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OnionPatch

(6,218 posts)
Sat Dec 19, 2015, 12:36 PM Dec 2015

GERD sufferers, can I ask about your symptoms?

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

19 replies = new reply since forum marked as read
Highlight: NoneDon't highlight anything 5 newestHighlight 5 most recent replies
GERD sufferers, can I ask about your symptoms? (Original Post) OnionPatch Dec 2015 OP
Are you by any chance also hypermobile? DeadLetterOffice Dec 2015 #1
No. Not hyper mobile. OnionPatch Dec 2015 #2
If you have GERD OnionPatch Dec 2015 #3
I have GERD and have none of these symptoms. I take Nexium daily and Nay Dec 2015 #5
Yes, I've had tests. OnionPatch Dec 2015 #6
Get someone to check your liver while you're at it - hedgehog Dec 2015 #4
I'll be sure to ask about that. Thanks! OnionPatch Dec 2015 #7
Aliver function test is a good idea but jomin41 Jan 2016 #8
This message was self-deleted by its author AtomicKitten Jan 2016 #9
So sorry to hear you suffer so much! OnionPatch Jan 2016 #10
This message was self-deleted by its author AtomicKitten Jan 2016 #11
No more GERD since I totally eliminated Carrageenan from my diet. PADemD Mar 2016 #12
That is very interesting. What were you eating that had it in it? (just curious) auntAgonist Mar 2016 #13
I was drinking it every day. PADemD Mar 2016 #14
I'm glad we gave up the coffeemate and flavoured coffee 'creamers' a long time ago. auntAgonist Mar 2016 #15
GERD and coffee creamers PADemD Mar 2016 #16
I have eliminated it from my diet. OnionPatch Mar 2016 #17
Xanthan gum could be a problem, too. PADemD Mar 2016 #18
I'll get back tomorrow glitterbag May 2016 #19

DeadLetterOffice

(1,352 posts)
1. Are you by any chance also hypermobile?
Sat Dec 19, 2015, 07:09 PM
Dec 2015

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

(6,218 posts)
2. No. Not hyper mobile.
Sun Dec 20, 2015, 10:03 AM
Dec 2015

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

(6,218 posts)
3. If you have GERD
Sun Dec 20, 2015, 10:06 AM
Dec 2015

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

(12,051 posts)
5. I have GERD and have none of these symptoms. I take Nexium daily and
Sun Dec 20, 2015, 03:05 PM
Dec 2015

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

(6,218 posts)
6. Yes, I've had tests.
Sun Dec 20, 2015, 08:40 PM
Dec 2015

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

(36,286 posts)
4. Get someone to check your liver while you're at it -
Sun Dec 20, 2015, 02:33 PM
Dec 2015

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

jomin41

(559 posts)
8. Aliver function test is a good idea but
Sun Jan 24, 2016, 12:21 PM
Jan 2016

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.

Response to OnionPatch (Original post)

OnionPatch

(6,218 posts)
10. So sorry to hear you suffer so much!
Sun Jan 31, 2016, 09:35 AM
Jan 2016


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.

Response to OnionPatch (Reply #10)

auntAgonist

(17,257 posts)
13. That is very interesting. What were you eating that had it in it? (just curious)
Sat Mar 26, 2016, 12:40 PM
Mar 2016

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

(4,482 posts)
14. I was drinking it every day.
Sat Mar 26, 2016, 01:02 PM
Mar 2016

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

(17,257 posts)
15. I'm glad we gave up the coffeemate and flavoured coffee 'creamers' a long time ago.
Sat Mar 26, 2016, 01:54 PM
Mar 2016

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

(4,482 posts)
16. GERD and coffee creamers
Sat Mar 26, 2016, 02:06 PM
Mar 2016

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

(6,218 posts)
17. I have eliminated it from my diet.
Thu Mar 31, 2016, 03:11 PM
Mar 2016

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

(4,482 posts)
18. Xanthan gum could be a problem, too.
Thu Mar 31, 2016, 04:13 PM
Mar 2016

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

(45 posts)
19. I'll get back tomorrow
Tue May 24, 2016, 02:09 AM
May 2016

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.

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