Struggle to eat on and off - need help figuring out why

Posted by kolincausey @kolincausey, 2 days ago

I have struggled to eat on and off for two years now. I’m 28 and used to eat anything I wanted until I was 26. I started having troubles swallowing solid foods, had bad acid reflux, and would feel dizzy with pressure in my ears like an ear infection face would feel puffy and throat inflamed… went for a EDG and they told me I had E of E had my throat dilated and started anti acids for about 4 months I responded well. I could eat food agin on and off… I have since had two more dialations and they do not show E of E they say everything looks fine. I have had barium swallow test that went fine. I had an emptying study done that showed I have “Dumping Sydrome” … I had a empedence test that showed high acid levels in esophagus just recently… I had food allergy test down two years ago and it showed I had no food allergies… I can drink huel protein shakes with bananas blended in them 4-5 times a day and feel fine. Once I chew up anything and swallow it the first bit will go down fine, second not as easy, normally by the third I get halfway choked and start feeling loopy slight ear pressure and inflammation to the point where if I go back to drinking my shake it will not go down as well. If I try to eat several days in a row it will get to the point where I can barley even drink liquid. White foamy spit in throat and I will feel like I need to spit all day… I’ve got to the point where I just only eat my Huel shakes and live life fine besides each afternoon having bad gas, but in a perfect world I’d like to know what causes my problems and try some other form of medicine… I’m out of options my doctors give me my anti acids and basically just say good luck. I have considered going to Mayo Clinic even though I live in South Carolina. At this point I don’t mind spending the money but I just want a doctor who has time to try and help and figure out what’s going on. Any advice appreciated I will try anything.

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frouke | @frouke | 2 days ago

It’s so sad that you went through this, it must have been hard to deal with. I went through numerous tests and scares that weren’t correct but there you are, it’s so difficult to cope with problems and also unable to determine what is wrong. I hope you keep moving forward to get the best of care, I know that you’re doing your best but try to keep strong and don’t give up on yourself, I will say a prayer for you.

pml | @pml | 1 day ago

Hi,
What a terrible situation to have! I will say a prayer for you also. Take your problems to God. He made you and he can fix you. Also it might be a good idea to do some research online about your symptoms. I used to do that when my husband had lung cancer. Often I found out some things that were bothering him that the doctors hadn't even thought of looking into. Doctors, these days are very busy and often don't have the time to look into all the details of a complicated situation like yours. So, try doing your own research. Start researching your symptoms on The Mayo Clinic website and see where that takes you.
I wish you the best.
Blessings,
PML

midnightstar1001 | @midnightstar1001 | 13 hours ago

You sound exactly like me actually and I went to every doc etc. I am now seeing a specialist in two weeks to see what they can do for me as well, I had a gastro doc that now refuses to help me because they said I am not their problem anymore because I have a non-cancerous tumor in my stomach and their refusing to help me now, I hope this new specialist helps me because I had h-pylori and that was the start of my horrible symptoms and now felt like ever since then I haven't been able to get my life back, I have had a rough time eating for about 2yrs and lost a lot of weight and then out of nowhere took famotine to help with all the acid in my stomach and could eat again for a little while there but now back at it again where a lot of foods have upset my stomach, I have obviously cut out a lot of food and stuck with a very strict diet because when I even eat meat and accidentally ate anything with fat on it I get too sick to the point I will want to throw up all day long the next day and stomach pain etc. I shouldn't have to live like this but I do because nobody cares, I was supposed to have surgery as well to remove this but the doc left the practice right before I was scheduled surgery and now had to change practices, It's been really crappy for me and I just want my life back I can't keep going on like this. I have lost jobs over this and everything I am just waiting to be able to eat again and live a normal life again, so I feel your pain! HUGS!

Janell, Volunteer Mentor | @jlharsh | 12 hours ago

Hi @kolincausey, and welcome to Mayo Clinic Connect! I am sorry you are having such a difficult time eating and how it seems to be affecting you all over.

Some of what you describe sounds familiar to me, some not so much. I can encourage you that:

- lifestyle matters:
diet and exercise have gone a long way to help my body function as well as it can so that
1) anything else my doctors recommend have a better chance of working, and
2) consistency has made it easier to figure out how what I was doing affected everything.

- work with a doctor you trust and buy into their process:
I went in circles at home, I eventually went to Mayo Clinic with systemic circulation problems continuing to worsen, and one of many consults I had was with GI. They told me nothing would get better until I addressed pelvic floor function which made no sense to me. And, with all the GI appointments I had at home it was never brought up. It was a game changer! I say this, not necessarily because I think it is your answer but because I want to encourage to continue doing the next best thing in front of you. You can do this!

You mention confirming dumping syndrome. If you haven’t read this already, here is a Mayo Clinic Overview, describing symptoms and also treatment options: https://www.mayoclinic.org/diseases-conditions/dumping-syndrome/diagnosis-treatment/drc-20371922

As far as going to Mayo Clinic, if it is a possibility for you I would highly recommend going for it. You can make an appointment here: http://mayocl.in/1mtmR63

Has your doctor talked to you about options, or maybe referred you to a dietician in the meantime?

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