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Old 02-07-2013, 10:44 PM   #1
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Severe GERD/Nothing Working

First time on this board, so would appreciate any input I can get!! I have severe GERD, IBS, asthma and allergies. I recently have been having a lot of GI issues and went on a gluten free diet which seems to have completely eliminated the IBS portion of my symptoms. However, my already severe reflux has become almost intolerable. I am already on 40mg Nexium twice a day and have been on at least 1 40mg Nexium per day for years, also Zantac at least once a day and recently for the last week or two, Carafate twice a day. I can only get the Carafate in twice a day due to the timing with all the other meds I take throughout the day. The acid reflux is made worse by the fact that I must take high doses of potassium chloride due to chronic low potassium due from the Advair I take for my asthma. I know potassium is very hard on the stomach and I do always take with lots of water and food but it's not something I can get off of. In the past week or two, the reflux has gotten so bad that I cant sleep at night even though my bed is raised at least 6+ inches at the head and plus I have an adjustable bed, so I often have been going to bed and raising the head more. I start dozing and then acid just seems to be flooding up my esophagus and into my throat and I start choking and coughing. Finally about 5-6am, for whatever reason, I can finally lay down and get a little sleep. It's not any better during the day - the only time it feels half way decent is while I am eating but shortly after, it returns with a vengeance. My throat is sore and actually feels like it's been washed with acid and I have a little cough due to the acid getting into my lungs. I try to drink a lot of water, follow a GERD diet, chew non-mint gum often for the extra saliva but nothing seems to be helping to get it calmed down. Anyone have any ideas, suggestions, tips or tricks to try or has anyone experienced this as well where the meds just dont seem to help?

 
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Old 02-08-2013, 09:24 PM   #2
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Re: Severe GERD/Nothing Working

Hi fyreangel, sorry to hear you are feeling so bad. You may already be doing these but just in case I ll list few things which have helped me : eat small meals only, do not eat anything for up to 3 hrs before bedtime, take slippery elm (from healthfood shop) before each meal, try and figure out any food which seems to disagree with you for me this has been all carbohydrate rich foods (breads, biscuits, cakes and cereals) and sugary foods as well as coffee. Try taking glutamine an amino acid ( healthfood shop again) which works by helping digestion and soothing/healing the eosaphagus and stomach lining.
I also was a regular leisure runner prior to this and have managed to continue running through it all despite the extreme tiredness, pain, coughing throwing up and fatigue ....with lots coaxing from my partner! But this seems like the best help I can give myself. Without fail, a run even a short one seems to help the food move down quicker and eases a lot of the symptoms. But a warning, it is very hard to get the motivation to go for one when you are feeling sick and tired or the weather is bad, but definitely best thing you can do. If you dont run try going for a walk and speed up your pace to something slightly challenging. Hope these help. Also have you asked about getting tested for H pyroli bacteria? Many seem to believe there s a link between this and GERD. I am sending off stool sample on monday myself (do not do breath test if you are on nexium or similar med for last month) and dying to see what results are.

 
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Old 02-08-2013, 11:07 PM   #3
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Re: Severe GERD/Nothing Working

Thanks for the tips, ariangirl!! I am already gluten free so the only breads, pasta, cakes, cookies, etc that I have are usually made with rice flour or tapioca, etc. No wheat, barley, rye or anything with gluten. I have been wondering about sugary foods bothering me as well, but I really have a sweet tooth and have given up so much already that I honestly dont know if I could completely stay away from everything sweet!! I try to not eat chocolate though. I do try to eat small meals and not before bedtime and have already been tested for H pylori which came back negative. I will definitely try the slippery elm, as a matter of fact I have some Thayers slippery elm lozenges but have only taken 1 so far - they taste awful and maybe I expected it to work right away, which it didnt, but I will try taking them before meals. I had not heard of the glutamine and will try to find it or order online and give that a shot as well!! I saw a doctor again today who told me to go dairy free for a week and see if that made any difference and if not, then to try liquid prednisone ( steroid ) and possibly a muscle relaxant as he said that the main reason for discomfort with the acid backwash is esophageal spasms. I would rather not have all these drugs if I can find a way to get some relief without them or try something natural or a supplement first. He also said there were many favorable reports of acupuncture helping with GERD and acid reflux. Might have to give that a try as well. As for the exercise, I am pretty terrible about getting any lately due to the fact, just like you mentioned, I dont feel good and therefore am too tired and not motivated to do much of anything. How long have you had your reflux - your symptoms sound similar to mine only I get a lot of upper back pain with mine as well and I dont actually vomit. Do you go in and out of flair ups or is it with you all the time??

 
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Old 02-09-2013, 02:37 AM   #4
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Re: Severe GERD/Nothing Working

My symptoms came suddendly at the end of august and then built up wuickly. I have no heartburn at all but very bad bloating and constipation. As well as cough and throwing up, pains in stomach and gas and extreme tiredness. No back pain. They are pretty much always there except for cough which flares up after certain meals along with feeling very cold and exhausted. Stomach pains are up and down all day. I don't want to stay on med as I have heard too much negative things about it and I do beleive I may have either candida and /or H pyroli but doc won't test for it. So I am getting it done privately myself on monday.
Re: sweet tooth, I know I am the same but it definitly does NOT help. As sugar cause fermentation in stomach ehich cause more gas and reflux but glutamine is meant to help with cravings I am starting new gluten, dairy and sugar free diet after test on monday and intend to try it. Dairy also contain a lot of sugars thats an other reason to give it up. I no its terrible having to restrict your diet like this! By the way chocolate is a big no no for GERD it contains something which relax the valve between stomach and esophagus. Hope this helps, you sound likr uou have an understanding doctor? I have just inherited mine after my own immigrated to canada and I don't find him the least bit understanding. Does not seem to listen, makes me so mad! Let me no how you get on with slippery elm, you need take it regular and maybe capsule would be better?

 
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Old 02-10-2013, 01:10 PM   #5
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Re: Severe GERD/Nothing Working

You are brave going on a gluten free, dairy free AND sugar free diet all at the same time and I commend you!!! I couldnt do that, I know - bad enough that I try to stay away from chocolate as much as possible, I would have a very hard time giving up all sugar and even on being dairy free for right now, I am having cheese withdrawal!!! LOL!! I see you are from Ireland, hopefully they have a good variety of gluten free products in your local stores. I live in a very rural area and sometimes it's hard to find things such as breads, cereal, crackers, chips, etc that are all gluten free along with the alternate flours such as rice, millet, potato, tapioca. I have always been a good chef and baker but it's like starting over as a newbie trying to make things gluten free becuz the flours without gluten react differently than do the regular ones such as wheat and you have to add other things like xanthan gum. There is so much hidden gluten that you have to beware of in things when at the grocery store too - watch out for things with modified food starch or food starch, malt, powdered cellulose, and even some seasonings, salad dressings and I was not aware that even things like vanilla extract normally has gluten in it becuz of it having alcohol and most alcohol has gluten!! My biggest problem is going out to eat. Being gluten free means no breaded items, no fried chicken or fish and chips, no gravy on anything or sauce, most salad dressings have it so unless you are having salad with oil and vinegar, you have to watch that as well and I am always asking the waiter or waitress if they can check ingredients on certain things if I am not sure!! I usually end up having meat and potatoes or baked fish such as salmon. Do you like to cook or bake?? If so and you ever come across any good recipes that are gluten free that you've tried, let me know!!
As for my understanding doctor - thats a funny one becuz when I went to make an apt, everyone at my usual clinic was booked so I ended up taking an apt at another clinic with a doctor I had never seen before. My regular primary doctor is NOT understanding and doesnt want to deal with any GI issues at all, just keeps shoving me off to a GI specialist. This doctor I had never seen before was quite willing to give me ideas and possible modes of treatment without sending me off again!!
You said that you have a cough that comes and goes - me too, which I was told was from the acid going into the lungs. Does it ever ache or hurt for you to take a deep breathe?? I get that all the time although I move air well and so there is no actual problem breathing, it just hurts and feels tight to take a deep breath and I cough sporadically. I have decided to order some slippery elm tea - I want to get the benefit of swallowing it so that it can help protect the esophagus and at least with tea, I can swallow and be done with rather than these lozenges taking forever to melt down your throat with their horrible taste!! LOL!!

 
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Old 02-11-2013, 08:08 AM   #6
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Re: Severe GERD/Nothing Working

I know...maybe i am doing too much too soon. But I already eat little dairy, only cheese and yogurt. I have stocked up with lactose free chees and am allowing live yogourts until results come back, as I do think I have candida still and they are supposed to be great for that. I also have not eaten much bread over the last few years as I always felt sick afterwards, so that will be easy to cut out and I wont miss it too much. have rice cakes instead of crackers...cutting out chocolate and biscuits altogether will be hard as I find the more i am told i cant have it, the more i want it. And the wine!!!!!or any sort of alcohol. I'll have quinoa and brown rice and I eat lots of raw and cooked veg especially greens so am happy with that. fruits I ll miss too. Or maybe I am being very innoncent?????? I seldom go out for dinner so really my main concern is going out for a drink at the moment.
I also live in a small rural town but I travel to the nearest city once every few weeks (150kms return trip) and stock up and thank god for internet shopping!! But my sister inlaw is a celiac and I 'll ask her if she has any good recipes. i think someone mentioned elana's pantry (google it) it has recipes, but I didnt check it out yet.
An understanding doctor who is willing to listen to your concerns I think is so important. I know I'll have to make a decision but my next neartest doctor is so far away I cant just switch. I am thinking i'll have to be more "forceful" , if this is the right word, with my doctor if I want him to treat me properly. I really do not beleive that treating the symptoms is good enough he needs to treat the cause of it too. but we'll see...I am dying to see what results will show.
The cough is from acid reflux sometimes but other times I am not sure. Re: slippery elm get it in powder form, you put it in water and leave it sit for a few mins. it thickens and only has an after taste like walnuts. Hope it helps.

 
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Old 02-11-2013, 12:30 PM   #7
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Re: Severe GERD/Nothing Working

Hi Fyreangel sorry you are suffering so much.

The thing that helped me the most was DGL licorice root extract.

Be aware that drugs cause side effects, and in the end one drug leads to needing another, and needing another and so on. I know you have lots going on and asthma is serious and obviously not something you can overlook, but I took anti-inflammatories for something and ended with such bad oesophagitis (heartburn) that it was worse than what I was taking the meds for in the end. Muscle relaxants/ steroids etc, will all make your heartburn worse. And likewise drugs for heartburn can make asthma worse, hence you take more asthma meds and the cycle goes on.

Also try NOT chewing gum and see if that helps. People say the extra saliva can help, but also when you chew the lower oesophageal sphincter muscle relaxes as the stomach thinks it is going to receive food, which it doesn't as you are just chewing. The effect of this can be worse than any help that the extra saliva may do.

 
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Old 02-12-2013, 02:13 PM   #8
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Re: Severe GERD/Nothing Working

Hi kacyc,
can you buy that dgl licorice root in healthfood shops ?
I agree with regards to chewing gum, one of my symptoms which flares up when things are bad is over salivating, which means i am constantly swallowing or scratching my troat just like a viscious circle. I think chewing gum also makes this worse.

And I also agree re meds . Problem is some doctors rather take the easier route and treat symptoms, rather than what is at the root of the problem. My cough and vomiting got so bad at the beggining, that doctors told me I may have whooping cough...and gave me antibiotics and cough syrup with codeine and told me take max dose sudafed....this was after having to take a month of ibuprofen for arthritis...my cough got worse and more symptoms started.Only when I stopped taking all meds did cough ease off a bit and the extreme throwing up.I guess no wonder my stomach is so unhappy!

 
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Old 02-12-2013, 02:22 PM   #9
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Re: Severe GERD/Nothing Working

I buy Solgar deglycerised Licorice (DGL) root capsules, available from most health shops, or online. I open 2 capsules and pour the powder into boiled (cooled down a bit) water and make a drink. That way it is most easily assimilated and I find works very well. Personally I have it between meals, so that it isn't washed away by drink or food straight away. It is supposed to help the stomach produce mucous which coats and protects the lining of the stomach. It is also alkalising and can provide instant relief. As with all remedies, different things work for different people. Try it and see. But take it for a while before you decide if it is helping or not.
Hope you find some relief soon.

 
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Old 02-14-2013, 12:50 PM   #10
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Re: Severe GERD/Nothing Working

Ok, I have now cut out all dairy except for live yogourt and cottage cheese, all sugars tottally, all starchy veg, all fruits, all biscuits, cakes, breads and crackers. I eat live yogourt with hemp powder, flaxseed and sesame and sunflower seeds for bfast, raw salad made of spinach, rocket alphapha, celery, broccolli, onion and fish or chicken and for dinner fish , chicken or eggs with steamed veg and coconut oil and garlic. I am drinking green tea, herbal teas, warm water with lemon and homemade tea of fresh ginger, cloves and stevia. Am taking a colon cleanser at night and warm water with tablespoon flaxseed and lemon at noon, to make sure my bowels move as am prone to constipation. Lots vitamin b complex and c also zinc and magnesium. Snacks are raw veg with humous or cottage cheese. I started this tuesday morn and by evening I started getting aches and pains, next day the aches were all over my body, sneezing, coughing very bad, wheezing headache ear ache. Bloating is something unbelievable...a glass water fills me up for an hr. So far bowels are moving once day.
What I am wondering is could these be die off symptoms already? Is it not too early ? I now have low grade temperature, am exhausted and weakness in my legs and all over...or is it just a flue?
Went out and got more slippery elm as well as dgl licorice root as kacyc recomended and bloating has eased somewhat. So thanks for that

 
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Old 02-14-2013, 12:57 PM   #11
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Re: Severe GERD/Nothing Working

Fryeangel:I was researching best diet for GERD and many think that a low carbohydrate diet has helped....as in very low. So no breads cakes cereals even glutenfree ones, just green non starchy veg and only apple or pear once in a while. Also some found that an apple going to bed has really helped. May be worth a try as you seem to be really suffering.

 
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Old 02-15-2013, 10:42 PM   #12
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Re: Severe GERD/Nothing Working

Thanks Ariangirl and Kacyc for giving me some tips and things to try. I got my slippery elm tea the other day but also read that you should let it cool until it sort of gels and drink it that way??? All I can think of is Ewwwww!!! Have you heard that?? The licorice I am not sure I can have although I have heard it very good for GI and digestion but I am also on other meds that it supposedly is contraindicated with. Will have to check in to it more. The gum chewing actually seems to help me but I have to be careful not to chew mint flavored gum. When I had the daily nausea so bad, I chewed a lot of Wrigley's Doublemint gum and it helped the nausea but I think made the gerd worse. Luckily, when I went on the gluten free diet, the nausea went away completely!! Now I just chew juicy fruit!! LOL!! A little update - I have passed my week trial of no dairy that the doctor wanted me to try and there is some improvement. Not a huge amount but my throat isnt raw from the acid all the time and I feel a bit better, so I am going to keep on for another week. I did cheat a little today for the first time and had some cheese when we went out to eat but other than that, I havent had anything dairy at all.
As for your feeling worse, I think it might be one of two things - either it's candida die off like you suspect, which I understand can cause a multitude of symptoms and last for several weeks and make you pretty miserable, or you are allergic to something you are eating now. The only thing I would wonder about is the fever - I have not heard of that for either allergy or candida die off. Keep flushing with lots of fluids - water is still the best to stay hydrated with and flush through your system. I hope you start feeling better soon!! Keep me posted on how your diet is going and if you are getting relief and if you try anything else. I am going to check in to seeing about getting a few acupuncture sessions going soon since the doctor really recommended that. I have never dealt with Chinese medicine but the doc said to make sure that if I tried that option, to get someone board certified and not just a chiropractor as they dont always have much training. Unfortunately I have been slowed down a little in getting things done this last week becuz I tore my rotator cuff in my arm and am waiting to see the ortho surgeon to determine what treatment to be done for that. Maybe the acupuncture could help that too!! LOL!!!

 
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Old 02-17-2013, 08:48 AM   #13
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Re: Severe GERD/Nothing Working

Hi fyreangel! You are right about slippery elm, when it turns into a gel it coats the oesphagus and stomach on its way down. It actually is not too bad, try and think of it in terms of a tasteless jelly and just drink it in one go. I often find if you dont think about it and just gulp it its not as bad. You do need to use it a few days to find any help from it. So far, I have to say the licorice root seems to be great especialy for the heavy feeling and bloating in stomach. Glad to hear nausea is gone, will help you to stick with gluten free diet.
I have read that acupuncture is supposed to be great for GERD, I used it for different issue few yrs back and would really recomend it. So if you can afford it go for it.
Re : my symptoms, they had become so bad by saturday that I did think this was not die off but an infection. So went to my out of hrs doc who found that I actually had a bad chest and throat infection. So am on antibiotics, and I am afraid this may bring me straight back to square one! But feeling so sick with high temperature and coarse chesty cough bringing up green phlem. So must treat this 1st I think. hope you are still getting some relief.

 
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Old 05-13-2013, 05:46 PM   #14
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Re: Severe GERD/Nothing Working

This is going to sound totally ridiculous, but believe me I have had plenty of expereince with GERD. I have been fighting this for about 12 - 13 years. I take Nexium daily and most fo the time all is good. Now and then I will do something stupid and eat stuff that I should not touch for a few days and even the Nexium dosn't help.
Now the ridiculous part:
If you have actually been diagnosed with GERD, this may help you. For me it is a miracle and I have used it many times. When I get to feeling really bad, I will take several good swigs of Aloe Vera GEL (not the juice). This stuff tastes the way I always imagined moss off the side of an old tree stump would taste, but believe me, when I use it, after a couple of days (sometimes not even that long), I cannot believe even today how much better I feel. Like I said,,,sounds ridiculous, but think about the miracles of the Aloe plant (if you haven't, read up on it a bit). There is even some talk that Aloe may even cure some types of cancer? I truly hope this helps, as everyone I know (including myself) with the first few attacks of GERD was off to the ER sure they were having a heart attack. Not to talk down to you or anyone, but of course be double sure that it is NOT a heart related problem. Good luck!!!

 
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Old 05-15-2013, 02:40 PM   #15
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Talking Re: Severe GERD/Nothing Working

Okay, I just wanted to come back and report on how my new diet has or not helped, maybe it may help someone out there. As mentioned earlier in thread I decided to go on a gluten, sugar, dairy and yeast free diet. Within 3 weeks I started to feel some improvements and within 6 weeks all my symptoms had lifted AND I was off the nexium! It was tough to stick to it at the start but once I got into it was okay. I have now slowly re-introduced a tiny bit of dairy and gluten and am fine and my doctor has now admitted that I probably have a yeast alergy, I am curently on waiting list for tests. Iam now feeling better than I have felt in years, I have so much energy have taken up running again and run faster, further and easier than ever and even sleep great, and everyone has commented on how well I look. It is not an easy diet and found it easier to not use any of the gluten replacements, just worked better for me, but maybe because it was a low carb diet this helped too? So for anyone out there it might be worth your while checking this out...just wanted to report back on the positive for once and I hope this helps someone. Also I have supplemented with many vitamins and minerals to give me a helping hand but for me it has been the best thing I could have done.

 
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