Heartburn-like pain...is it heartburn?

[NykusCarus]

I was diagnosed with Celiac Sprue and GERD at age 13. I am now 20 and have adhered to the gluten-free diet religiously since my diagnosis.

I have had all the symptoms of acid reflux disease for those years, off and on. But recently, as I hit my tweens, they got far worse. I was regurging, feeling heartburn nonstop, etc. etc. My doctor put me on a PPI. That made things ten times worse. I could not sleep for the pain/regurgitation.

My doctor has referred me to a specialist in St. Louis, but I still hurt all the time and would like to try anything (within reason) to help ease the chest pain.

I tried Betaine HCL and digestive enzymes. These completely fixed every single symptom I have except the severe chest pain. I have a high pain thresh hold. As a boxer/martial artist/powerlifter, I deal in pain daily and it doesn't phase me one bit. But this pain is enough to make me want to cry after suffering from it for several hours.

I can't get rid of it. I don't regurgitate acid. I don't have a brash in the back of my throat. I have no symptoms at all whatsoever of any gut problems except this incredible chest pain.

I've tried the following remedies to decrease the pain:

Betaine HCL (which I still use) and digestive enzymes. (These do not just reduce my GERD symptoms. They eliminate them entirely.)
Apple Cider Vinegar (seems to do absolutely nothing to the pain)
Dairy free diet (no difference)
Complete fast (didn't eat anything for a day, drank only water...no difference)
Acidophilus (no difference)

I've had the following tests done in the past month: Endoscopy. Showed signs of esophageal cracking and wear due to acid in the esophagus. Also showed a small (doctor said it was no big deal) hiatal hernia.

Stomach Motility Test (nuclear camera). Showed a completely motility in the stomach.

I've tried so many remedies for heartburn (including Aciphex, Nexium, Zantac, Betaine HCL, baking soda, Pepto Bismol) that don't work. I'm curious if it isn't heartburn at all. Are there any other diseases/conditions that can cause extreme burning/gripping/tight sensations in that area?

Thanks a lot in advance for any responses. I'm at the end of my rope here, and my GI doctor flatly told me that he doesn't put any stock in my home remedies, but admits that he has no clue what to do beyond PPI therapy, which doesn't help me.

[NykusCarus]

Becky, thanks so much for replying.

Yes, I do avoid those foods. My GI doctor has verified that my diet was (his words) "not improvable" insofar as whether or not it should affect GERD, and it makes no difference.

I have tried many acid reducers, including Prilosec. I have also tried PPIs and H2 blockers. No product works at all except Pepto Bismol (which I assume works because it coats, not because it is neutralizing acid). Not sodium bicarbonate, not Aciphex (even at six times the regular dose), not Nexium (even at 2 times the regular dose), not Prilosec (even at 6 times the regular dose), not Zantac (even at 8 times the regular dose).

It's like the problem has nothing to do with whatever those drugs treat, which is why it's frustrated my GI doctor so much.

[becky808]

Have you tried a one a day acid reducer like Prilosec OTC? It works better if you take it in the morning on an empty stomach. It does provide relief for my chest and back pain while I'm waiting for appts and tests to figure out why I have such bad heartburn. Sorry you're experiencing this. Unfortunately I understand.  

Also avoid coffee, chocolate, alcohol, peppermint (if you don't already).

[NykusCarus]

I have not had any specific heart testing done, unless you count pulse/blood pressure testing. Mine is always acceptable, often above average.

I will check into the casein.

Thanks so much for the suggestions, folks. Any more are beneficial and I will make a list of them to mention to the specialist when I go see him.

[MedicofOz]

Your condition may be related with an alkaline reflux (i.e; bile or pancreatic secretions) which does not respond well to any precautions against acid reflux while result in same symptoms. Moreover, these drugs may worsen your complaints as well.. I think you should get a specific invasive test for this condition performed in university clinics.

[CalGal]

Double-check to see if you're cross-reactive to casein, some celiacs are and it can produce a lot of symptoms.

[ayri]

hi, have you had heart tests? if yes and all is fine then i would suggest a couple of things, first any hernia no matter what size is troubling and must be corrected, afterall its protruding through the diaphram, and thats not normal, second stay right away from apple cider vinegar, if any of the things which you are taking to fix your pain is causing your pain then its the apple cider, look theres another possibility, its called diaphram rubbing, its very similar to the earth plates and when they touch,the end result is an earthquake, so what causes diaphram rubbing? it develops on exertion, meaning your working your chest muscles to hard, cheers.

[joyneau]

Until you get this resolved, I suggest you eat fresh papaya.
they use it in Hawaii for preemie babies and those who have digestive problems and too much acid. It works well!
Stop all dairy, sugars and artificial sweetners. And tomato based products---I know it sounds weird, but I did it and the burning actually stopped. It's only for a small trial period. You can do it. Two weeks tops. The first day for me continued to burn. By the second night, I was feeling relief.
Best of luck.