How has the diet been working for your husband? I have not started it yet as I just got the book delivered in the mail a few days ago. I have read through it and am excited to try it but I have a few things I want to finish going through before changing things up again.
Since I posted I am feeling better but still far from normal. Here is an account of what happened and what changed in case you are interested in my journey so far: (not I still do not have an official diagnosis from any medical professional)
– My abdominal CT came back clean. Both my doctor and the GI doctor (more on this later) didn’t see anything. He also suggested trying some pancreatic enzymes to see if that helps.
– switched back to dexilant 60mg once a day. I take it around 5:30PM so I have good protection at night.
– I started talking vitamin D and Calcium and Magnesium supplements. I feel something there really helped with depression or making my mood better. (not 100% but quite a bit better). I also switched to a more potent (30 billion from 5 billion) probiotic.
– A stool test for bowel inflammation came back a bit high. High enough for my doctor to finally refer me to a GI but the GI said that at that level they don’t do anything.
– I went to see a Naturopathic Doctor. She said that she often sees this and my stomach and intestinal linings needs to heal and when they do my food sensitivies should reduce. She gave me some supplements for protecting (villicote) and healing (intestamine) by stomach lining and some more complete enzymes to try. She also replaced my vitamin D, calcium and mag with a liquid form cause she said I will absorb it better.
She also adjusted my diet a bit. I was already basically only on chicken, ground turkey, eggs, fish, spinach, rice, sweet potatoes, squash, bananas and melons. She put me on a hypoallergenic/elimination diet for 4 weeks (I am on week 3 now). The biggest adjustment was removing eggs but otherwise it stayed the same.
– I ordered a MedCline pillow and returned my wedge. It is much more comfortable but I still wake up every night.
– a couple of days after seeing the naturopath I started feeling better. I am not sure if it is because of her treatment or things were starting to calm down internally. I suspect a combination of things.
– I continued seeing my accupuncturist. I think it helps with some symptoms and is a little stress relieving.
– was lucky and able to get to see a GI doctor relatively quickly (1 week ago today). He said he things I ate something that made my digestive system go crazy and that things could improve over time (months) with treatment but he wants to do some more tests to confirm or rule out things. He mentioned something similar happened to him but he had diarrhea instead of cramping pains but he also could not lie down or bend over without pain. He also had burping as a symptom of his reflux.
I told him I am concerned about LRP/reflux and being on PPIs long term so he is going to do an endoscopy next. That is scheduled a month from now. As I mentioned he wasn’t too concerned with my calprotectin levels and he said my CT looked really good so he didn’t see the need for a colonoscopy at this point.
The bad part about the visit is that he recommended I add 2 things. Benefibre a couple of times a day which I wasn’t sure about since I was pretty regular. And Elavil (anti-depressent) to calm down the nerves in my gut. I was pretty apprehensive about the drugs but tried them but I am now weening off of them. More on this later.
– I am in the process of getting a new family doctor because mine is dropping patients due to working more at the hospital now. I am fine with that since I didn’t think we were a good fit for each other. I am meeting a doctor I am hopeful about this week who seems quite experienced and has a spouse that is a GI doctor I believe.
So my current main symptoms issues are these:
– There is still something going on with the whole reflux/LPR thing but I am trying to sort out what is what as I wait for the endoscope and likely more consultation.
1) Near the 22 hour mark after taking my daily PPI I seem to notice a slight burning feeling in my stomach. I thought it was whatever I was eating but it doesn’t seem to matter. I suspect it has something to do with the PPIs wearing off enough that my stomach starts producing more acid. I don’t know if it is overproducing or not though so I am scared to wean off the PPIs at this point since I still have some symptoms.
2) I get a slight feeling of having a harder time breathing and a slight cough (like a light dry cough a few times an hour). This also only seems to start later in the day. I wake up typically feeling OK. Again I am suspecting that this may have something to do with the PPI wearing off enough that acid reflux is irritating my esophagus and doesn’t calm down till after I sleep. Last night I had bad sleep and woke up with a bit of a feeling of air trapped in my chest and I seem to have the slight cough already (before noon)..
3) Something is irritating my throat. At first I thought it was reflux for sure but now I am not so sure. At one point I added some more “safe” (according to the hypoallergenic diet guide) foods such as gluten free oats, blueberries, apples, honey, etc.. to my diet. Before that my throat seemed mostly OK but about a week ago it got really irritated, I started getting a funny (almost metallic) taste in my mouth and a bit of congestion. I pared back the foods I added, switched back to a tablet form for vitamin D, Calcium + Magnesium cause the liquid now seemed to irritate my thoat, and went to vitamin B12 only twice a day and a couple of days later my throat felt a lot better. I suspect it was apples. However, I still noticed it would get irritated a little, so more recently I stopped eating bananas and now I don’t seem to have the throat irritation anymore.. Still the cough though.
– I am not able to sleep through the night. Even with my much more comfortable Medcline pillow. I don’t know what is waking me up now. In the early days it seem to be either pain or being physically uncomfortable with the way I was sleeping. Now I don’t know as when I wake I typically don’t feel any pain or discomfort. I am hoping it is not sleep apnea but I heard that commonly goes with LPR.
Side note about the Elavil. One side effect is that it is supposed to make you sleepy and drowsy. It did for the first day and I almost slept the entire night but every day after that it was back to the same but some nights I had an elevated heart rate that was kind of scary. The pharmacist I asked said it is from my blood pressure dropping cause of the drugs and once in awhile my heart has to pump faster to get things going again. I didn’t like that at all and on top of my it seemingly only to help with stomach pains/spasms which were becoming less of an issue at this point anyways, it didn’t seem to be worth the risks. My GI doc dropped the dosage (from 25mg to 10mg) but I still had the faster heart rate problem but less drowsiness. In any case, I am weening off of it and will stop it today or tomorrow. (on split pill right now so only 5mg). My advice would be don’t take it unless you have severe symptoms. It might have helped a month ago but not now. Also since another side effect is constipation and slowing everything down in your digestive system, it seemed counter productive for me. I don’t have diarrhea but I suspecting some slow emptying problems.
– other abdominal pains are still there but pretty light and less frequent it seems. In any case, they don’t worry me as much now. Likely because they seem to be getting better and I haven’t had any significant flare ups (knock on wood)
– Chest/rib pains are still bothering me. I can’t seem to do anything with a lot of arm movement or things with much impact without these pains flaring up. They aren’t really bad at this point but they are there every day. I use a heat pad on the area whenever it comes up. It is usually in my chest area but sometimes on my sides or lower ribs. Anxiety may also be a bit of a trigger for this.
– I developed some light back pain which I attribute to muscle loss and posture and more disturbingly some rectal pains which at first felt like pressure but now it is sort of like a sore tailbone feeling. I think it is muscle related (like ani levator syndrome) because it is relieved when doing certain stretches or sitting). It mostly kicks up when I am at home cooking or washing dishes. Maybe too tense when I am standing. I had been reading some John Sarno and he mentioned that TMS sometimes kicks in when doing certain activities so maybe there is something there.. Cause when I am standing around at work or other places it doesn’t seem to happen. Mostly at home..
So to wrap up a very long post here is what I would recommend to date:
– listen to your body and try to make adjustments. Things like deep breathing, meditation, stretching etc.. relieve pains and anxiety. Foods of course seem to have a lot of impact when your digestive system isn’t right so either track it carefully or slowly add foods one at a time and give time to notice effects.
– challenge any drugs that doctor want to prescribe so you can make the right decisions. Are they integral for your healing or just for symptom management. Is it worth the trade off?
– Stay positive and try to enjoy the good things around you like your family etc.. Minimize the time you search on the internet for answers. I find this hard but now I mostly look for things that will help me (eg. diet advice etc..) or good news stories. Getting sucked into reading all the potential things you could have and depressing stories won’t help your anxiety and that will make things worse.