Just diagnosed with erosive esophagitis

[dickthegrouch]

At last I have an explanation for the waves of pain I suffered every night immediately upon lying down.
Unfortunately I have significant inflammation and they couldn't biopsy, I have to have another upper GI endoscopy in 8 weeks.
In the meantime I'm prescribed Prilosec before breakfast and dinner.

60+, 5'10", 185lbs, sedentary.
Diabetic II, gluten intolerant, and other chronic conditions.
Fully COVID vaxxed and boosted.

Staying gluten free is the hardest part of my life. I love Asian food and the soy sauce gives me pain.

But the pain was so bad I had to go find out what was going on.

Any advice from fellow sufferers?

[mahina]

1. I'm very sorry to hear it and wish you comfort.

[dickthegrouch]

3. Thanks /nt

[demosincebirth]

2. I don't know if it's the same but I've had is south of Jill spasms which are very painful. Doctor pu

[dickthegrouch]

4. Wow spell check did a number on that one

[SheltieLover]

5. Sleep on leff side, no chocolate, smoking, peppermint

Similar dx. Just spent 14+ hrs in er...

Jello is said to bind acid to foods.

Do research. I'm not a doc or nurse, but have been reading, reading, reading.

The esophagus makes neay a 90 degree left turn, which is why sleeping on left side is helpful. Reflux will be fighting gravity...



Ps - none of this info was provided by drs. Just an rx for a proton pump inhibitor, which i am very reluctant to use. (Increases risk of dementia 44%, heart attack 20%, osteoporosis, pneumonia, etc., etc.)

[tblue37]

11. Also hair loss.

[SheltieLover]

14. Thx

It's a terrible class of drugs!

Also, drinking a bit of baking soda water immediately neutralizes acid!

[canuckledragger]

6. I have nasty esophagus issues for a few years now

and suspect recently it's most likely due to diabetes and nerve damage from the high blood sugar. there's a nerve in my gut that when damaged, mimics a lot of the symptoms of acid reflux. (or causes it.)

Every few months I get taken down on account of it for around 2 weeks, unable to hold down much of anything, including water until my damaged guts heal themselves enough to hold down food consistently again.

I've had to make all sorts of lifestyle changes to accommodate it, from diet to trying to sleep on an incline, to keep the acid from pooling in a bad spot all night. And I'm not entirely successful or it wouldn't keep happening.

The diet changes have been trying to stay away from the general sugary stuff that is poison to diabetics, but not so successful with the carbs, on account of the 'eat what I can afford' diet I'm on lately that includes a lot of cereals, breads and pastas (because you can but lots for little and stretch out the food budget)

In general I stay away from spicy foods or anything high in citric acids, as I brought myself to tears, heaving my guts out in agony after drinking some orange juice near the end of an episode.

I've used a reclining chair to sleep in during these episodes, trying to stay upright as much as possible to keep that stomach acid from travelling where it shouldn't. It's not great but one of the only options for rest...the other being hiding out in a bathtub of warm water trying to do something similar. (I use a towel under my head/neck to keep it raised, and let the water regulate my body temperature, as it's hard to stay warm on my own without any food to fuel it)

Hope my tricks help...and take a serious look at diabetes as the probable cause of it all.

[flor-de-jasmim]

7. There are gluten-free soy sauces, if that will help. If the problem is the soy...

Substitutes for soy sauce (although tamari is on the list, and that has soy)

https://www.purewow.com/food/substitute-for-soy-sauce

[dickthegrouch]

9. Fantastic, thank you

[Midnight Writer]

8. Elevate the head of the bed. (3 or 4 inches is usually good) Avoid evening snacks and carbonated bev

Also, for some reason, I do much better sleeping on my right side, though I know that goes against what most folks say. You may want to experiment to see what works best for you.

I had reflux for years, took Prilosec and similar meds (which did help), but I currently haven't taken any meds for 5 years. Reflux is now rare for me.

[dickthegrouch]

10. I have an elevated bed, it made a huge difference.

But the underlying cause wasn't being addressed until now.
Thanks for the tips.

[pbmus]

12. Apple cider vinegar, aloe Vera juice from Walmart, equate fiber from Walmart

Fresh lemon in every glass of water, 1 tablespoon of vinegar in water, drink aloe Vera early …

Also use famotodine(Pepcid)only when I eat greasy meals. Prilosec does not allow breakdown of foods and makes matters worse for me. Also use tamari sauce to replace soy sauce.

I have been limiting dairy and when I do eat it I take a dairy digestive aid. I eat less at meals and only eat 2 major meals daily. Limited carbs and fats has been very helpful. Putting something in your stomach early morning and before bedtime that is buffering to stomach is very helpful ie…aloe, vinegar, fiber, lemon water. And drink your water…8 glasses daily

My main complaint is I cannot get rid of my belching

[SheltieLover]

16. Belching was my only sx!

Never had heartburn at all. Ever.

Had severely ulcerated lower esophagus, with lesion. 😓

Not willing to take proton pump inhibitor drugs.

[Sanity Claws]

13. Have you eliminated dairy?

I had GERD and was able to stop it from developing into erosive esophagitis. I eliminated dairy and gluten and got a lot of relief. On Edit: I also eliminated tomatoes. I love the taste of tomatoes but I can't handle their acidity.
If you are into alternative medicine, you might want to try celery juice on an empty stomach. It is supposed to improve your digestion.

[dickthegrouch]

15. Not entirely

I use 2% Lactaid and eat some cheese, but almost nothing else.
The Gluten seems to be the big one for me.

(I'm a chocoholic, giving that up would be really upsetting).

I drink a fair amount of earl grey tea, but no coffee, sodas, or alcohol.
I also gave up cigarettes 35 years ago for a similar reason.
The symptoms all came back in the last 3-4 months. Took way longer than I wanted to get to the doctor, but super glad I'm taking care of it again.

[SheltieLover]

18. I share your love of chocolate!

But it relaxes sphincter, allowing acid to back up into esophagus, as does peppermint. 😓



Have you considered a treadmill to lose weight & get diabetes better under control?

[pbmus]

21. So does caffeine, I have 1 cup coffee only mornings

And not everyday.

[SheltieLover]

22. I'm trying to adjust to all this...

Recent dxs of prediabetes (which I believe to be at root of all!), super high cholesterol, non alcoholic fat in liver, & now gerd.

Do you take the proton pump inhibitor meds. I'm terrified of them!

[pbmus]

23. NOOOOO. was prescribed, then read the side effects

And interaction….when I read that it inhibits digestion… I thought WTF, I don’t want to inhibit digestion…

[SheltieLover]

24. My thoughts exactly!

[SheltieLover]

25. Have you tried keto?

There is a chiro, Dr. Berg that a couple of friends swear by. Lots of you tube videos on nutrition.

I've watched a few. He seems very knowledgeable!

So with all my new dxs, I'm not supposed to eat:

Sugar
Fat
Carbs
Salt (hbp new dx also)

Wtf is left?

[pbmus]

26. Diets can make things worse...

Limiting certain foods yes, sugar, fats, carbs, salt… is necessary and helps but

I have a registered nurse, wellness specialist as my mate and she has guided me through a lot of crap…

[Tetrachloride]

17. gluten free soy sauce

https://html.duckduckgo.com/html?q=gluten%20free%20soy%20sauce

ask your restaurants to use also ?

[SWBTATTReg]

19. I had such a situation, and my stomach acid ate through my blood vessel in my esop. After the

corrective surgery (and barely making it to the hospital in time to stop the internal bleeding from the blood vessel being corroded by stomach acid), I am now on a routine of Lansoprazole 30 mg. (one pill daily), which keeps the stomach acid at bay. Thus, it's been a long time since I've had any incidents w/ this particular situation.

Prevacid is like Lansoprazole too, and Prilosec, so you seem to be on course for what you need for treatment-wise (but I don't know about the diabetes situation or the rest of your situation).

I never did really have any pain associated w/ this condition, it was more or less, the leaked blood into my stomach caused me to throw up, kind of similar to what an alcoholic does when they throw up, and what the saving grace was for me, was that I had another episode of throwing up blood, while I was in the emerg. room right in front of the docs.

At first they couldn't figure out what was going on, ran tests (my alcohol level was 0% when they kept asking me about alcohol intake (so be sure that you put a note or update to your medical notes you carry in your wallet re. your medical situation that you have an esop. issue so they won't waste time on misdiagnosis of your situation (like they did w/ the drinking questions to me, obviously it's a common occurrence w/ alcoholics).

Good luck to you. With my treatment (of Lansoprazole), no problems thus far have been experienced, so you can have a life afterwards (and it's been at least 10+ years since).

[BlueGreenLady]

20. Coincidentally, I have the same health conditions you have.

You have much worse conditions than I do so If I were you I would follow your doctor's advice. In addition I do the following
1. Omit hidden sources of gluten like the soy sauce and Cheerios which often contains gluten. I was getting my gluten reaction (dermatitis herpetiformis) after eating Cheerios which often are dusted with wheat in the factory.
2. Drink cabbage juice to calm and heal gastric inflammation. Do a Google search for cabbage juice and ulcers. Here is one

(I do not have any affiliation with Dr Berg but I like his approach to alternative medicine.)
3. Do not lay down for 1-2 hours after eating to avoid acid reflux. I often sleep in a recliner so this is easy for me.
4. Take a slow 1-2 mile walk each day. My dog will not let me get out of this.

[SheltieLover]

27. I love Dr. Berg!

Haha - dog won't let you get out of walk.

Have you tried Dr. Berg's supplements?

[BlueGreenLady]

28. Yes

Some of them are very expensive, so I get them from other sources. He is a somewhat controversial figure so I ignore some of his libertarian politics but try to follow most of his health advice.

[SheltieLover]

30. Where do you find them discounted, if I may ask?

In addition to all my other recent dxs, I have gallbladder sludge. 😓

Do you follow his keto diet? Having trouble giving up carbs. 😏

Ty for sharing!

Ps - I didn't realize he is a rwnj.

[BlueGreenLady]

31. Me too. I'm a carb addict.

I am trying to do better on the keto diet and I do better if I juice the veggies. Think Dr Berg recommends about 10 cups of veggies a day. No can do that many.

Dr Berg's son was on the outs with him and posted that he was a Scientologist and rich scammer. To me, it seemed like Dr Berg was pushing natural remedies instead of getting the vaccine. I am a believer of using both allopathic and naturopathic treatments. I take what works for me from each. Dr Berg's natural Covid remedies might work for very healthy people who never slip from a healthy diet, but that does not apply to many people. I think almost everyone should get vaccinated.

[SheltieLover]

33. I agree completely!

Big proponent of vaccines here.

I, too, take what works from both types of medicine.

[BlueGreenLady]

32. P.S. I do a Google search for

quality vitamins at a cheaper cost.

[SheltieLover]

35. Thx for sharing!

Have you found any one site to sell his supplements cheaper?

Tyia!

[SheltieLover]

29. Bananas said to coat esophagus

https://www.aarp.org/health/conditions-treatments/info-2017/foods-help-acid-reflux-fd.html

Slippery elm tea also said to be good for rebuilding mucosal lining to provide protection.

[MOMFUDSKI]

34. Type 2 diabetic for last 27 years.

Prilosec for YEARS now. Diabetes weakens upper sphincter at top of stomach and allows acid UP. The 4 offenders, according to a gastro doc, are chocolate, coffee, soda, and peppermint. Also have esophageal spasms on occasion. For that I take baking soda mixed in water and it helps. Always go to sleep on my left side. So I mix my coffee half reg and half decaf, don't eat chocolate every day, stay off soda which I never did drink much of. Had to quit my beloved blackberries as I finally figured out they were causing daily stomach pain. Off all berries. We have a mulberry tree here in Milwaukee at our summer trailer so will give them a go when they ripen but not having much hope. Take care of yourself.

[dickthegrouch]

36. Thank you all for the tips, advice, and good wishes

That gluten-free soy, and soy substitute, will probably save my life.
Now to find out if the restaurant I've been eating at for 35 years will do some custom recipes.

[EmeraldCoaster]

37. Weigh everyday multiple times.

Consume less calories than you burn. loose 25 pounds and many of your symptoms will disappear.

[Warpy]

38. Eden Tamari is wheat free soy sauce. it packs a flavor punch, so you can use less

I don't have erosive esophagitis because I've been on Prilosec forever. I take mine in the morning and if I start to feel that volcano under my sternum start to erupt, I take a Pepcid at bedtime. However, in the healing phase of inflammation like you've got, the Nexium formulation twice a day is necessary. Fortunately, it's off patent and fairly cheap at Wally's.

My biggest problem food is canola oil. I can tell if there's a single drop of it in any restaurant or prepared food. That's when I need the Pepcid.

Other things that relax the valve at the top of the stomach are methylxanthines (coffee, tea, chocolate--sob), solanine foods like tomaoes and potatoes, and some medications. A food diary will help you avoid your own trigger foods.

But definitely check out the Eden tamari. It makes Kikkoman taste like dishwater. Amazon has it if your local health food store comes up empty.

[pnwmom]

39. At the time I was diagnosed with gluten sensitivity I had your problem.

YOU DON'T HAVE TO GIVE UP SOY SAUCE to be gluten free. But you might have to give up your favorite Chinese restaurant, if they won't prepare your meals without gluten ingredients, including wheat-containing soy sauces.

Kikkoman soy sauce is real soy sauce -- just rice, soy, salt, sugar. It just doesn't have wheat, which is NOT a necessary ingredient of soy sauce (even though in America it's often the first listed ingredient.)

https://www.walmart.com/ip/Kikkoman-Traditionally-Brewed-All-Purpose-Seasoning-Soy-Sauce-10-fl-oz/34276996?wmlspartner=wlpa&selectedSellerId=0&wl13=3098&adid=2222222227734276996_117755028669_12420145346&wmlspartner=wmtlabs&wl0=&wl1=g&wl2=c&wl3=501107745824&wl4=pla-294505072980&wl5=9033254&wl6=&wl7=&wl8=&wl9=pla&wl10=8175035&wl11=local&wl12=34276996&wl13=3098&veh=sem_LIA&gclid=Cj0KCQjw2cWgBhDYARIsALggUhqTVn-kQC7sEuruRVi7AHnFJqjwjiFjGN8jAtyhry7dyt0YdI01B4IaAqGEEALw_wcB&gclsrc=aw.ds

Unfortunately, with a gluten-sensitivity like ours, it's as bad as having Celiac: just a small exposure to gluten can set off symptoms. So you really should try your best. That means reading labels, and being suspicious of anything labeled "natural flavors." That could be barley, which isn't required to be labeled, unfortunately. And if they don't list wheat, barley, or rye, but say that the food was prepared in a factory with one of those grains, that means you should assume it's contaminated -- unless it's also labeled as gluten free, which means it was tested to meet the standard.

I was totally daunted by the diet at first, but very quickly could feel how much better I was doing. Not only did my intestinal bleeding go away (the symptom that first brought me to the GI doc), but my constant heartburn and -- for an extra bonus -- the fibromyalgia I thought was just part of the aging process.

So, the diet is a pain, and it's annoying having an illness that people like to make fun of. But I hope you will be as improved on a real gluten-free diet as I am. I'm never tempted anymore; I would no sooner eat gluten now than drink a cup of rat poison.

But one question: have they already biopsied you for Celiac or is that the purpose of the second endoscopy? Because for that test to get reliable results, you need to be regularly eating gluten in the weeks/months before the test. So if that's the purpose of the test, they wouldn't normally tell you to avoid gluten at this point.

In my case, the doctor didn't do a biopsy for Celiac because it wouldn't change his recommendation. Since my intestinal bleeding was stopped by a gluten-free diet, I didn't need to have an endoscopic biopsy to learn whether I had Celiac, too. I just had to stay off gluten.

Good luck!