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Worsening, uncontrollable GERD warping the mind.

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GERD & Acid Reflux
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Posted 8/28/2015 2:25 AM (GMT 0)
Brief history: indigestion, fatigue, and ADHD as a child (no meds). At 18 years old, acid reflux comes on strong, urinary frequency is very high (particularly at night), right sided abdominal pain develops at 21/22. I went from Tums to Pepcid Complete to PPIs (all of them) to even more PPIs (all of them x 2 dosage), to even more PPIs (all of them x 3-4 dosage). Of course I tried all the home remedies - no gluten for a month, no dairy for a week, apple cider vinegar, this remedy, that remedy... I am 26 years old now.

In the meantime I get literally tens of thousands of USD spent on medical tests (several endoscopys, blood test, thyroid test, HIDA scan, ultrasound, CAT scan of abdomen, small bowel series, etc.). Have gone to 3 different primary care doctors, 2 different GI specialists, and a psychiatrist for this condition.

At the lowest point in my life when my GERD had me in a crippled state about 9 months ago, I cut the PPIs and moved onto Betaine HCl with Pepsin (3-6 capsules per meal) and digestive enzymes. I did this because I thought maybe 'too much stomach acid' wasn't the problem and maybe it was 'too little stomach acid'. For whatever bizarre reason, this worked and my symptoms disappeared entirely. This was ~9 months ago, and ever since they've been creeping up on me again. As I write this post, my suffering is an 8/10, with 10/10 being the worst it ever gets.

My diet is basically down to cashews, soy milk, very basic cereal with 3-7 ingredients, kale, pumpkin seeds, sunflower seeds, eggs, olive oil, salt and pepper, and wild caught cod fish. There are maybe 2-3 food items I will eat in a given week that are not on this list. I do not drink and I do not smoke. I've gone from being 6ft 1in at 190 lbs (3 years ago) to between 145-155 lbs in the last year.

I'm not really sure where to go from here... I've come to realize that in the past few years, GERD is starting to erode my mind. I'm getting paranoid about toxins in the food and water supply and even drink spring water and all organic food now... Sometimes its all I talk about.... Thoughts of GERD, death, and suffering are dominating my mind. I've been seeing a Psychiatrist who has put me on antidepressants on and off for a while now and they seem to make my condition much worse when I try them (particularly GERD and urinary frequency).

I feel like I need to take a new approach to this and I think time is important not only because of my physical condition but also my mental condition. My family (immediate, as well as aunts and uncles) has a history of Rheumatoid Arthritis, Celiacs Disease, IBS, Crohn's Disease. This makes me think it may be autoimmune related, but I have brought this up, even in writing, to all of the medical professionals I've been to and they just seem to disregard it entirely. My GI specialist said that the small bowel series basically out ruled Crohn's Disease.

What kind of doctor should I see or what kind of strategy should I develop next? Thanks for taking the time to read this post.
Posted 8/28/2015 4:51 PM (GMT 0)
This is a horrible disease that I wouldn't wish on my worst enemy!!!! I have had GERD/Hiatal Hernia for over 30 years now and although I have had some good years in between for the most part it is a struggle. The past few months I have had more and more tests and the problem is with long term use of PPI's the tests actually show no erosion because of the healing etc..........and the doctors pretty much don't do anything. Ended up in the ER again last week with what I was sure was a heart attack but again, no cardiac warnings showed up so it goes back to this horrid disease!!!! Wish I could give you some advice, but other than taking a Zantac and Tums which they told me to take at the ER in addition to the PPI's as needed that is all I can say. For me it doesn't seem to matter what I eat, there is no trigger point and I do seem worse when I have NOT eaten or eaten much versus when I eat the wrong things or overeat.

Wish I could be more positive, but unless somebody out there somewhere has had some positive feedback to give us we just keep searching and posting on this awesome forum knowing that at the very least we are not alone!

Keep your chin up and keep searching.
Posted 8/28/2015 6:04 PM (GMT 0)
Hi EJohn, You're not alone as to GERD battle. I am a cancer conqueror 8 years ago. Had GERD last June 14. I did not even know how horrible this thing until it happened to me. The feeling is worst than a chemo side effect. just to give you an insight, been to E.R., urgent care and all test, Xrays and CTscan. Yes USD expenses is a lot but when I was on that GERD attack, I would do anything to get better.
(Just like what Kimmysnores says, don't even want this on your worst enemy).

If all your test and doctor's visit are all normal then there's nothing wrong with you. Like me, I worry that it could be something else. I've been to a lot before, but I always say... I can battle this and get better.
My doctor give me all sort of anxiety medications. I realized, those are just an easy way out for doctors. Give me PPI and anxiety meds. Adter 6 weeks of taking those, I got worst. Those medications with my thyroid meds did not get along. I ended up losing 14 lbs in few weeks. Too weak and too tired even chewing my own food. My doctor keep telling me to continue on my PPI meds and anxiety meds. Until, I attended a healing prayer, meditation. I claim that I can do this. Then I start having my journal on what food I ate. Started my strict diet. Added 2 bottles of Boost on my diet and was drinking warm water with honey. Then I start weaning myself from PPI (did it by God's grace, none of those home remedies worked when I was on PPI/ do no why). Stopped taking my anxiety meds. Then I took Zantac 3 x a day for 6 days. Then wean myself again from Zantac. It's not an easy journey having acid rebound, getting tired, getting hungry and nothing seems to work. I'm eating small portion. White rice and fish. I still do my meditation prayer in the morning (this helped me). We are all different, I'm just sharing my experience and hope this help.

I thank to all post on this site, I learned from each other's experience. That helped me, knowing I'm not alone and things will be ok. Healing takes time. But we can do it. (For me, with God nothing is impossible). God bless.
Posted 8/28/2015 6:55 PM (GMT 0)

EJohn said...
Brief history: indigestion, fatigue, and ADHD as a child (no meds). At 18 years old, acid reflux comes on strong, urinary frequency is very high (particularly at night), right sided abdominal pain develops at 21/22. I went from Tums to Pepcid Complete to PPIs (all of them) to even more PPIs (all of them x 2 dosage), to even more PPIs (all of them x 3-4 dosage). Of course I tried all the home remedies - no gluten for a month, no dairy for a week, apple cider vinegar, this remedy, that remedy... I am 26 years old now.

In the meantime I get literally tens of thousands of USD spent on medical tests (several endoscopys, blood test, thyroid test, HIDA scan, ultrasound, CAT scan of abdomen, small bowel series, etc.). Have gone to 3 different primary care doctors, 2 different GI specialists, and a psychiatrist for this condition.........

Welcome to the forum EJohn.  And I'm terribly sorry that you have gone through years of suffering dealing with your symptoms.  I have gone through something very similar to you.  I beat it once and then it came back (chronic gastritis and erosive esophagitis now).  I'm at a 6/10 as I'm writing this so I'm not feeling very well today, but I'm a lot better than I was 2 months ago when rebound reflux sent me to the ER.

I think I might be able to provide some guidance as I have been experimenting with food since 2011, have kept a detailed food and symptom journal, and I have learned a lot about my own body.

EJohn said...
At the lowest point in my life when my GERD had me in a crippled state about 9 months ago, I cut the PPIs and moved onto Betaine HCl with Pepsin (3-6 capsules per meal) and digestive enzymes. I did this because I thought maybe 'too much stomach acid' wasn't the problem and maybe it was 'too little stomach acid'. For whatever bizarre reason, this worked and my symptoms disappeared entirely. This was ~9 months ago, and ever since they've been creeping up on me again. As I write this post, my suffering is an 8/10, with 10/10 being the worst it ever gets.

According to some in the medical profession, some people don't produce enough acid and when they prescribe what you've just mentioned their symptoms get better, so I'm not surprised this worked for you.  There are some GI doctors that prescribe HCL pills to help people with their GERD symptoms. 

EJohn said...
My diet is basically down to cashews, soy milk, very basic cereal with 3-7 ingredients, kale, pumpkin seeds, sunflower seeds, eggs, olive oil, salt and pepper, and wild caught cod fish. There are maybe 2-3 food items I will eat in a given week that are not on this list. I do not drink and I do not smoke. I've gone from being 6ft 1in at 190 lbs (3 years ago) to between 145-155 lbs in the last year.

According to Dr. Daniel Twogood, certain foods cause inflammation in some people's bodies.  Nuts is definitely one of them.  Cashews, Walnuts, and Almonds do cause me problems sometimes, though I make sure I chew them very, very well before I swallow them.  I have chosen to stay away from nuts, though, for 90 days.

Definitely stay away from pepper as it is known to cause problems for people with GERD.   I cannot have pepper of any kind, not even a little bit.  Eggs cause GERD symptoms in some people, so if I were you I would keep a food journal and keep track of what you eat, in what quantities, at what time of day, and if there are any symptoms after you eat (even if it's a few hours later, as long as it's inbetween meals).

Wild caught fish is a very good idea, I personally enjoy salmon, halibut, sockeye salmon purchased from the health food markets.  It's one of the few foods my stomach and esophagus tolerate well.  I also eat sushi once or twice a week (I make sure it's wild caught as farmed fish has more mercury).  I stay away from ginger and wasabi and only eat the sushi traditional style with no extras (ponzu sauce is okay). 

A year ago I was 5' 8" and weight 186 pounds; today I weight 145 and I have lost a lot of muscle mass.  Because of my grade B esophagitis, I have decided to go on a very strict, all-natural, nutrient-dense diet with the guidance of my GI doctor (my 3rd one in 4 years), a nutritionist, and a chiropractor named Dr. Daniel Twogood.

My plan of attack was to eliminate all known GERD trigger foods (fatty foods, spicy foods, chocolate, peppermint, etc.) as well as eliminate gluten, all dairy, all artificial sweetners, MSG and it's ilk for 90 days.   Dr. Twogood stated I could reintroduce dairy and gluten after 90 days at the rate of one item per week to see how my body responded.

I don't eat any canned foods (they are usually loaded with additives that are not good for you), frozen foods, or any processed foods. 

During my first 90 days I'm sticking to 7 to 8 basic foods:

* Certain green vegetables  (nothing spicy and no bell peppers as they are too acidic).

* Certain fruits (Organic bananas and peeled red apples are my daily breakfast, I don't eat citrus fruits or fruits with seeds, so no strawberries, but blueberries are tolerated okay).

* Home made bone broth  (I make this once a week now and drink it almost daily).

* Home made vegetable or chicken soup (loaded with carrots, some potatoes, green beans, no onions, no garlic for 90 days).

* Organic apple sauce

* Organic sauerkraut juice (good source of probiotics)

* Small amounts of steamed white rice (my body doesn't tolerate brown rice yet)

* Wildcaught fish (salmon, halibut, yellowtail are my 3 favorites, but most fishes will do).

* Vegetable smoothies (Half a banana, kale, baby spinach, argula, apple, 1 teaspoon of flaxseed or hemp oil) - CAVEAT:   Wait 6 to 8 weeks before you do this because your stomach / esophagus needs to heal to some degree first.  Do not drink vegetable smoothies until you start feeling better. 

* After about 4-6 weeks, you should be able to add organic beans and legumes.  However, as with any of my suggestions, everyone's bodies are different, which is why you should keep a food journal. 

* Organic baby food - On my really bad days I will only eat pureed food.  I either make it myself or if I'm lazy I'll go to the store and buy some packets of organic baby food. 

I'm toward the end of my 2nd month of doing this and I'm finally starting to see traction.  I can barely wait to see how I feel by the end of September.

Posted 8/28/2015 7:08 PM (GMT 0)

EJohn said........................................
I'm not really sure where to go from here... I've come to realize that in the past few years, GERD is starting to erode my mind. I'm getting paranoid about toxins in the food and water supply and even drink spring water and all organic food now... Sometimes its all I talk about.... Thoughts of GERD, death, and suffering are dominating my mind. I've been seeing a Psychiatrist who has put me on antidepressants on and off for a while now and they seem to make my condition much worse when I try them (particularly GERD and urinary frequency).

I feel like I need to take a new approach to this and I think time is important not only because of my physical condition but also my mental condition. My family (immediate, as well as aunts and uncles) has a history of Rheumatoid Arthritis, Celiacs Disease, IBS, Crohn's Disease. This makes me think it may be autoimmune related, but I have brought this up, even in writing, to all of the medical professionals I've been to and they just seem to disregard it entirely. My GI specialist said that the small bowel series basically out ruled Crohn's Disease.

What kind of doctor should I see or what kind of strategy should I develop next? Thanks for taking the time to read this post.

EJohn,

I feel your pain.   I am not a doctor or any kind of expert, just a regular guy who has been suffering for years on and off and decided 4 years ago to start researching and experimenting with my body because I wasn't getting the help I needed from the established medical community.

I am on my third GI doctor because the first two were not on my "team".  Sometimes, as a patient and a customer, you need to fire your doctor and find one that is willing to treat you, preferable one that has more holistic training (they are out there, they just aren't all that easy to find).

Some gastroenterologists think that GERD and some other digestive maladies MIGHT be autoimmune related.  Unfortunately, there isn't enough research yet to substantiate these claims. 

I made the decision to switch to all organic and all natural foods to the point where if I go out to eat I only eat at sushi bars and at restaurants that serve all organic foods.  Even then, I rarely go out to eat now, most of my foods are home made.  My hypothesis is this:  we have well over 20,000 food additives that we didn't have 5, 10, 20 or even 30 years ago.  Many of these food additives have not been tested for safety in humans. 

For example, I used to think sports drinks were safe, but the chemical food dyes and other items in there are just not good for you.  So for beverages now, I only drink filtered water (reverse osmosis), filtered alkaline water, home made ginger or chamomile tea, or coconut water.  That's it.  After my 90 days I'll introduce almond milk and juices like real cranberry.

Eating only organic, natural foods and only 7 or 8 of them at that for 90 days has NOT been easy.  I'll be honest, I've slipped a couple of times and both times I've regretted it.  I've also over eaten a couple of times and it caused me suffering for days.  But for the most part, I've stuck with it and now I'm entering my 8th week of my 90 day food experiment and it's starting to pay off.

I can relate to your mental state.  Several months ago I went to the ER because I could barely breathe, had chest pain, dizziness, and major anxiety.  Luckily it was just a very bad case of GERD that irritated my esophagitis and gastritis, however, ever since then my anxiety levels were off the charts, that is, until I started doing something.  I thought I was losing my mind because I began thinking that nearly all foods would make me sick.

Well, I rediscovered meditation and though it took me a couple of weeks to get the hang of it, it has totally changed my life!   It allowed me to take control of my anxiety, to focus on the present (my mind tends to wander), and help control my esophageal spasms (those are the worst!).

Seeing the foods that you are eating I would rethink your nutrition strategy.  I recommend Dr. Jamie Koufman's book, DROPPING ACID, as it has been instrumental in guiding my foods choices.  Also grab Dr. Twogood's ebook regarding chronic pain because it definitely ties in to our digestive tract (I think it's under 3 bucks).

I hope you find relief soon and if you ever have any questions, you have my permission to hit the envelope icon under my name and e-mail me.

Good luck to you,

Posted 8/28/2015 9:47 PM (GMT 0)
Hi Peabs, thank you for the above info. I always find your post very helpful. Thank you for sharing, I did try the organic apple for 2 days now and it seems to help me. For some reasons, I feel sleepy after eating them. LOL. I did few slices yesterday and few slices today. With the strict diet I had, It feels so good that I can eat apple.
God bless.
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