- This topic has 7 replies, 5 voices, and was last updated 12 years, 11 months ago by
.
-
Posts
-
We want to cut back on as many of my wife’s prescriptions as we can; tapering off prednisone was a big deal; I’m glad that is gone. Next step, cutting out the PPI seemed like a good idea at the time, but now I’m having doubts.
During her 9 months taking a PPI (lansaprazole), my wife had mostly good days and some off-days.
(We started doing anti-GERD lifestyle things at the same time, e.g. raise the bed, don’t eat before sleeping…)Recently we dropped the PPI and replaced it w/declycerized licorice + hcl/pepsin + tagamet with meals for approx 3 weeks. (Thankfully none of the acid-rebound I’ve read about; it’s good to be lucky.)
Now after 1-month PPI-free, she has good days… and some off-days; the intensity & frequency seems about the same.
We haven’t (yet) been able to correlate the off-days with any specific behavior or food.Our rheumatologist just recommended my wife continue PPI; in fact, they said they recommend it for all systemic scleroderma cases since “reflux is 40% of the time completely asymptomatic even when there is active reflux going on.” The implication would be it damages the esophagus & “valves” without any indication of pain.
Hrrmm – hence my doubt.I don’t like PPI’s long-term issues, but I also hate to think about doing long-term damage to her esophagus.
I’d welcome advice for tests or other things to look at to see if PPI’s may actually do more good than harm in our case.
Thanks, Johnp.s. my oh my
Now I just read another thread talking about hypo vs. hyper stomach acid, so I’m ordering a book (“Why Stomach Acid Is Good for You” as per one of MMW’s posts – which is swell, what with knowledge being power and all that 🙂 ) to try and learn more about this.John,
I can understand that feeling of once you get off one drug to see if you can whittle away at other things too. I’m sorry I’m not up enough on GERD to offer any real advice. It is concerning to think that she could have silent damage to the esophagus without any knowledge that it is going on. Of course, taking a drug when possibly you don’t need it is another negative.
When you say she has tried to connect the GERD to any food and hasn’t seen anything, has she tried gluten free? Gluten free for a long period of time?
Hi there,
I have similar GERD issues (I guess mine is NERD) and have chosen to stay off PPIs, as they cause very strong side effects for me which take away greatly from my quality of life. I did not have luck with the DGL myself, but have found a lot of relief with avoiding the particular set of foods that seem to trigger me and also with the liberal use of probiotics. One thing that really helped – I saw an allergist and they did skin testing to see what foods I actually had allergies to. It turned out that I was allergic to many things that I did not realize, including soy and rice and almond butter… stuff I was eating every day. My particular form of allergy came as gut inflammation, meaning that I didn’t get hives or itchy but there was definitely a true allergic reaction taking place every time I ate that stuff. Since I began avoiding those foods strictly, I have had tremendous relief from the GERD. In fact, I only began to experience problems with reflux again when I went on antibiotics (especially Zithromax) and I have found that if I take those with food, my reflux is much better.
Digestive enzymes are also very useful for GERD – as are systemic enzymes. You might look into Wobenzym and Neprinol, neither of which seem to work for me personally but I have heard great things from others on this board about them… and I used an enzyme called Qzyme by Garden of Life and it worked quite well until my rice allergy got out of hand. Another suggestion that I tried out for my reflux was apple cider vinegar with honey.
If you are truly concerned you might want to see about having your wife go to a GI to get an esophagoscopy done (I got at TNE which is through the nose) to check out her esophagus and see how it is faring once she gets off the PPIs for a while. I have had really bad heartburn for at least 20 years before I started down this diagnosis path and it turned out that despite the heartburn I had no erosions at all in my esophagus – I apparently have NERD rather than GERD which is non-erosive reflux disease. People with NERD don’t have to be as concerned about using PPIs because they are actually at very low risk of developing Barretts or esophageal cancer.
I plan to have my esophagus checked every 3 years to make sure that it isn’t truly necessary to use a PPI. So far, so good.
Best wishes to you and your wife!
Warmly,
APS – she was very blessed not to deal with the hideous rebound acid from those PPIs. I’ve been through that this year and it was wretched. Ick!
I have been using Braggs apple cider vinegar everyday and it worked. Please have her try it. I got it through vitacost.com
but I am sure you can find it at any health food store. I finally got off of Prilosec! Sometimes, I get nausea but that is from another issue I have. Please try it and read reviews on that site too, lots of good info.
KerryThank you all for the ideas.
Parisa – gluten free: not for a long period of time.
Her diet is something of a challenge – she decided to
go vegetarian about a year ago.
We recently had an E-85 allergy panel done and she has
antibody reactions to dairy & eggs (and soy & almonds).
So she wasn’t aiming for vegan but practically speaking,
her options are more limited than I wish they were.
Oddly enough, nothing for gluten. Pity about the dairy
though; I was looking forward to trying some of the
undenatured whey I read about on this board. I worry
a little about getting her sufficient protein.
Anyway, I do think keeping away from flour & bakery items
helps; I’m not sure it’s a gluten specific.HopefulMama – thanks for the diet points.
Looks like I’ll need to do some menu planning to stay clear
of the allergy flags.
Also thanks for the esophagoscopy idea; we’re meeting with
a doctor tomorrow morning and I’ll look forward to talking
about that with them.
(And you’re right about the rebound;She does have a consistent cough; low-frequency (every 2 or
3 hours). I’ll also be asking the doctor if that might be
gerd related; maybe not a normal cough so much as some
collateral damage from gerd/acid. *shrug* (doing some testing,
just to get a baseline about the current condition of that plumbing
if nothing else sounds like a good idea.Kerry23 – thanks for the apple cider idea.
I’m going to be reading up on that and the overactive/under active
stomach acid book. Lots to learn 🙂
JohnHi A;
My SD was rather severe but today I am about as well as I can ever be,just little aches and pains now and then.At the beginning of this disease I did the PPI bit but soon dropped them as god old Tums worked just as well.Then I found out about digestive enzymes and in a couple of weeks I did not have any more reflux.Doctor explained that my food was sitting in my stomach way too long and that was what was giving me the reflux.I just use the GNC brand that is a mix of several enzymes.I big bottle of 120capsules is about 30$
I had many food sensitivities,all nightshades,legumes,citrus,anything “cow”,anything with sugar cane products, eggs,food dyes and preservatives.For the best part of 2 years I lived on chicken,porc and salads.Doctor told me that meat protein is crutial for SDers so try to get your wife to eat some,preferably organic.Today I can eat almost everything except legumes and potatoes.Apple cider vinegar acts like a digestive enzyme so use that kind when doing a salad dressing.
I could write a book about my fun with SD but have to rush,thousands of orchids need repotting.
LynneMy husband started to see a biological dentist while he was sick and this doctor is a huge vegan fan. My husband had a hard time keeping weight on and the last thing I wanted to do was mess even more with his diet (he was already gluten free at that point). I followed up with the LLMD and he told me definitely not, that this type of disease requires extra protein and a vegan diet would be contraindicated. Of course, there are people out there that say they have cured all sorts of conditions by going vegan.
As far as gluten, did your wife do a gluten sensitivity test through Enterolab? They use a stool sample which is much more sensitive. The blood tests don’t accurately test for gluten. Here is an excerpt regarding gluten from Nicola McFadzean’s Lyme Diet book:
“Since gluten protein molecules are not digested well by humans (we lack the enzymes to fully break them down), those who are gluten sensitive develop an immunological reaction to the molecules,
which then starts to inflame and destroy tissues in the body (this is an autoimmune reaction – our own immune system attacking our own tissues). Consequently, normal tissues become damaged, preventing growth and regeneration.
Reactions to ingestion of gluten can be immediate or delayed for weeks or even months. Some people with gluten intolerance experience digestive symptoms such as gas, bloating, diarrhea/constipation, heartburn and abdominal pain.
Gluten can also contribute to joint and muscle pain, depression, irritability, muscle cramps, fatigue, headaches/migraines, skin rashes and hormone imbalance, just to name a few.”
Lynne – thanks for the advice.
r.e. enzymes – that makes a lot of sense.
I really will be happy if it turns out the “Acid” Reflux
was actually “Not enough acid so the food sat around
for a while and was kicked back up” Reflux.r.e. animal protein – I’ll do what I can.
I’m hoping she’ll consider fish maybe once a week. 🙂
That is low on our priority list now (our next
“big” project is working on replacing amalgam fillings…
but that’s a different topic).Parisa – thanks for the Enterolab reference.
That sounds very interesting.r.e. extra protein
I find it very interesting that the LLMD you talked with said this
type of disease required extra protein, so therefore a vegan is a bad idea.
You must be logged in to reply to this topic.