Help/advice on a complicated case of GERD/reflux/digestive issues?
I'm not sure whether I'm in the right part of the forum, but I’m wondering whether anyone who has had experience with GERD/NERD, IBS, or acid reflex has some advice to share. My sister M, now 30, has develop a horrible case of acid reflux and GERD over the last year or two. She is now in pain at almost every meal—yet until a few years ago she never even got heartburn. We are trying to figure out what might have caused this, and I am wondering if you might be able to offer some advice. Here is some background to development and some information that my parents think might be relevant—apologies in advance for the length.
M has always had some trouble with IBS/digestion, such as gas and constipation and occasional diarrhea (but not heartburn). Part of this may be due to the fact that she has Down syndrome, as people with this condition often have lower digestive motility. But IBS has also been an issue in our family. A few years ago I discovered that I have a gluten and casein intolerance and also cannot tolerate grains, nuts, and some other stuff very well—so I went paleo-ish by default. My father has also discovered that gluten caused many of his IBS problems, and my other sister has just figured out that she cannot tolerate dairy or FODMAPs. Before all of her digestive problems started, M was drinking milk at every meal and eating essentially a SAD—in fact, I had just persuaded her to give up milk to see if it helped with some respiratory symptoms before the episode that I think might be related to her development of acid reflux.
Here is the episode I have in mind. About 18 months ago, M had a bad respiratory infection/pneumonia. She was put on two weeks of antibiotic (sulfa) along with ten days of Prednisone. Unbeknownst to all of us, she was (quite severely) allergic to the antibiotic, but because she was also on the Prednisone, the symptoms of the reaction were entirely masked until the steroid wore off. She ended up in the hospital (with severe vomiting) *after* the Prednisone had run its course, but at that point she had the offending substance in her system for ten days—I can only imagine the number it did on her insides.
Now, the acid reflux did not start immediately after this episode, but she did (I think, though I don't quite remember?) begin to have some increased digestive issues. I suggested giving up gluten and dairy, which she tried, but even so there was not much improvement, and then she started developing the pain in her sternum/esophagus. (In fact, my father even wondered whether going off the gluten might have caused an increase in stomach acid leading to the pain. Since going off gluten he has become aware of his own case of acid reflux—although his is not painful. I suspect the gluten-reflux thing is just a coincidence, but perhaps not.) My hypothesis is that the reaction did a number on her digestive system that has somehow led to the development of the reflux, but because the reflux did not start immediately it is hard to support this claim—and the doctors are, of course, totally skeptical.
For over a year, now, M has found that the only things she can eat are eggs, very plain fish and meat, squash, carrots, potatoes (including potato chips without salt), butter, and gluten-free pancakes and cake made from rice flour. She can’t eat fruit, and many vegetables are also off-limits. In addition, she cannot tolerate salt or really any spices—garlic, onion, tomato, etc. (My poor mother is dying trying to cook with some variety under these restrictions!) Even with the very restricted diet, she often has some pain if she eats a largish amount or sits for too long. We also have her bed elevated and angled and she is getting regular exercise. Exercise is one thing that seems to help relieve her pain.
Aside from the pain at meal times, she is constipated and has a lot of gas, which seems to cause reflux pain between meals—one of our theories is that the gas bubbling in her stomach is pushing acid up towards her esophagus and causing some of the pain. Some of her digestive problems may be due to her naturally lower motility, and I fear that part of it is also due to the (constipating?) high-protein diet she has resorted to eating. We thought perhaps there was some connection to FODMAPs and have tried the low-FODMAP diet, but there are many foods allowable on the FODMAP plan that she cannot eat without pain. To make things more complicated, there seem to be two separate issues here: Some foods seem hurt instantly, on the way “down”, so to speak. Other foods may cause gas once in the stomach—which might more plausibly have something to do with FODMAP-like features and may cause pain later on. (M has a hard time understanding that things that don't hurt on the way down might still be responsible for pain later.)
My father suspected for various reasons that M might have had some physical damage to her digestive tract—partly because she hurt herself one day practicing a rather violent “dance move” (her words), so we wondered whether there was some structural damage. But she has had medical procedures to inspect her esophagus and digestive tract; aside from a slight redness, the doctor has not been able to find any sign of irritation—no tear or anything. It is really bizarre. Her only official diagnosis is GERD/NERD.
Fortunately, other than the pain, she seems very healthy. Her immune system seems better than it was in past years (she works in a pre-school and so is exposed to lots of germs) and she is at a much healthier weight since making these dietary changes.
Still, she is *very* unhappy in general and also with the lack of variety in her diet. She is also in a fair bit of pain, and the pain actually seems to be getting worse. We are racking our brains for ideas about what else we can try to help. Right now, she is on a very strong acid-inhibitor (Dexilant), but I am worried about the long-term effects of this. I have encouraged her to go off of it; she tried it for a few days but found it painful. (We also tried her very briefly on a mild anti-depressant, since the doctor said that can sometimes help with NERD, but she found the pill too painful to swallow.)
Another complicating factor is that M does not cope well with change and experimentation, and she is very fearful of trying something that might cause pain. The fact that she has had to make such radical dietary changes has been quite traumatic for her. (She is a creature of habit, and she used to eat chicken nuggets, french fries, and milk almost every day for lunch—so you can probably imagine.) While we have tried fiddling with various different things over the last few months, she is at the point now that it is very hard to get her to deviate from her set course and very upsetting for her if a suggested deviation does not work, which means that we don’t want to coax her into trying something new if we are not pretty sure it might help—and at this point we have no idea what will help. And, of course, getting upset can make the reflux worse, so we are trying to keep things on an even keel.
I know a natural thing to try, for instance, would be to eliminate the cake, since it is likely constipating and there may be a chance that it is feeding some sort of yeast overgrowth, but we will not be able to do this without some serious resistance—and I hate to ask her to give up one of her remaining sources of dietary pleasure if it doesn’t actually make a difference. She also refuses to take probiotics or fish oil or anything that “might hurt”. Our doctors are essentially at a loss but keep prescribing the acid inhibitors.
So, all of this is a very long-winded way of saying that I have three questions:
(1) Do you have any suggestions for addressing the constipation? Would, for instance, increasing dietary fat be worth a go? If so, any suggestions for how to do this or what fat source might be best under the circumstances?
(2) Any hypotheses about what may have caused the reflux/GERD? In particular, do you think there might be a connection to the antibiotic reaction? Or is it common for reflux to develop without any precipitating event? Is a yeast overgrowth likely?
(3) Do you have any general advice for treating GERD or relevant digestive issues?
Many, many thanks in advance for your help!