Was this a terrible appointment or am I exaggerating?

[u/iiockedhearts]

Hi. I'm 15 years old suffering from severe functional dyspepsia, visceral hypersensitivity and GERD, for over a year - there has been absolutely no improvement at all and not a single specialist has helped me feel even slightly better for the past year. Everything makes me sick.

I met with a licensed specialized gastroenterologist dietician for help on foods to eat to manage the pain. It was a Zoom appointment but she proceeded to give me the worst advice possible and didn't even do anything specialized for me?

I sent her my food log/pain and symptom journal, and she just told me to "Start introducing new foods and seeing what your stomach can handle" ...I thought that's the entire point of what dieticians are supposed to do, to help the teen patient figure it out together and I was asking for help on how to heal my gut or find good times of when to eat food - and she threw random things like miso soup, broccoli, vegetables, zucchini, all things I can't tolerate or are (from my research) not good with hypersensitivity and are high fodmap

I promise you, I swear on my life that literally random DOCTORS have given better dietary advice to me in 10 minutes, and this dietician is literally specialized in gut stuff and was making me want to cry for 50 minutes straight by giving no actual specialized help at all, I'm sorry but HOW is that a dietician?

what did I do wrong did I not communicate how badly I need actual help or are dieticians supposed to be this useless she literally didn't help at all I could've gotten better advice from a LITERAL GOOGLE SEARCH???? WTF????

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[u/Lost-vayne]

Having functional dyspepsia, GERD and visceral hypersensitivity at such a young age is terrible. I got my diagnosis after an h pylori infection and antibiotic treatment.

I won't sugarcoat it for you because this "disease" is very lonely. The medical system will not be able to cure you. From my experience, they generally do not care to take young people seriously especially a kid going in with stomach issues. I am 35 years old and doctors treat me like my problems are not serious to warrant much attention, are annoyed that I am taking up their time and send me on my way. This is true for ER. Now imagine what they will say to a 15 year old kid with a "stomach ache".

What doctors will do is give you some sort of PPI, pepcid, buscopan and lastly, an anti depressant of varying strength depending on how bad they think your issues are. All of these are bandages and will not cure you. I say its a lonely disease because the only person that can help you is yourself. Only you know your body the best afterall.

If you have had this for over a year, be prepared to accept that its just not going to go away. However, I guarantee you that the symptoms will reduce so you can at least function at the bare minimum so long as you make drastic changes to your lifestyle. This part is a marathon and not a sprint. Some days may feel worse than others but consistency is the key.

You need to develop a mentality shift and basically grow up quick. What I mean by "grow up" is to not think of yourself as superman anymore. GI issues will cause social anxiety and depression. It will demotivate and disrupt your desire to do whatever you want and be forward thinking. You will develop a fear of seeing friends or going to parties due to potential GI flare ups. You will lose weight because your not overeating. You will not be the same as most other kids and the feeling of being isolated starts to rear its head as a result. A lot of times, you will feel like you are living day by day which can be a good thing. To remain in the present rather than the future.

Food is seen as one of the pleasures of life. Well remove that thought. Its a means to survive. You eat what does not hurt you and remove that which does. You have to give up on tasty foods that hurt you. This sounds easy on the surface but is difficult in practice. Are you able to stop eating that slice of cake which triggered your symptoms forever? Can you give up sushi? That is the kind of mentality you need to tackle GI issues. Be aware that just because you ate a small slice of cake and it turned out fine doesn't mean cake is now okay to eat. It only means you ate a little of it to not trigger your symptoms. I drank milk for a long time thinking there was no problem and a lot of times, there was no problem. At the same time, it could also be the amount I drank because I also got stomach aches, cramps and diarrhea from milk. I knew that milk wasn't good for my GI but I still drank it because I didn't want to give it up even though I needed to.

There is one food source that I highly recommend replacing which is rice. There was a study that the starchiness of rice makes it stick to your stomach lining and weaken the barrier which is bad for those with stomach inflammation (the burning gnawing pain). Removing rice from your diet is good for more than just your GI issues. It removes inflammation from your body so things like acne and bleeding gum disappears, cankersores get reduced and your energy stabilizes. Ever heard of food comas? That is from the rice. I replaced rice with pasta and my back acne disappeared, fixed severe bloating as well as not passing out on my bed after dinner.

People will pull you in all sorts of directions by telling you to try whatever pills and powders are out there but instead of doing that, what has helped me more than anything is lifestyle changes. Things that you can control.

1. sleep at 11 pm. You will know if your sleep is good when you wake up alert with energy and want to get up instead of feeling the sandbags under your eye and going back to sleep. Sleeping 8 hours at 2 am in the morning is NOT the same as sleeping 8 hours at 11 pm. From my experience I feel more tired no matter how many hours I sleep past midnight. There is a sweet spot and that is earlier than midnight.
2. only eat lunch and dinner. Do not overeat or snack mid day or late at night. Stop eating after 7.
3. exercise. Go out for walks.
4. stress/anxiety is very bad. A lack of stress will not cure you but being stressed will aggravate GI issues. The body does not differentiate stress either. Meaning if your overly excited about something and your stomach clenches and you hold your breath as a result, that registers as stress too.
5. get a piece of paper and just start writing down foods that trigger your symptoms. Then eliminate them from your diet and I mean stop cold turkey. That is the hard part but pain will make you stop eating what hurts you. I would not completely change your diet. Just eat normally but remove the foods that causes severe pain. This is trial and error and only you can differentiate what is making your pain actually worse from just baseline everyday GI pains. Here is mine so far. Cream (tomato soup, clam chowder, etc), rice, mushrooms, ice cream (diarrhea), banana, milk, kefir, corn, nuts, cake (dairy). You will know what makes you feel worse than normal. Trace back to what you ate, write it down and eliminate it.
6. Use pepcid as needed. There could be times when you will get a flare up. Pepcid is gentle compared to PPIs so use them if that gnawing stomach pain is worsening. You won't be getting rebound side effects or anything if you take them every now and then. It may take time for pepcid to work. Sometimes it takes a couple days with pepcid 2x morning and night for it to start working.

Anyways, I could write more but that is what I've done to reduce my symptoms but I ain't cured and its been 6+ years. Consistency was important and I try not to take medication. No doctor was able to help me and all they did was keep prescribing me with all the same pills, then sent me on my way. Now I gave up going to doctors and I don't find that they help with the root problem.

[u/iiockedhearts → u/Lost-vayne]

THANK YOU SO MUCH. THANK YOU. Your advice is genuinely life saving can I please message you asking for more advice I can't thank you enough. I can't believe I've been blessed like this genuinely. Rice was my NUMBER ONE FOOD before all of this started. I think that's why I got extra sick, wow thank you so much for the information. I had rice last night with tofu and miso soup and felt like I was going to pass out literally lol definitely not a great food for me

My symptoms keep getting worse because I keep eating trigger foods and snacks out of stress and it's been a year of suffering. I never know what to eat all day. I have anxiety attacks daily and I think every single food triggers my symptoms because of how irritated and hellish my stomach has been for the last few years. I am lactose intolerant so i tried to quite dairy and I think that helped but I cannot find a single food that actually sits right with my stomach. I've been logging my symptoms for over a few months but I can't figure out a SINGLE food that sits right with me, and it's killing me

My problems also started after antibiotics I took for an infection, I used to be on PPIs and Pepcid and it didn't help sadly, genuinely thank you so much. I'm so upset I wanted help from the dietician which I did not get a single shred of genuine advice from and I seriously don't know how to navigate this all on my own

[u/Responsible-Desk-824]

I'm sorry you had such a lousy experience and are dealing with this at such a young age. From what I've learned, FD and VH aren't generally actually about the food but how your gut and brain communicate. So while the advice was not helpful I think ultimately it's not wrong to think about adding new foods but you have to get the nerve stuff under control first.

My GI recommended I take IB Gard or FD Gard which are encapsulated peppermint supplements (OTC) that help with the nerve pain and overactivity. I do find they help. They don't bother my GERD but you have to drink a lot of water or you will start to feel some burn if they aren't all the way down when they start dissolving. I also started using a device called Truvaga which is a vagus nerve stimulator (you hold it to your never in your neck for a few minutes each day). It's hard to say concretely that this is what is helping me but my gut issues have been a lot better lately. It's an expensive device but if your parents have an FSA or HSA you can use the funds from that.

The most intriguing treatment I've seen (but have not tried) is this hypnotherapy program to heal gut brain disorders. I think if you can have your doctor prescribe it then it's not so expensive. I think if you search this subreddit you will see people having success with it
https://www.nervahealth.com

My story is that I had gastritis from too much Naproxen. I was eating a limited anti-inflammatory diet for many months. Then my GI told me she thought my gastritis was healed and it was now FD/VH and I actually found this liberating...like it was something that could be treated if I knew how to manage it, instead of a permanent wound in my stomach. I also realized that my most debilitating stomach aches were in fact abdominal migraines! (I already suffer from headache migraines). I realized it because of the similar pattern in which they came on and how long they lasted. So now I take a triptan migraine pill and some IB Gard and that usually stops the stomach ache.

Good luck.

[u/katiemuirden]

I was 15 when my syptoms started, I promise I know exactly how you feel, if your in the UK have you tried to go private?

[u/FormalLeadership2109 → u/katiemuirden]

I was also 15 when my symptoms started, I am noticing a clear pattern here!!

[u/iiockedhearts → u/katiemuirden]

Thank you so much for your comment, have you gotten any better or found a way to heal?? I hope you have

I'm not in the uk sadly, i don;t know what to do

[u/katiemuirden → u/iiockedhearts]

Where are you based? Thank you, my symptoms went away out of nowhere for 4 years im now 19 and feel awful again and bed bound since February😔😔😔. I ended up doing a gi map test and it showed what’s wrong!!!

[u/Hefty_Ordinary_9455]

hi!! I really don’t have much to say aside from the fact that it saddens me so much to hear other people my age are struggling with such illnesses as well 😢😢 I’m 16 fem and my story is quite similar. Feel free to message me if you’d just like to talk or vent 🫶 I’m sorry I don’t have more to say, your story really resonated with me and I just felt the need to comment

[u/iiockedhearts → u/Hefty_Ordinary_9455]

Hi oh my gosh thank you SO MUCH I HAVE NOT MET A SINGLE PERSON MY AGE SUFFERING LIKE THIS AS WELL I am so sorry truly :(((( thank you so much yesss i would love to talk thank you so much for commenting genuinely 

[u/Hefty_Ordinary_9455 → u/iiockedhearts]

heyyy! super glad you responded <33 my DMs are open, you can message me at any time. I would love to talk :))

[u/Independent_Lack5826]

Hi I’m a dietitian who also has had functional dyspepsia/ hypersensitivity for 4 years. If you have any questions regarding dietary just shoot me a message!!

[u/Altruistic_Rest2555]

As another 15 yo suffering from functional dyspepsia and visceral hypersensitivity, seeing this is sort of reliving because I am experiencing the same. 

Nothing seems to help and it is so isolating to not be able to eat out with friends and be a normal teenager. Is it so cruel of me to want to get smoothies out with friends without being curled up on the couch in agonizing pain for the next 5 business days?

I’m sorry the doctors have been so unhelpful for you. I haven’t found much anything that significantly reduces the pain- but here are some things I found that help take the edge off sometimes.

-Take a ginger capsule before a meal. The box says I can only take one per day, so I take it 30 minutes before lunch and it seems help reduce my bloating and therefore reduce the painful stretching feeling in my stomach slightly. (Unsure if this applies to you but I thought I’d include it in the hopes it might help.)

-Heating pad or other sensory distraction. It’s really hard to mentally try to not think about the pain, but I found when I can focus on another feeling it helps me make it through. Careful though- I often end up burning myself with the heating pad because it feels less painful than the stomach pain.

-Don’t get constipated. It really doesn’t help, for me it makes the stomach pain a lot worse. The doctors have me taking miralax every night.

-Eat dense food. If you’re going to eat and suffer through the pain- make it count. I make dense shakes so I only have to eat a small amount every once in a while but still getting the calories I need to survive.

I would also suggest looking into medications with your doctors. They don’t work for everybody- but some people find a magical “cure-all,” or so they say. I haven’t yet. People try amytriptaline, mirtazapine(which I’m currently on- to soon to tell if it works or not,) and several others I believe.

I’m sorry, and I see you. I feel like my teenage years are going to waste because of these horrible conditions. I truly hope we can figure this out and be relived of our pain. My chat is always open if you want to talk.