Help please - what kind of doctor do I need?

[cosmowife]

I'm struggling with trying to figure out what type of doctor to see next for my issues.  They are very minor in the grand scheme of things, but they can also be very disruptive to my life at times.  For the last few years (probably at least 4-5 years at this point), I've had these bouts of nausea off and on.  Sometimes it continues for weeks, other times a few days.  Sometimes it disappears for months. Sometimes, after certain foods (which I still cannot identify), I get REALLY sick for a short amount of time.  Horrible nausea, chills, shaking, feel like I have the stomach flu. This happened on Monday evening - I couldn't get off the bathroom floor for several hours. I was even running a fever. It subsided after a few hours. I've cut out so many foods at this point because I can't pinpoint exactly what is causing the issue.  On Monday, it seems to have been rice cakes. Rice cakes!!!  I've cut out nuts, salmon, certain grains (buckwheat and wheat berries), papaya, and a bunch of other random stuff because my issues hit after I consumed these items. 

I started with my primary care doctor, who ran blood work but didn't see anything wrong. I've seen an allergist who ran both skin tests and blood tests - again, nothing wrong. I've seen a gastro. I had an endoscopy performed, which identified minor gastritis in my stomach. However, no explanation as to how it occurred in the first place. I was tested for celiac (both blood and biopsy) and that was negative. I was prescribed a PPI which I haven't taken yet because I've heard that they can make things worse when you try to stop them.  

I'd like to figure out WHY I have this issue to begin with.  I'm thinking I need some sort of nutritionist who also looks at blood work - is that a thing?  Any other ideas?  I'm kind of stuck. The gastro wasn't much help - she was basically like, here are the pills - hope you feel better!  I want to know why this is happening and whether there is anything I can do to stop it and heal it. I'd also like to try to narrow down the foods that are actually causing the problem so that I can eat like a normal person again.

Thank you - this has been such a struggle for so many years now!

[orval]

My sister was diagnosed with IBS with similar symptoms. She has never found any foods that trigger it. She does have meds that she uses when she has an issue, but it's usually too late. She had all the tests as well and never came to any conclusion but IBS. Sorry this is not helpful!

[Aloe Vera]

Could be gallbladder related. An ultrasound would show if you have stones. I am surprised they haven't done it.
Trigger foods could be fatty foods, dairy... For me, raw onions for example trigger it. A primary doctor can order it.

[ladyfern]

Maybe blood sugar issues, like reactive hypoglycemia? You could ask your doctor about glucose testing

[cosmowife]

May 4, 2022 14:40:52 GMT -5 Aloe Vera said:

Could be gallbladder related. An ultrasound would show if you have stones. I am surprised they haven't done it.
Trigger foods could be fatty foods, dairy... For me, raw onions for example trigger it. A primary doctor can order it.

I forgot!  I had a gallbladder study done as well - all normal.  I had both an ultrasound and a more intensive study that involved injecting me with something and watching it flow through my gallbladder for a couple of hours. But there were no issues.

[cosmowife]

May 4, 2022 15:00:14 GMT -5 ladyfern said:

Maybe blood sugar issues, like reactive hypoglycemia? You could ask your doctor about glucose testing

This is interesting - I've always felt that my issues were somehow connected to carbs.  I've had my blood sugar tested but it was only a fasting test, and my levels were all fine.  I will inquire about other options for testing.

[cosmowife]

May 4, 2022 14:38:59 GMT -5 orval said:

My sister was diagnosed with IBS with similar symptoms. She has never found any foods that trigger it. She does have meds that she uses when she has an issue, but it's usually too late. She had all the tests as well and never came to any conclusion but IBS. Sorry this is not helpful!

I will look into this - this was never mentioned as a possibility so I never considered it before.

[waverly]

My mom has IBS. Had all the tests nothing really came back. She is lactose intolerant. Lately, the IBS has been paired with extreme stomach pain and nausea. My sister said it was psychosomatic, so she may be going in to see a psychologist or psychiatrist. I had her do a meditation app, and it lowered the pain by 70%, but it was still there. She gets it a lot while traveling, so it seems like anxiety is playing a part. Anxiety was underlining the IBS. She still doesn't have real answers, but all her gastro testing came back normal. Otherwise, I would have said gallbladder, but it looked normal.

I should add that the symptoms were not at the same time.  She has the extreme pain first like a day before, then the IBS (diarrhea) part was 12 hours later.  I would have thought it would be more like a stomach virus where they come at the same time, but no.  

She also had the allergy and food sensitivity tests and nothing except the lactose intolerant.  She has diverticulitis, but the symptoms are different than her extreme pain symptoms.   

[audry80]

I think it’s odd you were prescribed a PPI from a doctor but didn’t try it. Did the doctor tell you it could make it worse? Did you discuss your concerns with them?

I would try the PPI. When I have acid reflux issues, my only symptom is nausea. I have been on and off of PPIs for years with no issues.

I think a GI is the best doctor in this situation. Have you been tested for SIBO?

Hope you get some relief soon.

[yaga]

I would definitely try the PPIs.

I have gastroparesis, which frequently makes me incredibly nauseated when I eat. I honestly didn't even know my symptoms were an issue until my doctor found food in my stomach during an endoscopy (where I had fasted for about 16 hours). It was confirmed by a gastric emptying study. For me, there aren't any specific trigger foods for nausea and vomiting, but foods that are harder to digest, like those high in fiber and fat, give me insanely awful heartburn.

Blood tests for food sensitivities are basically bullshit. I think that's what you were referring to with the nutritionist and blood tests. Additionally, if you go to see a nutritionist, always make sure they are a registered dietitian. Apparently the title nutritionist means nothing - anyone can call themselves that.

[savan]

My gastritis and reflux causes nausea. It’s the worst at night and first thing in the morning. I would have nights where I was dreaming I had a stomach virus because I was so nauseated. PPIs have helped tremendously. I was on them for a year, went off for a year, and have been back on for 6 months due to symptoms returning. I also found they helped with cramping and diarrhea that I assume was caused by all the acid and inflammation in my stomach.

I did have rebound reflux when I went off PPIs but it only lasted about a month and was manageable. I would give them a try.

[HiC]

Are you vomiting along with the nausea?

[mcsangel2]

I'll ask about dairy since you didn't specifically mention it, your symptoms are similar to lactose intolerance. Also did they eliminate diverticulitis? Both of these run in my family, similar if not the same symptoms.

[cosmowife]

May 4, 2022 17:28:31 GMT -5 HiC said:

Are you vomiting along with the nausea?

No vomiting. A couple of times came close (the salmon) but it never actually happened. I also thought I was going to vomit on Monday night, but it did not happen. But it feels almost like I am going to - you know the feeling you get right before getting sick.

[cosmowife]

May 4, 2022 17:31:11 GMT -5 mcsangel2 said:

I'll ask about dairy since you didn't specifically mention it, your symptoms are similar to lactose intolerance. Also did they eliminate diverticulitis? Both of these run in my family, similar if not the same symptoms.

Can lactose intolerance come and go, or develop over time? I ask because I eat a Greek yogurt for breakfast every day and have been doing so for probably a decade, and I’ve had long stretches of time with no symptoms. But I’ll look into it. I’ve never heard of diverticulitis - that is interesting. I don’t have abdominal pain however.

[goldengirlz]

It sounds like you didn’t have a good connection with the GI doc you saw (since you seem dismissive of her recommendation) — maybe get a second opinion?

FWIW, my H saw three different GI specialists before anyone could give him a diagnosis, and he’s a doctor himself (so he was asking the right questions, speaking the jargon, etc.) It’s not unheard of. If you have an academic medical center near you, that could be one place to start.

[leahcar]

I rarely post, but wanted to chime in. I had a small bowel obstruction and my symptoms were very similar. Before things escalated, I kept getting new food sensitivities. I would randomly have rounds of diarrhea and constipation. I was getting acid reflux after never struggling with it. Honestly, this happened on and off for years.

I went on anxiety meds (needed for other reasons!) and it didn’t touch my digestive troubles.

It escalated into extreme pain and then vomiting. That was very new and very urgent.

See if your GI will do a CT scan of your core.

[mcsangel2]

May 4, 2022 17:39:49 GMT -5 cosmowife said:

May 4, 2022 17:31:11 GMT -5 mcsangel2 said:

I'll ask about dairy since you didn't specifically mention it, your symptoms are similar to lactose intolerance. Also did they eliminate diverticulitis? Both of these run in my family, similar if not the same symptoms.

Can lactose intolerance come and go, or develop over time? I ask because I eat a Greek yogurt for breakfast every day and have been doing so for probably a decade, and I’ve had long stretches of time with no symptoms. But I’ll look into it. I’ve never heard of diverticulitis - that is interesting. I don’t have abdominal pain however.

Lactose intolerance - yes it can, especially secondary lactose intolerance (non genetic). ETA: Also, you can be more sensitive to some dairy products than others. My aunt straight up can't have milk or soups made with cream, or anything with cheese, but baked goods are fine and *occasionally* ice cream.

Diverticulitis - diagnosed with an abdominal ct, but if you aren't having issues with your bowel movements (you didn't say), it's unlikely to be that.

[mcsangel2]

1) Google tells me Greek yogurt has less lactose. 2) Additionally, regularly consuming lactose, when you are otherwise intolerant, actually makes your body better able to digest it. (I know it sounds weird but I've known this for a long time). This means, if you *are* lactose intolerant (I'd be super suspicious that's the problem), if you cut out *all* dairy for awhile to see if that helps, you would almost certainly *not* be able to resume your beloved Greek yogurt regimen.

[Pumpkins]

Lurker here but I wanted to share in case it helps. I have been having persistent diarrhea since January. I can’t figure out any correlation with food. I had been to my primary and a gastroenterologist but he just wanted to do various scopes. I am confident that this is infectious as my toddler has had the same issues. I don’t want to go through that process only to have more inconclusive results.

I asked a nurse friend for her thoughts and she suggested a functional medicine specialist. From what I understand they are MDs who focus on determining the root cause of a problem, often through a nutritional lens. I had a free consult last week and the NP said that 50-60% of their patients have GI issues.

I have my first appointment tomorrow so I can’t report any results yet. The downside is that the cost is out of pocket and it’s expensive. I can submit for insurance reimbursement after but there’s no guarantee it will be approved. I’m willing to try this because I’m tired of feeling like garbage.

Good luck, and let me know if you want any info after my first appointment.

[BicycleBride]

May 4, 2022 18:53:31 GMT -5 Pumpkins said:

Lurker here but I wanted to share in case it helps. I have been having persistent diarrhea since January. I can’t figure out any correlation with food. I had been to my primary and a gastroenterologist but he just wanted to do various scopes. I am confident that this is infectious as my toddler has had the same issues. I don’t want to go through that process only to have more inconclusive results.

I asked a nurse friend for her thoughts and she suggested a functional medicine specialist. From what I understand they are MDs who focus on determining the root cause of a problem, often through a nutritional lens. I had a free consult last week and the NP said that 50-60% of their patients have GI issues.

I have my first appointment tomorrow so I can’t report any results yet. The downside is that the cost is out of pocket and it’s expensive. I can submit for insurance reimbursement after but there’s no guarantee it will be approved. I’m willing to try this because I’m tired of feeling like garbage.

Good luck, and let me know if you want any info after my first appointment.

It’s out of pocket because functional medicine is not evidence based. It’s pseudoscience.

[rebneen]

I would seek out another GI doctor. I have been to a few and their bedside manner is usually pretty meh but only one was dismissive in addition so I left his practice. Current is not warm and fuzzy but really talks through things and will support a range of treatments (dietary, testing, meds, etc). I trust her a lot.

I also really like my primary when I’m not sure where to go. If I describe symptoms she helps direct me to a specialist who is the best for my issue.

[wanderingback]

May 4, 2022 18:53:31 GMT -5 Pumpkins said:

Lurker here but I wanted to share in case it helps. I have been having persistent diarrhea since January. I can’t figure out any correlation with food. I had been to my primary and a gastroenterologist but he just wanted to do various scopes. I am confident that this is infectious as my toddler has had the same issues. I don’t want to go through that process only to have more inconclusive results.

I asked a nurse friend for her thoughts and she suggested a functional medicine specialist. From what I understand they are MDs who focus on determining the root cause of a problem, often through a nutritional lens. I had a free consult last week and the NP said that 50-60% of their patients have GI issues.

I have my first appointment tomorrow so I can’t report any results yet. The downside is that the cost is out of pocket and it’s expensive. I can submit for insurance reimbursement after but there’s no guarantee it will be approved. I’m willing to try this because I’m tired of feeling like garbage.

Good luck, and let me know if you want any info after my first appointment.

What in the world?!
Persistent diarrhea for 5 months definitely deserves a good work up with stool samples and likely a colonoscopy for a biopsy, which it sounds like the GI doctor wants to do. Medical doctors do try to find the root cause of issues but bodies and science can be complicated as hell.

I’m all about non-western medicine (I’m actually taking a community herbal medicine year long class right now) but at the same time there needs to be a balance. Functional medicine can be pretty BS and can miss serious diagnoses if not careful. They will woo you with all this blood work, much of which can be meaningless, so just be careful.

OP, I hope you have luck find something that helps.

[okla]

May 4, 2022 18:53:31 GMT -5 Pumpkins said:

Lurker here but I wanted to share in case it helps. I have been having persistent diarrhea since January. I can’t figure out any correlation with food. I had been to my primary and a gastroenterologist but he just wanted to do various scopes. I am confident that this is infectious as my toddler has had the same issues. I don’t want to go through that process only to have more inconclusive results.

I asked a nurse friend for her thoughts and she suggested a functional medicine specialist. From what I understand they are MDs who focus on determining the root cause of a problem, often through a nutritional lens. I had a free consult last week and the NP said that 50-60% of their patients have GI issues.

I have my first appointment tomorrow so I can’t report any results yet. The downside is that the cost is out of pocket and it’s expensive. I can submit for insurance reimbursement after but there’s no guarantee it will be approved. I’m willing to try this because I’m tired of feeling like garbage.

Good luck, and let me know if you want any info after my first appointment.

Dude. Get the colonoscopy.

[okla]

OP, I had similar issues plus diarrhea last year and GI did all the tests you mentioned and also a colonoscopy. Ton of blood work, stool sample, treated for SIBO, etc. Ultimately, my previous diagnosis of IBS was just confirmed and I also had evidence of GERD. She did prescribe pantoprazole (a PPI) and it helped the nausea/heartburn. The diarrhea went away after I switched an unrelated med (which I’m back on now with no issues. Bodies are weird.) FWIW, I went without the PPI for about a month recently before I could get a refill and while my symptoms did come back, I wouldn’t say they were worse than before.

[VillainV]

I don’t know if what you have is gastritis, but I’ve had gastritis a few times and while it’s been a little different each time, many of the symptoms match what you have. The only thing that helps is PPIs.

[mention]trustme [/mention] I’ve had GI infections that after the initial horrible bout of D&V subsided, resulted in months of extremely soft stools. Not quite diarrhea, but definitely no solid stools for months. When your gut biome is disrupted, it can take a very long time to re-establish the right balance of bacteria. So, if you had a bad GI infection, that might account for your continued symptoms.

[mofongo]

May 4, 2022 18:53:31 GMT -5 Pumpkins said:

Lurker here but I wanted to share in case it helps. I have been having persistent diarrhea since January. I can’t figure out any correlation with food. I had been to my primary and a gastroenterologist but he just wanted to do various scopes. I am confident that this is infectious as my toddler has had the same issues. I don’t want to go through that process only to have more inconclusive results.

I asked a nurse friend for her thoughts and she suggested a functional medicine specialist. From what I understand they are MDs who focus on determining the root cause of a problem, often through a nutritional lens. I had a free consult last week and the NP said that 50-60% of their patients have GI issues.

I have my first appointment tomorrow so I can’t report any results yet. The downside is that the cost is out of pocket and it’s expensive. I can submit for insurance reimbursement after but there’s no guarantee it will be approved. I’m willing to try this because I’m tired of feeling like garbage.

Good luck, and let me know if you want any info after my first appointment.

Have you even given a stool sample? Get the tests!! Jesus

[mofongo]

OP - a friend of mine had something similar, she was able to narrow it down to certain fish, through trial and error. It would hit her pretty violently after ingestion.

[goldengirlz]

May 4, 2022 18:53:31 GMT -5 Pumpkins said:

Lurker here but I wanted to share in case it helps. I have been having persistent diarrhea since January. I can’t figure out any correlation with food. I had been to my primary and a gastroenterologist but he just wanted to do various scopes. I am confident that this is infectious as my toddler has had the same issues. I don’t want to go through that process only to have more inconclusive results.

I asked a nurse friend for her thoughts and she suggested a functional medicine specialist. From what I understand they are MDs who focus on determining the root cause of a problem, often through a nutritional lens. I had a free consult last week and the NP said that 50-60% of their patients have GI issues.

I have my first appointment tomorrow so I can’t report any results yet. The downside is that the cost is out of pocket and it’s expensive. I can submit for insurance reimbursement after but there’s no guarantee it will be approved. I’m willing to try this because I’m tired of feeling like garbage.

Good luck, and let me know if you want any info after my first appointment.

Not to add to the chorus, but your hypothesis doesn’t really add up. First, if it is an infection (like you seem to think it is), then it’s not a food sensitivity. Second, while stomach viruses can be highly contagious, I don’t think a doctor’s first thought would be that you and your toddler have been passing something back and forth over the past four months. And while, yes, you can certainly get food-borne illnesses that last for a while (hepatitis comes to mind), January is a long time ago at this point, and I can see why a GI doctor would want to rule out other causes.

FWIW, it’s true that GI stuff can be frustrating. My sister had severe, persistent diarrhea for months and months after my dad died — she went through all the tests only to be told it was stress-related. There’s a lot we still don’t understand. But often that lack of certainty leads people to sham medicine, and that’s the problem.

[loira]

No suggestions but my sympathy because I could have written the OP's post. I also get random terrible stomach pain/nausea that lasts a couple of days, with chills and everything. It happens infrequently enough that I've never been able to pinpoint the cause.

This thread has prompted me to finally make an appointment with my GP.