Is this really Hypersensitivity?

Hi.. this is my first post and am sharing my problem in hopes to gain some of your valuable advice...

I have been experience problems over the past 6 months as follows:

Initial Symptoms: Mild sore throat & slight back pain (between shoulder blades) about 2 hours after eating evening meal.
GP Diagnosis: Silent Reflux recommended taking a PPI. But I experienced bad reaction to Lansoprazole, Omeprazole and Zantac.

GI Consultant Referral: Tests 5 months ago: Endoscopy (normal), CT scan (normal), Ultrasound (normal).
GI Consultant Second Referral: 24 Ph & Manometry showed week LES and Pathological Acid reflux in the supine position (sleeping), but no daytime reflux correlation to symptoms (back pain).

Recommended PPI. Managed to tolerate Nexium: Initial 40 mg or a month, then dropped to 20 mg a day due to stomach pains.

Have taken Nexium for 3 months now. Symptoms showed little improvement (Back pain & throat globus still present).
Tried acupuncture for 5 weeks for back pain (as suggested by my consultant) - seem to make the back pain worse!

Adhered to all the recommended diet (low acid, no caffine, alcohol, no gluten, no lactose) and lifestyle changes (eating before 6pm, sleeping on elevated bed).

In the last 3 weeks symptoms have become worse: Backache is now occurring every day after every meal, along with belching and regurgitation of food during the day (which I was not getting prior to taking Nexium). Wonder if the acid reflux is getting worse, or the PPI is making the symptoms worse?

Gi Consultant: suggests that back pain is due to Hypersensitivity, and recommended I take Amitriptyline. I am not keen as I have just finished a PhD and am looking for jobs - so need to stay alert. He also suggested Pregabalin or Gabapentin as an alternative. Not keen on taking these nerve suppressing drugs as I am not convinced it is hypersensitivity. Also, these drugs will just dull the pain - but not stop the reflux occurring.

Am having a hydrogen breath text next week to check for Small Intestinal Bacterial Overgrowth.
GI Consultant has indicated that I could have another scope or a MRI scan - but feels the prognosis will be the same.

Am normally a confident and happy person, but this is affecting my life - am not sleeping due to anxiety, and finding it difficult to concentrate on anything else (making job hunting a present very difficult). Despite having a been investigated 5 months ago (with normal results), I am concerned that the reflux has progressed and the increasing back pain is an indication of something far worse.

Can anyone else offer any advice or have experienced similar symptoms...
Thanks....

Welcome to the forum. I hope you get a lot of responses!

You can always try starting with a very small dose of the medicine to see how it affects you. I have to do this because I usually react badly to a full dose of just about anything new. Talk to the doctor first though!

A lot of people have good results with amitriptyline.

The "nerve" meds you mentioned are an interesting thought, but I don't comprehend his reasoning.

You might be one of us who could benefit from keeping a food diary, just in case you have "trigger foods." Many people don't have problems with the "traditional" GERD foods, but we do have sensitivities to certain foods. You can look up many threads on food journals and trigger foods by putting the words into the search box at the top of the page. I got rid of a lot of my problems by eliminating certain types of foods that were seemingly unrelated, not the "usual GERD suspects" but all with a common connection. Worth a try, free.

Hi there again... thanks for your replies.

Sirishaa - Sounds like you have been suffering too. Did your back pain disappear by itself then? How do you know you have gastritis? I too suffer for being anxious over eating. I have followed the acid free diet and lost so much weight I have gone down 2 dress sizes! Also, not drinking alcohol and making sure I eat before 6-7pm makes it impossible to have a decent social life :(

Alcie - I was prescribed a very low dose (10mg) but am reluctant to try it as I seem to really react to any medication I take. I am concerned about feeling very sleepy during the day and having brain fog that I have read from other forums. As I am currently looking for work, I need to keep alert.
Although, I have thought about halving the dose and trying 5mg to see how that affects me - but just do not want to take another drug (Taking Nexium is bad enough!). I did ask my GI consultant for a less sedative medication and he suggested Pregabalin or Gabapentin which is used for neuropathic pain. His reason is that the reflex has caused the nerves in my esophagus to be oversensitive, which (apparently) is a common symptom with IBS sufferers. However, my main concern is that I am unsure that my back pain is really due to visceral hypersensitivity? Any thoughts....

I like your idea of keeping a food diary - it is something I have considered. I have restricted my diet and given up gluten, lactose, caffeine and alcohol along with keeping to acid free diet - but have gone back to gluten and lactose and had no reaction. Its difficult to pin-point the actual food that maybe a 'trigger'. Will certainly look look further into this as you suggest. Thanks,

Paul -
1. Have not identified trigger foods or beverages - its certainly worth further investigation.
2. Yes, I have elevated my bed, use a wedge pillow and sleep on my left - which seems to make a big difference. Although I so miss sleeping on a flat bed and it makes taking vacations so difficult now.

BTW: Love your message saying you have 'taken total ownership of my health'. Something I feel I need to do also.

Hi Hartshon,

A wedge pillow never helped me, though I am glad to hear it is helping you. For me, elevating the head of my bed about 5 to 7 inches allowed me to sleep flat and on my back and alleviated my symptoms better than the different wedge pillows I tried. At first I used wooden blocks to elevate the head of my bed, but then I went and ordered some adjustable metal ones online and used those instead.

I'm convinced that many of our GERD symptoms are caused by our diet, by the foods we drink, the additives in our foods, and how we sleep at night. Which is why I habitually ask people if they know what their trigger foods are (most people don't know or don't know all of them). We have well over 10,000 chemicals, dyes, and additives in our foods today that we didn't have 40, 30 or even 20 years ago.  

The vast majority of them have not been tested long term on humans either. I'm not surprised that GERD issues have steadily increased over the years and that trend doesn't appear to be going away soon.

If you would have told me a few years ago that I would one day switch to all organic foods and beverages, I would have thought you were nuts.  My, my, my how things have changed for me.  If I see a chemical on a label that I'm not sure of or there hasn't been adequate research done on it, I avoid it (hey, that's just me  and the mental state that I'm in).

I think you should keep a food journal and keep track of the foods that you eat, what time you eat them, and in what quantity. The more common trigger foods are fatty foods, fried foods, spicy foods, foods with certain spices in them (such as black pepper, white pepper, chilli pepper, etc.), anything with caffeine, alcohol, carbonated beverages, chocolate.

Dairy, gluten, MSG, foods / beverages with sulfites in them, and aspartame can cause inflammation in some people which is why Dr. Daniel Twogood advises people to stay away from them for 90 days as this gives a chance for your body to heal and then you can introduce them back into your diet one day at a time. This elimination diet along with the low acid diet from Dr. Koufman has made a major difference in my quality of life. It's a very slow process in my case, but I'm happy to be seeing results, even if it's minor.

Thank you for the kinds words about my signature. This is my second bout with gastritis and esophagitis and this time around it's a lot worse than the first time. I conquered it before but it came back with a vengeance because once I started feeling better I stopped taking my Dexilant and I went back to eating bad foods and drinking alcohol (I drank lots of alcohol on the weekends and it was enough to cause my symptoms to return).

So this time around I decided that I was going to do whatever it took to get better. I've become rather obsessed with it, having read countless hours worth of articles, medical journals, reading people's experiences in forums, and even striking conversations with total strangers when I hear them mention their digestive issues.

They say pain is a great motivator and in my case this is true. I never want to feel pain like that again and I'm sick and tired of going to the emergency room for chest pains, breathing problems or SVT (rapid heartbeat); all of these issues have been a result of having GERD for so many years and me ignoring the problem.

So this time around I put myself on a very strict, low-acid diet, and all the advice I've been giving people on this forum is advice that I follow myself. As a former daily coffee drinker it was difficult to quit drinking coffee and alcohol, because I love to go wine tasting and I love sampling new craft beers. But it's a small price to pay because you cannot put a price on good health.

I hope you find the help / advice that you need and that you start making progress toward feeling better.

Good luck to you.

 

Hi Paul,
I too have elevated my bed with wooden blocks - but not sure if it is high enough. I may investigate the adjustable ones you mentioned - although I'm not sure how easy they are to get in the UK... The wedge pillow adds another layer, but I do find I slip down on it while I sleep - so its not ideal. I am also reluctant to go away - what do you do for vacations now?

Interesting that you feel food is a contributory factor to reflux. I have always been careful with my food and eaten very healthy food. Due to my reflux I adopted the low acid diet (Dr Koufman) for about 2 months or so, but it is very restrictive and quite difficult to adhere to if you go out to eat. Not heard of the Dr. Daniel Twogood diet - so may need to investigate. I have also experimented with avoiding gluten and lactose, but not sure if it made much of a difference. I think having a food diary would be a good move forward as I am not sure what my trigger foods are. Just wondered how you manage when you eat out?

You sound like you have done some considerable research and certainly taken back control of your health. How long has it taken to recover the second time around?
Thanks for your best wishes. This is all very new to me and I am still struggling with accepting this as a permeant state of being. Am hoping I will wake up and it will all go away... or I can find a way of managing the symptoms to allow me to get on with my life. Any advice on that would be helpful...

Hi Hartshon,

When I go on vacation I do one of two things:

a. I contact the hotel / motel ahead of time and tell them about my medical condition and ask them if it's possible for them to raise the head of my bed. Usually they are able to get their building engineer to accommodate this request.

b. I bring my adjustable bed risers with me and I adjust my own bed. Though I try the first option first.

Here is an example of what one brand looks like (this is not an affiliate link):

http://www.amazon.com/Home--Adjustable-Risers-8-inch-Riser/dp/B00MH74S16/ref=sr_1_1?s=home-garden&ie=UTF8&qid=1436885175&sr=1-1&keywords=adjustable+bed+risers

Yes, Dr. Koufman's diet is quite restrictive, especially during the introductory "induction" phase, but once it becomes a lifestyle-habit change, it's not so bad.  I stay focused on my primary goal which is to allow my esophagus and stomach lining to heal 100% so I can go back to eating some of the foods I love.

 Since I'm currently on my first month of the healing process I am only eating out at two places:

* Food establishments that serve organic, low-fat meals

* Sushi bars (I currently only order miso soup with no onions and traditional style fish sushi with no ginger and no wasabi - I find that 3 to 4 pieces of sushi calm my stomach down and goes down easily). I find that for me the best combination has been salmon and tuna sushi. I'm not sure why, but I eat this now once or twice a week. Anything more than that and I'd be getting concerned with the level of mercury exposure (most sushi bars served farm-raised fish and they tend to have higher levels of mercury).

Eating more than 4 pieces at a time in my current condition would cause me too much pain, so I keep it at 4 pieces and under (yes, I took one for the team on more than one occasion).

Though 95-97% of my meals are cooked or prepared at home or at work. My meals are easy to make (except the bone broth as that takes 12-24 hours to simmer) because currently I'm sticking to 7-8 basic foods and eating nothing else (think green beans, bananas, peeled apples, organic baby food, homemade bone broth, homemade chicken vegetable soup, steamed white rice, assorted green vegetables - except green bell peppers; I also eat fish, lean meats such as turkey and chicken without the skin, etc.) for at least 90 days or until my pain goes away, which ever comes first.

It's a very boring, mundane diet and it's quite a challenge staying focused because there are always temptations from birthdays, weddings, happy hour with co-workers, going out with friends, and having to say "no" to pizza, hamburgers, fried foods, etc. is definitely not easy. To make it easier on myself, I pretty much have stayed away from all my favorite haunts (bars and restaurants) for awhile. Maybe in another two or three months I'll try a slice a pizza.

Dr. Daniel Twogood specializes in chronic pain and I saw him speak a few months ago at one of the local health food stores. Being a natural skeptic, I did a lot of research on the what he talked about. Inflammation is a major cause of many of our health issues, so it made sense to me that some people were having issues because of a possible food allergy or reaction to the medications they were taking.

I'm not going to bore you with the details here, but suffice to say I decided to stay away from all the foods he mentioned for 90 days and slowly introduce them back into my diet to see if any of them are triggers for me. I've decided that I'm not going to expose myself to MSG or Aspartame for the rest of my life anyway, even when I do get better. Those two are definite triggers for me and too much MSG actually causes my heart rate to jump into what's known as SVT.

To answer your third question: I went to the ER about a month ago, so I consider myself on my first month of recovery, so I haven't beat this yet, not by a long shot. Because of my strict adherence to my diet, my symptoms have finally started to diminish. I'm still in constant pain - the pain is like a constant pressure right where my esophagus is and sometimes it will hurt to the point where I can't move around much (that happens if I over eat or sleep in an awkward position).

But overall my symptoms have gotten better. It's difficult for me to say how long this time around it's going to take me to heal. It could take 6 months, it could take a few years. I plan on working closely with my new GI doctor as well as not deviating from my strict low-acid diet. And I've told myself that when my pain is gone and an endoscopy shows that I am healed, I'm still going to stick to my strict diet for at least an extra 3 months, just for good measure.

I don't want this problem coming back, ever. 

Some recent tips I learned from members of this very forum that have helped me deal with the symptoms, especially after eating a meal:

* Chewing gum for 20-30 minutes after a meal. Wow, I was surprised how well this worked. The extra saliva along with the chewing motion both combine to help alleviate my GERD symptoms. Now, it doesn't make it go away 100%, but it does help.   And anything that lessens my symptoms is a good thing.

I go to my local SPROUTS and buy a gum called SPRY.   But any sugar-free gum should do (stay away from gum that has Aspartame).

* Eating 2-4 peeled slices of an organic red apple. This won't work for everyone, but it works for me. Dr. Koufman's book states to limit yourself to 4 apples per week. But for me, I eat 2-4 slices of a peeled organic red apple a few minutes after each meal, so that comes out to about 2 apples per day, 14 apples per week - it's helped me so much that the limit of 4 does not apply to me (your mileage may vary). The apple, despite it's somewhat acidic content, actually helps alkalize your stomach and the enzymes in it help with digestion.

I keep red organic apples both at home and at work; and my friends are now used to me coming over with an apple and asking them to borrow their peeler.

* Meditation - This is another one of those things that if you had told me a few years ago that I would be meditating 30 to 60 minutes almost everyday I would have told you you were nuts. But pain being the motivator that it was for me, I decided to give it a try as I have read on many blogs that it helped others with their symptoms.

It was a very slow process at first, because I had a lot of anxiety and pain, so it was difficult to concentrate. But meditation is like any other learned skill, the more you do it, the better you get at it. Whereas it used to take me over 30 minutes just to get into a meditative state, I can now do it in under 5 minutes.  I also notice I sleep better at night too.

There have been a lot of studies done recently (the past decade) on the effects of meditation and the benefits are too many to list here. Needless to say, meditation has helped me lower my blood pressure, it's helped me with my esophageal spasms, and most importantly, it's allowed me to focus on the present and not worry so much about the past or the future.  For me that last one was a biggie because it helped me deal with my anxiety. 

* Eating 4-6 small meals during the day - What a huge lifestyle change this was for me. On some days I'll eat 8 really small meals during the day, though most days I'll eat 4 to 6 small meals a day. Eating small meals and chewing my food thoroughly allows my stomach to process the food easier and pass it along to the small intestine more efficiently, which means there's a less chance of getting GERD symptoms or at least not as bad as eating a full meal.

Just as important, eating a low fat diet, also reduces the chance of getting bile reflux, which you might have an issue with or not. My last GI doctor stated that I had issues with bile reflux, and as you probably already known, H2 blockers and PPI medications don't deal with bile reflux. So my eating a low-fat, low-acid diet and eating smaller meals, I'm producing less stomach acid and I'm lowering the chances significantly of having bile reflux.

* Moderate exercise - For weeks I couldn't do any exercise because I was in so much pain. But it's been a month since I've been to the ER and I've stuck with my strict diet, so I've begun going for walks again. I started with a 2 mile walk the other day and I'm confident that in about 3-4 weeks I'll be back to walking 4-5 miles a day, 4 to 5x a week.

The benefits of exercising are too many to list here, but it's essential for 3 reasons:

a. You need roughly 20 minutes a day of sun exposure to get the necessary vitamin D. It's the single best way to get this essential vitamin. It's far superior to supplementation.  But if you don't live in a sunny area, you might need to take Vitamin D supplements.  I bring this up because most people don't get enough sun exposure.

b. The extra oxygen to your cells will help you heal faster.   (Paul's side tip:  try this one for size for a few days - take 6 to 8 very deep breaths 3 to 4x a day if this doesn't bother your esophagus or stomach and see how you feel.  For me it's helped with my energy levels and my ability to stay focused).

c. Moving your body around helps eliminate toxins (the lymph system is 3 times bigger than your circulatory system but it doesn't have a heart to pump it, which is why it's critical to exercise to move around).

* Not eating 4-5 hours before going to bed - After experimenting with this since 2011, I used to eat 3 hours before going to bed, then I switched it up to 4 hours, and finally switched it up to 5 hours. I normally go to bed around 11pm so I make sure that my last meal of the day is at 6pm. I found the 5 hour mark to be optimal for me, though 4 hours seems to work just as well on most nights.

Sometimes I'll get GERD symptoms at night, so about an hour before I go to bed I'll eat 2-3 slices of a peeled organic apple and then chew on two pieces of SPRY gum for about 10-15 minutes. That combination usually does the trick which allows me to sleep at night (and of course I brush my teeth before I go to bed....hahahaha).

I hope you find these tips useful. They have made my life bearable again, though it took about 3-4 weeks before I really noticed it because the esophagus and stomach lining are such a slow healers.   It definitely takes a lot of patience, focus, and wherewithal to do this.

 

Hi Paul,

Thank you so much for your advice and tips - you have certainly given me a lot to consider! It is such a help to hear from someone else who has similar experiences as myself. Most people I meet who have AR seem to take the PPI and they are fine! Or they change their diet and it goes away. So its not really understood much...

It’s been quite a problem for me trying to sort out eating, drinking and sleeping – and I am still not there yet. Am struggling with getting the medication right and its difficult to know what is causing what (medication, what you eat and went you eat, sleeping)... Have had bad reactions to several PPIs and eventually managed to tolerate on - but feel it is not really doing much to improve my symptoms - in fact I feel worse! There is so much around about stopping taking them and controlling the AC naturally through diet... whats your thoughts on that?

It has been hard to get used to a new way of eating - although I have always been careful with food, so am not adverse to not eating fatty foods. However, eating out has been quite a problem. I tend to go to places that offer simple food like fish or chicken with vegetables. Gone are the lovely thai or curries I used to adore :(
My home cooking has completely changed - where I used to cook spicy chili and lots of tomato based food. I had to re-educate myself on the art of cooking bland food! Like you - it is important to eat around 6pm to allow my food to digest (before I was eating very late 9-10). This has been quite a hard thing to change, and makes it very difficult socially, as most people eat around 8-9...

Initially I was reluctant to go away anywhere. Have recently managed a weeks holiday where I took a blow up bed that I put under the mattress which worked fairly well - but was a hassle pumping it up! I will certainly look at getting some adjustable bed risers for the next time I go away.

Its depressing, as this health problem has resulted in so many restrictions. I used to travel a lot in Europe and Far East staying in hotels for a few nights then moving on. Also loved camping – but that’s gone out the window for now!

The foods you list are very similar to my diet. Sushi is a good idea. I was interested to see that you eat organic baby food – hadn’t thought of that before! What do you drink? Yes – it is a real challenge sticking to a simple diet – especially when important social event occur. I really don't like making a fuss and explaining my health issue...

I have always watched my diet and have never been overweight. However, I have also lost quite a lot of weight since having this problem and am worried I am getting too thin. Just wondered how you make sure you get calories?

Eating early has helped me – but I have not got used to eating more frequent smaller meals. However (from my PH test) I suffer from nocturnal reflux mainly, and even when I eat early I still wake up in the early morning from reflux occurring. It seems strange, as I would think there is nothing in my stomach then… Interesting tip about eating apples before going to bed and chewing gum – will try that.

Not sure about bile reflux – how do you know you may have this?

Will check out Dr Twogood online regarding chronic pain - as my back pain has become much more constant and is waking me up during the night and generally making my life miserable (lack of sleep and depression).
Just wondered if your pain was controlled much by any medication then? PPI or Evril?

You seem to have an open-minded consultant. I have been seeing a well renowned GI consultant in Harley Street in London, who seems to think diet has little impact! He told me not to spend too much money on fancy diets or naturapath doctors!

Interesting you say meditation helps. I have been doing Thai Chi, which has helped. Its taken a while to get used to as I have always been the one pounding in the gym – so doing something very slow has been very strange. Like you say moderate exercise is good. Have also looked at Mindfulness – but have not really been practicing it long enough. Like you say – the more you do it the better you get at it.

Thank you so much for the list of tips.
I wish you all the best for a speedy recovery...

Hi Hartshon. That's exactly how I feel. I have gastritis also. it could be nervous gastritis. I'm in a hospital now treating it. Its so weird how your stomach can play with your emotions like that.

Hi Paul,
Apologies for not replying to you sooner.
I really appreciate your response and your comments have given much to think about.

Regarding PPI - I have been taking Nexium 20gm for 3 months (dropped down from 40gm after first month). I have not felt any improvement - and has just given me additional side affects (anxiousness, stomach ache, headache, and now I have noticed hair loss). Have discussed with my GI stopping taking this or dropping down to a H2 Blocker - he seems reluctant, but not totally adverse to doing this. However, I am concerned about rebound and also that I need to protect my self from nocturnal acid reflux (of which I do not experience the typical heartburn symptoms). To do this I really need to take control of my diet - of which I feel fairly overwhelming. I have tried the Korfman low acid diet and also gave up lactose (milk, cheese etc) and gluten. But did not really find any improvements. I am finding it very hard to work out what my trigger foods are - and seem to have a good few days - then some bad ones. I think you need to be very motivated and committed to stick to a diet as its so easy to lapse when you have a good few days. I take your point about pain being your biggest motivator. Just wondered if you took anything for the pain? I have been told I have hypersensitivity and advised to take amitriptyline, which I have avoided so far. Not sure if I have bile reflux - how can they tell this from an endoscope?

I think you are so right in that it takes a long time for your body to heal and you need to make sure you give it the right nutrition and avoid the things that may irritate and cause Gerd. Having a nutritionist to advice me on diet would be a huge benefit - but I am struggling to find a acid reflux nutritionist in London. There is so much advice on the internet - its quite difficult to know where to start. Am interested to know how you found what foods to eat to start with. It seems like you have a clear plan of action, which not only includes diet, but is also a lifestyle commitment.

Thank you for the tips and encouragement - it is much appreciated. Its interesting you say about eating apples before I go to bed - I often have an apple after a meal as it seems to calm my digestion down - so will try eating a few pieces before bed. I do stop eating after about 7pm to allow for my food to digest before I go to bed. However, from the hydrogen test - it appears that I have a slow digestion (as I had a high methane rating), so I am going to start to take some probiotics (as prescribed by my GI consultant). Hopefully that should aid my digestion. Do you take any probiotics or digestive enzymes?

I feel I am at the start of a very long journey with this and have lots of research and experimenting to do. What is quite hard, is that most of my friends and family do not really understand the complexity of this condition. They assume you can take a tablet (PPI) and you will be fine and it will eventually go away (I wish). So this also adds to my frustration.

I have many other questions - but I shall leave it here for now. I would like to hear how you progress over the next few months. You should document your experiences as I am sure other people (like myself) would benefit from your knowledge and experience with dealing with this problem.
Please keep in touch...

Hartshon said...
Hi Paul,
Apologies for not replying to you sooner.
I really appreciate your response and your comments have given much to think about.

Hi Hartshon,

There is no need to apologize, I completely understand.  I'm here as a member because I've beat my condition before and feel that what I post can help others.  I do it solely to help people.  Your questions are accomplishing that.

Hartshon said...
Regarding PPI - I have been taking Nexium 20gm for 3 months (dropped down from 40gm after first month). I have not felt any improvement - and has just given me additional side affects (anxiousness, stomach ache, headache, and now I have noticed hair loss). Have discussed with my GI stopping taking this or dropping down to a H2 Blocker - he seems reluctant, but not totally adverse to doing this. However, I am concerned about rebound and also that I need to protect my self from nocturnal acid reflux (of which I do not experience the typical heartburn symptoms). To do this I really need to take control of my diet - of which I feel fairly overwhelming. I have tried the Korfman low acid diet and also gave up lactose (milk, cheese etc) and gluten. But did not really find any improvements. I am finding it very hard to work out what my trigger foods are - and seem to have a good few days - then some bad ones. I think you need to be very motivated and committed to stick to a diet as its so easy to lapse when you have a good few days. I take your point about pain being your biggest motivator. Just wondered if you took anything for the pain? I have been told I have hypersensitivity and advised to take amitriptyline, which I have avoided so far. Not sure if I have bile reflux - how can they tell this from an endoscope? 

Yes, such a restrictive diet is overwhelming.  Trying to change life long habits overnight is next to impossible.  Like I've mentioned many times in some other threads, it took 3 trips to the ER in the past 6 months to finally get me motivated to do this.  It has been a tough road.  In my view, the pain in my esophagus finally exceeded the pain of not being able to eat the foods I've enjoyed for so long.

Giving up dairy and gluten is a long term thing for some people.  Dr. Daniel Twogood recommends staying away from dairy, gluten, aspartame, chocolate, and MSG for 90 days.  He states that it takes anywhere from 30 to 90 days to reduce the inflammation in your body, so I'm not surprised you haven't seen any improvements yet.  It takes time.

On the flip side of that, it could very well be that gluten and dairy are not your food triggers and it could be something else, but I think eliminating them for 90 days is a good place to start.  You can then reintroduce them into your diet at the rate of one per week.

Man oh man, can I relate to what you are writing.  I remember on my "good days" I would splurge on pizza or In N Out Burger and French Fries and then wham bam!!!  It would hit me like a ton of bricks.  Right now I'm forcing myself to eat only 8 basic foods and it's boring as ****!  

Since I no longer have those good days, it's been easier not to get tempted.  But it is tough in social settings like birthdays, weddings, family get togethers (I come from a big family and we make tons of food when we get together), etc.  

My GI doctor told me they were able to determine I had bile reflux because of the bile they found on the lesions in my stomach lining and apparently they can also tell by the damage and it's location. 

Hartshon said...
I think you are so right in that it takes a long time for your body to heal and you need to make sure you give it the right nutrition and avoid the things that may irritate and cause Gerd. Having a nutritionist to advice me on diet would be a huge benefit - but I am struggling to find a acid reflux nutritionist in London. There is so much advice on the internet - its quite difficult to know where to start. Am interested to know how you found what foods to eat to start with. It seems like you have a clear plan of action, which not only includes diet, but is also a lifestyle commitment. 

For some people, it takes a long time.  In my case, the damage to my esophagus was so bad from years of abuse that it's going to take a long time for it to heal.  I've finally come to grips with that.  I'm on my 7th week of recovery (I use my last trip to the ER as the starting point because that's when I started my restrictive, low-acid diet).

Yes, there's a lot of conflicting advice on the Internet.  What I have found invaluable is keeping a food journal.  I am documenting everything I'm doing so that I can look back and spot trends.  And also hopefully one day I can use this information to help others. 

I've learned that after one week, our brain forgets about 90% of the things that happened to us, that includes what we eat and drink, which is why it's critical to keep a food journal.  This is how I was able to figure out which foods calmed my stomach and which ones were triggers.   I write down what I eat, how much I eat, and what time I eat.  Using a food journal I found out that peeled organic red apples were awesome at alleviating my symptoms, especially 5-10 minutes after eating a meal. 

I have a pretty clear plan of action now, but I have to say, a lot of it was trial and error because some of the advice I read from different sources helped me while others did not.  It took me over 2 years to figure out that the sulfites in certain beers and red wine were causing my esophageal spasms.  It was pure cause and effect; something my own GI doctor was unable to help me with (the medication he gave me not only didn't work, but it had horrible side effects).

Dr. Jamie Koufman's book, DROPPING ACID, was a good addition to all the books I have at home about what to eat and how long.  Though with anything, you may find that some foods work better for you than others.  Personally, I'm a big advocate for keeping things basic, simple, and going through a 90 day elimination cycle (whereby you stay away from gluten, dairy, all known trigger foods, foods with MSG, all processed food, etc. and then slowly introduce one per week).

What makes this so challenging is that you may not see relief for 1, 2, or even 3 months because it all depends on the degree of damage that you have, and a whole host of other variables.  Something as simple as how you sleep at night can have a major impact on your GERD symptoms.  Recently, someone lowered my bed with my remote while I was asleep and I woke up around 3:30 am with a horrible pain in my chest.   In my current condition, I have to sleep at an elevated angle because for some reason my stomach churns out a lot of stomach acid at night (this is why I'll eat a couple of slices of peeled red apples about an hour before I go to bed).

Hartshon said...

Thank you for the tips and encouragement - it is much appreciated. Its interesting you say about eating apples before I go to bed - I often have an apple after a meal as it seems to calm my digestion down - so will try eating a few pieces before bed. I do stop eating after about 7pm to allow for my food to digest before I go to bed. However, from the hydrogen test - it appears that I have a slow digestion (as I had a high methane rating), so I am going to start to take some probiotics (as prescribed by my GI consultant). Hopefully that should aid my digestion. Do you take any probiotics or digestive enzymes? 

My pleasure.  If I can help one other human being to get better, than it would have been worth it.  Please let me know if the apple thing works for you. 

I used to take Papaya enzyme supplements and they were very helpful.  However, once I switched over to a daily RAW probiotic and organic sauerkraut juice, I have since stopped taking them.  My daily probiotic regimen has helped me with digestion. 

It's important to introduce probiotics slowly.  Most supplements will have instructions to start off with one or two pills a day (depending on their formula) and then over time work your way up to several pills per day.  Don't waste your money on dry probiotics, they are almost worthless.  You need live strains so get the ones that have to be refrigerated.  I'm at the point now where I take 2-3 tablespoons of sauerkraut juice after each meal, but I started off with 1 teaspoon after each meal and worked my way up.

Hartshon said...

I feel I am at the start of a very long journey with this and have lots of research and experimenting to do. What is quite hard, is that most of my friends and family do not really understand the complexity of this condition. They assume you can take a tablet (PPI) and you will be fine and it will eventually go away (I wish). So this also adds to my frustration.

I have many other questions - but I shall leave it here for now. I would like to hear how you progress over the next few months. You should document your experiences as I am sure other people (like myself) would benefit from your knowledge and experience with dealing with this problem.
Please keep in touch...

Boy, can I relate.  Because I look healthy and can still stand up and move around (most days), most of my friends and relatives think it's not that big of a deal.  Only the ones that have given me a ride to the ER can somewhat understand, but even they will ask me a week or two later, "so hey, are you all better now?"

For some people, taking a PPI for a few weeks helps them and they're all better.  But for many people with GERD, it's not that simple.  And for those with severe problems such as chronic gastritis, erosive esophagitis, barrett's, chronic cough, breathing problems, SVT (rapid heartbeat), other types of arrhythmias, etc. it's not that simple.

It's definitely been a journey, one which has involved a lot of soul-searching and taking a closer look at my life decisions.  I look back at 2008 when I had my first sign that I was having digestive issues, but I took some tums and thought nothing of it.  I kept on popping tums and rolaids for a long time because they helped with my symptoms.  I would have never thought that I had GERD that it would have eventually led to the problems and the impact to the quality of life that I have now.