Please help my husband! PPIs making things worse!

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jrb2003
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Date Joined Feb 2013
Total Posts : 4
   Posted 2/12/2013 1:40 PM (GMT -6)   
My Husband is suffering so badly from GERD and I’m hoping that someone will have some direction for him. He's at the end of his rope and the PPIs are making him worse. (He's been on Nexium, AcipHex and Prevacid). This has been going on for almost 3 years now and hasn't let up except for a few days here and there. He has recently been diagnosed with Reflux Esophogitis and is now very worried about Barrett’s/cancer. His throat and mouth are always burning from acid. He feels badly all day and can feel the acid "churning" during the day - but at night things go from bad to worse... Acid is constantly and forcefully coming up into his throat and mouth. Some nights he's drowning in it and had to hit me to wake me because he's suffocating. Raising the bed has not helped at all. Eating doesn’t seem to make a difference either. He eats clean and still suffers so much!

He's 41 years old and in otherwise great shape. He always ate 'clean' and worked out in the gym 5 days a week. Never overweight.

Here’s some background: This whole thing happened very suddenly 3 years ago. He never went to the Dr. – was a body builder – and always ate healthy. On Labor Day 2010 we were out with the kids when his right eye went blind for a few minutes. His sight came right back after about 3-5 min. We had him at the Dr. the next day. We found out his red blood cells were elevated, his heart was enlarged, his cortisol was through the roof and his hormones were all messed up. Testing began and nothing could account for the red blood cells… After months and months of testing with several top specialists, most of his numbers and his heart began to return to normal. The Drs concluded that he had a cardiac infection that was now over. The stress and anxiety that surrounded this whole situation was enormous. He suffers from Reflux, muscle pain, limb tingling/numbness, difficulty breathing, sleep apnea, shocks in his sleep, shaking chest/stomach, etc.

We believe most of these symptoms are reflux related and I have read on this forum that this kind of horrible reflux can be sparked by a stressful event. What happens when PPIs don’t work? The Drs have discussed Nissan with him – but how can he go from perfectly fine to needing stomach surgery? He’s had PH testing (it was positive), Upper GI and several endoscopies. One Dr. found a sliding hiatal hernia as well. Are we missing something? Is there anything that can help him? Does constant acid exposure in the esophagus always lead to cancer?

Any help would we tremendous! My husband feels like his life has been robbed from him. Like a switch was flipped 3 years ago… and his healthy life ended :(

sunbeam48
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Date Joined Jun 2011
Total Posts : 795
   Posted 2/12/2013 3:04 PM (GMT -6)   
I too was quite healthy until my GERD began following some stressful times at work. There is a fairly new diet out that has helped me called Fast Tract for Heartburn. There is a thread here which contains more details. The PPI'S don't address the underlying digestive issue. They reduce the acid from your stomach so it doesn't burn your esophagus, often maming

bcfromfl
Regular Member


Date Joined Nov 2011
Total Posts : 417
   Posted 2/12/2013 3:07 PM (GMT -6)   
I'm sorry to hear about the struggles your husband is going through.  I strongly empathize, as I have GERD, have had surgery, and still, until recently, had serious, non-specific symptoms that were getting progressively worse.  This past summer, my wife thought I was going to die.  I was also into bodybuilding since the age of 17 (now 51), and had always eaten well.  I don't eat junk food, soda, coffee, or drink alcohol, and am also vegetarian.
 
You mention PPIs making things worse, which, coupled with the other symptoms you describe, is significant.  Both of you may be resistant to what I am going to say.  But I would strongly encourage you to explore food intolerance...specifically gluten and casein.
 
Food intolerance is a separate condition from food allergy.  Food allergy usually produces severe symptoms within 30 minutes, while food intolerance is more subtle, and symptoms appear from 12 to 72 hours later.  Food intolerance causes an autoimmune reaction, and, depending upon the individual, can manifest in a host of different ways.
 
Your husband's first reaction will undoubtedly be, "I don't have food intolerance.  I've eaten the same things my entire life and never experienced indigestion."  I never experienced indigestion, either.  When we are young, and our immune systems are more robust, food intolerance stays in check.  When it appears later in life, it's called an "adult onset" condition, but all that says is that your body is finally weakened to the point that the symptoms become obvious.
 
Two symptom categories of gluten intolerance that are considered more serious, are gluten-induced neuropathy and gluten ataxia.  At the worst of my symptoms before I discovered my intolerance, I had crushing migraines 3-4 times per week, cognition/memory issues, "brain-fog," etc.  Also depression, apathy, and chronic fatigue, in addition to joint pain/arthritis, asthma, and muscle weakness.  I also had blurry vision in my left eye especially, and watering, stinging eyes.  This symptom actually got worse on the diet.  I discovered that this is not an uncommon symptom, and is caused by B2 deficiency as a result of damage to the small intestine.  The reason the symptom gets worse on the diet is because grains and cereals are eliminated, which are among the main contributors of B-vitamins (but only because they are artificially fortified!)  I supplemented B2, and the symptom reversed in 24-48 hours.  There are other deficiencies associated with intolerance, which include all the B vitamins and D as well.  I recommend seeing your doctor and getting blood tests, as well as a celiac panel.  It's quite possible that your husband's B12 and folate will come back in the normal range, but this is because these are imperfect serum-level tests.  You should also do methylmalonic acid (MMA), because this evaluates B12 metabolism on a cellular level, and also gives a window into homocysteine levels -- another important consideration.
 
Other intolerance patients note the neural symptoms you described.  I should add that, now eight weeks into the elimination diet, my lung capacity is nearly restored.  I did not realize how impaired my lungs were until they came back!
 
Getting back to the PPIs, I found something else interesting as I tried to educate myself about this condition.  I never had a headache in my life until doctors tried prescribing PPIs back in 2009 and 2010.  They gave me crippling headaches, which is a possible side-effect.  But even after stopping the PPIs, the headaches continued and got worse.  In those individuals who are predisposed to food intolerance, acid-suppression therapy can cause full-blown symptoms, because the lack of stomach acid allows undigested protein molecules to pass into the small intestine where the damage begins.  These molecules are sometimes called, "proteins with teeth."
 
There's much more I could write here, but I don't want to get on my soapbox!  In four years I saw ten doctors, in private practice, a large university hospital, and even at the Mayo clinic -- and none of them mentioned diet, let alone food intolerance!  When the autoimmune symptoms began snowballing, diagnoses ranged from andropause to hypothyroidism to brain tumor, and I endured many uncomfortable and expensive tests while continuing to suffer.  Keep an open mind, and consider what I've shared.
 
Best wishes.
 
-Bruce

jrb2003
New Member


Date Joined Feb 2013
Total Posts : 4
   Posted 2/12/2013 3:27 PM (GMT -6)   
Bruce,
Thank you so much for this post! At this point, we are not resistant to ANY help! We will try the elimination of gluten and casein! He has been tested for celiac and doesn't have it. He's also been to an allergist and has no obvious food allergies, but that doesn't mean he doesn't have sensitivity issues. He once came up Vitamin C deficient. I wonder if that could be from this.

He's had several 'neuro' issues since that moment 3 years ago and we have also been all over NY and tri-state area to get help. We also just went to Mayo who acknowledged the Reflux but didn't give any real direction except for adjusting medications (which didn't work). We've looked for brain tumors, MS, autoimmune issues... I can't even name all the things we've ruled out. Sounds like there's a parallel to your story. There's so much good info here in your post – which I will pour over now, but feel free to get back on any soapbox you may have and keep talking!

Thank you!!!!!

jrb2003
New Member


Date Joined Feb 2013
Total Posts : 4
   Posted 2/12/2013 3:29 PM (GMT -6)   
Sunbeam,
Thank you for your post! I will look up the Fast Track Diet too! Is it a gluten/dairy free diet?

bcfromfl
Regular Member


Date Joined Nov 2011
Total Posts : 417
   Posted 2/12/2013 3:42 PM (GMT -6)   
I hope something I wrote may help you and your husband.
 
Keep in mind that the celiac test is notoriously unreliable.  It's also quite possible to have what's called, "non-celiac gluten sensitivity" (NCGS), which is just as serious.  All "celiac positive" means is that you have a genetic predisposition to gluten intolerance.
 
I discovered I was also casein intolerant almost by accident.  I had just started the gluten-free diet a week earliler, and had picked up some pre-mixed Myoplex and Muscle Milk meal replacement drinks...just to try to make up for all the lost calories as a result of eliminating grains/cereals.  The onset of my migraines always seemed to happen mysteriously at about 8 or 9pm each evening.  Well, 12 hours after drinking the first Muscle Milk, I had a migraine.  It was then that I figured out that the milk on my breakfast cereal was behind the nightly migraines.  I mention this because the Myoplex and Muscle Milk, as well as many other bodybuiding supplements that your husband may consume, contain whey.  Beta casein has a similar molecular structure to gluten, and both intolerances sometimes appear together.
 
-Bruce

TheSiXness
Veteran Member


Date Joined May 2012
Total Posts : 541
   Posted 2/12/2013 4:06 PM (GMT -6)   
I'm kinda in the same boat here as well. Antacids make my symptoms worse and I feel worse the healthier I eat. Typically, when I eat healthy, I eat a lot of grains and carbohydrates.

Along with some deficiencies, I was wondering, is darken circles around one eyes an indication of some kind of intolerance/allergy? If so does taking claritin D help with food allergies?

bcfromfl
Regular Member


Date Joined Nov 2011
Total Posts : 417
   Posted 2/12/2013 4:31 PM (GMT -6)   
Claritin D is an antihistamine, which works to suppress allergic reactions.  This, along with something like Benadryl, may be helpful for food ALLERGIES...i.e., peanuts, kiwis, etc.  An antihistamine would be completely ineffective against food intolerance.  Food intolerance causes antibodies to be released, and when these antibodies fail to find an obvious pathogen, attack healthy tissue...which is quite different from a histamine response.
 
While going through this process, my wife and I began taking a look at a particularly tenacious skin condition she has been struggling with for two years.  Red, stinging, itching red patches on both wrists, elbow area, front of the neck, chin...and eyes.  The patches flake skin, and also have tiny pus-filled blisters.  At the peak of her symptoms, her eyes were very puffy and dark.
 
She started a gluten-free diet, and the condition is clearing up.  When this condition appears in a food intolerance, it's called dermatitis herpetiformis.  Unlike some other gluten-induced symptoms, in many cases this one can take quite a bit of time to clear up completely.  In severe cases, there is a prescription drug available that will speed things along.
 
-Bruce

Post Edited (bcfromfl) : 2/12/2013 2:34:44 PM (GMT-7)


mudmagnetmum
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Date Joined Apr 2011
Total Posts : 1604
   Posted 2/12/2013 5:31 PM (GMT -6)   
Hi JRB,

GERD does seem to land out of the blue sometimes - I've never worked out what triggered mine which came on quite quick one week nearly 3 years ago now. However, perhaps it is just that we reach a tipping point and then there's no easy way back? Whether it starts quickly or gradually the solutions are probably the same and it could be that surgery may be a possible way forward for your husband?

Has he been tested for Helicobacter?

I wouldn't be unduly alarmed about Barretts unless it is progressing. Lots of us have Barretts and the risk of transformation is now put very low indeed. I would focus more on quality of life and discuss what feels right to him. Some people try everything before they try surgery, some head straight for surgery as soon as they can. Some, like me, aren't bad enough to be offered surgery and just plod on with medication/diet/natural remedies. Some never need surgery, and I hope I'm one of those, but I think if I were choking on reflux I would want to discuss with a surgeon what the chances of a successful surgical solution would be. But that's just my opinion - we all have a different threshold for these things!

MMM
GERD (over 2 years)
Lifelong stuff: Food allergies/intolerance, eczema, asthma

sunbeam48
Veteran Member


Date Joined Jun 2011
Total Posts : 795
   Posted 2/12/2013 6:05 PM (GMT -6)   
Hi jrb, you can follow Fast Tract with dairy and gluten eliminations, but it is not mandatory. The author, with whom I consulted via the Digestive Health Institute, did suggest two week minimum eliminations of these foods after I didn't see improvements in a week on the basic diet. He could be an excellent resource for you. He is a microbiologist who understands digestion, GERD and other digestive disorders, and the meds. You could contact him directly through the Digestive Health Institute. Bruce may well be correct, but I think Norm Robillard could lead you down the path in a step by step manner.

vinylmasters
Regular Member


Date Joined Feb 2013
Total Posts : 34
   Posted 2/18/2013 9:34 PM (GMT -6)   
To jrb2003 and others who, when taking PPI's and such the reflux only seems to get worse:

Get your gall bladder checked out! Chances are it's BILE reflux, and NOT acid reflux! NONE of the reflux drugs OR the Nissan will stop bile reflux!! It's VERY important to make sure a PH study is done to determine what KIND(S) of reflux you have, as well as the % of them to determine the proper course of action. I had the same issue and went through the Nissan when I probably shouldn't have. They KNEW I had bile reflux, but other than a simple ultrasound never checked my gall bladder, which, after a gall stone attack it was found that it was very badly diseased and had to be removed. A LOT of my reflux issues disappeared after it came out - so be VERY sure you know the type of reflux first!

opnwhl4
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Date Joined Dec 2008
Total Posts : 4961
   Posted 2/19/2013 6:09 AM (GMT -6)   
jrb2003

Welcome to Healing Well. I see you have already met some of our great members here. I really don't have much else to add that hasn't been discussed. I do want to let you know I have had barretts about 8 or 9 years and it hasn't advanced any.
I have had the nissen surgery and have a functioning wrap to help keep the acid and such down where it belongs though. I sill have an EGD every 3 years, up from yearly, to keep an eye on my barretts.

Take care,
Bill devil
opnwhl4
Moderator: GERD/Heartburn
Nissen 6/06 and 5/09
#3 on 8/24/11

Johnah
Regular Member


Date Joined Nov 2012
Total Posts : 34
   Posted 2/19/2013 9:52 PM (GMT -6)   
I have been having the issue regarding food intolerance and PPI's. My issue seems to be with sugar primarily. That can be sugar in candy, sweets, sugar in apples, oranges, bananas etc, etc. When I eliminate these items I feel fine. If I have a weak moment or two I am itchy and get small sores showing up on my skin. I have always had some sensitivity to sugar but since being on the PPI's it has been magnified. I have tried numerous PPI's , same results. I expect many of us have some foods that create problems for us but once you start on a acid suppression regime as strong as PPI's produce then it can get out of hand.

I tried going Gluten free, it actually made things worse. That diet removes a great deal of fiber from your food and I got constipated. Was tested for Celiac , nothing found. Don't find an issue with gluten but sugar in almost any form drives me crazy.

This issue for me is almost worst than the reflux I suffer when not taking PPI's. about a year ago I had a terrible problem with reflux, slowly have gotten under control but had to really understand my triggers. Coffee with caffeine had to go, sugar and I quit drinking milk. I am lucky there are a lot of foods I can eat that others can't.

I take Clariten and add in some Dimetapp when really itchy but it just masks the issue, doesn't fix it.

A week or so ago I cut down from two Losec a day to one with a Zantac. Tomorrow I hope to go to two Zantac a day. The itchiness is driving me crazy, I really need to get off PPI's. Hopefully I have learned to control my reflux and can make the switch to H2's. I was on Pepcid for 15 yrs and never had the issues I am having with PPI's.

vinylmasters
Regular Member


Date Joined Feb 2013
Total Posts : 34
   Posted 2/20/2013 9:18 AM (GMT -6)   
Johnah - your NOT alone on having issues with PPI's, believe me. Some do just fine on them, but for others it's just brutal - almost like a poison. I find myself alternating between Zantac 150's and Pepcid and do pretty well on those with carafate at night (although that binds me up badly is I use too much of it). But I did the 'full monte' with PPI's, and I'm not going there again.

Johnah
Regular Member


Date Joined Nov 2012
Total Posts : 34
   Posted 2/20/2013 3:41 PM (GMT -6)   
That's where I am at Vinyl , got to get off them. I think I have learned how to live without them now. I had no idea before last year of the problem that reflux could be. Now I know the triggers and have adjusted my lifestyle. Still drink coffee , but just the odd one and de-caf only, watch sugar obviously and try to stay away from acidic foods, drink a lot more de-caf tea and not a lot of alcohol (that I don't miss) , try not to overeat and stay away from most food 2-3 hrs before bedtime. Try not to let much anxiety slip into my life and when it does I go work out. Long process though to really understand what works for me and what doesn't. I expect that the H2's like Pepcid and Zantac will be part of my life though. My mother had issues with an acid stomach most of her adult life as well, seems I inherited more than her good looks turn

Sharii
New Member


Date Joined Mar 2014
Total Posts : 2
   Posted 3/6/2014 3:39 AM (GMT -6)   
I am experiencing many of the same symptoms to include the symptoms of pain, burning and blurred vision in my left eye. I have eliminated gluten and dairy from my diet and the PPIs and H2 blockers only agrevate my symptoms. I am very interested in learning more about the vitamin defeciencies mentioned here in this post.

Vickyandcraig
New Member


Date Joined Feb 2014
Total Posts : 12
   Posted 3/6/2014 11:17 AM (GMT -6)   
I could of wrote this myself mine also started 3 years ago out the blue it's devastated me I can't find help my doctors just say anxiety but it's not I have an hiatus hernia how big I have no clue big enough to make me feel like I'm dieing
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