GERD sufferers, can I ask about your symptoms?

[OnionPatch]

I've been suffering from GERD for nearly two years. It seemed to have come on suddenly but in retrospect I did have some earlier symptoms I didn't realize were related. I have to take very strong PPIs and even then my symptoms are constant and include some that they say aren't GERD symptoms, so I've seen quite a handful of doctors. I'm going to a group of specialists next month, so hopefully they can shed some light but I am curious if other GERD sufferers ever have some of my stranger symptoms. Some of the doctors have said they are related, some have said they are not. So I'm curious.....

If you suffer from GERD, do you ever have the following symptoms:

Shaking, trembling
Waves of weakness, dizziness
Palpitations or heart beats that are stronger than seems normal
Itching or tenderness on the abdomen
Itching or tenderness on the back, between the shoulders
Diarrhea
Burning pain in the stomach
Shortness of breath

[DeadLetterOffice]

1. Are you by any chance also hypermobile?

Many of your described symptoms sound like possible dysautonomia, which is also frequently associated with joint hypermobility due to a genetic collagen disorder like Marfans or Ehlers-Danlos.

[OnionPatch]

2. No. Not hyper mobile.

I just read about dysautonomia. Sounds like there are many different causes. Some of them scary. Hopefully it's not that but thanks for mentioning it. I'll ask the docs if they think that's a possibility.

[OnionPatch]

3. If you have GERD

And you DON'T have any symptoms like those above, I'd also like to hear that. One doc thinks these are symptoms of extreme acid reflux, possibly involving vagus nerve irritation. But if that were it you'd think others with bad GERD problems would have some of these symptoms.

[Nay]

5. I have GERD and have none of these symptoms. I take Nexium daily and

have done so for years. My symptoms, at the beginning, were reflux/heartburn and constipation. After a number of years I learned to avoid certain foods (pizza, root beer are the worst) and to avoid eating for several hours before going to bed at night. Going to bed on an essentially empty stomach and never eating big meals are the best preventatives for me.

I've had several endoscopies and colonoscopies since diagnosis; I now have mild gastritis (no treatment needed) and have the constipation is treated with Linzess and Miralax.

Does your esophagus show irritation? Have you had an endoscopy yet? Your symptoms seem very severe for GERD, but I'm no expert.

[OnionPatch]

6. Yes, I've had tests.

The upper GI showed "marked reflux" and the endoscopy showed "mild gastritis" and normal esophagus, however, the endoscopy was not done until after I had been on Dexilant 60mg for a few months and my esophagus was not inflamed at the time. A few months earlier I could hardly swallow it was so bad. I also had a manometry which showed that I refluxed 37 times in 24 hours. I don't know if that's a lot or not compared to a typical case of GERD. Hopefully the new team of docs can review it for me and answer some questions I have.

Thanks very much for letting me know you don't have any of those symptoms. I've heard of some people with GERD who do, but only on the internet. I tried switching to Nexium but it just didn't do it for me. My shaking and reflux got worse. Dexilant just keeps the GERD from being horrible but it does work better than anything I've tried so far. I still wake up with that nasty acidic taste in my throat every morning. (I do sleep on a wedge, avoid spicy foods, and use all the other reflux remedies.)

[hedgehog]

4. Get someone to check your liver while you're at it -

sometimes pain from there is referred to the back or shoulders.

[OnionPatch]

7. I'll be sure to ask about that. Thanks!

I wonder if liver problems ever cause GERD.

[jomin41]

8. Aliver function test is a good idea but

it might not be enough. My 47yo son tested ok for liver function at the er but later blood tests showed serious damage to his liver.
I've dealt with Indigestion/GERD/constipation for 40 years plus. LES broken.(Lower Esophageal Sphincter - valve between stomach and Esoph.)
1) PPI's made my problems worse! I had to taper off of them.
2) The single best thing for me was the "Low-Fodmap Diet". This is designed for IBS
patients by a university in Australia. Big help but not cure. Many common foods to avoid.
3) I have to sleep in a chair now, after raising the bed, extra pillows etc.
4) Digestive enzymes plus HCL with meals. Magnesium for constipation.
5) Be VERY careful with antibiotics.

[OnionPatch]

10. So sorry to hear you suffer so much!

It sounds like you get similar symptoms with the lungs. Have your doctors suggested any type of GERD surgery? Fundoplication or Linx perhaps might help you? Although I'm guessing another surgery isn't exactly what you are hoping for.

[PADemD]

12. No more GERD since I totally eliminated Carrageenan from my diet.

[auntAgonist]

13. That is very interesting. What were you eating that had it in it? (just curious)

I just checked a lot of things (not all) in my cupboard and found that my Atkins Shakes are the only items that have carrageenan in them.

This article explains it a bit and why they use it. Also why you shouldn't use it.

http://www.prevention.com/food/healthy-eating-tips/carrageenan-natural-ingredient-you-should-ban-your-diet

[PADemD]

14. I was drinking it every day.

Coffeemate and jugs of chocolate milk from the machines at work. Also, so-called ice cream and even cereal.

Check out the "dairy" section at your grocers. You'll find it everywhere. I told the store manager he might as well hang a Prilosec peg in the dairy section.

[auntAgonist]

15. I'm glad we gave up the coffeemate and flavoured coffee 'creamers' a long time ago.

We don't use much dairy. Definitely not any chocolate milk at all. As I said just my Atkins protein shakes. I've not used them much either because I use a really good whey protein.

I'm going to research this a lot further. I really appreciate you posting about it. My husband had Ulcerative Colitis really bad to the point where they removed his entire colon. I'm sure his years of coffee w/coffee mate didn't help.
Thankfully now we use real cream in our coffee. We both have auto-immune issues so this is very interesting to me.


kesha

[PADemD]

16. GERD and coffee creamers

Years ago, I worked with a temp who spent $35 a month on Prilosec because of acid reflux. I told her that she could save the $35 by not putting Coffeemate in her coffee, but she said she liked the flavor too much.

You might enjoy this site I found yesterday while searching for recipes:

25 Homemade Coffee Creamers and Syrups (without the nasty additives)

http://www.theorganicprepper.ca/25-homemade-coffee-creamers-and-syrups-without-the-nasty-additives-12172014

[OnionPatch]

17. I have eliminated it from my diet.

But I still have symptoms. However, I notice they flare up each time I have any kind of coffee creamer with HFCS and/or hydrogenated oils, even if it doesn't contain carrageenan. I think there are many chemicals in our foods these days that aren't doing us any favors.

[PADemD]

18. Xanthan gum could be a problem, too.

Check out this list of food additives, thickeners, stabilizers, and emulsifiers.

http://www.everbum.com/food-additives/food-additives-thickeners-stabilizers-emulsifiers/

Another thing that bothers me is MSG.

I have started cooking from scratch again just to avoid the chemicals.

There are lots of good recipes on line.

[glitterbag]

19. I'll get back tomorrow

I also have the first three lines of symptoms you describe, and I have GERD. But those symptoms occur when my potassium drops, and it drops very low at times. I'm not sure if the gerd has anything at all to do with it. My gerd causes me to cough, I don't have heartburn and I finally had surgery to repair the hernia. I have to return later, I want to flesh this out a little better and I'm getting heavy eyelids.