI issues. The dietary changes she suggested were really helpful. Following her advice my symptoms ( severe reflux, constant nausea, IBS, duodenal ulcers and Barrett's esophagus ) greatly improved! Here is what I have been doing: 

- avoiding large meals and eating 6-7 snacks or small meals a day. Avoiding drinking with food but do it before and after. 

- no raw fruits or vegetables, only steamed or cooked. She said to drink the liquid that I used to steam or cook them since it contains nutrients that "washed out" during the cooking process. 

- no citrus, spicy foods, acidic foods like tomatoes or anything vinegary. No alcohol or sugary drinks. ( I tolerate carbonated beverages but many people should avoid them too ). 

- Low carbs ( that is for POTS, to avoid post prandial crashes ) and high protein. I eat a lot of meat and beans and eggs. 

- Avoiding eating after 7 pm. 

A nutritionist or dietician can be very helpful in developing an individual dietary plan. Hospitals have dieticians on staff that usually accept pateints for a consultation, that is what I did. 

[Abe]

@Pistol - Thank you so much.  That is very helpful.

[KiminOrlando]

Have you been to a gastroenterologist? Have they ruled out gastroparesis by doing a test where you eat eggs (or something) with some kind of nuclear reactive powder in them? They follow the glowing eggs through your system for several hour to make sure your stomach works properly. It took 4 gastroenterologists and 12 years before I got the test. Doctors kept telling me to increase fiber, but turns out that makes my gastroparesis worse. 

I didn't have luck with a dietitian, but it was because I had been misdiagnosed. I hope you find answers for your situation. 

[Abe]

Thanks @KiminOrlando.  I will talk with my doctor about that.  Sometimes it just feels like we are just going through the motions when I visit the clinic.  The pain I go through everyday and every time I eat something just drives me nuts.

[Random-Symptom Man]

@Abe - Sorry to hear about your stomach issues. All of us are different and weird.

I talked to a dietitian. Unfortunately, she wasn’t familiar with dysautonomia. She recommended everything she recommends to everyone else. I found it less than useful. But if you can find a dieticians who can work with you, it could be helpful. I had much more luck with other docs.

Below are some thoughts. You may know all of this, but in case you don’t:

Have you had a colonoscopy and/or endoscopy? Not fun, but these can help rule out a lot of issues like ulcers, parasites, growths and more. Mine was clear, but it made the doctors look in a different direction.

Do you keep a food journal? There are only a few things that I need to avoid, and a food journal highlighted those. It is annoying to keep track of your GI symptoms including bowel movements. But it was helpful for me. A detailed food journal also helps them believe you (I hate when doctors don’t believe me). It might come in handy for a dietician as well.

Have you looked at what is in the medications that you take? As an example, I found out that I am allergic to Sodium Lauryl Sulfate (SLS), which is common in toothpaste. It gave me canker sores. It turns out that SLS is in almost every med that really hurt my upper and lower GI. You can check what is in your meds on https://dailymed.nlm.nih.gov/dailymed/

Do you take probiotics? I switched probiotics until I found ones that worked for me.

Do you have allergies or constant nasal issues? My GI got much better once I started taking prescription strength nasal spray (olopatadine). post-nasal drip was a huge issue for me.

Like @Pistol said, more frequent small snacks helps me. I can’t binge eat. I can’t drink more than one unit of alcohol in a week, and that has to be hard liquor- not wine or beer (more sugars and other chemicals). I miss wine and beer. I can’t eat lots of sugar, but I can get away with small bits of dark (75%+) chocolate. Spices go through me like Draino. Caffeine also hurts.

Another really important factor for me is sleep. This sucks because an upset GI makes sleep hard, and lack of sleep messes up my GI. Vicious circle.

The gastric emptying study that @KiminOrlando suggested with barium came back normal for me because I had an oddly good GI week that week. But fortunately my notes where good enough to convince my docs that gastric emptying was an issue for me.

I still fluctuate between diarrhea and constipation, but it isn’t as severe, and I have more time in the normal range.

I hope you find relief.

[Abe]

@Random-Symptom Man, I am very grateful for your comments.  I have never had a colonoscopy and/or endoscopy.  I am a little scared of it.  I have had a barium test and that came back normal.  When all this first started, it was a GI problem that got me prescribed a double doses of antibiotics.  I had a swollen intestine from an infection which ended up being H. pylori.  My doctor then scheduled an endoscopy but was cancelled because I had a low potassium level and apparently, it increased my risk of something going wrong during the procedure.  It was after all the antibiotics that my POTs started.

As far as medication goes, I only take Lorazepam.  My anxiety has gotten the better of me to the point that I am scared of taking any medication even something as safe as probiotics.  Even taking the full dose I was prescribed (1mg twice daily) has been too scary for me to do.  I just break the pill into half.  I bought one (probiotics) again recently and left it in the refrigerator because I wasn't sure what side effect was going to come out of it.

As far as food goes, I tried doing a food journal thing before but didn't last long.  I don't drink alcohol.  My favorite drink was Dr Pepper and I gave that up. The only thing that was different in the last couple of weeks was me eating Pho Soup more often than usual and I did that because bone broth seemed to help my stomach.  Not sure if there was something my stomach reacted to in it. I have constipation all the time but my main problem is the burning pain and spasm.  Oh, that has been horrible. 

Sleep for me has been another major issue.  I rarely get six hours of sleep.  Most days I just wake up at 2, 3 or 4am and then can't sleep again.  Even with Lorazepam.  Above all, thanks for your reply.  Really appreciate it.  I will take a look at the website to see if my med is causing me this pain.

[Pistol]

8 hours ago, Abe said:

When all this first started, it was a GI problem that got me prescribed a double doses of antibiotics.  I had a swollen intestine from an infection which ended up being H. pylori. 

Abe - I know of people that developed GI problems after heavy antibiotic doses. I agree with what others have said - an EGD would be most important in finding out what causes your pain. Did you finish the H. Pylori treatment and did it help? I had it and the first course of medication did not help, so they gave me a different course which helped. 

 

8 hours ago, Abe said:

My doctor then scheduled an endoscopy but was cancelled because I had a low potassium level and apparently, it increased my risk of something going wrong during the procedure.

Usually physicians re-test the Potassium level after supplementation and then re-order the EGD. Have you went back to the doctor that was going to do the EGD? 

 

8 hours ago, Abe said:

It was after all the antibiotics that my POTs started.

As far as I know antibiotics do not cause POTS ( to the best of my knowledge ) - but the infection can. The stress on your body from illness can trigger dysautonomia. What are your POTS symptoms, if I may ask?

[Abe]

Thanks @Pistol.  I did finish the H Pylori treatment and the tests after confirmed it was taken care of.  As far as the EGD test, the surgeon who was going to do the procedure told me to leave it alone unless the swelling comes back which never did.  I am grateful for that.

I was diagnosed with POTS in December 2017 and my initial symptoms were the usual Orthostatic intolerance, heart raise up to 140/150 when I sit or stand up, extreme fatigue, dizziness (standing or lying down), digestive issues, Anxiety and Panic Attacks, etc.  I feel all wired up all day long.  Like my body can't calm down. I know also that I have been under a lot of stress for years at work and at home during this time. I have tried to determine the type of POTS I have but I am so tired of spending money on medical bills that I have given up on that.  Before the final diagnosis, my doctor did almost all the tests in the book (including Lyme disease) to determine what was going on.  I can actually remember few times when he told me, "I'm not sure what to tell you because all these tests are coming back clean"

I have read about other people with same experience where their POTS started after a course of antibiotics and the fact that mine started the same way just made me wonder but what do I know?  Life goes on I guess.  Before 2017, I was a workaholic.  Worked 20-22 hour days.  I was everywhere.  Working on 4-5 projects at a time.  Now I work solely from home the last 3+ years but I am grateful that I least could work from home otherwise, it would have been a mess. Praise God.